Hi All,

I have had a very weird health thing (associated with a virus which precipitated muscle damage) going on since the end of 2006 and it's affected mobility. I keep getting better then falling backwards after overexertion, sometimes very painfully and dramatically, and now it's getting harder and harder to pick up again. Have had no abnormal test results and my consultant just reckons the damage I did a while back was quite severe (but is a bit baffled and wonders if it's post viral).

I'm having an improvement period and just about holding down cooking while perching, and walking about 60 metres a few times a day, coping with my house's layout if I don't walk up and down stairs too much and driving a little (i.e. up the road to a neighbour's for coffee). Can't clean/have too much activity in the day so family helps out with this kind of thing. It' really odd - when I walk, I walk normally. I can't go very far without needing to use a wheelchair as walking too far leads to pain, and if I'm really unlucky, I get to a point where anything I do makes it worse till I'm in bed and have to start from scratch in terms of rehab.

I need your help. I've improved to the level I'm currently at about 6 or 7 times already then somehow managed to get it wrong again and had to start over, which can take months. I'm grading what I do very carefully but overexert if I plan ahead incorrectly or get caught in an unknown environment where physical demands are too high (i.e. hotels that didn't advertise the fact that they don't have lifts, my sister's very new very big house with no downstairs bathroom). Symptoms are delayed so sometimes I feel invincible and carry on, then I feel pathetic in the same day. Trying hard to discipline myself and asking others to help me in this. The trouble is, my idea of not very much is my legs' idea of too much.

Does anyone out there with ME or another fatigue based condition such as MS have any energy conserving advice to give me? I've not been told I have ME, but am postviral, and I am trying to learn to conserve energy i.e. using a trolley in the kitchen to avoid carrying heavy things, making 10 minute meals instead of my normal 30 minute ones and freezing leftovers for bad days, limiting or changing the time I drink to avoid walking up and down stairs to the bathroom, ordering shopping on line, throwing house keys out of windows to trusted visitors when I'm too unwell to answer the door, buying presents for celebrations when I'm well ahead of time. I am young, quite newly married and trying to get back to an independent life somehow.

Keeping bright and occupied but about as frustrated as I am motivated! Any answer appreciated, even if it seems obvious.

I've had M.E. for over five years now and still get it wrong! It does get easier though as you learn from experience what is going to make you exhausted. It's just so easy to overdo it, if you're anything like me - if I feel able to do something I make the most of it and know i'll suffer the consequences later.

I find that I manage best if I plan ahead, so if I want to go out for lunch with friends say on a Wednesday I start preparing for it on Saturday, firstly by deciding what i'll wear - so i've time to iron the outfit (if necessary) and recover, and then making sure I have extra sleep and rest the day before and then planning in time to rest for a few days afterwards. This way I can have lunch and appear totally 'normal' and enjoy the time with friends.

You sound to be doing pretty much all the right things.

Thanks Bonny. On reflection, planning for an upcoming holiday this way will be v helpful - I need to write a list of things to do and start planning them in.

Hi Rach

My daughter and I both have ME, and I have found that I can do things around the house in 5 minutes spells, and then rest for 10 or 15. This way I can get a lot done, but I do have to be strict with myself about keeping it to 5 minutes, or I overdo it.

Have you had a look at the Sheffield ME group site? I have found them very helpful, and they give great advice. Also have you been referred to the ME clinic at Fairlawns? If not ask you doctor to refer you as they can help a great deal too.

No I haven't. Is it possible to have ME in just one area of your body (i.e. it's only my legs that get tired)? I had fairly dramatic test results indicating muscle damage in 2006 but they're normal now. Not sure if I fit the profile really. I asked the ME service for advice but they'll only talk to my GP, not me. My consultant has said he'll admit me for tests if I relapse again as he thinks the chronic fatigue service might still think there's another underlying problem, and that's why they won't see me. He thinks if he rules it out I might be able to get some advice - but I figured I'd jump the gun and just go direct to the experts!

I've been thinking about Fairlawns but not sure I'm ready for another round of medical interventions yet! Only just got my head around the last lot. I'm keeping an open mind though and have a few friends who have or have had ME, so I've been asking them if it would be worth it or not.

If I rest I do get a second wind.

M.E. is diagnosed by excluding everything else that could be wrong. I was advised to ask my doctor for a referral to the department of infectious diseases at the Royal Hallamshire hospital who deal with M.E.

As you probably know by now it is very difficult to get an official diagnosis of M.E. but what you describe sounds like classic M.E. to me. and yes it is a very perculiar illness, different in every case, and difficult to manage in the early stages until you get to know your own body and your own limitations.

Current research suggests that it is actually a post viral illness of the brain which sends 'wrong messages' to the body, thus it can affect different areas in different ways.
There are a couple of other threads on here which have some information you may find useful. Look up the 'Note to moderaters M.E.' thread and the 'Tiredness' thread.

Hope it helps.

Hi, just looked it up.

Thread you want is titled;

'Help / Advice on combatting tiredness'

I was diagnosed at the same place Anna! Prof Read looked at my case, and diagnosed me with M.E. with reactivating glandular fever. Had it for 6 years now.

Symptoms vary from person to person. I find I tend to panic when start getting fatigued - and have to lie down or sleep. Short rests don't seem to do anything, once I've had enough, that is it for the day!

Some days are better than others, and her is where the key lies for me - DON'T OVERDO IT! It can be so tempting when you feel better to do more than you usually would, but you usually end up paying for it ten fold. I have been given info on pacing and a structured exercies programme which helps. It seems that you Rach are certainly on the right path with this.

I find it hard to make set plans, as I never know how I am going to feel at that time - and of course the anxiety builds which can make things worse. So I leave things very flexible where possible.

Hi Rach M,
I too have M.E, and the way I deal with it is 'pacing'. Basically listening to what my body tells me to do, and doing it! I learned a long time ago not to force myself to do anything Im not up to, or I crash and burn. I did a load of research on the internet, as my G.P is rubbish and I had to give him information on M.E!! A lot of people struggle with the concept of the illness, if they could just experience it for one day, then theyd know!
Sounds to me that youre doing all the right things already. Try not to get too upset or frustrated because this can make you feel worse, and remember, some people do make a full recovery from M.E, so dont lose hope. :thumbsup: x

Thanks all. Any other advice appreciated, especially any shortcuts in life you've found that means you can do more with little energy. My problem is my body doesn't tell me at the time that I'm overdoing it, so I have to restrict myself to what I know is safe, then hope it's like when you put money in the bank... if you invest your energy right, you might earn interest and have more in the long run. Anyone else have this experience? In the past I've pushed it and managed to teeter on the edge of crashing for weeks on end, but I've stopped this because I'm not savvy enough to know when this is beneficial or about to trigger a full blown relapse. Since a relapse makes further recovery harder, I figure it's best to increase activity slowly and take less risks.

About to look up those threads Anna mentioned.

"My problem is my body doesn't tell me at the time that I'm overdoing it, so I have to restrict myself to what I know is safe"

That is what it is all about! Then try a fraction more and stop. Lots of people with ME go through the 'boom and bust' cycle, and by careful planning and structuring you can start to improve.

That is what it is all about! Then try a fraction more and stop. Lots of people with ME go through the 'boom and bust' cycle, and by careful planning and structuring you can start to improve.[/QUOTE]

I know. It's so minute and restrictive. No spontaneity anymore. How on earth do I measure how long I stand for across a whole day? I started wearing a pedometre to work out steps but it gives false readings i.e. if in wheelchair and I go over bumps. Diaries help.

Ive noticed recently that the depession side of my M.E is getting worse, I think I might have to go back to the doctors to review my medication. Thats the main problem with M.e I think, theres so many sides to it, it takes some managing!

I found my depression was triggered by overdoing it. Any medication given to me caused severe reactions including suicidal tendencies. I was lucky and because I was at University at the time of one of my flareups had access to a Counsellor. He really helped me get things in perspective. It's very hard I know. Relatives were urging me to rest then complaining because nothing was done or that I didn't go out or talk to them so I couldn't win. It takes a lot of confidence to say ' have a disability and the trouble is that it varies from day to day, I can seem normal one day and be flat out the next unable to do anything the next. This is how I am at the moment and I can't do anything about it because it is a physical condition not a mental one, the harder I push to live a normal life the sicker I will become. Bear with me if I take each day at a time and don't push too hard all in one go I may recover or at worst discover my own rhythm.' I found to be honest it was relatives and the medical profession that caused my depression trying to impose their view of my illness on me.

Thanks Duckweed,

I have a very supportive family and friends who have been very understanding, but I think I'm unusual in that I did have a very serious medical problem plus the virus, had to go into hospital and so I have credibility now. I know a lot of people who have had chronic fatigue (I'm not saying I do, but wonder about it and see the similarities) start with it out of nowhere and so it's hard for people to grasp why things change.

What I struggle with is people's reaction to the wheelchair. I either get patronised, treated like I have leprosy in Meadowhall, or made to feel a fraud if I get up to reach something or even try to walk for a while to rehab. If I'm in it, it becomes the focus of attention for conversation and is a constant reminder that things aren't right. There seems to be a tendency to see people as fully able or fully disabled, and if you're somewhere in between then you're on tricky ground because it's not the norm and it makes people uncomfortable or suspicious.

I think I must look very strange to people and get lots of rude questions, but I do think it's a phase and I will get over it because I'm stabilising and hopefully that'll lead to further improvements. I wish I had a way of passing that sense of ..... peace (?).... onto other people so we all can move on, but instead I end up being led into chats about how hard it must be... or how I've been that day... or how far I've been walking... or what's it's been like to stop my career. I'd much rather talk about what I'm cooking for dinner, or the voluntary work I do, or talk about how I'm doing naturally in conversation without a heavily loaded question coming right after talking about the weather. I find I'm not anxious, depressed, and I'm taking it in my stride, but other people's reactions to me frustrate that and I end up focusing on their perspective of it rather than passing on my perspective. I'm trying hard to learn how to shift the conversation and welcome people into talking about how things are without presuming the worst. At best I manage to wax over questions and change the topic but haven't worked out how to get people to ask me about happy or positive things. Any tricks, tips or similar experiences?

I think you shouldnt drive while you have this problem, it could be dangerous.

What is your diet like, have you changed it all, does it affect your condition?
Maybe you could alter your diet to improve your condition.

I definitely know where you are coming from. I feel fine till the social worker or doctor starts listing my problems. I once got yelled at collecting my benefit at a post office by the post office clerk. Also been called a liar by a traffic warden and other children tell my children I can't be disabled as they've seen me walking. A doctor wrote that I had problems socialising and was using my illness to avoid people in spite of the fact that I was on 2 committees at the time and even occasionally ran a market stall. My husband is a lovely person but he still insists I should get out more even though I tell him I'm fine. I missed doing something in my church for years because people had decided without asking me that it would be too much for me. Generally I don't talk about my condition these days unless I have to eg. access at an airport. I suppose when they ask you just say "I'm coping thank you" and how are you? Or ignore the question totally and talk about a new recipe an interesting book you just read. I started studying at OU so I could have something interesting to talk about. One thing I have never managed to work out is if I use my scoota people talk to be normally but if I am in the push wheelchair with my husband I suddenly become They.

Hi Chem1st. Don't worry I'm not a rogue road user who doesn't take their responsibility seriously! I have been through the correct and official process to be able to continue driving.

I haven't changed my diet since this all started so I'm not sure how it might affect me. Lots of fresh fruit and veg, rarely use processed foods with the exception of things like bacon and the occasional pizza (especially when I'm at my worst). Don't use jars or packaged stuff. Eat oats for brekkie and the occasional sweet thing but don't generally have desserts. Mostly drink decaf but have one caff drink a day. Like to eat out as it's one of the few things I can still do. Don't know much about what diet adaptions I could make in terms of how to maximise /recover but I have heard people try different diets and they sometimes work.

oooh.. What are you doing at OU Duckweed? I have thought it may be a good thing to look into. If I do manage to get back to work I'd love to show I've used this time to continue developing. That's why I'm doing voluntary work. It's allowing me to do things I couldn't do in my previous career that was very time/target oriented, but also I figured it shows I was always committed to doing my bit and getting back to work.

People's assumptions can be very hurtful, especially when they impact you in terms of what you're allowed to do. I have become very assertive and clear with people about what I can and will offer, and even confrontational when I know someone is getting it wrong and assuming the worst when I am capable. I've decided that the condition itself can be upsetting and anger provoking at times, so I need to make sure that's not creeping into other areas of life and tipping the balance of my mood i.e. hobbies/friendships/working relationships. I'm keeping short accounts with people and not letting things fester and I hope others are doing the same with me as I know I can't be the easiest person to be around at times.

I used tto work in the area of rehab, quite ironically, and although what I tackled was very different to this condition, the people I worked with had problems that other people wouldn't have ever come across or know how to respond to. I used to make them a wallet sized card that explained their disability and told people what to do about it. This was really necessary for them as they couldn't explain it themselves and were very vulnerable, but it also added credibility. I was wondering about making one for myself. Even though I can explain it myself, it's a very long winded process and leads to lots of unwelcome questions. At least this way I can say I don't talk openly in public places, hand over a card and maybe people will stop there. Feels a bit silly, but maybe that's better than feeling offended and awkward all the time.

It makes me so angry that someone would shout at you in a post office, and I really hope you took them on, the thing is... I know I would have been so taken aback I probably wouldn't have been able to respond. I might have complained later though if I could face thinking it all through. Sometimes it's easier to just move on if it causes less stress.

I'm not doing OU at the moment. I'm writing a book for my own pleasure based on my husbands family history. But OUs got loads or courses short and long. The great thing is you don't have to travel and you can make your own timetable. If you go to an ordinary college you have to see tutors on certain days and there is the travelling. I tried that before when I was trying to upgrade my maths and although most of the learning was at home I still had to go up to the college from time to time. If you go onto the OU site they will send you a brochure. If you are upgrading your qualifications you might find the job centre could arrange funding. As long as your GP is happy it won't make your health worse.

There are still alot of people that dont understand M.E, and what it consists of. Its a horrible illness that completely rules your life. It is manageable, and people do fully recover from it. I had to download and print some information about it to give my G.P!
Some days Im so wiped out I cant move, everything hurts. Some days are good days as I call them. Lately Im having a run of wipe out days, and whatever I do, or dont do, doesnt make any difference to the illness.
Good job I have a great husband and a sense of humour!
Hope everyones as well as they can be :)