CFS /ME and on my own.

If you've never tried going without wheat and dairy, that is something to try. Give yourself a couple of months and see if you notice a change in how you feel. The difficulty is linking any change in behavior or diet to the illness, since the illness goes up and down by itself. I gave up wheat for a while and didn't notice a difference. I'm now  a vegan and don't notice a difference, but just think that's a healthier way to eat.

Hi, it's good to hear your story. Didn't know fillings could be a problem, although luckily I don't have any. I have never really stuck to diets. I saw a rheumatologist years ago who told me that having an illness was bad enough without sticking to faddy diets. But on a recent CFS group session a number of people swore by diet. One called his the caveman diet, but it's not for me. I find it hard to not to just push on with everything that needs doing because if I don't do it no-one will and because if I spend my days doing nothing then there is little point in life. I am worried I might have to return to work because obviously I need the money but I know they will not allow flexibility or working from home so it won't last if I do go back.

I think even doctors think if you cope you can't be that bad.

What happens to us if we stop coping?

For 4 yrs I adopted the same attitude if I don't do it none will and struggled on. The result was I constantly boom and bust. Some 15mths ago I had enough and my GP kept telling me to pace so I seriously started pacing, doing everything in small doses and resting. Very slow I started to increase what I was doing and after 15mths I am doing so much more than I ever did. 

The other changes for me are Vit D supplements recommended by GP who found I was deficient because I wasn't getting out and my sad light in the winter

Dear Langdale,

yes it it is very difficult. I have posted my testimony in different discussions in this Group. When assessing my diet I assumed that all food and drink were suspect until proved benign. I started the investigation with boiled brown rice, pears and filtered water. I added one item of food or drink at a time. If I had an adverse reaction that food was out. If OK it was allowed into the menu. It is a long painstaking process but worth it. 

You you also need to be constantly aware of any impact from exertion and from the environment .

I hope all goes well for you, George 

The trouble is that doing daily tasks like going to the toilet and eating is booming and busting for some of us? Especially those with no help.

GeorgiaS, you're so right, i have to consider myself one of the lucky ones as I have up and down days and I do now have some support where I previously didn't (tho I don't feel very lucky when I compare myself to an ordinarily healthy person) but I certainly know where you're coming from.  

On the worst days (which can last weeks at a time) just getting out of bed and walking as far as the sofa is exhausting, that's if you can get out of bed at all of course.  Because our main symptom is fatigue, we are generally considered lazy or weak willed and if we just pulled ourselves together we might get better.  

On my better days I think perhaps I could push myself every day but its only when you have really bad days again you're reminded of just how impossible it can be.  You can tell someone it's like waking up with a really bad virus everday and they sympathise but as soon as they've gone about their day its all to easy to forget, not that I blame them I guess, I can only assume i'd have then same attitude if i'd never suffered it. 

If I talk to my doctor about having better days, she immediately starts talking about the possibility of me getting back to work again or at least volunteering like she thinks I just need to get back into the swing of things, she just doesnt understand how much I still have to push myself and thats on a better day. How can you possibly rehabilitate when you don't even really know what is wrong. 

I have maybe 5 or 6 weeks a year (used to be only as many as 2) where I feel completely normal again and even exercising is at least ok, but there seems to be no rhyme or reason for it and it never lasts.  I know there are people on here who will consider any good weeks a year lucky, but it's still soul destroying to just have it taken away again.

I think it's high time that at least people with no support were given some help, i am constantly told by doctors that I should feel pleased every time a different test comes back negative and at least I "don't have a serious illness".  I'd like to see them suffer from something like this and then not call it serious, the impact on your life alone is all too serious and thats even for someone like me that gets ok days too, so if you don't get any good days why shouldn't you get some help. 

If only we weren't so knackered all the time we could put some effort in for fighting to be taken more seriously!

Dear Kirsty,

that problem with your doctor's miss perception. I would suggest use your lowest point as your datum point. That keeps the listener's imagination set on  your ME at its worst and your small improvement near your worst.

so instead of better days, say some days are not quite so bad as others. I managed to get from the kitchen to the loo with only one 5 minute rest last Thursday.

and such like formula and linking it into one single event.

thanks George, I think you are so right and i'd never really thought of doing it like that.  Once I told her it's like trying to do things after you have taken sleeping tables and her response was "i don't know what thats like i've never had to take sleeping tablets" and whilst thats good for her and she is a lovely lady, its just no use talking to someone who has no idea, unfortunately i am not currently aware of any gp's in my area that have been through it, but i'm going to try and seek one out

 

O gosh Kirsty, I had a short explosive burst of laughter at the sheer ineptitude of her comment. I then felt ike weeping; what is the use I thought sadly. Just what is the use?  

ha yes, i'm sure we've all been there with the useless comments from doctors, i certainly wouldn't win a medal for worst ever comment, but sometimes all you can do is weep.  although please don't feel sorry for me, i do still have my sense of humour at the end of the day I think thats all that gets some/any of us through and i can only laugh thinking back.  

I am always reminded how it feels for my doctor too not being able to help me and i totally agree with her it must feel dreadful to watch a patient in distress knowing you don't have the answers to help and feel there is nothing you can do (afterall until science have the answers how can the gp's) but at least my gp cares enough to think that, some of the stories i hear are just atrocious.  

I really did feel for a long while that they were missing something (not that it would necessarily be something serious but just needed finding and sorting so i can get on with life) as a close relative was undiagnosed with sarcoidosis for at least 15 years before it was discovered (i found your account so that really rang bells with my family).  I was convinced that the same thing was happening to me, not the same illness but just that something was being missed.  

I have finally been told that (after seeing a rheumatologist - which I am now awaiting an appointment) I will just have to accept that there is nothing they are able to find and i will just have to treat the symptoms (which is all i have been doing anyway).  I'm not the first and certainly won't be the last, but there are so many illnesses out there that can cause fatigue that aren't screened for and i'm sure plenty still i haven't been tested for and I kind of see their point, but surely heavier screening to start with would save money in the long run, rather than constant visits too-ing and fro-ing over the years and paying out sickness benefits to those who can't work.  Looking back over the years it just seems absolutely ludicrous

Ludicrous and so distressingly miserable. It turns the laughter to tears.

Whilst George's elimination diet is the best route, if you're going to find that too heavy going to start off with fasting or juicing (mostly veggies) can be helpful.  In fact i'm starting it again myself today so that I can eventually get back to a place where i can go through elimination) im going to try two days juicing/two days eating - but i'm no expert so others may give you different ideas that may work better for you.  

I usually find i feel better if i don't eat anything at all until late morning/early afternoon (although longterm i imagine it's not good on the stomach).   If you find it hard to cut the carbs try just avoiding them or only having tiny amounts before 4pm and stick with juicing/fasting or protein and good fats in the day (easier said than done sometimes).  Oddly I can seem to eat anything i like after about 4/5pm.  I know carbs can make anyone feel tired in the day but for me/cfs'ers it can be the difference between us being awake or alseep and awake is always a bonus      

I'm not sure how and when mine started either, I always assumed it was when I was in my late teens and would go through sporadic periods of just being sleepy for weeks at a time and then i would be okay for a while, when i reached my late twenties that was when it became a permanent fixture and hasnt really left since although I consider myself to be lucky in that I do get short remission periods occasionally.  But looking back now, i was never like my friends at school, i never really kept up with everyone else and extra hobbies etc like they did.  My mum always says i was never the same after a virus when i was about 10.

I'd heard about fasting being a good idea, I had never heard about the possibility of it re-setting the immune system though, so you've already helped someone else today aswell, thank you for that I may well give it a try

 

You may also find it helpful to keep a simple journal. It will assist in working out cause and effect.