M.E / C.F.S - what benifits are out there???

D&DD

It must be terribly hard when the illness fluctuates so much.When I filled out my sons dla form(autism+lots of other bits and bobs)I spoke about the 99% of how he is.There are rare (very rare) quiet moments mainly when engrossed on a computer..mainly hitting it..but still :rolleyes: ..If someone were to look at him then because he 'looks' normal no obvious physical characteristics to autism, they could be mistaken he's often like this...Autism was once regarded as 'refrigerator mother syndrome' ,years ago it was never heard of maybe ME and similar illnesses will become more widely recognised as time passes??

jojoward79

that is exactly the problem. One day I can look perfectly normal...the next I cant even wake up. At the moment I think I could manage to work approx 1/2 a day a week (doesnt sound much but Im so pleased!!). However, I can never say WHICH day a week I will be well. Who would employ someone who can only do 1/2 day a week, preferably afternoons, needs to be local as doesnt drive and doesnt know which day per week they are able to come in. Nightmare!
As for DLA, I got the forms...managed to fill them in with help after a few weeks (sometimes Im just not capable of being 'menatally awake'). However, was not awarded it as I didnt need a stick to help to walk. Bear in mind that sometimes I cannot even move my legs for hours.....anyway. That was 2 years ago and I didnt feel well enough to appeal. I am thinking of trying again.

Thanks again to all helpful posts....nice to see that there are some helpful and sympathetic people out there somewhere.
x

hjb123

D&DD wrote:

It must be terribly hard when the illness fluctuates so much.When I filled out my sons dla form(autism+lots of other bits and bobs)I spoke about the 99% of how he is.There are rare (very rare) quiet moments mainly when engrossed on a computer..mainly hitting it..but still :rolleyes: ..If someone were to look at him then because he 'looks' normal no obvious physical characteristics to autism, they could be mistaken he's often like this...Autism was once regarded as 'refrigerator mother syndrome' ,years ago it was never heard of maybe ME and similar illnesses will become more widely recognised as time passes??

It is hard with ME/CFS as it is such a fluctuating illness. Some days are better than others. With regards to work, yeah some days I would probably manage a couple of hours of work or study, but other days I wouldnt. I am unable to say which days these are - it isnt the same days all the time!

It varies so much!

When you have better days it is so easy to do more things as you have been unable to when you have had worser days. The thing is if you do too much on a good day you make yourself worse so its a bit like catch 22.

The DWP doesnt seem to recognise this though! It is getting illnesses like ME/CFS recognised, some doctors and medical professionals still dont really believe in it, luckily my doctor does and luckily my local CAB had an ME support worker in the building when I went for advice this last week so I feel like I might get somewhere now rather than going round in circles.

My advice to anyone with it is to persevere when you can, it may be worth it in the end! If we all keep on things may get altered!

H

D&DD

I don't think even homework would be an option would it as you still get deadlines with those sorts of jobs.I do know what you mean with the good day/bad day thing it caused me to have to resign my beloved(and much needed!!) job in the end as my son has good(?) and bad days,babysitter couldn't cope :eek: and as you say theres no telling when you wake up if it will be good or bad.Have you looked into any dietary/homeopathic things,I only ask as this is the way we are trying to ease our boys symptoms.Not sure of anything to do with your particular illness but it might be worth a look? I also use dedicated forums to my sons disabilities as other people are sometimes a mine of information and it does save wasting money if something doesnt work.I do know though that M.E like autism affects different people in different ways and sadly what works for one will not necessarily work for another like with our kids its trial and error and finding the pieces of your particular puzzle.We are winning our battle and hopefully one day you will win yours too

jojoward79

Luckily I have the most fantastic Dr (although it took a lot of searching). She really goes out of her way to help. My family are superb too. Its just everyone else . Jobcentre/dwp/cab...all been a huge struggle for not a lot of results. Maybe Im getting a bit over excited because I have had been feeling a bit better for a while. All this TV talk of IB change has made me nervous. It took me so long to get it...I dont want to lose it, I need more not less! Altho, I have managed to get my monthly deficit down to 98.00GBP!

I have been looking for homework for approx 2 years now...I have decided that it is a secret society and might not even exist!

As for alternatives...I love them. Problem is the cost. NHS wont pay for them and I just dont have the cash. My birthday gifts for the last god knows how long have always been a therapy to try and help. But, again, M.E takes a different turn. Accupuncture really helps the muscle ache....but It wipes me out and Im in bed for 4 days after a treatment in a 'healing crisis'. Reflexology helps the IBS and massage helps the back probs. Maybe I should make my best friend learn alt healing so she can do it on me for free!! :rotfl:

purplegirluk1

I too have been diagnosed with CFS by my GP but I do not feel as if very much is being done about it at all. She is a believer I am sure but she does not have a great deal of knowledge about the illness. I have been feeling quite well really since Christmas, with a few days here and there feeling ill. I have just been away from home for a night and I am back to feeling terrible again! I will be back at the GP's tomorrow now instead of working.

I am doing graded return to work and am currently doing two days a week. I have got used to this now but I have been doing it two days since september and am still feeling exhausted after work and sleeping for hours when I get home. I came home in floods of tears on thursday because of nasty or insensitive comments from colleges about the amount of work I do, how often I am away, the fact that they are working harder because i'm not there etc. I am now guessing that I will be taking a day sick tomorrow as I won't be well enough to work. I don't want to leave my job as I love what I do. I am being paid full sick pay and the poeple I work for have been very good about things, it is just the stupidity if others that upsets me.

I have never claimed benefits for my CFS, I have no idea how too or what I might be given? At the moment I do not think I will be back at work full time in the near furture. CFS is one of those illnesses that you cannot work around, one day I am fine the next I can't leave the house.

hjb123

I am doing graded return to work and am currently doing two days a week. I have got used to this now but I have been doing it two days since september and am still feeling exhausted after work and sleeping for hours when I get home. I came home in floods of tears on thursday because of nasty or insensitive comments from colleges about the amount of work I do, how often I am away, the fact that they are working harder because i'm not there etc. I am now guessing that I will be taking a day sick tomorrow as I won't be well enough to work. I don't want to leave my job as I love what I do. I am being paid full sick pay and the poeple I work for have been very good about things, it is just the stupidity if others that upsets me.

Glad to hear that your employer is sympathetic and is allowing you to do graded back to work. I tried to do this, tried a few mornings or a few afternoons but just couldnt manage it. It didnt help that the manager was not very understanding and wasnt a 'believer'! She told me one day I was better off being at home because when I was at work my work wasnt good anyway! Charming!

CFS is one of those illnesses that you cannot work around, one day I am fine the next I can't leave the house

Thats just it, some people just dont get that. They see you up and about and think that you are fine and and putting it on! They just dont realise how varying it can be.

Hope you feel well soon!

H

Ted_Hutchinson

There is a free ME/CFS benefit related forum at Benefitsandwork. However for people who are able to do a little work I suspect it would be more stress than it was worth to claim DLA.

I think there are ways that someone with ME/CFS might improve their health and energy levels. Zipvit sell A114 Acetyl-L-Carnitine 500mg which at 2g daily has been shown to improve some people Amantadine and L-carnitine treatment of Chronic Fatigue Syndrome.[size=+1]
[/size][size=+1] But note the fact that the [/size] greatest improvement took place between 4 and 8 weeks of L-carnitine treatment.

CFS is generally thought to be an auto-immune response and your immune system is controlled by your Vitamin D3 endocrine system. It follows that this will operate best in summer when your levels will be higher due to the fact that your skin makes Vitamin D3 in direct exposure to sunlight.
Getting to a Suntan parlour 2 or 3 times a week would give your vitamin d3 Levels a quick boost otherwise you could consider taking 125tablets of vitamin d3 cholecalciferol Healthy Direct via Quidco
using code ep781 will get you the cheapest vitamin d3 however to keep your levels high you will need to keep taking 10 tablets daily, or 70 (28000iu) weekly or another 125 every fortnight until you can get your vitd3 for free from sunlight see calculator here

As CFS has been seen on MRI scans to affect the working of the brain it will also be helpful to increase your consumption of OMEGA 3's Zipvit[size=-1]A216j, OJ Omega Juice[/size] provideds 900EPA 600DHA per 5ml so 2tsps of this will in a couple of months start to show results.

In order for the DHA to enter the brain cells where it is required VITAMIN D3 has to be present in order to facilitate an ion exchange to permit the DHA to pass through the astrocyte cell wall. It follows that simply supplementing with one or other will not have the same effect as ensuring you have the maximum levels of vitamin d 3 at the same time as you are taking omega 3. It is the failure of many researchers testing the results of either, to recognise the need for both at the same time with causes the conflicting results.

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urban_spirit

I too have M.E., and it's good to know i'm not alone.

I work for civil service, and my manager thinks it's 'bad behavoiur' rather than an illness despite the fact that I had a clean record prior to my illness (in management grade), and starting a year-long hospital treatment programme last september after diagnosis by consultant. (please excuse spelling etc, am shattered tying this). Manager cannot put any more pressure on and is cleqar that will sack me under 'inefficiency' cos off work due to m.e. currently.

At worst i'm bedbound but don't stop fighting it. I WILL win. Doc wouldnt come and see me to sick note for work as 'doesnt do house visits for m.e.' (despite me not able to sit up even) and advised me it was a 'very contravertial diagnosis'.

I too put in for dla when i first became ill over 3yrs ago but wasnt successful. Not reapplied yet or appealed as my head is pea-soup and stamina is pants, and the moments of clarity i have to fight whats most important.


People say to me 'you look well today' - and you feel SO ill. Some days I fell like i'm fightinmg the world.

My thoughts go out to all who have experienced m.e. one way or another, it's a (mostly) hidden and disbelieved illness.

I filled in IB50 questionnaire -received letter ystrday saying i've met threshold of incapacity(thank god). Letter today saying passing IB50 has triggered a meeting with adviser at local JC+ office-??

urban_spirit

Ted_Hutchinson wrote:

As CFS has been seen on MRI scans to affect the working of the brain

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Hi Ted

Can you tell me where you researched this please? I'd be very interested to find out more, and read as much as I can as I find that understanding it (m.e.) helps me to work with it and gives me back some control.

Thanks