Little Miss Pardon lived in a little house in a place called Hearingtown. Everyone could hear from a mouse sneeze to giants footsteps without any problem.
Little Miss Pardon couldn't hear properly and found it difficult to meet people and understand them.
One day Little Miss Pardon met Mr Quiet. "Mmmm" said Mr Quiet. "Sorry" said Little Miss Pardon, "I can't hear you, can you speak a little louder?" "Mmmmmmm, mmmm" he said a bit louder. "I'm sorry I still can't hear you", and off she went. How rude thought Mr Quiet. Little Miss Pardon felt sad and silly at not being able to hear and be able to talk to Mr Quiet.
Next day Little Miss Pardon met Mr Noisy. "BOOM, BOOM, BOOM" he said. "I am sorry" said Little Miss Pardon, "could you say that again a little quieter?" "BOOM, BOOM, BOOM" he said again almost as loud. "I'm really sorry" said Little Miss Pardon, "but I really can't tell what you are saying", and she went on her way. How rude thought Mr Noisy, I thought shouting at deaf people was helpful.
How sad Little Miss Pardon thought, I wish Mr Noisy were not so loud, it makes the sounds funny and I can't hear them properly. I would like to have a nice peaceful chat.
Later she met Mr Rush. "Blah, Blah, Blah" he said zooming around. "Sorry" said Little Miss Pardon "please could you stand still when you talk to me?" "Blah, Blah, Blah" he said again, still rushing about. "I'm so sorry said Little Miss Pardon, "I have no idea what you are saying," and she went on her way. How rude thought Mr Rush. How sad thought Little Miss Pardon, I wish people could keep still when they speak to me, so that I can understand them better.
The next day she met Little Miss Chatterbox. "Blah, chat, boom, Mmmmmm, Mmmmm" she said. When Little Miss Pardon could get a word in, she said "sorry I can't tell what you are saying, would you slow down a bit?" Miss Chatterbox was already talking about something else. "Blah, Blah, Mmmmm" she said. "I'm really sorry," said Little Miss Pardon, "I really have no idea what you are saying, and off she went. How rude thought Little Miss Chatterbox. How sad thought Little Miss Pardon, I do wish people would slow down and pause so I can tell what they are saying. I feel so silly, but would love a chat with Little Miss Chatterbox.
By now Little Miss Pardon was getting fed up of not being able to understand and thought she would be better not meeting people at all.
She decided to give it one more try. Before long she met Mr Rude. "Meh, Meh, Meh" he said facing away from Little Miss Pardon. I'm sorry said Little Miss Pardon, "but I need you to look at me so I can tell what you are saying." "Meh, Meh, Meh" he said again looking in the other direction. "I'm sorry, I can't tell what you are saying" and she went on her way really fed up at having no one to talk to.
On her way home she met Mr Perfect. He looked at her and in a nice clear voice said, "Good afternoon" "Good afternoon Mr Perfect" she replied. "What a lovely day for a chat," continued Mr Perfect, perfectly. "It is indeed," said Little Miss Pardon, "it's so nice to be able to hear you and chat with you." After a while Mr Perfect and Little Miss Pardon said goodbye. Little Miss Pardon felt much happier and didn't feel stupid any more.
On his way home Mr perfect thought, what a lovely person to chat to, I really can't understand why people think Little Miss Pardon is rude and stupid.
Remember next time you speak to someone, speak in a nice clear voice, not too quiet, not too loud, stand still and look at them and you might well be their Mr Perfect.
Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts
Tuesday, April 05, 2016
Thursday, January 21, 2016
Little Miss Brainfog
Little Miss Brainfog lived in a normal house in a normal street, surrounded by normal people.
Little Miss Brainfog also looked normal, but had an illness with and extraordinarily long name, Myalgic Encephalomyelitis, which it is easier to call ME.
Like it's name Myalgic Encephalomyelitis is also rather complicated and extraordinary.
The illness made Little Miss Brainfog feel like ; Little Miss Dotty, Little Miss Scatterbrain, Little Miss Fickle, Little Miss Whoops, Mr Bump, Mr Topsy Turvey, Mr Forgetful, Mr Lazy, Mr Muddle, Mr Dizzy, Mr Grumpy, Mr Clumsy, Mr Worry, Mr Slow and Mr Grumble all rolled in to one.
Along with a few others that you may not have heard of before such as Little Miss Ouch, Little Miss Confused, Little Miss Sleepy and Little Miss Lonely.
In a morning when it was time to get up Little Miss Brainfog found it very difficult to get out of bed because of feeling unwell and tired. People thought she was like Mr Lazy, but she really wanted to be up and doing things like Little Miss Busy and Mr Rush.
Once out of bed Little Miss Brainfog used a lot of energy getting her breakfast and getting ready, it was hard work and she felt very like Mr Slow.
Little Miss Brainfog has difficulty doing things for herself and often needs help, this makes her feel like Little Miss Useless.
After getting ready Little Miss Brainfog tries to do things, but because of feeling ill and not being able to concentrate or think properly she feels like Mr Muddle, Mr Clumsy, Mr Dizzy, Little Miss Dotty, Mr Forgetful, Little Miss Scatterbrain and Little Miss Whoops all in one. This is what brainfog feels like and why she is called Little Miss Brainfog.
Little Miss Brainfog finds it difficult to get out and meet people and join in activities, people think she is like Mr Rude and Mr Uppity, but it's actually because of the brainfog and feeling so ill and in pain. All the other people in Normal Town seem to have fun and know lots of people and do lots of things. Little Miss Brainfog feels left out and lonely as well as being ill.
When Little Miss Brainfog does go out she feels like Mr Silly as she needs to use a wheelchair and people don't think normal looking people should use wheelchairs. As well as not being able to walk Little Miss Brainfog finds the light, noise and business of Normal Town very overwhelming and just wants to go home or find a place called peace and quiet land- which doesn't seem to exist.
Little Miss Brainfog has to rest during the day, but she really wants to be like Little Miss Helpful, Little Miss Busy, Little Miss Quick, Little Miss Tidy, Little Miss Fun and Little Miss Somersault.
Little Miss Brainfog tries her hardest all the time and wants to be like Mr Strong and Mr Perfect, but the harder she tries the worse the extraordinary illness becomes and she feels like another unknown Mr Pathetic.
Have you ever tried to run a marathon through treacle whilst in pain, with lots of noise and flashing lights around you, whilst carrying the weekly shopping? You haven't? This is what doing a very ordinary task feels like to Little Miss Brainfog, for example walking upstairs and then when you get to the end you become Little Miss Scatterbrain and forget why you are there and have to do the whole marathon again.
Have you ever been so tired that all you want to do is go to bed for a good sleep? Little Miss Brainfog feels like this all the time, but when she tries to sleep she can't, how very peculiar!
Have you ever spun around until you feel so dizzy you fall over? This is what Little Miss Brainfog feels like standing still. How bizzare!
Little Miss Brainfog might look normal, or appear to be like Mr Lazy, Little Miss Scatterbrain, Little Miss Whoops or Mr Rude. Actually she is some very special people inside like Mr Strong, Mr Impossible, Mr Clever, Mr Brave, Mr Good, Little Miss Splendid, Little Miss Star, Little Miss Wise, Little Miss Brainy and Little Miss Stubborn.
She would love to be Little Miss Sunshine, Little Miss Giggles, Little Miss Helpful, Little Miss Busy, Little Miss Busy, Little Miss Fun, Mr Happy, Mr Bounce, Mr Clever and Mr Busy.
So remember the next time you see a person they might not be who you think they are, appearances are deceptive.
Little Miss Brainfog also looked normal, but had an illness with and extraordinarily long name, Myalgic Encephalomyelitis, which it is easier to call ME.
Like it's name Myalgic Encephalomyelitis is also rather complicated and extraordinary.
The illness made Little Miss Brainfog feel like ; Little Miss Dotty, Little Miss Scatterbrain, Little Miss Fickle, Little Miss Whoops, Mr Bump, Mr Topsy Turvey, Mr Forgetful, Mr Lazy, Mr Muddle, Mr Dizzy, Mr Grumpy, Mr Clumsy, Mr Worry, Mr Slow and Mr Grumble all rolled in to one.
Along with a few others that you may not have heard of before such as Little Miss Ouch, Little Miss Confused, Little Miss Sleepy and Little Miss Lonely.
In a morning when it was time to get up Little Miss Brainfog found it very difficult to get out of bed because of feeling unwell and tired. People thought she was like Mr Lazy, but she really wanted to be up and doing things like Little Miss Busy and Mr Rush.
Once out of bed Little Miss Brainfog used a lot of energy getting her breakfast and getting ready, it was hard work and she felt very like Mr Slow.
Little Miss Brainfog has difficulty doing things for herself and often needs help, this makes her feel like Little Miss Useless.
After getting ready Little Miss Brainfog tries to do things, but because of feeling ill and not being able to concentrate or think properly she feels like Mr Muddle, Mr Clumsy, Mr Dizzy, Little Miss Dotty, Mr Forgetful, Little Miss Scatterbrain and Little Miss Whoops all in one. This is what brainfog feels like and why she is called Little Miss Brainfog.
Little Miss Brainfog finds it difficult to get out and meet people and join in activities, people think she is like Mr Rude and Mr Uppity, but it's actually because of the brainfog and feeling so ill and in pain. All the other people in Normal Town seem to have fun and know lots of people and do lots of things. Little Miss Brainfog feels left out and lonely as well as being ill.
When Little Miss Brainfog does go out she feels like Mr Silly as she needs to use a wheelchair and people don't think normal looking people should use wheelchairs. As well as not being able to walk Little Miss Brainfog finds the light, noise and business of Normal Town very overwhelming and just wants to go home or find a place called peace and quiet land- which doesn't seem to exist.
Little Miss Brainfog has to rest during the day, but she really wants to be like Little Miss Helpful, Little Miss Busy, Little Miss Quick, Little Miss Tidy, Little Miss Fun and Little Miss Somersault.
Little Miss Brainfog tries her hardest all the time and wants to be like Mr Strong and Mr Perfect, but the harder she tries the worse the extraordinary illness becomes and she feels like another unknown Mr Pathetic.
Have you ever tried to run a marathon through treacle whilst in pain, with lots of noise and flashing lights around you, whilst carrying the weekly shopping? You haven't? This is what doing a very ordinary task feels like to Little Miss Brainfog, for example walking upstairs and then when you get to the end you become Little Miss Scatterbrain and forget why you are there and have to do the whole marathon again.
Have you ever been so tired that all you want to do is go to bed for a good sleep? Little Miss Brainfog feels like this all the time, but when she tries to sleep she can't, how very peculiar!
Have you ever spun around until you feel so dizzy you fall over? This is what Little Miss Brainfog feels like standing still. How bizzare!
Little Miss Brainfog might look normal, or appear to be like Mr Lazy, Little Miss Scatterbrain, Little Miss Whoops or Mr Rude. Actually she is some very special people inside like Mr Strong, Mr Impossible, Mr Clever, Mr Brave, Mr Good, Little Miss Splendid, Little Miss Star, Little Miss Wise, Little Miss Brainy and Little Miss Stubborn.
She would love to be Little Miss Sunshine, Little Miss Giggles, Little Miss Helpful, Little Miss Busy, Little Miss Busy, Little Miss Fun, Mr Happy, Mr Bounce, Mr Clever and Mr Busy.
So remember the next time you see a person they might not be who you think they are, appearances are deceptive.
Friday, November 20, 2015
What is the point?
I wrote this nearly a week ago, but feel so ashamed it has taken until now to pluck up the courage to share it and I still don't know if I am doing the right thing.
1am 14th November
Can't sleep again, so upset and overwhelmed with life and possessions. I am so ashamed and upset at all the craft stuff I have most of which will never be used as I don't have the ability, time or energy to use it. Today I wore myself out looking for something, there are so many places to check and so much stuff to go through, things are still not back to normal after building work so makes finding things all the harder. So many unused things, so many UFO (unfinished objects), it's madness. I dread to think of the cost of it and the cost of things to store it in too.
We are always saying we can't afford the things we would like and we would get pleasure out of, yet we have boxes and cupboards full of stuff that costs money. Not just craft stuff; books, toys, kitchen stuff, tools and gadgets and clothes, and once bought it is all worthless. My husband tell me they are sunk costs.
"In economics and business decision-making, a sunk cost is a cost that has already been incurred and cannot be recovered. Sunk costs are sometimes contrasted with prospective costs, which are future costs that may be incurred or changed if an action is taken." Wikipedia
How did we get it all? It's scary and gives no pleasure at all, just stress and guilt.
What makes me think that any purchase will get used any more than the previous ones?
What right do I have to send money I don't earn?
When I spend so stupidly how can I say we can't afford things we need or help we need when I have hoarded so many things, it's so wrong.
Even if I started now I could never use up all the stuff and of course trends and interests change so much of it becomes obsolete unless you are very creative, which I am not.
My husband earns all the money for me to squander it on useless stuff including clothes and shoes etc which mostly go untouched as I rarely wear anything special as I am alone in the house most of the time only get out for the school run.
He also funds my disability needs as I have no income. I had an assessment the other day for my social care funding and my income is a grand total of £21.80 per week. I get no benefits because of inconsistent NI contributions and because my husband works. The cost of illness and disability is quite high; wheelchair, scooter, prescriptions, glasses, hearing aids, walking stick. I am a huge liability and give nothing in return.
It's doubtful that even these purchases are worth it, my wheelchair is probably the exception, but it's in a poor state. I am still reliant on others even if I use my wheelchair as it is attendant propelled and I couldn't manage on my own. I don't like using the wheelchair, but it means I do get out of the house. When you are in the wheelchair you do become invisible and people don't talk to you in person and they have little consideration and you are just at the level of everyone's, bums, elbows, bags and cigarettes too! I have a walking stick, but find it a pain to use. I have a mobility scooter, but rarely use it as I cannot get it in and out of the car so can only use it from home and the weather is rarely good enough to use it, can't be used in the rain and I feel cold very easily and it does require concentration to use it where as in a wheelchair someone else controls it. My daughter has been teased at school because of my wheelchair and walking stick. My daughter hates the wheelchair as it means she has to be independent when we are out and feels she is being ignored as my husband is pushing me, she is not quite big enough to push me herself which she doesn't mind doing and she is too big to sit on my knee which she could do when she was younger and made busy places easier to cope with. I have been having a discussion this week about getting a stick with a seat for doing school, but It's only for doing school to go from car park to classroom the rest of the time I use my wheelchair so can't really justify another piece of equipment and daren't give anyone more reason to pick on Emily. I find my normal stick a nuisance as it is so assume seat stick would be more so and in the busy playground I am likely to end up on the floor whilst trying to balance on the seat. It has only become an issue now it is too cold and wet to sit on the floor!
Hearing aids do help, but also cause a lot of stress, I am currently without one as it needed to be repaired and the cost of purchase and maintenance costs is unbelievable, but it became too difficult to get NHS ones and to travel to appointments and to collect batteries etc.
Prescriptions are probably not that worth it either, but it's the only treatment on offer and at best they mask symptoms, but often are of no benefit and take a lot of time and effort to obtain.
Glasses are a new thing to me, so no idea if they will be much use, I am sure most of the time I will have no idea where they are. I chose the cheapest pair in the shop, but was then charged more than the glasses to have an anti glare coating on them due to my intolerance to bright light! organisations sure know how to make money out of peoples needs.
Once upon a time we used to eat out and have nice holidays, but not now. Even though Rob earns more they seem unaffordable or an expense we can't justify. We thought things may improve a bit as Rob has got a promotion, but guess what? He won't get more money, just more work and more responsibility! It's a job he really wants to do so is taking it, it can't be all about money all the time, but it seems very unfair.
I am so stupid and not setting a good example for Emily about how to manage money or about finishing projects and managing time. Last night she was watching Grand Designs and said she would like the house. I said we can't afford it, she asked how much it would be. I told her it would be several Million and she said well just go to the bank and get it, she couldn't understand that we don't have several Million in the bank, but then those programmes don't help as people borrow much more than they can afford.
I never stick at anything. I forget so many things I have learned or lose the ability to do things. I never have enough time or energy as it all goes on daily routine or searching for things. I feel so stupid and useless and hate living this way. It feels like my whole life has been a string of failures, inability to succeed, not finishing things or trying things I am not capable of.
I hate feeling this way, I am 44 and haven't achieved anything and never will. There is no point in looking for other things to try, I have more than enough to keep me going, but just don't/can't do it. I'll never achieve anything or move on or feel pride in things I do. You only have one shot at life and I have really messed up and don't know how to change that.
I am unemployable, of little help to anyone and not very skilled at most things. I know I am lucky to be able to afford some things and to have my house and family, but it's not the life I want for me or my family we are all pretty miserable most of the time.
I must look and sound like a spoilt brat, I don't deserve any of these things and I am not grateful for them as it makes me so unhappy and angry. I am so disillusioned with everything I try as it is never good enough or I need some sort of help or just find it too hard and it all becomes pointless.
What is the point in making things no one needs or is interested in?
What is the point of writing a blog that no one is interested in anyway, especially all my self pity?
What is the point of trying to make people aware of ME? What does it matter to those who don't have it? Why should it be taken more seriously or researched better it's of no interest or benefit to other people and those who don't have it don't need to know about it.
What is the point of writing stories I can't do anything with so they just join the rest of the things that will never be finished off properly or be of any use to any one?
What is the point of getting up each day to follow the same routine and to push beyond my limits and then be of no use to anyone and by the time I see anyone else all I want is my bed?
What is the point of being in bed if I can't sleep or rest properly so I am tired and ad tempered before the next day begins?
What is the point of trying when all I seem to do is make a mess of things or wear myself out even when my intentions are good?
What is the point of having a family if I am useless and a burden to them and unable to join in so many things.
What is the point of reading a book when you have no idea what you have read or buying a magazine only to flick through it and wish you could do all the crafts recipes etc?
What is the point of finding recipes that we never have the to make or don't have the ingredients for?
What is the point of trying to have nice meals or healthier food when much of it gets wasted?
What is the point in complaining when no one wants to hear or has any interest?
What is the point in soldiering on when it just makes things more difficult and is not appreciated?
What should I do?
What can I do?
Why does everything feel so wrong?
What is the point of me trying to sleep when it won't make any difference to how I feel in the morning?
What is the point in being awake and worrying about everything?
It's pointless, stupid, waste of time and energy.
What is the point in spending an hour writing all this rubbish?
1am 14th November
Can't sleep again, so upset and overwhelmed with life and possessions. I am so ashamed and upset at all the craft stuff I have most of which will never be used as I don't have the ability, time or energy to use it. Today I wore myself out looking for something, there are so many places to check and so much stuff to go through, things are still not back to normal after building work so makes finding things all the harder. So many unused things, so many UFO (unfinished objects), it's madness. I dread to think of the cost of it and the cost of things to store it in too.
We are always saying we can't afford the things we would like and we would get pleasure out of, yet we have boxes and cupboards full of stuff that costs money. Not just craft stuff; books, toys, kitchen stuff, tools and gadgets and clothes, and once bought it is all worthless. My husband tell me they are sunk costs.
"In economics and business decision-making, a sunk cost is a cost that has already been incurred and cannot be recovered. Sunk costs are sometimes contrasted with prospective costs, which are future costs that may be incurred or changed if an action is taken." Wikipedia
How did we get it all? It's scary and gives no pleasure at all, just stress and guilt.
What makes me think that any purchase will get used any more than the previous ones?
What right do I have to send money I don't earn?
When I spend so stupidly how can I say we can't afford things we need or help we need when I have hoarded so many things, it's so wrong.
Even if I started now I could never use up all the stuff and of course trends and interests change so much of it becomes obsolete unless you are very creative, which I am not.
My husband earns all the money for me to squander it on useless stuff including clothes and shoes etc which mostly go untouched as I rarely wear anything special as I am alone in the house most of the time only get out for the school run.
He also funds my disability needs as I have no income. I had an assessment the other day for my social care funding and my income is a grand total of £21.80 per week. I get no benefits because of inconsistent NI contributions and because my husband works. The cost of illness and disability is quite high; wheelchair, scooter, prescriptions, glasses, hearing aids, walking stick. I am a huge liability and give nothing in return.
It's doubtful that even these purchases are worth it, my wheelchair is probably the exception, but it's in a poor state. I am still reliant on others even if I use my wheelchair as it is attendant propelled and I couldn't manage on my own. I don't like using the wheelchair, but it means I do get out of the house. When you are in the wheelchair you do become invisible and people don't talk to you in person and they have little consideration and you are just at the level of everyone's, bums, elbows, bags and cigarettes too! I have a walking stick, but find it a pain to use. I have a mobility scooter, but rarely use it as I cannot get it in and out of the car so can only use it from home and the weather is rarely good enough to use it, can't be used in the rain and I feel cold very easily and it does require concentration to use it where as in a wheelchair someone else controls it. My daughter has been teased at school because of my wheelchair and walking stick. My daughter hates the wheelchair as it means she has to be independent when we are out and feels she is being ignored as my husband is pushing me, she is not quite big enough to push me herself which she doesn't mind doing and she is too big to sit on my knee which she could do when she was younger and made busy places easier to cope with. I have been having a discussion this week about getting a stick with a seat for doing school, but It's only for doing school to go from car park to classroom the rest of the time I use my wheelchair so can't really justify another piece of equipment and daren't give anyone more reason to pick on Emily. I find my normal stick a nuisance as it is so assume seat stick would be more so and in the busy playground I am likely to end up on the floor whilst trying to balance on the seat. It has only become an issue now it is too cold and wet to sit on the floor!
Hearing aids do help, but also cause a lot of stress, I am currently without one as it needed to be repaired and the cost of purchase and maintenance costs is unbelievable, but it became too difficult to get NHS ones and to travel to appointments and to collect batteries etc.
Prescriptions are probably not that worth it either, but it's the only treatment on offer and at best they mask symptoms, but often are of no benefit and take a lot of time and effort to obtain.
Glasses are a new thing to me, so no idea if they will be much use, I am sure most of the time I will have no idea where they are. I chose the cheapest pair in the shop, but was then charged more than the glasses to have an anti glare coating on them due to my intolerance to bright light! organisations sure know how to make money out of peoples needs.
Once upon a time we used to eat out and have nice holidays, but not now. Even though Rob earns more they seem unaffordable or an expense we can't justify. We thought things may improve a bit as Rob has got a promotion, but guess what? He won't get more money, just more work and more responsibility! It's a job he really wants to do so is taking it, it can't be all about money all the time, but it seems very unfair.
I am so stupid and not setting a good example for Emily about how to manage money or about finishing projects and managing time. Last night she was watching Grand Designs and said she would like the house. I said we can't afford it, she asked how much it would be. I told her it would be several Million and she said well just go to the bank and get it, she couldn't understand that we don't have several Million in the bank, but then those programmes don't help as people borrow much more than they can afford.
I never stick at anything. I forget so many things I have learned or lose the ability to do things. I never have enough time or energy as it all goes on daily routine or searching for things. I feel so stupid and useless and hate living this way. It feels like my whole life has been a string of failures, inability to succeed, not finishing things or trying things I am not capable of.
I hate feeling this way, I am 44 and haven't achieved anything and never will. There is no point in looking for other things to try, I have more than enough to keep me going, but just don't/can't do it. I'll never achieve anything or move on or feel pride in things I do. You only have one shot at life and I have really messed up and don't know how to change that.
I am unemployable, of little help to anyone and not very skilled at most things. I know I am lucky to be able to afford some things and to have my house and family, but it's not the life I want for me or my family we are all pretty miserable most of the time.
I must look and sound like a spoilt brat, I don't deserve any of these things and I am not grateful for them as it makes me so unhappy and angry. I am so disillusioned with everything I try as it is never good enough or I need some sort of help or just find it too hard and it all becomes pointless.
What is the point in making things no one needs or is interested in?
What is the point of writing a blog that no one is interested in anyway, especially all my self pity?
What is the point of trying to make people aware of ME? What does it matter to those who don't have it? Why should it be taken more seriously or researched better it's of no interest or benefit to other people and those who don't have it don't need to know about it.
What is the point of writing stories I can't do anything with so they just join the rest of the things that will never be finished off properly or be of any use to any one?
What is the point of getting up each day to follow the same routine and to push beyond my limits and then be of no use to anyone and by the time I see anyone else all I want is my bed?
What is the point of being in bed if I can't sleep or rest properly so I am tired and ad tempered before the next day begins?
What is the point of trying when all I seem to do is make a mess of things or wear myself out even when my intentions are good?
What is the point of having a family if I am useless and a burden to them and unable to join in so many things.
What is the point of reading a book when you have no idea what you have read or buying a magazine only to flick through it and wish you could do all the crafts recipes etc?
What is the point of finding recipes that we never have the to make or don't have the ingredients for?
What is the point of trying to have nice meals or healthier food when much of it gets wasted?
What is the point in complaining when no one wants to hear or has any interest?
What is the point in soldiering on when it just makes things more difficult and is not appreciated?
What should I do?
What can I do?
Why does everything feel so wrong?
What is the point of me trying to sleep when it won't make any difference to how I feel in the morning?
What is the point in being awake and worrying about everything?
It's pointless, stupid, waste of time and energy.
What is the point in spending an hour writing all this rubbish?
Friday, October 09, 2015
Pride and Prejudice Part 1
No, I am not on a trip to the library, but as usual trying to juggle everyday life and illness.
The book title kept popping into my head, I think because of the daily internal arguments over what I should be doing, could be doing, can do, can't do and what is best for me and other people all of which conflict making choices impossible. There is no concrete right and wrong but for each choice there is a consequence for my health or my conscience.
I have just been looking at definitions of pride. How can one word mean so many things, many of which conflict?! How can the same word mean "Consciousness of one’s own dignity." For example; he swallowed his pride and asked for help" or "but, have you ever had anyone try to make a mockery of you, try to take away your dignity, your pride, your own self-worth?" Whilst at the same time it can mean "The quality of having an excessively high opinion of oneself or one’s importance: for example "The ancient Greeks had a word for it - hubris which means excessive pride, arrogance." or "I had committed the cardinal sin of pride and this was my punishment." Quotes from Oxford dictionaries.
Often we say we have our pride meaning our dignity as we are ashamed of our needs and feel that people will be prejudiced against us. Prejudice being; "Preconceived opinion that is not based on reason or actual experience": for example "Some prejudices (preconceived opinions of an individual based on opinions about the many) have names such as racism, sexism, or ageism." (Oxford Dictionaries)
Why for example am I sitting here typing a blog when I feel really ill and know it is not good for me? Partly because I hate not doing something and I am very limited at the moment to what I can do, but mainly because I don't want to be thought lazy! Who is going to think I am lazy? There is only my daughter here and she is happily playing on the computer and for once not making any demands on me. There is the guilt that I have been at home all day when my daughter and husband have been at school, and work and working hard and my husband is not yet home from his 12 hour day and his train is running late, but he is probably sat doing nothing on the train or even asleep, except when he gets texts from me! And I feel like I have to go and tidy up the kitchen following mine and Emily's tea which was of the throw in the oven variety because Rob wasn't here to cook and I can't expect him to clear up a mess he didn't make even though it has cost me dear to make the simple meal.
It's not the sort of puffed up pride that I think I am too good and can't let other people do things, it's the shame of what I can't do and the shame of asking for help the need to keep my dignity intact sort of pride.
There is a lot of prejudice against people with ME, they are considered lazy or making up the illness and afraid to try things. So how are we lazy when the simplest of tasks can make us ill, but we are too ashamed to be seen as lazy or making it up so we try so hard only to be knocked back and made more ill. We are trying to save our pride. On the other hand if we accept our limitations and ask for help or claim to be disabled then we get the prejudiced view that we are not disabled or that somehow disabled people are lesser beings, so either way we can't win.
I am so ashamed when I take my daughter to and from school that I have to be allowed to park in the school car park instead of being proud of the fact that I do take her to school myself, but that's mainly because I am too proud to ask for help, confused? Yes me too! Today took another blow to my pride and had to use my walking stick even for the short distance from car to classroom because I could hardly walk and was feeling really dizzy, but I only gave in after quite a long argument with myself thinking that people would think badly of me or think I was looking for attention or sympathy. In reality people probably didn't even notice, but I felt ashamed and useless whilst I should have been proud of myself for my achievement or was I just too proud to ask for help when I needed it?
My other issue is my hearing loss and the fact that I have hearing aids. I won't admit that I can't hear or explain to people that I need them to speak clearer or speak up, I just let myself look stupid or ignorant which is not very dignified and does little to save my pride and I end up avoiding situations or conversations which also makes me look ignorant. I am sure that it would be much more dignified to admit the problem, but then people won't talk to me because I can't hear or they will treat me like I am stupid, again it's a no win situation for me.
Having a blue badge allows me a little bit of pride and dignity in that I can collect my own prescription or park near the entrance to a small shop or the library. Then my pride is shattered by those who don't think I should have one as I can walk a little and I become ashamed of my need and my pride in doing something for myself is taken away and replaced by guilt. Take my blue badge away and have lost my small amount of dignity and pride in the small tasks because I wouldn't be able to do then any more. Being unable to do these things would make me ashamed and guilty as I would have to swallow my pride and ask for help and would get the prejudice label of being lazy.
Well I do need to swallow my pride now and admit that I feel really tired, sick, dizzy and in pain and accept that I need to sit and do nothing or go to bed.
Watch out for Pride and Prejudice Pt 2 and also Sense and Sensibility which are currently spinning around in my head waiting until I can get them down on my blog!
As I am currently away from Facebook, where I share and promote my blog, please could you share this blog if you have found it interesting or useful. Many thanks
The book title kept popping into my head, I think because of the daily internal arguments over what I should be doing, could be doing, can do, can't do and what is best for me and other people all of which conflict making choices impossible. There is no concrete right and wrong but for each choice there is a consequence for my health or my conscience.
I have just been looking at definitions of pride. How can one word mean so many things, many of which conflict?! How can the same word mean "Consciousness of one’s own dignity." For example; he swallowed his pride and asked for help" or "but, have you ever had anyone try to make a mockery of you, try to take away your dignity, your pride, your own self-worth?" Whilst at the same time it can mean "The quality of having an excessively high opinion of oneself or one’s importance: for example "The ancient Greeks had a word for it - hubris which means excessive pride, arrogance." or "I had committed the cardinal sin of pride and this was my punishment." Quotes from Oxford dictionaries.
Often we say we have our pride meaning our dignity as we are ashamed of our needs and feel that people will be prejudiced against us. Prejudice being; "Preconceived opinion that is not based on reason or actual experience": for example "Some prejudices (preconceived opinions of an individual based on opinions about the many) have names such as racism, sexism, or ageism." (Oxford Dictionaries)
Why for example am I sitting here typing a blog when I feel really ill and know it is not good for me? Partly because I hate not doing something and I am very limited at the moment to what I can do, but mainly because I don't want to be thought lazy! Who is going to think I am lazy? There is only my daughter here and she is happily playing on the computer and for once not making any demands on me. There is the guilt that I have been at home all day when my daughter and husband have been at school, and work and working hard and my husband is not yet home from his 12 hour day and his train is running late, but he is probably sat doing nothing on the train or even asleep, except when he gets texts from me! And I feel like I have to go and tidy up the kitchen following mine and Emily's tea which was of the throw in the oven variety because Rob wasn't here to cook and I can't expect him to clear up a mess he didn't make even though it has cost me dear to make the simple meal.
It's not the sort of puffed up pride that I think I am too good and can't let other people do things, it's the shame of what I can't do and the shame of asking for help the need to keep my dignity intact sort of pride.
There is a lot of prejudice against people with ME, they are considered lazy or making up the illness and afraid to try things. So how are we lazy when the simplest of tasks can make us ill, but we are too ashamed to be seen as lazy or making it up so we try so hard only to be knocked back and made more ill. We are trying to save our pride. On the other hand if we accept our limitations and ask for help or claim to be disabled then we get the prejudiced view that we are not disabled or that somehow disabled people are lesser beings, so either way we can't win.
I am so ashamed when I take my daughter to and from school that I have to be allowed to park in the school car park instead of being proud of the fact that I do take her to school myself, but that's mainly because I am too proud to ask for help, confused? Yes me too! Today took another blow to my pride and had to use my walking stick even for the short distance from car to classroom because I could hardly walk and was feeling really dizzy, but I only gave in after quite a long argument with myself thinking that people would think badly of me or think I was looking for attention or sympathy. In reality people probably didn't even notice, but I felt ashamed and useless whilst I should have been proud of myself for my achievement or was I just too proud to ask for help when I needed it?
My other issue is my hearing loss and the fact that I have hearing aids. I won't admit that I can't hear or explain to people that I need them to speak clearer or speak up, I just let myself look stupid or ignorant which is not very dignified and does little to save my pride and I end up avoiding situations or conversations which also makes me look ignorant. I am sure that it would be much more dignified to admit the problem, but then people won't talk to me because I can't hear or they will treat me like I am stupid, again it's a no win situation for me.
Having a blue badge allows me a little bit of pride and dignity in that I can collect my own prescription or park near the entrance to a small shop or the library. Then my pride is shattered by those who don't think I should have one as I can walk a little and I become ashamed of my need and my pride in doing something for myself is taken away and replaced by guilt. Take my blue badge away and have lost my small amount of dignity and pride in the small tasks because I wouldn't be able to do then any more. Being unable to do these things would make me ashamed and guilty as I would have to swallow my pride and ask for help and would get the prejudice label of being lazy.
Well I do need to swallow my pride now and admit that I feel really tired, sick, dizzy and in pain and accept that I need to sit and do nothing or go to bed.
Watch out for Pride and Prejudice Pt 2 and also Sense and Sensibility which are currently spinning around in my head waiting until I can get them down on my blog!
As I am currently away from Facebook, where I share and promote my blog, please could you share this blog if you have found it interesting or useful. Many thanks
Friday, July 03, 2015
Steps.....
Today was Emily's school year 6 leavers service in church. Only 3 years and it will be her turn! Time moves on so fast and I feel like I have been left behind as I am so stuck with this stupid illness. I try to move on and be happy and take pleasure from things, but the illness comes along too.
I doesn't seem that long since I was 11 and moving to high school, we didn't get such an amazing send off and celebrations like they do now, it just happened. time seems to run away with us.
In church we sang one more step along the world I go, a song we had at our wedding and Emily's christening, I'm having it at my funeral too! It always make me think of the good times and the bad, we are constantly moving along and things are changing even if they aren't as big as moving to high school. We mark large steps the life events, but we don't notice the little steps we take each day. For me today the steps I had to take up to the church were slow and painful and I returned home in agony and had to go and lie down. I don't feel good that all I could do was go to the service, but was my achievement any less than those children leaving for high school? I hope they have nicer memories of it than me of course.
When I moved to high school that was the beginning of my health problems and my progress was very slow at times, but things did still move on. I didn't go through high school like my peers and go on to do degrees and get good jobs etc, but life did still move on and I did what I could within ,my limitations. Instead of being proud though I feel ashamed as I didn't do what normal people were doing and didn't get the education that they got, even years later when I got a Masters degree it felt like a failure not a success as I was older and was too ill by then to get a job.
Each day I feel ashamed of what I manage to do, to me it's usually too much, but in the grand scheme of things is not much. This week I have made 2 cards, but I feel I should have done more. I feel guilty because I didn't make Emily's teacher a gift (Emily made one and didn't want me to), but it still feels wrong and I might still make it as it's something I want to do, but even then I won't be happy with it. Many of the big steps in my life have been difficult and I sometimes wonder if that puts me off making the little steps as I am afraid of failure and not doing things means I can't fail, but then I feel bad for not trying. On the other hand each day feels like a big struggle just to manage the daily routine without fitting in other things as well.
At the moment we are taking quite a big step by having building work done, we have wanted to do it for 8 years but always put it off due to cost and stress involved, but when we inherited some money last year we decided to go for it. It should be a happy time watching it being done and planning how it will be decorated and furnished, but I am finding it stressful and worry about the cost and getting the work done after the builders finish. I am lucky that the builders are great and aren't intruding on my life and routine and are very happy and helpful. So why do I feel guilty for having the work done, ashamed that we can afford to do it, worried that we are showing off or being unfair to those who are worse off. one of the reasons we are having the building done is because we felt we needed to live up to expectations and improve our house as we can't afford to move. It will be great to have more space, but it's not essential and we could just have got rid of a load of junk instead!! We are planning it as a room for Emily so that she can have her own space as she grows up, but then it feels like we are spoiling her and not making her realise that you can't have everything.
Then I feel guilty for the things I can do as there are many people worse off than me, much sicker than me and less fortunate than me. My default setting seems to be guilt.
I have had a bad week thanks to someone's insensitivity which made me feel useless and like I spoil things for my family too. When I get upset I start going through all my regrets and limitations and feel worse than ever and that I am not a good wife or mother. My pain has been really bad, I don't know if this is linked to the emotional stuff, or possibly when I feel bad about myself I try to do more to stop the thinking and to try and prove I can do things. The emotions are draining and I have not been sleeping, so all in all a bad week. I need to put it behind me and look for the little the things, the good things, the things I can do. I also started feeling even more guilty about spending money as we have a lot to pay out for and it looks like I will lose my DLA sooner than thought as the changeover to PIP has been brought forward. Losing the DLA means I lose my Motability car and my Blue Badge which both give my my little bit of independence, even if it is only that I can take Emily to school, go to the Drs and collect my own prescriptions, it's the little things that count and make me feel part way human and useful.
Mind you maybe that is not a bad thing sometimes, today I felt really ill, but still had to collect Emily from school, I was in a lot of pain and my concentration was not great and I managed to hit a sign in the school car park, luckily no damage to the car, just my pride!
Yesterday I took another big step for me, I decided to try and make myself feel a bit brighter and to make most of the nice weather and go on my mobility scooter to fetch Emily from school and got to the local library. I lost count of the number of people who took the mickey, stared at me or deliberately got in the way and then when we got to the library for a book I had checked online before going the book wasn't there. I asked at the counter and she said it was returned to another branch and they have lost it, so I said yes but it says it is available at this branch, that's right she said because it is our copy and was returned to another branch!!! She has reserved another copy for me, but that means I will have to pay for it which was why I had checked if it was at local branch before going. I ended fed up, annoyed and in pain, not to mention insulted and wondering why I bother making an effort to do things.
So it's back to little steps, well they are today as the pain does not allow big steps, I feel like I am shuffling along like a little old lady, which according to my daughter I am! Think we are all feeling old this week as we mark the passing of another year, Emily keeps saying time is going too fast and she should not be this old, she is 8, but then it's only another 8 years until she can leave school and make her own way in the world.
Apparently this week they added a leap second into a day as the world is turning slower, doesn't feel like it to me! I keep saying I am sensitive to movement and it is the turning of the earth that makes me feel dizzy all the time! Well it moves at 1,000 miles an hour that makes me dizzy thinking about it.
Well time for some little steps to the kitchen to make a cup of tea, that is one thing I always appreciate.
I doesn't seem that long since I was 11 and moving to high school, we didn't get such an amazing send off and celebrations like they do now, it just happened. time seems to run away with us.
In church we sang one more step along the world I go, a song we had at our wedding and Emily's christening, I'm having it at my funeral too! It always make me think of the good times and the bad, we are constantly moving along and things are changing even if they aren't as big as moving to high school. We mark large steps the life events, but we don't notice the little steps we take each day. For me today the steps I had to take up to the church were slow and painful and I returned home in agony and had to go and lie down. I don't feel good that all I could do was go to the service, but was my achievement any less than those children leaving for high school? I hope they have nicer memories of it than me of course.
When I moved to high school that was the beginning of my health problems and my progress was very slow at times, but things did still move on. I didn't go through high school like my peers and go on to do degrees and get good jobs etc, but life did still move on and I did what I could within ,my limitations. Instead of being proud though I feel ashamed as I didn't do what normal people were doing and didn't get the education that they got, even years later when I got a Masters degree it felt like a failure not a success as I was older and was too ill by then to get a job.
Each day I feel ashamed of what I manage to do, to me it's usually too much, but in the grand scheme of things is not much. This week I have made 2 cards, but I feel I should have done more. I feel guilty because I didn't make Emily's teacher a gift (Emily made one and didn't want me to), but it still feels wrong and I might still make it as it's something I want to do, but even then I won't be happy with it. Many of the big steps in my life have been difficult and I sometimes wonder if that puts me off making the little steps as I am afraid of failure and not doing things means I can't fail, but then I feel bad for not trying. On the other hand each day feels like a big struggle just to manage the daily routine without fitting in other things as well.
At the moment we are taking quite a big step by having building work done, we have wanted to do it for 8 years but always put it off due to cost and stress involved, but when we inherited some money last year we decided to go for it. It should be a happy time watching it being done and planning how it will be decorated and furnished, but I am finding it stressful and worry about the cost and getting the work done after the builders finish. I am lucky that the builders are great and aren't intruding on my life and routine and are very happy and helpful. So why do I feel guilty for having the work done, ashamed that we can afford to do it, worried that we are showing off or being unfair to those who are worse off. one of the reasons we are having the building done is because we felt we needed to live up to expectations and improve our house as we can't afford to move. It will be great to have more space, but it's not essential and we could just have got rid of a load of junk instead!! We are planning it as a room for Emily so that she can have her own space as she grows up, but then it feels like we are spoiling her and not making her realise that you can't have everything.
Then I feel guilty for the things I can do as there are many people worse off than me, much sicker than me and less fortunate than me. My default setting seems to be guilt.
I have had a bad week thanks to someone's insensitivity which made me feel useless and like I spoil things for my family too. When I get upset I start going through all my regrets and limitations and feel worse than ever and that I am not a good wife or mother. My pain has been really bad, I don't know if this is linked to the emotional stuff, or possibly when I feel bad about myself I try to do more to stop the thinking and to try and prove I can do things. The emotions are draining and I have not been sleeping, so all in all a bad week. I need to put it behind me and look for the little the things, the good things, the things I can do. I also started feeling even more guilty about spending money as we have a lot to pay out for and it looks like I will lose my DLA sooner than thought as the changeover to PIP has been brought forward. Losing the DLA means I lose my Motability car and my Blue Badge which both give my my little bit of independence, even if it is only that I can take Emily to school, go to the Drs and collect my own prescriptions, it's the little things that count and make me feel part way human and useful.
Mind you maybe that is not a bad thing sometimes, today I felt really ill, but still had to collect Emily from school, I was in a lot of pain and my concentration was not great and I managed to hit a sign in the school car park, luckily no damage to the car, just my pride!
Yesterday I took another big step for me, I decided to try and make myself feel a bit brighter and to make most of the nice weather and go on my mobility scooter to fetch Emily from school and got to the local library. I lost count of the number of people who took the mickey, stared at me or deliberately got in the way and then when we got to the library for a book I had checked online before going the book wasn't there. I asked at the counter and she said it was returned to another branch and they have lost it, so I said yes but it says it is available at this branch, that's right she said because it is our copy and was returned to another branch!!! She has reserved another copy for me, but that means I will have to pay for it which was why I had checked if it was at local branch before going. I ended fed up, annoyed and in pain, not to mention insulted and wondering why I bother making an effort to do things.
So it's back to little steps, well they are today as the pain does not allow big steps, I feel like I am shuffling along like a little old lady, which according to my daughter I am! Think we are all feeling old this week as we mark the passing of another year, Emily keeps saying time is going too fast and she should not be this old, she is 8, but then it's only another 8 years until she can leave school and make her own way in the world.
Apparently this week they added a leap second into a day as the world is turning slower, doesn't feel like it to me! I keep saying I am sensitive to movement and it is the turning of the earth that makes me feel dizzy all the time! Well it moves at 1,000 miles an hour that makes me dizzy thinking about it.
One more step along the world I go,
One more step along the world I go;
From the old things to the new,
Keep me travelling along with you:
And it's from the old I travel to the new;
Keep me travelling along with you.
One more step along the world I go;
From the old things to the new,
Keep me travelling along with you:
And it's from the old I travel to the new;
Keep me travelling along with you.
Round the corners of the world I turn,
More and more about the world I learn;
All the new things that I see
You'll be looking at along with me.
And it's from the old I travel to the new;
Keep me travelling along with you.
More and more about the world I learn;
All the new things that I see
You'll be looking at along with me.
And it's from the old I travel to the new;
Keep me travelling along with you.
As I travel through the bad and good,
Keep me travelling the way I should.
Where I see no way to go,
You'll be telling me the way, I know.
And it's from the old I travel to the new;
Keep me travelling along with you.
Keep me travelling the way I should.
Where I see no way to go,
You'll be telling me the way, I know.
And it's from the old I travel to the new;
Keep me travelling along with you.
Give me courage when the world is rough,
Keep me loving though the world is tough;
Leap and sing in all I do,
Keep me travelling along with you:
And it's from the old I travel to the new;
Keep me travelling along with you.
Keep me loving though the world is tough;
Leap and sing in all I do,
Keep me travelling along with you:
And it's from the old I travel to the new;
Keep me travelling along with you.
You are older than the world can be,
You are younger than the life in me;
Ever old and ever new,
Keep me travelling along with you:
And it's from the old I travel to the new;
Keep me travelling along with you.
You are younger than the life in me;
Ever old and ever new,
Keep me travelling along with you:
And it's from the old I travel to the new;
Keep me travelling along with you.
Wednesday, May 13, 2015
Its not all about me or ME
Yesterday is now catching up with me and I need to rest. I have lots of ideas for my blog and my photos. Thank you to everyone who supported me and the ME cause. I also want to say, its not all about me or ME, many people live with serious health problems and disabilities many of which aren't obvious. One idea I want to try on my blog is getting other people to write about health issues or disabilities they have, or experiences such as an accident or bereavement as you never know what people are going through.
Sunday, May 03, 2015
Wear it for ME
Browsing on Cafepress I found some great clothing for ME awareness. I think they are great, but having spent quite a bit on stuff for the fundraising can't really justify buying any, but thought I would share them for my awareness campaign as I can relate to all the slogans.
Finally one that isn't on shirt, but maybe should be
I don't think I would be much of an advert wearing any of these as I am rarely out and about and if I am I usually have my coat on!! Now if they had the words on a big chunky coat!
Well I hope they give people some idea what it is like and it's ok to have a giggle at them too as long a you realise it's also a serious matter
ME awareness colour is blue, wear something blue on May 12th to show your support..
Monday, March 23, 2015
Nothing Feels Right
I don't like moaning as I know many are in similar or much worse positions than me and they manage to get on with life and not feel sorry for themselves, but everything feels so out of sorts at the moment. Anything I do be it essential, necessary or through choice seems wrong.
Take this weekend for example.
On Friday Rob was home early as he had to collect Emily from school as I was not well enough. As I had bought a great magazine with lots of free from cooking ideas, so we thought we would try something for tea as we had a bit more time with Rob being home early. Rob found a pizza recipe, but changed it without me me knowing, and it was horrid, no offence to him as he was trying to make it so that we would all eat it, my intolerances and Emily's fussiness are not easy to incorporate. I was really looking forward to a nice home cooked gluten free meal :-( But then I sound ungrateful as Rob had made the effort to make it, but I was annoyed that he had changed the recipe not knowing if it would work. The Magazine has so many nice sounding things, but we are always so limited on time that we seem to eat the same small repertoire of uninteresting food all the time. I have subscribed to the magazine for inspiration, but wonder now if I will just get frustrated by not being able to try them out either from lack of time or not have the right ingredients. Again it makes me sound ungrateful as at least I do get a hot cooked meal each day, usually cooked by Rob who also has a full time job.
On Saturday morning I felt really awful, but needed to tidy up, I wore myself out doing that and ended up back in bed by the time everyone else was up and ready to do things. In the afternoon we went to the cinema, I found it difficult to hear even though its really loud, too loud from a noise point of view, but not clear enough and I had no idea what the film was about, it was a kids film! Glad that I have a CEA card and get concessions, so had not paid full cost for us all. It was very busy at the complex we went to as it has many other attractions so getting in and out with a wheelchair is difficult. Being in the wheelchair when busy means you get walked into all the time and you are on a level with a sea of bums, bags and elbows, not much fun! Emily hates it too as she has to hold on and or get shoved out of the way to get passed people, she hates crowds. We usually go to cinema Saturday or Sunday mornings think we will stick with that next time it is quieter, but it won't make the film any better! The next thing we want to see is Cinderella which is released this weekend. I want to take Emily during the school holidays, but can't get to the cinema without help so need to wait for Rob to have a day off, its so frustrating and makes me feel such a useless Mum and unable to have girly time with my daughter. We also saw a trailer for Two by Two which looks good. We have been going to the cinema a bit recently, but its still not an easy option as it is quite overwhelming, takes a lot of concentration and you don't really feel as if you are doing something together. I still need to rest after doing something like that whereas others are eager to burn off some energy as they have just sat in the dark for 2 hours. I should be grateful I can get out, but it feels like hard work and not good use of my family time.
Yesterday Emily was in a Gymnastics competition, I spent the morning getting her ready and then we had an early lunch as they had to be there for 12.30. Again it was very crowded and sitting in a queue of bums, bags and elbows, nearly getting hit in the face by a squash racquet in someone's bag, people pushing past and bumping into me. The event was quite disorganised and we got in late and then had to sit for 4 hours watching 50 children do the same routines. I got very uncomfortable and the lighting was awful, spent some of the time in sunglasses! Each child got about 5 mins in the competition the rest of the time they were sitting over the other side of the room. Again family time, but not with my family. Emily sat quiet and still for the whole time, so of course made up for it when we got home. It was not a good use of my time and energy, all that time to watch 5 mins of my child. everyone else was in the same boat and it must have been so boring for the children even though they were taking part. Much of the time people were going in and out of the room and knocked into me each time, I was getting really fed up. I need to stretch my legs and go to toilet, so asked Rob where the toilet was, he told me and I set off to find it, not far he said, felt like miles to me! It was good that Emily had got through to the competition and for her to have the experience, but I hope we don't have to do it too often. The class she goes to is for recreational gymnastics as we did not want the pressure of competitions and she just wants some fun and exercise. The competition was an internal competition organised by a few of the sports centres in the area. Emily keeps saying it was an international competition, just a bit of a difference there!
Along with this hectic weekend I have been feeling generally useless and like I should be doing more, being more productive, but I don't have the time or energy, doesn't stop me feeling like this though. I stared up a page on facebook mainly to post links to my blog and share craft pictures, but I have no idea why I feel the need to do these things. Just need to feel I am doing something I suppose, but are people really interested, probably not. Like the blog I spend time and energy writing and yes people do read it, thank you for that, but is it really just me having a rant, moan, show off etc? Is anyone really interested in what I think or do? Is it beneficial even if no one read it? Why do I need to promote it? Once it is written or posted it doesn't really matter how many read it and why do I then have to regularly check how many have read. As I say whatever I do feels wrong even if its something I want to do. I also started a conversation on Streetlife to find people with similar interest and issues, but again I am not sure why, its not like I have a lack of things to do.
Last week I spent a lot of time in bed reading as I couldn't manage anything else. I enjoyed the books I read, but it felt wrong, I should have been doing other things, being more productive, so that of course then takes away some of the enjoyment. I feel that if I am reading I should at least read something that is of benefit, like the child behaviour books I have lined up or the magazines that show me how to do things, but they all sit unread as that feels like hard work.
I like making and creating things and have so many things to do, but again the effort of starting it feels too much, but then I feel bad for not doing anything and not making a go of anything. I feel like I should be producing lots of things as I am at home on my own all day, but I need to save my energy for school runs and household chores, even though I do get help with the chores.
I hate that I have to spend 2 to 3 hours a day in bed even on a good day, again that feels so wrong and that I should be doing something constructive with my time. I have my quilting class on Friday and want to do some more on the quilt, I haven't done any since the last class I went to in January and I so want to get it finished and move on to the other ideas I have, but by the time I am all set up it will be time to stop. I haven't picked up any knitting in ages, have many works in progress, but never seem to finish them so it all feels a waste of time.
I have many card ideas I want to make, but again the effort of getting things out and starting feels too much. There isn't room to leave things out and about and just do a little as I fancy. Again so many ideas, but not enough time and energy and then I end up rushing at the last minute to get something made for a specific date. I used to make and sell cards and feel that I should be able to do this, but that was when I had all day on my own, no Emily to sort out and school runs etc and even though she is out of the house most of the day when she is in it is energy intensive for me and I need to be able to manage that, so can't use my energy in other ways. It is so frustrating.
I spend quite a bit of time on Facebook, but get frustrated with people having a social life and holidays etc, to me they are very difficult, also the expense and family commitments prevent these. Actually I am not really a sociable person, but that because it requires a lot of effort from a physical point of view and a hearing point of view, so if I do go out I tend to sit there whilst everyone else chatters. Yesterday Rob spent more time talking to the woman sat the other side of him than to me and he didn't know her! I have not had an evening out since a theatre trip just before Christmas and again that doesn't really feel like you have been with someone as you are sat in the dark watching something and I get so uncomfortable and tired, again I am not sure I really enjoy it. Holidays, I would love a foreign holiday, but the hassle and expense mean we don't even try, but it would be nice to see a bit of sun and to give Emily that experience, I feel that my limitations and lack of income have a big impact on Emily and we cannot give her the life and experiences we would like to. She does many things and certainly does not go without, but its not what I want for her. But then I sound selfish as there are many people who can't afford what we have. I think whatever you have whether it be a little or a lot you always want more and of course want the things that are denied for whatever reason. Emily has spent half the weekend telling me she wants me to get a baby! Ok where do I go for one of them, the Supermarket? Joking aside though, this upsets me as I would love another baby, but for several reasons can't have one, but how do you tell that to an 8 year old. There are many things I can't do, but sometimes I really push myself and can do them a bit, so how do explain the difference between this and really can't? Or no you can't have a biscuit now, but another time you can have a biscuit?
Another thing that came up on Facebook was a reminder of the changes to the DLA benefit. It is changing to a benefit called PIP and many of us that currently get the higher rate of mobility payment will no longer get it as the criteria has changed, so not only will we be worse off we will also lose our Motabilty cars, so bang goes our tiny bit of independence. There is a petition going to stop this form happening, but I doubt it will have much impact and won't get as many supporters as the reinstate Jeremy Clarkson campaign, just shows where the countries priorities lie!
Well I must stop now I am feeling really awful and have more than used my energy quota typing this, was it worth it? I have no idea? Nothing feels right.
Take this weekend for example.
On Friday Rob was home early as he had to collect Emily from school as I was not well enough. As I had bought a great magazine with lots of free from cooking ideas, so we thought we would try something for tea as we had a bit more time with Rob being home early. Rob found a pizza recipe, but changed it without me me knowing, and it was horrid, no offence to him as he was trying to make it so that we would all eat it, my intolerances and Emily's fussiness are not easy to incorporate. I was really looking forward to a nice home cooked gluten free meal :-( But then I sound ungrateful as Rob had made the effort to make it, but I was annoyed that he had changed the recipe not knowing if it would work. The Magazine has so many nice sounding things, but we are always so limited on time that we seem to eat the same small repertoire of uninteresting food all the time. I have subscribed to the magazine for inspiration, but wonder now if I will just get frustrated by not being able to try them out either from lack of time or not have the right ingredients. Again it makes me sound ungrateful as at least I do get a hot cooked meal each day, usually cooked by Rob who also has a full time job.
On Saturday morning I felt really awful, but needed to tidy up, I wore myself out doing that and ended up back in bed by the time everyone else was up and ready to do things. In the afternoon we went to the cinema, I found it difficult to hear even though its really loud, too loud from a noise point of view, but not clear enough and I had no idea what the film was about, it was a kids film! Glad that I have a CEA card and get concessions, so had not paid full cost for us all. It was very busy at the complex we went to as it has many other attractions so getting in and out with a wheelchair is difficult. Being in the wheelchair when busy means you get walked into all the time and you are on a level with a sea of bums, bags and elbows, not much fun! Emily hates it too as she has to hold on and or get shoved out of the way to get passed people, she hates crowds. We usually go to cinema Saturday or Sunday mornings think we will stick with that next time it is quieter, but it won't make the film any better! The next thing we want to see is Cinderella which is released this weekend. I want to take Emily during the school holidays, but can't get to the cinema without help so need to wait for Rob to have a day off, its so frustrating and makes me feel such a useless Mum and unable to have girly time with my daughter. We also saw a trailer for Two by Two which looks good. We have been going to the cinema a bit recently, but its still not an easy option as it is quite overwhelming, takes a lot of concentration and you don't really feel as if you are doing something together. I still need to rest after doing something like that whereas others are eager to burn off some energy as they have just sat in the dark for 2 hours. I should be grateful I can get out, but it feels like hard work and not good use of my family time.
Yesterday Emily was in a Gymnastics competition, I spent the morning getting her ready and then we had an early lunch as they had to be there for 12.30. Again it was very crowded and sitting in a queue of bums, bags and elbows, nearly getting hit in the face by a squash racquet in someone's bag, people pushing past and bumping into me. The event was quite disorganised and we got in late and then had to sit for 4 hours watching 50 children do the same routines. I got very uncomfortable and the lighting was awful, spent some of the time in sunglasses! Each child got about 5 mins in the competition the rest of the time they were sitting over the other side of the room. Again family time, but not with my family. Emily sat quiet and still for the whole time, so of course made up for it when we got home. It was not a good use of my time and energy, all that time to watch 5 mins of my child. everyone else was in the same boat and it must have been so boring for the children even though they were taking part. Much of the time people were going in and out of the room and knocked into me each time, I was getting really fed up. I need to stretch my legs and go to toilet, so asked Rob where the toilet was, he told me and I set off to find it, not far he said, felt like miles to me! It was good that Emily had got through to the competition and for her to have the experience, but I hope we don't have to do it too often. The class she goes to is for recreational gymnastics as we did not want the pressure of competitions and she just wants some fun and exercise. The competition was an internal competition organised by a few of the sports centres in the area. Emily keeps saying it was an international competition, just a bit of a difference there!
Along with this hectic weekend I have been feeling generally useless and like I should be doing more, being more productive, but I don't have the time or energy, doesn't stop me feeling like this though. I stared up a page on facebook mainly to post links to my blog and share craft pictures, but I have no idea why I feel the need to do these things. Just need to feel I am doing something I suppose, but are people really interested, probably not. Like the blog I spend time and energy writing and yes people do read it, thank you for that, but is it really just me having a rant, moan, show off etc? Is anyone really interested in what I think or do? Is it beneficial even if no one read it? Why do I need to promote it? Once it is written or posted it doesn't really matter how many read it and why do I then have to regularly check how many have read. As I say whatever I do feels wrong even if its something I want to do. I also started a conversation on Streetlife to find people with similar interest and issues, but again I am not sure why, its not like I have a lack of things to do.
Last week I spent a lot of time in bed reading as I couldn't manage anything else. I enjoyed the books I read, but it felt wrong, I should have been doing other things, being more productive, so that of course then takes away some of the enjoyment. I feel that if I am reading I should at least read something that is of benefit, like the child behaviour books I have lined up or the magazines that show me how to do things, but they all sit unread as that feels like hard work.
I like making and creating things and have so many things to do, but again the effort of starting it feels too much, but then I feel bad for not doing anything and not making a go of anything. I feel like I should be producing lots of things as I am at home on my own all day, but I need to save my energy for school runs and household chores, even though I do get help with the chores.
I hate that I have to spend 2 to 3 hours a day in bed even on a good day, again that feels so wrong and that I should be doing something constructive with my time. I have my quilting class on Friday and want to do some more on the quilt, I haven't done any since the last class I went to in January and I so want to get it finished and move on to the other ideas I have, but by the time I am all set up it will be time to stop. I haven't picked up any knitting in ages, have many works in progress, but never seem to finish them so it all feels a waste of time.
I have many card ideas I want to make, but again the effort of getting things out and starting feels too much. There isn't room to leave things out and about and just do a little as I fancy. Again so many ideas, but not enough time and energy and then I end up rushing at the last minute to get something made for a specific date. I used to make and sell cards and feel that I should be able to do this, but that was when I had all day on my own, no Emily to sort out and school runs etc and even though she is out of the house most of the day when she is in it is energy intensive for me and I need to be able to manage that, so can't use my energy in other ways. It is so frustrating.
I spend quite a bit of time on Facebook, but get frustrated with people having a social life and holidays etc, to me they are very difficult, also the expense and family commitments prevent these. Actually I am not really a sociable person, but that because it requires a lot of effort from a physical point of view and a hearing point of view, so if I do go out I tend to sit there whilst everyone else chatters. Yesterday Rob spent more time talking to the woman sat the other side of him than to me and he didn't know her! I have not had an evening out since a theatre trip just before Christmas and again that doesn't really feel like you have been with someone as you are sat in the dark watching something and I get so uncomfortable and tired, again I am not sure I really enjoy it. Holidays, I would love a foreign holiday, but the hassle and expense mean we don't even try, but it would be nice to see a bit of sun and to give Emily that experience, I feel that my limitations and lack of income have a big impact on Emily and we cannot give her the life and experiences we would like to. She does many things and certainly does not go without, but its not what I want for her. But then I sound selfish as there are many people who can't afford what we have. I think whatever you have whether it be a little or a lot you always want more and of course want the things that are denied for whatever reason. Emily has spent half the weekend telling me she wants me to get a baby! Ok where do I go for one of them, the Supermarket? Joking aside though, this upsets me as I would love another baby, but for several reasons can't have one, but how do you tell that to an 8 year old. There are many things I can't do, but sometimes I really push myself and can do them a bit, so how do explain the difference between this and really can't? Or no you can't have a biscuit now, but another time you can have a biscuit?
Another thing that came up on Facebook was a reminder of the changes to the DLA benefit. It is changing to a benefit called PIP and many of us that currently get the higher rate of mobility payment will no longer get it as the criteria has changed, so not only will we be worse off we will also lose our Motabilty cars, so bang goes our tiny bit of independence. There is a petition going to stop this form happening, but I doubt it will have much impact and won't get as many supporters as the reinstate Jeremy Clarkson campaign, just shows where the countries priorities lie!
Well I must stop now I am feeling really awful and have more than used my energy quota typing this, was it worth it? I have no idea? Nothing feels right.
Monday, January 19, 2015
Needs, Wants and Abilities
I wrote this last week, only just got chance to scan it in as the week went from bad to worse and I found it even more difficult to manage my needs and the needs of others with my PA being off sick and the bad press about ME.
I am currently feeling rubbish and finding it difficult to do things I think it will be off to bed again after this despite the things I want and need to do, its a never ending conflict and its never easy to decide which thing should take priority.
I am currently feeling rubbish and finding it difficult to do things I think it will be off to bed again after this despite the things I want and need to do, its a never ending conflict and its never easy to decide which thing should take priority.
Sunday, November 23, 2014
Christmas Sprit
Yesterday was the annual Christmas fair and light switch on in Rothwell, its a great day and well attended.
Emily had a brilliant face painting done by Artifaces and went on some of the fairground rides.
Emily had a brilliant face painting done by Artifaces and went on some of the fairground rides.
Later on we went back for the lights switch on and fireworks. Well done Rothwell Carnival Committee. Thankfully it stayed dry and not too cold.
We managed not to buy too much, a star decoration for Emily which we had ordered at another event from Lexi's Little Gems
A bun from Cakes for Breaks and a pork pie (no pictures of these, wonder why!) and a Christmas Cake. The indoor stalls are difficult to access if you are disabled, we managed to get in the back door when we arrived, but a bit later it was closed and there was no disabled access, there is access at the side of the building, but that was also closed and the only way in is up a flight of steps. When we tried to go back in we couldn't get in so I had to sit in the car. It is also a very busy event and getting near the stalls is difficult, which is a shame especially as there was an FDM (for Disability Mobility) stand inside! Outside stalls were easier to access, but they were lucky it was good weather.
Wednesday, November 19, 2014
What can I do?
I am so fed up of everything I do having consequences and affecting me so much. I know I am always doing too much and doing things that are not good for me, but if I cut out all the bad things what would be left. Life goes on and you can either go with it as best you can and make the most of it or give up. I can't give up with a 7 year old to care for and a house to keep in order. If I did the bare minimum I would probably feel ok and be able to cope, but that would mean never going out, not being able to do things with my daughter, not having anyone in the house and so on.
I have commitments each day and although I rest each afternoon I have to be up early and getting on with the day. Might not seem much to others, but putting in the washing and making sure Emily up and ready and taking her to school, I am exhausted before 9am, well I am exhausted before I get up! I go to bed early, but then get fed up of being in bed because I can't sleep and then need to get up because I am in pain or my mind is driving me mad. I am really struggling today as I had my hair coloured yesterday, along with Emily having a friend for tea and then having tantrums too. I was in bed at the same time as Emily, but then only got about 4 hours sleep. I can't sit down for long as its uncomfortable, but I can't move about a lot either although I do much more than I should, stairs are a killer, but they have to be climbed and I wouldn't want to not use them, but the effort builds up through the day and that final climb to bed can feel like Everest and of course you can guarantee I will have left something I need downstairs! If I do sit down or lie down my mind starts racing with things I need to do so I get up and try and do things, get distracted by something else and end up doing too much. I try to save my energy for when Emily comes home, but despite resting (well laying on the bed) for two to three hours by the time I get her home I am ready to rest again and then there is no chance until she is in bed and then there are usually things to do and by the time I do get to bed I am running on adrenaline and can't sleep and so it goes on.
What should I do with myself. I sit at the computer when I am not able to do other things, but its not good for my pain and makes me dizzy. Its often my only contact with the outside world, but then if there are things I need to deal with I get stressed about them. My contact with most people is by email or text due to my hearing loss, which is better for me as conversation is difficult to concentrate on even with good hearing.
But I need to get out and have contact sometimes, but then the effort of going somewhere is so much I feel ill and can't take part or can't follow conversation. Then wonder why I bother and come across as being ignorant and or stupid.
I type my blog as an outlet, but it really is hard and not good for my health, but helps with my sanity I think.
I know that I need to do much less, but things just pile up, I don't work, I don't do my own housework or even wash my own hair, but that means I have to have people in who do it for me and that can be just as draining, having to make conversation, cope with the noise and disruption and people competing for my attention and the associated paperwork and organisation really gets to me. I have just had a letter from the council saying I need a review of the money that pays for my care and help. I need that money to exist, but the effort of justifying it is so hard. Last time they took quite a bit of it away from me, I expect they will do the same again. I know the government need to make cuts and that we can't expect free money, but its the way it is done, its such hard work and you feel like a fraud, whilst of course many people get away with it. I don't have the energy to fight again and sometimes wonder if having the help is more trouble than its worth, but what would I do without it, I can't afford to pay for it myself. There are some things that I would have to pay for somehow and other things I would have to go without, but that makes life even harder, not to mention the stress of it all too.
I know I am lucky in that I can do some things and I have to be grateful for that and I know many people suffer much more financially, my husband does have a job, but if I lost my payments he would be working to pay for me being disabled, that's not fair to him. I get no benefits and only got the care payments when I was in hospital whilst pregnant and my husband had cancer and couldn't care for himself let alone me. I still get them as I have a child to care for and a husband with health issues, not because I am ill myself. Apparently people from benefits are reading peoples Facebook and blogs etc to collect evidence of fraud, well good luck reading mine, its not very exciting and you won't find any pictures of me mountain climbing or jetting of to foreign places, unless they are wheelchair friendly and cheap! I can't even walk to the bus stop or even to the end of the street! It's sad that the people committing the fraud are good liars and those of us with genuine claims are treated like liars.
My wheelchair and scooter give me a life outside the house, but I need someone to push me in wheelchair and my scooter needs servicing and its too cold to use it now anyway. My walking stick is supposed to help me, but I am just as likely to trip over it or drop it so it becomes a nuisance and most of the time I am not walking far, but I should use it more. It's such a pain always being different though when all you want to do is blend in and be normal. My daughter has been picked on because I am disabled, how cruel is that?! The last thing I want is for her to suffer because of me, but of course she does, either because I am limited in what I can do with her and for her (I already do more than I should), or because I can't hear her or can't cope with the noise and energy that she has. I try to make sure her life is as normal as possible, but it's always going to be a bit different. She will always stand out as I need to park in the school car park as I can't walk from the street parking an issue which continues to cause problems even though she has been there for 3 years. Last year I had to take her in through school rather than to the classroom door as it was too far from the car park, so she will stand out and its not what I want, but I want to be able to do these things for her.
I enjoy craft activities, but do them less and less as I struggle to concentrate and get out and put away the stuff I need and it often seems pointless as I have an item that I can't do anything with. I have made lots of bracelets, but never wear them, I hardly ever go out and if I do I don't put much effort into getting ready. I make cards, but always seem to miss the event I was making it for so it either gets unfinished or stuck in a box. I like knitting, but struggle to follow patterns and keep track of where I am so again little gets done and have many unfinished projects with starting something which might be easier to do and can't do that alongside watching Tv or having a conversation. I have spent two years making a quilt, its almost finished now, but only really do it at the classes and what will happen to it when its done? Nothing. I have enjoyed doing it, but its not what I wanted it to be. I struggle after going to the classes and now Rob has to go with me to help with the carrying, driving, cutting and instructions so its not really a thing for me any more. I really have to try and rest tomorrow as it is this months class on Friday. Hoping to get a small Christmas project made, but en what will happen to that, it will spend 50 weeks of the year out of sight. But I want to do things, its so frustrating.
I like cooking and baking, but can't manage the preparation or standing over anything, can't follow a recipe. Occasionally make packet mix buns with Emily, but only if she mixes it. I have to make my own bread with being intolerant to gluten and yeast, thankfully I have now found a packet mix for that, before I only had bread if Rob had time to make it, but its all still an effort and there is no enjoyment in it. My cooking is limited to something I can put straight in oven or microwave or Rob has to cook when he gets home, so our meals are rather limited. The oven is currently broken so limits us even more and I can't ring up about it and Rob hasn't had time and can't get someone else to do it as they need to be able to explain the problem. Add in my food intolerances and food gets very boring. I depress myself finding lovely looking recipes on Pinterest, but we never get chance to try them or they are not suitable. I mean what can you have that's gluten free, dairy free, sugar free, fish free and easy to prepare?! Availability is getting better, but its makes shopping and cooking quite a chore. I can't go to the shop and browse the shelves or shop for nice ingredients, my shopping is made up of clicks on Tesco's website and hoping that stuff gets delivered or sending Rob to the shop to buy what he chooses. If I do venture in a shop I need my wheelchair or scooter and the lights and noise get too much after a few minutes, but I can't come out mid shop.
This makes it all sound as if I do nothing, but yet I feel like I am always busy and exhausted and doing far too much. I am worn out doing basics and then if something unexpected comes along and I have to deal with it as often does happen its really difficult, but I can't just ignore things or wait for a better time as the better time never comes.
My head is fit to burst with frustration, but I am one of the luckier ones, I know that and I have to try and find some good in each day, but when everything feels such an effort its hard to do.
I know I need to change some of my priorities and cut back on what I do and stop letting things get to me as the emotional stuff can be as draining as physical stuff, more so sometimes.
My positives for today are the kind words this morning from Maggy, finishing the card I was making and in time too and finding the happy apps for my phone. But every new thing I take on to try and make things better is another demand on my time and energy, its so difficult to know what is right and what is wrong and with ME it often feels like whatever choice you make its the wrong one and there is a consequence.
I have commitments each day and although I rest each afternoon I have to be up early and getting on with the day. Might not seem much to others, but putting in the washing and making sure Emily up and ready and taking her to school, I am exhausted before 9am, well I am exhausted before I get up! I go to bed early, but then get fed up of being in bed because I can't sleep and then need to get up because I am in pain or my mind is driving me mad. I am really struggling today as I had my hair coloured yesterday, along with Emily having a friend for tea and then having tantrums too. I was in bed at the same time as Emily, but then only got about 4 hours sleep. I can't sit down for long as its uncomfortable, but I can't move about a lot either although I do much more than I should, stairs are a killer, but they have to be climbed and I wouldn't want to not use them, but the effort builds up through the day and that final climb to bed can feel like Everest and of course you can guarantee I will have left something I need downstairs! If I do sit down or lie down my mind starts racing with things I need to do so I get up and try and do things, get distracted by something else and end up doing too much. I try to save my energy for when Emily comes home, but despite resting (well laying on the bed) for two to three hours by the time I get her home I am ready to rest again and then there is no chance until she is in bed and then there are usually things to do and by the time I do get to bed I am running on adrenaline and can't sleep and so it goes on.
What should I do with myself. I sit at the computer when I am not able to do other things, but its not good for my pain and makes me dizzy. Its often my only contact with the outside world, but then if there are things I need to deal with I get stressed about them. My contact with most people is by email or text due to my hearing loss, which is better for me as conversation is difficult to concentrate on even with good hearing.
But I need to get out and have contact sometimes, but then the effort of going somewhere is so much I feel ill and can't take part or can't follow conversation. Then wonder why I bother and come across as being ignorant and or stupid.
I type my blog as an outlet, but it really is hard and not good for my health, but helps with my sanity I think.
I know that I need to do much less, but things just pile up, I don't work, I don't do my own housework or even wash my own hair, but that means I have to have people in who do it for me and that can be just as draining, having to make conversation, cope with the noise and disruption and people competing for my attention and the associated paperwork and organisation really gets to me. I have just had a letter from the council saying I need a review of the money that pays for my care and help. I need that money to exist, but the effort of justifying it is so hard. Last time they took quite a bit of it away from me, I expect they will do the same again. I know the government need to make cuts and that we can't expect free money, but its the way it is done, its such hard work and you feel like a fraud, whilst of course many people get away with it. I don't have the energy to fight again and sometimes wonder if having the help is more trouble than its worth, but what would I do without it, I can't afford to pay for it myself. There are some things that I would have to pay for somehow and other things I would have to go without, but that makes life even harder, not to mention the stress of it all too.
I know I am lucky in that I can do some things and I have to be grateful for that and I know many people suffer much more financially, my husband does have a job, but if I lost my payments he would be working to pay for me being disabled, that's not fair to him. I get no benefits and only got the care payments when I was in hospital whilst pregnant and my husband had cancer and couldn't care for himself let alone me. I still get them as I have a child to care for and a husband with health issues, not because I am ill myself. Apparently people from benefits are reading peoples Facebook and blogs etc to collect evidence of fraud, well good luck reading mine, its not very exciting and you won't find any pictures of me mountain climbing or jetting of to foreign places, unless they are wheelchair friendly and cheap! I can't even walk to the bus stop or even to the end of the street! It's sad that the people committing the fraud are good liars and those of us with genuine claims are treated like liars.
My wheelchair and scooter give me a life outside the house, but I need someone to push me in wheelchair and my scooter needs servicing and its too cold to use it now anyway. My walking stick is supposed to help me, but I am just as likely to trip over it or drop it so it becomes a nuisance and most of the time I am not walking far, but I should use it more. It's such a pain always being different though when all you want to do is blend in and be normal. My daughter has been picked on because I am disabled, how cruel is that?! The last thing I want is for her to suffer because of me, but of course she does, either because I am limited in what I can do with her and for her (I already do more than I should), or because I can't hear her or can't cope with the noise and energy that she has. I try to make sure her life is as normal as possible, but it's always going to be a bit different. She will always stand out as I need to park in the school car park as I can't walk from the street parking an issue which continues to cause problems even though she has been there for 3 years. Last year I had to take her in through school rather than to the classroom door as it was too far from the car park, so she will stand out and its not what I want, but I want to be able to do these things for her.
I enjoy craft activities, but do them less and less as I struggle to concentrate and get out and put away the stuff I need and it often seems pointless as I have an item that I can't do anything with. I have made lots of bracelets, but never wear them, I hardly ever go out and if I do I don't put much effort into getting ready. I make cards, but always seem to miss the event I was making it for so it either gets unfinished or stuck in a box. I like knitting, but struggle to follow patterns and keep track of where I am so again little gets done and have many unfinished projects with starting something which might be easier to do and can't do that alongside watching Tv or having a conversation. I have spent two years making a quilt, its almost finished now, but only really do it at the classes and what will happen to it when its done? Nothing. I have enjoyed doing it, but its not what I wanted it to be. I struggle after going to the classes and now Rob has to go with me to help with the carrying, driving, cutting and instructions so its not really a thing for me any more. I really have to try and rest tomorrow as it is this months class on Friday. Hoping to get a small Christmas project made, but en what will happen to that, it will spend 50 weeks of the year out of sight. But I want to do things, its so frustrating.
I like cooking and baking, but can't manage the preparation or standing over anything, can't follow a recipe. Occasionally make packet mix buns with Emily, but only if she mixes it. I have to make my own bread with being intolerant to gluten and yeast, thankfully I have now found a packet mix for that, before I only had bread if Rob had time to make it, but its all still an effort and there is no enjoyment in it. My cooking is limited to something I can put straight in oven or microwave or Rob has to cook when he gets home, so our meals are rather limited. The oven is currently broken so limits us even more and I can't ring up about it and Rob hasn't had time and can't get someone else to do it as they need to be able to explain the problem. Add in my food intolerances and food gets very boring. I depress myself finding lovely looking recipes on Pinterest, but we never get chance to try them or they are not suitable. I mean what can you have that's gluten free, dairy free, sugar free, fish free and easy to prepare?! Availability is getting better, but its makes shopping and cooking quite a chore. I can't go to the shop and browse the shelves or shop for nice ingredients, my shopping is made up of clicks on Tesco's website and hoping that stuff gets delivered or sending Rob to the shop to buy what he chooses. If I do venture in a shop I need my wheelchair or scooter and the lights and noise get too much after a few minutes, but I can't come out mid shop.
This makes it all sound as if I do nothing, but yet I feel like I am always busy and exhausted and doing far too much. I am worn out doing basics and then if something unexpected comes along and I have to deal with it as often does happen its really difficult, but I can't just ignore things or wait for a better time as the better time never comes.
My head is fit to burst with frustration, but I am one of the luckier ones, I know that and I have to try and find some good in each day, but when everything feels such an effort its hard to do.
I know I need to change some of my priorities and cut back on what I do and stop letting things get to me as the emotional stuff can be as draining as physical stuff, more so sometimes.
My positives for today are the kind words this morning from Maggy, finishing the card I was making and in time too and finding the happy apps for my phone. But every new thing I take on to try and make things better is another demand on my time and energy, its so difficult to know what is right and what is wrong and with ME it often feels like whatever choice you make its the wrong one and there is a consequence.
Saturday, October 11, 2014
Frustrations
Its been a very frustrating day today. As usual I was up early, its nice to get a bit of peace and quiet before anyone else gets up, but I just started looking at something I needed to do and Emily got up, so that was that. I got her breakfast ready and then it just sat there for half an hour before she even touched it and then left all the crusts and more besides, she has rather a generous boundary on crusts! I decided to have a bath whilst Emily and Rob finished their breakfast, but then had to chivvy them to get ready. I wanted to get out in the sunshine, but the only things to do were chores so we went down into the town and got local jobs done; bottle bank, chemist. We did go for a drink, but it was noisy and although Emily asked to go, she then played up so we ended up coming home.
Meal times are very frustrating I have many restrictions and basically have the same breakfast and lunch 7 days a week. I fancied something a bit different today, but not having been shopping or able to go anywhere it was the same thing again. My diet is very boring, no wheat, no yeast, limited dairy, limited sugar, no fish, no caffeine and no alcohol. Gluten free food is very expensive and not very appetising much of the time. I spend a lot of time looking at recipes, but never have the time or energy to make them. I have finally found a yeast free, gluten free bread mix which is quick and easy to make from Helen's. Even then I have to get someone to help mix it. After tears and frustrations lunchtime was the same old buttered toast for me, bread not big enough to make sandwiches and has to be toasted or it's too dry. Again Emily left a big chunk of hers even though its what she asked for and the same again at tea time. Rob made some nice cauliflower muffins to go with bacon for us, but Emily asked for pasta which he made especially for her.
After tea Emily wanted to play on the wii, not a good activity for me, I can manage some of the easier activities on a good day, but not for long, but today she was boxing and cycling, wears me out watching, so I ended up picking up things that had been left out and tidying up generally, not good use of my energy, but I can't sit and do nothing just in case someone wants me. I end up pottering about doing bits of things as it doesn't require any concentration, but I soon run out of energy and then can't do nice things with others and then come across miserable all the time. Well its not an appearance today its true, I just get so fed up.
Weekends are hard as I am stuck in the house all week, only get out to do school run normally and then at weekends I want to go out, nothing adventurous just fresh air and change of scenery, but there are jobs that need doing and Rob and Emily have been out all week so are happy to stay at home. They get choice for their dinners and a change of scenery every day. I could go out if I wanted to, but then I wouldn't have the energy to do school run and look after Emily before and after school so have to stay in. I also have to be in for people who come in to help, but I find that tiring and demanding and an invasion of my space at times, even though I am grateful for the help
Hoping for a nice evening watching Strictly with Emily, but she had other ideas and talked through the dances so I switched it off, it was too difficult to follow. We did play a game for a while, then she decided that she wanted to play in a cardboard box and that I should run around the room after her, yeah right!
I feel like I am being awkward and ungrateful all the time. Last night Rob went out, I had paid for him to go to a curry evening, but then realised it was for our wedding anniversary, so he went out and I stayed in and put Emily to bed, hmmmmm. We never do things together. When he came back he said he had booked for both of us to go to the next one which is a Diwali celebration, but Emily is going too and its late at night and I don't know what I will be able to eat, so it rather spoils the thing for me. Ah well he did try, but I end up looking ungrateful. It's always the same if we go out and tempers get frayed and things get spoiled.
Rob is still settling Emily into bed, so looks like another evening where I don't get to see him, I think we speak more by text and email than we do face to face.
I'm going to stop now as I am making more mistakes than I am getting right so it takes forever to type anything. Apologies if some of this may not make sense my head is full of cotton wool rather like this I think
Meal times are very frustrating I have many restrictions and basically have the same breakfast and lunch 7 days a week. I fancied something a bit different today, but not having been shopping or able to go anywhere it was the same thing again. My diet is very boring, no wheat, no yeast, limited dairy, limited sugar, no fish, no caffeine and no alcohol. Gluten free food is very expensive and not very appetising much of the time. I spend a lot of time looking at recipes, but never have the time or energy to make them. I have finally found a yeast free, gluten free bread mix which is quick and easy to make from Helen's. Even then I have to get someone to help mix it. After tears and frustrations lunchtime was the same old buttered toast for me, bread not big enough to make sandwiches and has to be toasted or it's too dry. Again Emily left a big chunk of hers even though its what she asked for and the same again at tea time. Rob made some nice cauliflower muffins to go with bacon for us, but Emily asked for pasta which he made especially for her.
After tea Emily wanted to play on the wii, not a good activity for me, I can manage some of the easier activities on a good day, but not for long, but today she was boxing and cycling, wears me out watching, so I ended up picking up things that had been left out and tidying up generally, not good use of my energy, but I can't sit and do nothing just in case someone wants me. I end up pottering about doing bits of things as it doesn't require any concentration, but I soon run out of energy and then can't do nice things with others and then come across miserable all the time. Well its not an appearance today its true, I just get so fed up.
Weekends are hard as I am stuck in the house all week, only get out to do school run normally and then at weekends I want to go out, nothing adventurous just fresh air and change of scenery, but there are jobs that need doing and Rob and Emily have been out all week so are happy to stay at home. They get choice for their dinners and a change of scenery every day. I could go out if I wanted to, but then I wouldn't have the energy to do school run and look after Emily before and after school so have to stay in. I also have to be in for people who come in to help, but I find that tiring and demanding and an invasion of my space at times, even though I am grateful for the help
Hoping for a nice evening watching Strictly with Emily, but she had other ideas and talked through the dances so I switched it off, it was too difficult to follow. We did play a game for a while, then she decided that she wanted to play in a cardboard box and that I should run around the room after her, yeah right!
I feel like I am being awkward and ungrateful all the time. Last night Rob went out, I had paid for him to go to a curry evening, but then realised it was for our wedding anniversary, so he went out and I stayed in and put Emily to bed, hmmmmm. We never do things together. When he came back he said he had booked for both of us to go to the next one which is a Diwali celebration, but Emily is going too and its late at night and I don't know what I will be able to eat, so it rather spoils the thing for me. Ah well he did try, but I end up looking ungrateful. It's always the same if we go out and tempers get frayed and things get spoiled.
Rob is still settling Emily into bed, so looks like another evening where I don't get to see him, I think we speak more by text and email than we do face to face.
I'm going to stop now as I am making more mistakes than I am getting right so it takes forever to type anything. Apologies if some of this may not make sense my head is full of cotton wool rather like this I think
except I think, but it doesn't work.
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