New Year Resolutions pt8 Family & friends

 At the beginning of each year many of us think this will be the year we make changes and get more out off life and become happy. In reality, not much changes and by the end of the year we feel bad for not having achieved anything that feels worthwhile.

Apparently the top 10 New Year resolutions are ;

1. Exercise more
2. Lose weight
3. Get organized
4. Learn a new skill or hobby 
5. Live life to the fullest
6. Save more money / spend less money
7. Quit smoking
8. Spend more time with family and friends
9. Travel more
10. Read more

I would like to do most these too, except for losing weight and quitting smoking, they are all big things, but we believe that they will make us more happy. Many people will have already given up, or like me won’t even have started yet as life gets in the way and most of the things we want are too vague and we feel overwhelmed by it or just realise it is not realistic. Then of course we get annoyed and feel like we have failed.

I have decided to write a post about each resolution, I would love to say I will do one a day, but know that is far beyond me, one a week would take us to the end of March!! So will just have to see how it goes and how much I ramble on or get distracted by other things, I am way behind even the once a week schedule, so much for resolutions! Well it’s nearly April and here I am still talking about New Year, is it me that’s slow or the year that is fast!!

No 8. Spend more time with family and friends

As I went to start this post I got an email saying that my Friends and Family railcard has expired, I can’t get another as Emily is too old for a child fare. I can get a disabled persons railcard, but I don’t have a valid award letter as PIP still under review from last April. Ah well won’t be going on ay trips any time soon.

I am always beating myself up about this and feel that I am a rubbish friend and family member.

I always feel that we should see family more, but as they all live 40 miles away it’s not just pop in for a cuppa and usually means we have to be away from home overnight to fit everyone in and not feel like we are dashing in and out and not actually seeing anyone. I try to be in touch as much as I can, but not being able to use the phone makes it hard when others don’t like/use messengers. Everyone seems to into video chats now, I can’t hear a thing on them it sounds just awful. Trying to organise meet ups is so hard to get everyone available at the same time and the getting ready and travelling is hard work, I always forget half my stuff, then have to go to shops to get something or manage without or borrow of someone and it makes me feel so stupid. It’s usually due to trying to pack stuff whilst thinking about what else needs doing or remembering or whilst someone else is asking me stuff.

Visiting is hard work as you are trying to take in so much information from people and away from home. I have to sacrifice rests as I don’t want to be ignorant and waste the usually short time that we have and trying to sort out what we are doing with who. Last time we visited I ended up spending half the time in bed as I was very unwell and then lost several days when we got home. I am usually the one who tries to make arrangements, but it’s like trying to herd cats! Then just when you think you are sorted someone puts a spanner in the works and it’s back to square one.

At the moment Emily has so many school commitments with exam preparation, that everything else has ground to a halt and we have to be a daily, including weekends, taxi service and even when not at school she can’t be out too long as there is so much to do. The exams aren’t taking into account that they missed best part of two years school and expect them to be up to standard and if not to fit two years work into a few weeks. School are cramming in as many extra sessions as they can, but not really listening to what the students need to learn so it’s often a waste of time and very frustrating. Thankfully it’s not long now and then we will be able to catch up with people again.

Totally irrelevant as we don’t have any babies in the family now, but love this!!!

We don’t really have close friends, you know the type you do everything with and you go out and have fun with. I don’t know how much of that is because of me being ill and having limited contact with people and how much is my difficulty with interacting with people.  I never feel like I quite fit. A Third Bliss blog says;

“It’s normal to feel like you don’t belong from time to time and you don’t really fit in.

Maybe you’re around people who are sort of like you, maybe talk like you, even act like you, but some part of yourself still doesn’t quite fit in with them.

And when you’re surrounded by people who seem to know everything – and who seem to know all the answers – it can be hard not to feel like an outsider.

But let me tell you something: You are not alone. There are thousands of people out there just like you who feel like they don’t belong either.

And guess what? That’s okay! It’s actually quite normal.  Everyone has a unique perspective on things and no one person is alike.  If we were all the same then the world would be a far less interesting place.

Nevertheless, when you don’t belong, you’re never quite sure where you stand.

You look around and it seems like everyone else has their own group and they all seem to get along so well and you wish you could share the same camaraderie.

Feeling like you don’t belong anywhere can make you question your place in the world and eat at your self-confidence.”

The article sites the following reason for feeling that way;

“Your characteristics & traits don’t fit in – We all feel like we don’t belong sometimes. We may feel like we don’t fit in, that we’re not good enough, or that we don’t fit the mould of what a person is supposed to be like”. Yep
“You have a disability” “Disabilities such as physical disabilities or mental disabilities can make it difficult for you to navigate in the world and can make you feel like you don’t belong” .Yep
“You’re a cynical person” sometimes
“You don’t fit the “standard“”
“You have trouble getting along with others” “You may have a hard time feeling a sense of belonging because you find it difficult to relate to other people.  You think that they are too judgmental and critical of your beliefs, values, and actions.  Or that they just don’t seem to understand where you’re coming from and why you act the way you do.” Yep
“You have trouble getting along with others” “You have difficulty making genuine connections with others because you’re scared of getting hurt or rejected.” Yep
“You are in your head too much“. “One of the reasons why you lack a sense of belonging is the tendency to overthink or self-monitor. When you are inside your head too much, you are not in the present moment. You are either thinking about what happened in the past or worrying about what will happen in the future”. “One of the reasons why you lack a sense of belonging is the tendency to overthink or self-monitor.  When you are inside your head too much, you are not in the present moment. You are either thinking about what happened in the past or worrying about what will happen in the future”. Yep
“You are awkward, quiet, and shy” “You are afraid of speaking your mind because you often feel awkward, quiet, or shy around other people.  You feel like an outsider in every group or social setting, even with your closest friends”. Yep
“You lack self-confidence“. “You lack confidence in yourself, which is why you feel unsure and you constantly doubt yourself.  There could be many reasons why you lack self-confidence or self-esteem”. Yep

The blog article summarises the feelings much better than I could myself and can be seen in full at Third Bliss if you can cope with all the adds

Most of the people I know now are online and many of them I have never met face to face,  and even then I don't really feel like I belong, even with like minded people.

How do you define a friend? “a person you know well and like, and who is not usually a member of your family” (OED). These days we talk about friends in a much more general way as people you have on your social media are called friends, many of these people you may not even know that well.

This has just popped up on my Facebook

I’d love to have a close friend to do things together and spend time together, but it would be hard work and often expensive too. I have friends who I talk to, but feel guilty if I haven’t been in touch with them, but then realise I am almost always the one who makes contact, I am beginning to realise that it’s not my fault at all and maybe I am not cut out for close friends. The influence of TV programmes and social media posts makes us feel we are missing out, but often life is not that rosy at all.

I often feel that my closest friend is my cat, but then she is family anyway. She is often the one who knows when I need company or comfort and she snuggles up with me when I am on my own and follows me around to see what I am doing. In return, nothing is without strings, I house her, feed her, play with her, attend to her at 3am and accept/dispose of her gifts!

So what can I do? I don’t have the energy to go out and find friends and have been let down and messed about so many times perhaps I am better by myself. Would be lovely to feel this way though and would love Pooh to be my friend;

Us Two

Wherever I am, there’s always Pooh,
There’s always Pooh and Me.
Whatever I do, he wants to do,
“Where are you going today?” says Pooh:
“Well, that’s very odd ‘cos I was too.
Let’s go together,” says Pooh, says he.
“Let’s go together,” says Pooh.

“What’s twice eleven?” I said to Pooh.
(“Twice what?” said Pooh to Me.)
“I think it ought to be twenty-two.”
“Just what I think myself,” said Pooh.
“It wasn’t an easy sum to do,
But that’s what it is,” said Pooh, said he.
“That’s what it is,” said Pooh.

“Let’s look for dragons,” I said to Pooh.
“Yes, let’s,” said Pooh to Me.
We crossed the river and found a few-
“Yes, those are dragons all right,” said Pooh.
“As soon as I saw their beaks I knew.
That’s what they are,” said Pooh, said he.
“That’s what they are,” said Pooh.

“Let’s frighten the dragons,” I said to Pooh.
“That’s right,” said Pooh to Me.
“I’m not afraid,” I said to Pooh,
And I held his paw and I shouted “Shoo!
Silly old dragons!”- and off they flew.

“I wasn’t afraid,” said Pooh, said he,
“I’m never afraid with you.”

So wherever I am, there’s always Pooh,
There’s always Pooh and Me.
“What would I do?” I said to Pooh,
“If it wasn’t for you,” and Pooh said: “True,
It isn’t much fun for One, but Two,
Can stick together, says Pooh, says he. “That’s how it is,” says Pooh

This popped up on my Facebook too, definitely never happens to me!

New Year Resolutions pt1 Exercise

 Well it’s that time of year again where we all think this will be the year we make changes and get more out off life and become happy. In reality, not much changes and by the end of the year we feel bad for not having achieved anything that feels worthwhile.

Apparently the top 10 New Year resolutions are ;

1. Exercise more
2. Lose weight
3. Get organized
4. Learn a new skill or hobby 
5. Live life to the fullest
6. Save more money / spend less money
7. Quit smoking
8. Spend more time with family and friends
9. Travel more
10. Read more

I would like to do most these too, except for losing weight and quitting smoking, they are all big things, but we believe that they will make us more happy. Many people will have already given up, or like me won’t even have started yet as life gets in the way and most of the things we want are too vague and we feel overwhelmed by it or just realise it is not realistic. Then of course we get annoyed and feel like we have failed.

I have decided to write a post about each resolution, I would love to say I will do one a day, but know that is far beyond me, one a week would take us to the end of March!! So will just have to see how it goes and how much I ramble on or get distracted by other things.

I always find this time of year hard and would love to be able to do so much. I always feel that I haven’t achieved anything and am in the same place I was a year ago, only change is I am a year older!!

No.1 Exercise more

I would love to, but I have a condition that limits my ability to exercise and pushing myself makes it worse. I use a wheelchair out of the house and have a blue badge. So why do I think I need to do more exercise? I feel guilty that I can’t walk and join in things and that someone has to push me in my wheelchair. I feel bad that I can’t do things like taking my daughter swimming or to other sport and leisure activates. I feel that because I can’t do much it means that the rest of the family don’t get enough exercise and when we do go out it has to be wheelchair friendly so not much fun really. I always feel that I am holding everyone else back. Most Drs I see tell me I should do more exercise, but they don’t see the consequences or have to live with them. Whilst I have got used to being in a wheelchair it doesn’t mean I like it or enjoy it. Comments like you are lucky you can sit down etc make me mad, but of course you have to agree and laugh! Being in a wheelchair is isolating, the person you are with is behind you all the time, you only get a view of people’s bums and elbows. You get to go at the pace of the person pushing you and only get to see what they want to see or miss things altogether as you get left to wait or get pushed past whatever it is so the person pushing you can see it. You get plenty of dirty looks for parking in disabled spaces, even when you get the wheelchair out and if you dare to walk you are the devil himself. Getting out in the fresh air isn’t easy as the ground needs to be relatively smooth and flat. Living at the top of a hill means we don’t get far before it gets too difficult for the person pushing. We tried doing hills when on Holiday in Austria, but it nearly killed my husband and damaged my wheelchair and it’s very uncomfortable for me. I do have a mobility scooter, but don’t use it a lot as I forget to charge it, can’t use it in the rain or cold weather and again the ground need to be quite even and you have to know where all the drop kerbs are. I do want to use it more and get out for some fresh air on my own, but limited to where I can use it locally.

To get a blue badge you have to receive certain benefits and then have to apply to the council. My Blue badge expires in March and you have to renew 3 months in advance. I am unable to renew mine as I have an expired PIP award. I am still being paid PIP as my award in under review, but reviews have been delayed. I submitted my paperwork in April, when then told me I had just 3 weeks to send in everything they wanted. I got a text before Christmas to say they haven’t looked at my claim yet. Whilst it is under review I get paid but have no award end date which I need for Blue Badge. Blue badge say I need an extension letter from PIP. PIP say I have an extension to February, but of course that is no good for Blue Badge as my current badge is valid until March. Standard Blue Badges are awarded for 3 years at a time, but they will only award temporary ones for the extension period. PIP say I will get a year extension in February, but I need evidence for Blue Badge which I don’t have so have to wait and see if it get sent. If I lose my Blue Badge it means I will no longer be able to go out on my own, not that I do much, but will mean I can’t even collect my own prescription or attend a Drs appt. Even though I don’t need to be able to park close when someone is with me, we do need level access and room to get wheelchair out of car, which is not always possible in standard spaces. The disapproving glares would stop though!

I talk to several other people with illnesses worse than I have and they are able to do much more than me, so I feel lazy and pathetic and that I should be able to do much more. I shouldn’t compare to others but I do.

Before I was ill I walked everywhere, only used car occasionally, now I can’t get to the end of the street without it! I have always had jobs that meant a lot of moving about, nursing, working with children etc, I’ve never had a sedentary job. I have never been a sporty person, but did enjoy swimming. As my daughter was growing up I was so sad that I could take her for a walk or swimming and stuff or even walk her to school except on my scooter.

I feel very isolated and hate being dependant on others to leave the house. I can’t even drive that far so again that limits what I can do.

So having said all this what can I do? Obviously walking is not an option, nor is asking people to take me to places so I need to be more independent within what I can do. I need to use my scooter more and just get out in the fresh air and do a ew of the errands myself so I am not always asking someone else. It is a bit of a hassle getting scooter out as it is kept in the garage and I have to move the car to get it out of the drive, but it should not be an excuse. I need to make sure scooter is charged up all the time too, so I can use it when I fancy and not have to plan ahead to make sure I plug it in. I can’t use the scooter in the rain so that is a limit as is the cold weather as I get so cold it becomes painful.

Useless.com

I spend a lot of time feeling totally useless, and guilty.  Last week was particularly bad after, trying to sort out my craft stuff and move it to be more accessible, but of course when I do anything like that I have to pay for it and have landed myself in bed a few times from trying, but it's getting there slowly and I can see better what I have got (far too much) and of course found lots of unfinished stuff and had lots of ideas for using things, but never the time or energy.  Also On Friday Emily and I tried to take part in Rivers Meet Give a Duck an outfit which is a group making outfits for Chemo duck, cuddly ducks given to children having chemotherapy.  I should have known it was beyond me, I needed to be able to sit in a noisy room, follow a pattern, sew, cut out and have Emily with me, I lasted about 15 mins!  Plus part of my sewing machine was missing so couldn't use it and had to buy a new bit!  I was so disappointed and was in floods of tears after looking really stupid, letting people down and setting a bad example to Emily.  I am not really sure why I thought I would be able to do it anyway, my sewing skills are very basic and I can't follow recipes or patterns, but I thought it was a nice idea and Emily wanted to join in. I was feeling so bad when we got back home, I had bought a scone to eat, (gluten free!), which I rarely do and I wasn't able to eat it before we left as Emily and I were so upset.  When we got home Rob asked if I wanted the scone, I replied why should I treat myself?  I allowed myself half of it a bit later on and the other half a day later.  I posted a Facebook status saying "so upset with myself today, I really hate this illness and its stupid effects on me and my family, feeling useless"

There is also a course I would love to do on Play Therapy as a qualified Playworker with some knowledge of play therapy it really appeals and is on an offer, but it is up 150 hours of work.  At best I would manage an hour a day when Emily is at school and some days even that wouldn't be possible and would mean I wouldn't be able to manage any craft and would take me the best part of a year.  Again I got really upset and felt so useless, other people study on top of full time work and family commitments. Gaining a qualification wouldn't be of any use anyway if I can't work and would just add to my other unused qualifications, that is assuming that I would be able to do it which I might not with finding reading and understanding very difficult.  I am still tempted just for the material without getting the qualification.

Yesterday Emily was upset with me as she wanted me to go and play a game outside with her, but I can't play physical games and it is too cold for me to be outside and just sitting.  I did manage to rescue the situation by letting her throw a ball inside and we had a game of catch with me sat down which seems to have pacified her for now, but doesn't always work.  My husband quite often refuses to play physical games with her too, he has the ability, but may not feel like it or want to when she asks, he doesn't feel guilty, but then I feel guilty because I can't do it and because he doesn't want to and because she doesn't have siblings or friends to play with and so on!

It feels like everything I can do or can't makes me feel useless or guilty in one way or another.  I am definitely guilty until proven innocent!

So true Charlie Brown

• star

ME and My Mum 20 Questions.

There is a set of questions going round on Facebook at the moment that you are supposed to ask your kids.  I tried it on Emily, she was not impressed as said why are you asking me these you know I don't know, but some of her answers were quite enlightening and a reflection of how the ME affects us as a family. Emily's answers are in blue.

1. What is something your Mum always says to you?

Shut up, be still.  

Sadly true, at times I am really sensitive to noise and hustle and bustle and I can't concentrate on things in a noisy or busy environment which a house with a child is most of the time.  I hate telling her to be quiet or quieter, but she is so loud and never stops talking, but I don't think I ever tell her quite so bluntly as "shut up." I do ask her to be still if we are watching TV or playing a game as again it is very distracting and also makes me feel sick and dizzy, but she is never still.  I worry that she needs more exercise.

2. What makes you happy?

My bedroom and birthdays, (anyone's birthday)

3. How does Mum make you laugh?

Tickles me.  

True but there is a limit to when I can do it and how much :-(

4. What makes Mummy sad?

Daddy sometimes and me doing too many cartwheels.

True, Rob and I do disagree a lot about things as we are both tired and irritable a lot of the time and have different priorities and approaches to things.  She is always doing cartwheels and there just isn't the room in the house, but she does them anyway!

5. What was Mum like as a child?

I don't know.  Cheeky?

Ok fair point, not much is said about when I was a child.  I would not have got away with cheeky though Emily.

6. How old is Mum?

43

True, but only for a few more days

7. How tall is Mum?

No idea, about 2 metres?

Lol I had to check, but that is 6ft 7, I am about 5ft 3!

8. What is Mum's favourite thing to do

Get out of the house or have a bath

Pretty accurate, given my limitations.

9. What does Mum do when you are not around?

Sleep or computer

Partly true, I have to rest, but don't sleep, but I lay on the bed which to her means sleep.  Yes sadly I do use computer a lot, but its not all that I do.

10. What is Mum good at?

Craft

I don't think I am that good at it, but it's what I do given the chance, but its not easy and often stresses me out.

11. What is Mum not good at?

Cartwheels and Gymnastics

True, but she has never seen me try!

12. What does Mum do as a job?

Nothing

True, sadly

13. What is Mum's favourite food?

I don't know, is it fish?

Well to be fair I do like fish, but I am allergic to it, so she has never seen me eat it as it literally makes me sick.

14. What makes you proud of Mum?

I have no idea, making bracelets maybe?

Sad answer

15. What do you and Mum do together?

Watch TV and make things for charity

Ok fair enough.  The charity things has come from Emily deciding last night that she is going to make bracelets from pipe cleaners and sell them for my charity, no idea how she plans to sell them, but she has a big bag of them made and says they are 10p each.  She has us all making them.

16. How are you the same as Mum?

Sometimes we have the same clothes in different sizes.

True I do sometimes buy kids clothes and we have a few items the same

17. How are you different to Mum?

Hair

True

18. What does Mum like most about Dad?

Funniness

Sometimes I guess when it doesn't drive me mad!

19. Where is Mum's favourite place to go?

Rivers Meet and Salute

This is probably because these are the only places I do go.  Rivers Meet is a cafe, I do like it, but the noise gets too much and I am not able to enjoy it as much as I would like, we do go there for lunch sometimes at the weekend as otherwise I only get out to do school run.  I used to go to a quilting class there too in a quieter upstairs room, but it has moved and I can't go any more as it is too far away :-( Salute is a restaurant, we used to go in quite a lot, but now I find it too noisy and find it difficult to find suitable things to eat, even though they do Gluten free its difficult to find things with my other intolerances.  It's also quite expensive and we can't afford it that often, its amazing how much different eating out for 3 is to 2.  Emily likes it much more than me and some of the staff have known her from being a baby so they make a fuss of her.

20. How old was Mum when you were born?

In her 30's, from my working out 35

True, the Maths homework is paying off!

Fundraising Update - How do you raise awareness and money whilst keeping within limitations?

Well it's all going well so far, I have got £240 donated, which is nearly half way to the target I set, which was actually totally random, but would be great if I could reach it.

My promotional goodies have arrived and I have spoken to Emily's teacher and am hoping that the children will be able to do something princess related :-) I have also got some Princess light up balloons :-0

In June we had a photo session booked, but due to another commitment needed to cancel it, but then I saw there was a session on May 10th, the day I am planning my Princess dress up, so I am hoping we can change to that day, it will be great, but exhausting!

It's so difficult to know what is best to do, I mean how do you raise awareness and money and keep to limitations?  At times it is exhausting just thinking about it.  Even writing the blog and setting up the giving pages takes effort especially as I don't have a laptop or tablet so have to sit at my desktop.  Getting involved and going to events is not a good demonstration of ME as no one can see the effort that it takes and the consequences after as we go in there with a smile and join in as much as we can.  I know I am pushing my limits, I am struggling quite a bit as it is with pain, fatigue, dizziness, brainfog and tinnitus being very bad at the moment, so I am actually doing myself any favours by trying to do this?  But its too good an opportunity to let it pass by or to hope that someone else will do it instead.

I am trying to get people to donate direct to my just-giving page, to save me having to collect and donate on peoples behalf and if people donate for themselves they can claim the gift aid.  I am also determined not to chase people for money, when we have done sponsored events before I spend so much time reminding people they said they would donate and trying to get money from people and then ending up putting a lot of it in myself, its really not worth it.  If people really think it is a good cause then they will make the effort to donate, if they don't I think that is probably the true reflection of what they think about the cause or the person trying to raise money, sorry if that sounds harsh.  Having said this Just giving is not working at the moment, which is not very helpful, but it's probably because everyone is making donations following yesterday's marathon.

I had a giggle at this 

but seriously for a person with ME, just getting out of bed can feel like a Marathon.

I am going to be joining in with the Team Princess auction on May 12th.  I need to sort out some things to donate.  If any of my crafty friends have anything they can donate, it is all for a good cause.  The organisers want to know details of any items by May 5th.

I am also following with interest Knit and Tulip for ME, they are currently doing a campaign for knitting tulips to go into public displays, the first being in London on May 14th.  I really want to join in and knit, but know that I won't get chance before May 14th, but they are still collecting afterwards. (The pattern for the Tulips is on the site). They are also every day during April, listing an ME symptom or how ME affects us each day, up to day 26 I have all the symptoms :-(  Sad but true.  This also makes me feel awkward about trying to raise awareness as I don't want to sound as if I am moaning or wanting people to feel sorry for me, I know there are many people in much worse situations and many more worthy causes. Hence my comments yesterday saying;

"Still time to donate to my Princess for ME event  https://www.justgiving.com/Jane-Shaw5, read about it here http://poohbear71.blogspot.co.uk/2015/04/princess-for-day.html

I know it's not the most important thing to donate to, but it means a lot to me and every bit helps, so please give if you can. If you are not able to give, please spend just a few minutes finding out the effects of ME at sites like http://www.actionforme.org.uk/ or http://www.meassociation.org.uk/, many thanks"

Lastly as I am now very dizzy and in pain and feeling sick and its only 9.30am!!  I saw this and will definitely be printing some off for my publicity information

and a few others I might use if I have the time and energy to print them off.

(I don't have the energy to put make up on and wash and dry my own hair, but still like this one)

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.

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

except I think, but it doesn't work.

Book

ME and Mummy and ME

Copyright © 2013 Jane Shaw

All rights reserved.

Pg1

ME and Mummy and ME

My mummy has two of me, the first is me Emily.  The second is an illness called ME, said M.E which is short for Myalgic Encephalomyelitis.

Mummy has had the ME 10 years longer than she has had me.  The ME is like a part of our family.

pg2

The ME makes Mummy very poorly.  She feels very tired all the time. She has lots of pain. She feels sick and dizzy and lots of other things too.

You cannot see the ME so my mummy looks the same as any other Mummy.  The ME makes it difficult for her to do normal things.

pg3

Mummy cannot walk very far because of the ME.  She has to drive me to school and park very close to school.  This makes Mummy sad. 

Mummy knows that it would be better for us to walk and get exercise and fresh air.  Mummy likes walking and would like to do it, but the ME won’t let her.

pg4

If we need to walk Mummy uses a wheelchair or a mobility scooter.  The scooter is not like my scooter that I stand on. It is like a chair on wheels and has a motor to drive it.  Sometimes I say that I am tired and need to sit on Mummy’s knee.  I am too big and heavy to do that now.  Mummy has to say no.

pg5

The ME means Mummy needs to get lots of sleep and rest.  When I am at school Mummy has a rest before she collects me.  At weekends Mummy has a rest in the afternoon and I do things just with my Daddy

It is very difficult for Mummy in school holidays.  I get to see other people like Grandma and Pat so Mummy can have a rest.  It makes Mummy sad that she has to rest and cannot spend all day with me. 

Mummy goes to bed just after I go to bed.

pg6

If we go out the ME means it is very tiring and hard work for Mummy.  

She always tries very hard. 

It means that she gets a lot of pain and feels more poorly. 

Mummy sometimes gets upset because she can’t do the things she wants to do. 

Sometimes Mummy gets upset because she has tried to do too much and feels very poorly.

pg7

Barbara helps with jobs in the house. 

Sharon and Tracey wash Mummy’s hair because she cannot use her arms properly because of the ME. 

If the people who help are not there Mummy has to do the things and it is hard for her. 

If I help Mummy it makes it easier.  Help means that Mummy can do more things with me.  But it doesn't mean I always help!

pg8

Daddy has to cook meals.  Mummy sometimes does easy baking with me.  I have to do all the mixing and help to clean up.  It is easier for Mummy if she can sit down.  Mummy needs help to follow the recipe so sometimes we need Daddy’s help. Mummy likes cooking, but the ME won’t let her

pg9

I am very noisy and have a lot of energy.  This can be hard for Mummy. 

Mummy cannot run around with me.  Mummy can play sitting down games with me. 

Mummy likes making things.  We can make some things together.  

pg10

If there is a lot of mess Mummy cannot clean it up and we have to wait for Barbara or Daddy to help. 

Sometimes Mummy does the cleaning and tidying herself.  It makes her very poorly.  If she does this she cannot do as many nice things. 

Sometimes it makes Mummy angry.  

Sometimes it makes Mummy cry.

pg11

With Mummy I like doing……..

It makes me feel…………..

With Mummy I don’t like ………..

It makes me feel……………………….

pg12

I get angry when Mummy cannot play outside with me.  

I get angry when Mummy cannot come to find me every time I shout for her.  Sometimes I am naughty and shout Mummy a lot.  This is not good for Mummy.  Mummy gets upset with me and the ME. 

pg13

Sometimes I don’t really understand what Mummy can do.  It is not because Mummy is saying no to what I want, it is because of the ME. I get upset if Mummy needs to have a rest when I have been naughty.

Sometimes the ME makes mummy really poorly and she needs to spend more time in bed.  This makes Mummy and me very upset.

pg14

There are lots of things that Mummy cannot do because of the ME.

My Mummy does not go to work.  This means Mummy is always at home for me. 

Mummy cannot pick me up, but we can have lots of cuddles.  

pg15

The ME makes Mummy sad.  Mummy does not like the ME.

I can make Mummy smile.  

pg16

Mummy always loves me

The End

Well I am worn out after sorting all this.

I hope it displays ok, it looks much better as a booklet.  There are a few issues with HTML tags, but it would be too hard for me to find them all and take them out 8-|