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?
Showing posts with label CFS. Show all posts
Showing posts with label CFS. Show all posts
Friday, November 20, 2015
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
Tuesday, May 12, 2015
Princess for a day, reality hits!
So much for feeling like a Princess, I feel awful. The build up to the day and preparing things has left me exhausted, in lots of pain, feeling sick and dizzy, with a sore throat, serious tingling in my feet, legs, hands and face and poor concentration. The events of the last few days, having my hair done, having the photos taken and dealing with all the stuff around the hamster dying are really hitting home today. Me doesn't respect what day it is or let you have a day off for some fun.
I am going into Emily's class later to tell them about having ME and to make Princess crowns with them. I had so many plans and things I would love to do with them, but in reality I'll probably just bore them and look stupid. I am not dressed as a Princess today, my dress is too heavy and awkward to wear again let alone go into school and do messy activities. The dress I wore on Sunday for the Princess photos is my wedding dress, I have always dreamed of wearing it again and feeling so special, but in reality it was very hard work getting ready and walking around and I didn't get that special feeling I had dreamed of. I did have ME when we got married 14 years ago next month and it had to be factored into the day and the wedding plans, but I am sure I wouldn't be able to do it again now, but it's also amazing what adrenaline and determination can do.
I have lots of ideas of how to use the photos and have made up some to share, but it will take weeks to do the others as I need help with them and the energy and concentration required for the task.
We did enjoy dressing as Princesses, Emily was so excited and you can see from the pictures she loved it and was definitely the star of the show.
I am paying the price today for my enthusiasm and efforts and just when I wanted to be my best I have had to get Rob to take Emily to school and he has to come and help me at school later as despite all my ideas I can't do much more than turn up and hope everyone else has fun. This is the sad reality of ME and the price my family have to pay too. Rob has a full time job and Emily is trying to deal with growing up, school and the loss of her pet hamster (a big deal when you are 8).
Please follow the days events on Princess for ME, there is an auction later, some of my bracelets and cards are in it. Also visit ME organisations such as Action for ME, ME association, AYME or google ME and see what comes up!
There is a lot of ME activity on Facebook and Twitter today, so please show your support if you use these sites. I am Jane E M Shaw on Facebook. I don't understand Twitter and don't need any other distractions!
Well here are some of my pictures, I hope you will keep following me and the pictures as I create them. I have a lot more to say and share, but ME is not willing and I don't want to miss this afternoon through pushing even harder. The pictures are not in any particular order, please make sure yo go to the bottom for the ones that are captioned.
Thank to all those who have supported me and donated, there is still chance Just Giving
I am going into Emily's class later to tell them about having ME and to make Princess crowns with them. I had so many plans and things I would love to do with them, but in reality I'll probably just bore them and look stupid. I am not dressed as a Princess today, my dress is too heavy and awkward to wear again let alone go into school and do messy activities. The dress I wore on Sunday for the Princess photos is my wedding dress, I have always dreamed of wearing it again and feeling so special, but in reality it was very hard work getting ready and walking around and I didn't get that special feeling I had dreamed of. I did have ME when we got married 14 years ago next month and it had to be factored into the day and the wedding plans, but I am sure I wouldn't be able to do it again now, but it's also amazing what adrenaline and determination can do.
I have lots of ideas of how to use the photos and have made up some to share, but it will take weeks to do the others as I need help with them and the energy and concentration required for the task.
We did enjoy dressing as Princesses, Emily was so excited and you can see from the pictures she loved it and was definitely the star of the show.
I am paying the price today for my enthusiasm and efforts and just when I wanted to be my best I have had to get Rob to take Emily to school and he has to come and help me at school later as despite all my ideas I can't do much more than turn up and hope everyone else has fun. This is the sad reality of ME and the price my family have to pay too. Rob has a full time job and Emily is trying to deal with growing up, school and the loss of her pet hamster (a big deal when you are 8).
Please follow the days events on Princess for ME, there is an auction later, some of my bracelets and cards are in it. Also visit ME organisations such as Action for ME, ME association, AYME or google ME and see what comes up!
There is a lot of ME activity on Facebook and Twitter today, so please show your support if you use these sites. I am Jane E M Shaw on Facebook. I don't understand Twitter and don't need any other distractions!
Well here are some of my pictures, I hope you will keep following me and the pictures as I create them. I have a lot more to say and share, but ME is not willing and I don't want to miss this afternoon through pushing even harder. The pictures are not in any particular order, please make sure yo go to the bottom for the ones that are captioned.
Thank to all those who have supported me and donated, there is still chance Just Giving
Sunday, May 10, 2015
Princess update
The photos went well if somewhat exhausting, really feeling it now, will post main photos on Tuesday, but here is one to keep you going. It's Emily by the way not me!
Friday, May 08, 2015
I am well aware!
What a day yesterday, I was feeling so ill and down and convinced myself I was so pathetic, I was so stressed frustrated and feeling useless I needed to rest but couldn't I was so fed up I wanted to scream cry etc but that won't make it any better will it? Is it right to post things like this and bore every one with my moans and self pity or do I keep it to myself until my head explodes? Every thing feels wrong. I am so pathetic and so fed up.
I was have a really bad day mentally and physically, awful pain, dizziness and feeling sick and a brain that just wouldn't work, to name but a few of the symptoms. Some of the symptoms are getting quite scary, the numbness and tingling in my feet, legs, arms, hands and face, the awful dizziness that makes it hard to even sit up and the brain that feels like it has ceased up. I finally decided to make a Drs appt, but it is 2 weeks away and I know she can't do anything, so I may even cancel it before I go, I don't like wasting her time or stopping other people being able to get seen.
I have thrown myself into the awareness campaign, but that it not really a good thing to do as it shows how not to do things!! But hey ho. I have depressed myself by watching C word and Stranger on the Bridge and convinced myself that I am truly pathetic and moaning about nothing. I had a really bad day yesterday, mentally and physically. I ended up doing quite a bit of writing laid on the floor and had a chat with Rob whilst Emily was out so I feel a bit more settled. Just got to see how the next few days go, I have things to do so won't have as much time to think, but it will be hard physically and I will pay the price again.
This what I wrote, but it's only the tip of the iceberg
.jpg)
I was have a really bad day mentally and physically, awful pain, dizziness and feeling sick and a brain that just wouldn't work, to name but a few of the symptoms. Some of the symptoms are getting quite scary, the numbness and tingling in my feet, legs, arms, hands and face, the awful dizziness that makes it hard to even sit up and the brain that feels like it has ceased up. I finally decided to make a Drs appt, but it is 2 weeks away and I know she can't do anything, so I may even cancel it before I go, I don't like wasting her time or stopping other people being able to get seen.
I have thrown myself into the awareness campaign, but that it not really a good thing to do as it shows how not to do things!! But hey ho. I have depressed myself by watching C word and Stranger on the Bridge and convinced myself that I am truly pathetic and moaning about nothing. I had a really bad day yesterday, mentally and physically. I ended up doing quite a bit of writing laid on the floor and had a chat with Rob whilst Emily was out so I feel a bit more settled. Just got to see how the next few days go, I have things to do so won't have as much time to think, but it will be hard physically and I will pay the price again.
This what I wrote, but it's only the tip of the iceberg
.jpg)
Going over the old stuff made me realise what a lot we have been through and that we have got through it, but it also makes me want to be able to make the most of life now and we can't. One of the pieces written way back mentioned my weight falling to 7st 3! Ha that's ancient history I have not been over 7 stone since losing my post pregnancy weight and I do eat. When I used to see the CFS Dr all she ever said was put on weight you will feel better, actually it makes no difference as long as I can keep around 6st 11 or 12 which is sometimes hard I am happy with that, I can't be doing with any other pressures, but I do have to make the effort to eat properly sometimes to avoid my weight dropping to the lowest I got at 6st 8, but I am never going to be a big person and please don't try to feed me up as eating too much upsets my stomach and makes it harder to keep the weight on.
I really must stop now, but leave you with these
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