Tuesday, January 27, 2015

25 year old pain :-(

I wrote the piece yesterday, expecting to be able to write loads and help me deal with some emotions that have been reignited recently.

I did not get that far, somehow the story got stuck and I am finding it difficult to deal with.  I purchased this book Letting Go in the hope that it will help, but I find it difficult to take things in and like to read for pleasure, this will feel like another chore to add to the never ending list.

The pain was reignited when I saw that Derbyshire Royal Infirmary was being demolished and an article in the Daily Mail showing pictures of the abandoned hospital and nurses home.

I saw this on facebook

That's how I feel, it was never 25 years ago, even though I have an 8 year old daughter and have been married nearly 14 years!!  Makes me feel so old and useless!

Monday, January 26, 2015


Wow I have been overwhelmed by the number of people who read my last blog post http://poohbear71.blogspot.co.uk/2015/01/why-should-i.html and thank you to those who have commented by email, facebook and on the blog, its great to get feedback.

I have had a rubbish few days with Emily off school at the end of last week and me now fighting the same bug.  I literally couldn't do anything yesterday, was either in bed or laid on sofa watching Emily play.  I am up and about today, but struggling so don't want to push myself too much.  I do have some issues to blog about, but it will have to wait for a bit of my strength to return.

I would like to share a few things that I have made recently.

I think this one looks like a popcorn bracelet.

 My take on Beads direct neon snowflake bracelet

The photos don't really do them justice, especially the orange one which is made with Swarovski crystals my version of Beads Direct feline bracelet.  It was not very ME friendly to make as I found cutting and bending the wire hard work and fiddly, but it is very pretty and my favourite colour.

I have also done some things with Emily
Its Elsa, Anna and Olaf from Frozen

Well that's my energy gone for today.  The boiler broke down this morning and I thought I was going to have to wait all day for the repair, but thankfully they arrived before 10am and I now have heating again and don't need to sit waiting so off to lie down and read some more of my book Leaving Time by Jodi Picoult, its getting near the end now where all will be revealed I hope, its one of those keep you guessing, twist and turn books.

Wednesday, January 21, 2015

Why should I?

I have spent large chunks of the last few days in bed as I have been unable to do my normal stuff without feeling too ill and it is already hitting me this morning.  BUT why do I feel guilty, why should I try and do more, why should I be up and about and doing as much as possible, why should I do things I know will make me feel much worse.  What is wrong with resting, or lying in bed when I have the chance?  What is bad about resting most of the day so I feel ok when my daughter finishes school?  Why should I do what other people want me to do or keep others happy when it makes me feel so ill?

For weeks I have been feeling guilty because I can't make enough stuff to be able to sell and get some money back, but why should I, I am not well enough to do it and often don't manage to make enough for my own needs, so why do I feel I have to do more.  Why do I feel guilty about buying things to make and keeping them for when I feel up to it? What is wrong with making things for myself even if I don't get much use out of them?  Why do I feel that making things for gifts has no value to them, because I have made them, even though it takes a lot of time and effort on my part, but yet if I buy something someone else has made it has a value?  Why do I feel that other peoples things are better than mine, even though they probably took a fraction of the time and effort.

Why should my pain and other symptoms count less than anyone else's?  Why should I feel guilty for asking for help or support or for admitting I feel awful?

Why should I try to appear normal when I am not?

Why should I let people's expectations, assumptions or demands get to me and take priority over my needs?

If I don't feel like doing things, why should I feel I have to, or feel guilty for just sitting browsing Facebook if that's all I feel able to do or feel that I have to make up for it later.  I have a bit of a love hate relationship with Facebook, I think it is a big waste of time, but also feel it is my only connection with the outside world and also people with similar issues.  I often get tied up in things and then realise I have used all my time and energy on something that I shouldn't be doing.

Why should I feel guilty that I can't walk my daughter to school, many others choose not to.  Or that I can't prepare and cook a proper meal, again many choose not to.

I could go on forever, but why should I?  It will get boring and waste my energy, all ready feeling bad and needing to rest.  I will sit watching the snow and try to make a bit more of my daughter's birthday card, I only have 2 weeks to go!!

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.

Saturday, January 17, 2015

Two new medical articles about ME

Guest post by Rob Shaw

This week saw two articles released about ME. One was about fairly poor piece of research that got lots of press attention; the other was a draft National Institutes for Health (NIH) report in the US.

The first one, Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial in The Lancet Psychiatry reported on an additional analysis of data from a trial called PACE, and concluded that "Our main finding was that fear avoidance beliefs were the strongest mediator for both CBT and GET", which in plain English means they think that one of the treatments tested - Graded Exercise Treatment - was less effective than it could have been because some participants were afraid that exercise would make their condition worse.

This spawned several very naively written articles in the media such as:

  1. The Independent: Chronic fatigue syndrome sufferers ‘can benefit from exercise’ 
  2. The Daily Mail: Chronic fatigue victims ‘suffer fear of exercise’: Patients are anxious activities such as walking could aggravate the condition
  3. The Daily Telegraph: ME: fear of exercise exacerbates chronic fatigue syndrome, say researchers
  4. The BBC: Exercise can help ME, researchers say
Following the publication, there have been some very good personal accounts of the impact of exercise on ME, this one in The Guardian is particularly good. However, few have commented specifically on the methodology, although most of these reflect issues with the original trial. One good summary of the issues is this one from ME Research:

"[we already know] that psychosocial interventions can help some moderately affected ME/ CFS patients manage or cope with their symptoms, but otherwise have only an adjunctive role in the treatment of the illness. In fact, the situation is exactly the same as in other chronic illnesses, such as multiple sclerosis, where non-specific psychological approaches can help some patients to manage symptoms, but are no substitute for the whole clinical and therapeutic armoury required to treat and (ultimately) cure the underlying disease."

The NIH draft report, I think begins to gets at one of the fundamental issues that is inhibiting all research into ME: there is no clinical diagnostic test so (a) the subject group probably includes people with ME and other conditions with similar symptoms (or ME might be 2 or more similar conditions) and (b) measures of improvement must rely on patients' reports of symptoms rather than improvement in a clinical test result. For me, one sentence sums it up "Innovative biomedical research is urgently needed to identify risk and therapeutic targets."

The recommendations made in the draft report are far reaching and once the final report is released in a few weeks time, more might be known in terms of what may be ultimately be done to achieve its proposed strategies. The NIH's reports could have far reaching consequences since the NIH directs research budget of around £30bn a year, more than 25x greater than the Medical Research Council in the UK.

Finally, a mention for The Economist, who unusually produce a mediocre summary of The Lancet article with the simplistic title "Fear to tread". That said, I think their conclusion (below) is spot on, and as the NIH say, applies to most diseases (there is evidence in many cancers, for example):

"That both [psychological and physiological mechanisms] are involved is hardly surprising. The link between a healthy mind and a healthy body (and vice versa) has been known since classical times. That, though, is by no means the same as saying something is all in the mind."

Thursday, January 15, 2015

Latest Makes

I have actually made a few bits in the last week or so

Coaster from the book I Can Quilt.  As ever I struggled to work out the instructions and had to get Rob to explain, once I understood it was quick and easy to make.  The book and patterns are aimed at Children!  This was made because Emily wanted to use my sewing machine, but she was too impatient to wait for me to cut out and pin together so went off and left me to it.  She does like the finished item though and I have some more squares cut ready to make another.

Emily wanted to sew something herself so we made some little pockets 

I stitched a hem on the top for her and then she sewed it up and turned right way out, really not bad for her first attempt, but too impatient to make something more complicated just wants to sew bits together.  She tried out some of the stitches that I haven't tried yet.

Made some bracelets too, but pictures are no good so need to take again.

Wednesday, January 14, 2015

ME, What we are up against! Updated again!

This article has been written in today's Telegraph ME - Fear of exercise and other papers.

I wish I was just afraid to exercise!  I am afraid of the consequences when I do exercise, pain, fatigue, dizziness to mention just a few.  The feeling of utter exhaustion from walking a small distance so much so that I can't even speak coherently sometimes and can be unable to walk at all.  I potter about in my house usually doing more than is good for me.  The only exercise I do out of the house is walking Emily from car to classroom and reverse, often that can be very difficult and when her classroom was farther away from car park I was literally unable to do it.  As for other forms of exercise, forget it.  I used to walk everywhere, I enjoyed swimming, I am unable to do these things and hate the fact that I can't, I am not lazy and frightened to exercise.  I hate the fact that I can't do things with my daughter and miss out of much of her growing up because of having to rest or being too ill.  I hate that I have to take her into the school car park to be able to take her to school myself instead of walking which is better for her.  If she wants to go swimming or to do many other activities I have to say no or get someone else to take her.  I can't play games like hide and seek with her or dance to the music she likes to do, all I can do is watch. If we do something out of the house, which is usually no more than a trip to the shop I have to use a wheelchair.  My daughter hates this as she feels unsafe due to the fact that my husband is pushing me and can't keep a hold of her too, she gets very distressed, I used to be able to sit her on my knee, but she is too big now.  My being in the wheelchair also makes her feel she is being ignored even if she walks alongside or holds my hand.  If I over do it I get adrenaline problems and then can't sleep and get palpitations and an upset stomach, this can happen just from a basic daily routine.  I could go on, but I fear it will be in vain.

Would people say a diabetic is scared to eat sugar, or an asthmatic is scared to breathe?

Please give us a break and write some honest articles that don't make out people with ME are lazy, or mentally ill, work shy or fraudsters.  We are genuinely ill and deserve recognition of that, with support and understanding not continuous pressure and disbelief, which makes having the condition all the harder.  I don't expect ME to be a top medical priority and I accept that there is little than can be done, but we are not liars and a little understanding would go a long way.

I was supposed to be having a more restful day today as I overdid it yesterday, well I over do it every day, but anyway yesterday was particularly bad, so needed an easier day.  Then I got caught up in all this and the emotional effects are as bad as physical exercise sometimes more so.  I will now do my exercise, walking up the stairs to my bedroom top try and rest, but it is unlikely to be restful thanks to all the rubbish I have just read.  perhaps they should also add we are afraid to read what is written about ME and that also affects our health and ability to function.

Rant over, well for now, I am sure it will go on in my head and make me feel worse than I already do, oh I am so cross.

Rob has read the original article The Lancet entitled Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial.  His interpretation of it was sufferers who are fearful of treatment are less likely to benefit, so CBT needs to address this. Another negative affect is sleep problems, and says that graded exercise is less effective if people aren't supported with expectations and sleep.  This is rather different, but still saying exercise is the way to go.  It probably is if you are recovering and building back up to normal.  Most of us have ended up in a mess due to trying to push our way through the fatigue and get on with life when we were first ill and many of us still continue to do push ourselves to meet other peoples expectations rather than doing what is best for us.  I am not good at accepting my own limitations even after nearly 20 years of being ill.

I am still angry, just in case no one had noticed ;-)


How do you deal with Elephants, I don't mean the big grey things, but the one that always lurks in the room.  ""Elephant in the room" is an English metaphorical idiom for an obvious truth that is either being ignored or going unaddressed. The idiomatic expression also applies to an obvious problem or risk no one wants to discuss.
It is based on the idea that an elephant in a room would be impossible to overlook." (Wikipedia).

"The term refers to a question, problem, solution, or controversial issue which is obvious to everyone who knows about the situation, but which is deliberately ignored because to do otherwise would cause great embarrassment, or trigger arguments or is simply taboo. The idiom can imply a value judgement that the issue ought to be discussed openly, or it can simply be an acknowledgement that the issue is there and not going to go away by itself" (Wikipedia).  Conversations and posts on social media are usually very superficial and skirt around issues to avoid rocking the boat and causing upset by being honest or realistic.  At home we make excuses about lack of time or other priorities.

There’s an elephant in the room.
It is large and squatting, so it is hard to get around it.
Yet we squeeze by with “How are you?” and “I’m fine…
And a thousand other forms of trivial chatter.
We talk about the weather.
We talk about work.
We talk about everything else…
Except the elephant in the room.
We all know it is there.
We are thinking about the elephant as we talk together.
It is constantly on our minds.
For, you see, it is a very big elephant.
It has hurt us all.
But we do not talk about the elephant in the room.
Oh, please, say her name.
Oh, please, say “Barbara” again.
Oh, please, let’s talk about the elephant in the room.
For if we talk about her death,
Perhaps we can talk about her life.
Can I say “Barbara” to you and not have you look away:
For if I cannot,
then you are leaving me alone…
in a room…
with an elephant

By Terry Kettering

Party Dilemma

In an effort to make make Emily's birthday party easier we have booked a bowling party.  Included in the package is bowling and food.  I have ordered a cake, so thought I was sorted.  Then I was talking to someone who said they are good parties, but there are no desserts included with food and no party bags, she said oh you have to have desserts and party bags!  Do I really? I am paying for them all to go bowling and making sure they get fed, why do I need to do more?  Why is that and a piece of cake not good enough.  If I go for desserts what do I provide, could keep it simple and just take pack of biscuits, but there will be someone who makes a fuss as they don't like my choice, if I take a selection pack they will argue over the best ones, can't win really.  Do I take buns, or shock horror some fruit?! Then there is the party bag what do I put in it, that's on top of buying the bags themselves, you usually have to include some little gifts and lots of sweets!  I don't like giving lots of sweets, but you are seen to be mean if you don't.  The kids get so many, everyone seems to give them sweets and I am seen as mean even by adults for trying to ration how many Emily has.  it never works anyway as she gets given them by other people, they get them from school for people's birthdays and as rewards from teachers and at any children's event they go to.  Kids food out usually includes sweets.  Emily asks me every day for sweets on top of all these things and I can't say no every time, so she gets far more than I would like, so putting lots in a bag and giving them to others goes against what I believe in, but its the done thing so which way do I go?  Then there is the gifts what do I include that suits everyone and I can get fairly cheap times 8!  Its madness, just to do the right thing!!  The bowling alley is in an amusement arcade, it would work out cheaper to give them some money for the machines, but they would still expect party bags and sweets as well.

On their birthday most children take sweets into school for every child in the class, you are frowned upon if you don't.  One year I rebelled and sent fruit bars instead, wow you would have thought I was trying to poison them!!  We got a letter home a few weeks ago asking that the children please save the sweets until they get home following an incident in school, no idea what the incident was.  I was hoping the letter was saying that they couldn't take them in any more, but it says they encourage it as it shows kindness and sharing. Oh dear  Maybe I should tell them it doesn't consider the health of the children or the affordability to parents, but I just sound like I am being mean.

This is on top of organising the party, paying for it, sending invites, fielding replies, buying birthday presents.  Then three days later its Rob's birthday.  No idea yet if we are doing anything for that as its the day after Emily's party, so I won't be in good shape at all.

I can't cope with all this hassle following on from Christmas and with my PA off sick.  I am just struggling with limitations and feel I have little support or understanding from others.   I haven't slept properly for months it seems never ending.

I should not complain and really need to bear this in mind.

Tuesday, January 13, 2015

Hey Ho

Well as ever its another tough week, I spent most of yesterday in bed, just be be able to meet Emily's basic needs, but then she insisted that I took her to Gymnastics and did her bath.  I had to miss her church service as I was too unwell to get there, she told me not to worry about it, but was disappointed as she had a part in the service, which i didn't know about until after, don't think she did either.

Just as I was taking Emily to school my PA called in sick, so now then there were lots of unexpected jobs to do when I was already struggling.

I can't expect PA to come to work and Rob has to be at work they are fixed, but there are things that need to be done.  So far I have cleaned hamster, done washing, made cereal (didn't get chance yesterday so went without), taken Emily to school, had hair washed, sorted dishwasher although much went back and its gone on again, ordered my bread mixes, cleaned up after Timmy (cat).

It now just before 10am and I am really shattered and feeling rubbish, but still need to sort out shopping order.  Most people if they felt like I do would not get out of bed until they felt stronger and better, I don't have that choice I have to get up and try to get on.  If you think of this as my job, I don't get time off for being ill or for holidays and I have to work overtime if other people are not able to do their bit eg if Barbara doesn't come or you have something on as he does tonight.  Yes I do get a rest during the day, but its through desperate need not choice. 

I feel like I have to keep going, I am the one who gets Emily to do homework, get ready for bed etc, gets her snacks deals with her back chat, gets her ready for activities.  I don't have the time or the energy to do nice things with you or Emily, its always just the necessary boring and tiring stuff and then I can't take her somewhere or play a game cos I am not well enough to concentrate.

I am really struggling with driving I don't feel in control and feel like I am all over the road, mainly cos I have to squeeze through small gaps.  I feel like other drivers are curing me all the time and as for parking no chance.  This car seems harder somehow, its easier to turn, but I have not yet managed to park correctly.  I can't give up driving as its my last shred of independence, but then only driving I do is difficult and to meet other peoples needs not my own.  I also usually have Emily in the car, so its scary.  I am sure I am not dangerous, but it does feel like it and scares me.

I am still struggling post Christmas and there is no time to get back to normal, which is still pretty rubbish.  Everyone else is back to normal so expect me to be too.

My help is supposed to enable me to be a Mum, which I don't feel I am as I can't manage the Mum stuff properly as everyday basics are too much.

Then it comes to the one out of house thing I do for myself Quilting and I probably won't be able to go, its this week and I can't let my PA come back to work as she has a sickness bug so needs to stay away till all her family are clear of it so that Rob doesn't catch it and end up in hospital, due to his own health problems.

Sitting here typing this is making me very dizzy so I need to stop, but due to overdoing it again, I couldn't settle to do what I needed most and relax and rest, but I do have to try that now so I am ok to collect Emily.

Wednesday, January 07, 2015


And I am not talking TV game shows, but everything seems so pointless.

New Year is always a tough time and I hate feeling so useless, with so many things I want to do and or achieve another year older and still in the same situation and the things I do seem so pointless, or a waste of time, energy and money.

Having my social services review telling me that many of the things I need I can't have any more or am doing wrong does not help.  Why approve the care if they are just going to unapprove it when they feel like it.  My head is all over the place and makes being able to do things even harder, I can't concentrate even to read at the moment which I usually enjoy even if I don't remember much about the book by the end.

I want to be able to do something that is worthwhile or that I can make some money from instead of it all being one expense after another just amuse myself or to find that I can't do what I fancied doing.

Inspired by Beads Direct Snowflake Bracelets, I have recently made these.

I bought the wrong sized Shamballa bead on the blue one, so it doesn't stand out as much as the others.  They look great, but what is the point as I rarely wear bracelets, not much point just in the house and doing the school run.  I would love to make some of the other colours, but again it seems a waste just to sit in the cupboard looking pretty.  Making them to sell is pretty pointless too as they would not make enough to cover costs and its easy enough for people to make their own, it doesn't require any special skill or even much time.  I don't have enough spare of any of the beads to make others either unless I bought bigger packets, but can't really do that unless I knew there was an outlet for them and it was worth my while.

I enjoy other crafts too, like the card stitching, but that is quite time consuming unless its a really simple pattern.  I had planned to make another teddy one for a friend, but its her birthday next week.  Its a nice thing to do, but a lot of work when most of them probably get thrown away after a few days.  

I want to make a frozen themed one for Emily, I don't have the confidence to make my own pattern and the images from Frozen are not simple enough to do that, but I have got a snowflake pattern so am thinking of stitching the snowflakes and them putting a cut out image on the card too.  This used to be easy with my other printer, but for some reason the current one doesn't print on card, should work on photo card though that seems to be the limit,but I don't know how to print the photos to correct size on this printer, makes me feel pretty useless we have had the printer long enough.

For Christmas I mainly got clothes, people don't really know what to buy for me as I don't 'do' anything.  They are nice enough, but will add to those I already have in the hope that I might have a chance to wear them one day.  I bought some in the sales too, again a pointless waste of money to sit in cupboard or just to wear around the house.  I am wearing my fleece lined trousers that my husband bought me, even if they do attract every speck of cat fur!!  they are nice and warm and more comfy than Jeans, don't think I have been outside with them yet though!

Mind you I wonder what happens to the things that I bought for other people.  I know many of the kids toys get put in a cupboard and rarely see the light of day.  Emily has started to play with things she already had as she gets too overwhelmed with the new stuff and its her birthday soon.  She doesn't get that much play time anyway with school and after school events and even the things she really wanted have only been touched a handful of times. It didn't help that as soon as she had opened her presents we had to leave them at home for 4 days before she could play with them.  Again my time and effort buying them seems rather pointless, but there is also so much pressure to buy kids lots of stuff even if they don't play with it, perhaps I should try the less is more principle next time, but we are all so afraid of being thought mean.  One of the things Emily did really want was an Elsa outfit and to her credit she has worn it quite a bit, but the gloves split on Christmas day as did the seem of the dress so I had to repair them, not much point in complaining as she wants it now a replacement or refund would not be suitable, but it rather disappointing as many of these things are when they don't even last out Christmas day.  I did actually feel rather more useful in being able to repair them, but not sure how long it will last.  I need to get my sewing machine out to repair the dress seem better and one of Emily's school skirts, but the effort is too much at the moment and the only place I can use it is on the dining room table, not very practical.

If I get the sewing machine out I will feel the need to get on with some of my quilt or a cushion cover I want to make for Emily with a panel that I got with her initial in Frozen font , but I know I will make a mess of them at the moment and again it seems pointless as they will serve no purpose, its so disheartening.

I am waiting for a courier to come and collect Emily's tablet, she bought herself one just after last Christmas as lots of people she knew had got ipads for Christmas.  It now has a fault with the charging port so needs repair.  Thankfully it is still in warranty, so will be repaired by manufacturer, the hard part will be waiting for it to come back, think I will be kicked off computer!

I have so many unfinished things around, knitting that I can't work out or don't have chance to do, I have very little time for actually doing anything I want to do.  Cards, sewing, cross stitch, but again it also all seems so pointless as what happens to it when it is done?

One of the questions the social services asked me was do you get chance to do the things you want to do for yourself?  Well no not really, but there is not much that can change that, I don't have the time, energy, concentration or independence required for things I want or like to do.

And that's before I even think about doing something worthwhile or rewarding or actually being useful and paying my own way in life.  I was talking to someone the other day who was rather surprised to discover that I have a Master's Degree, yes I do, that's pretty pointless too and I can't function at that level any more.  Its very depressing to be approaching 44 and still not having made use of my education or done anything to be able to support myself.

Well I guess I have a use tonight as Rob is out so I have to take Emily to kick boxing and he is out again so have to take her to a party.  I am without one of my hearing aids at the moment so at least the noise won't bother me as much, but it also means I have no idea what anyone is saying, making me look all the more stupid.  I don't know how long I will have to wait for the hearing aid to be returned or if the fault will be sorted on return, its rather frustrating and doesn't help me feel any better about myself and my abilities.

Ah well this is rather a long feel sorry for myself moan.  I really need to work on seeing the positives and being grateful for what I have and can do.  I must make use of my happy jar that I made with Emily and stop feeling so sorry for myself.

Meanwhile I try to take on board these.

Tuesday, January 06, 2015

New Year, Same Old

As ever Christmas has completely wiped me out, I feel really ill and in pain and don't know what to do with myself, I want to sleep for weeks, but not an option as a) I don't sleep well and b) life goes on regardless.

Christmas was very hectic and I had little help or support, much less rest than I needed and ate many things that disagree with me all in the name of keeping people happy!  I tried most of the time to grin and bear it and be happy and join in, but it wasn't always possible.  I tried my best and tried too hard and always pay the price.  Being away from home is difficult and means I have little left when I return home which is when Emily needs me most as there is no one else around, I feel like I am really unfair to her and I feel like I get my priorities mixed up, pushing my limits for others, who much of the time don't appreciate it and then having to say no to Emily.

New Year is always a bad time, it marks another year of being ill and nothing much changing, another year of wanting to do things and wanting to make plans, but knowing I can't do them.  Hoping this year will be better or different, but knowing its unlikely.  I always have so many things I want to be able to do to feel more productive and more normal and feel like I make a contribution to the world.

Following my assessment by social services yesterday, it is likely that I will lose more of my support from what she was saying rules have been changed so that we can't employ people in the way that I do, so it will be down to whether her manager ok's it or not, if she doesn't there is no way around it and we will have to stop claiming the money and get rid of the help as we can't meet the criteria they set. They have realised what they set up is not doable any more and have changed the rules so that people will not be able to claim and will either have to go back to their care packages or go without.  and to add to that DLA is being scrapped and the criteria for new benefit have changed so can't get things like motability car and blue badge any more, my needs haven't changed at all it the criteria to make everything more difficult. These payments ate suppose to allow people to be as independent as possible and it is all been taken away.

I am going to stop now as I don't want this just to become a huge moan, I need to refocus and think positive, but its hard with little support and when feeling so worn out and ill.  There is not much point feeling sorry for myself and feeling that I am being picked on or treated badly, rules and attitudes can't be changed, I just need a while to get over the festive season and then think out how to carry on.