Hi

I suffer from ME and although most of the time, I'm generally able to deal with it, over the past few days I've been feeling myself getting more and more exhausted early morning (particularly between 9.30 and 11am) and after lunch (between 1pm and 3.30).

I've tried sleeping more, protein bars, and gentle exercise to wake me up, but as I work full time, its beginning to really get to me. I feel as if I can't do my job properly because I'm falling asleep at my desk, and its beginning to affect me mentally, as I feel so useless all of the time.

Does anyone on the forum also have ME and have any tips, or does anyone just generally have some tips on beating tiredness because I know there's nothing i can do to make it completely go away, but I just can't really take much more.

Hi Kiz, I really feel for you. I know my problem is trivial but for pretty much the whole month of June I am exhausted as i'm packed full of antihistamines of all varieties, and even though they say non-drowsy I wouldn't like to chance operating heavy machinery or anything!

I am also intolerant to caffeine, so I can't even use coffee to keep me going! I find that fruit perks me up, whereas bread and other carbohydrates make me more tired. Fresh air of course, regular screen breaks if you work at a computer.

I'm sure i'm telling you things you already know but I find when i'm feeling rubbish I have to take much better care of myself than usual or I risk getting the classic symptoms of being run down such as coldsores, spots, constant bad hair days! etc etc.

Hope you manage to find a few things that work for you. x

Thanks. At the moment my skins an absolute mess. i've got long nails and often catch myself in my sleep, and the cuts aren't healing properly at all, they're getting really red and sore and infected, and I know its cos I'm so run down.

I've been to my doctor and they say yoga and exercise is good for me but after work all I can do is collapse in a corner! I do as much exercise as I can manage but nothing seems to work anymore.

If you've got ME then exercise can be BAD for you rather than good for you! You have to be very careful you don't overdo it and as you're feeling the effects of the ME at the moment you'd probably be better off resting your mind and body as much as possible.

The usual things such as plenty of healthy fresh food, reduction or stopping drinking alchohol may also help (though personally i've never quite been able to give up the alchohol)! :)

Energy can be used as physical energy, emotional energy and mental energy, so don't think it's just the physical which you can overdo, too much mental stimulation or emotional episodes can be draining too. Pace yourself.

Rest completely when you can, ie. peace and quiet on a bed, but try to keep your sleep patterns to regular night time hours if possible.

Eat and drink as healthily as possible, (the less additives the better.)

Find a doctor who understands ME. Fairlawns on Middlewood Road has an ME service, also the Sheffield ME group can put you in touch with professionals who understand the problems.

I take supplements; Omega 3 fish oil, Co-enzyme Q10, zinc, magnesium, multivitamin and pro-biotic yoghurt drink (all available at Morrisons) but that just seems to suit me.

Useful books which offer advice that might help are 'Living with ME' by Dr Charles Shepherd, and 'ME Chronic Fatigue Syndrome, a practical guide.' by Dr Anne MacIntyre.

Hope some of this helps. It's a rotten illness but it can get better in time.

Thanks.

I always try and eat healthily, i make my own bread instead of buying shop bought etc, and I've heard about taking omega3 and magnesium, but not zinc and co-enzyme Q10 (I always thought that was something Oil of Olay made up lol :hihi:) so I'll give those a shot.

I've been looking into some ME groups around the city that do yoga etc but they always seem to be during the day and I work full time (I can't afford not to) so I can never make it.

I'll try the books too, I've always just been led to believe by my doctors I've just got to shut up and put up with it cos there's nothing I can do. To be honest, I think sometimes my doctors think i'm complaining about nothing, which feels great when I'm sat in their office with my head nearly on their desk, wondering how comfy it would be to sleep there...

Ill informed doctors all too common I'm afraid.

I've been very lucky cos mine is great and has worked her socks off to get a diagnosis.
But a lot of it is still down to self help and finding what works for you.

ME is now recognised by the World Health Organisation, which means it has to be properly funded by the Government (they are not pleased...) Some research suggests a strong evidential link between ME and Polio.

I developed mine after a rather nasty bout of glandular fever.

It took me 3 years to get it diagnosed, my mum just kept being told "she's just being a teenager" and it ruined my GCSE's because I didn't know what was wrong with me apart from the fact I was ill and couldn't get out of bed in the morning. My school thought I was just lazy and wouldn't help, and after I was diagnosed I found out I could have requested more time on my coursework.

Its just depressing because when its bad and i'm really run down, my skin doesn't heal properly, I become susceptable to colds etc, so I feel even more ill than I would do anyway, and its hard to explain to friends and family who with the best will in the world keep offering advice, but it doesn't really help and I can't explain why!!

Kaizabella I really feel for you :(

It's so hard to explain to people how you feel and how the ME affects you without sounding over dramatic (I know I always feel like that) and it tends to be worse if you're young because everyone says stuff like "oh you're young you should have lots of energy .... " like that's supposed to make you feel better??

I tend to grade myself with a percentage score, so I can say to OH today i'm feeling 50% - so that's probably pretty good. Or when I want him to understand i'm not good, I let him know i'm only 15-20%

I've found it hardest to get people to understand the cognitive impact of ME. I had a long time where I couldn't string a sentence together because I couldn't think of the next word so I avoided face to face conversations and phone conversations and do most of my communicating on-line as it gives me time to think or use a different word. I think we all learn to adapt so that we can make the most of what we've got.

Have you thought about re-sitting some GCSE's? Older and wiser can make a huge difference!

I've found support groups wonderfully helpful.

It's such a relief to be able to talk with people who know what you're talking about without having to try and explain it from square one all the time. And they are also a mine of useful tips and information.

As Bonny says it's very hard to explain it to people who haven't experienced it, and I get tired of feeling I have to keep on justifying myself to prove I'm not being lazy, then when you do explain that you're actually ill you feel like you're a miserable moaning cow.

There's no quick fix. What I would say is don't waste energy on what doesn't matter. Don't eat highly processed food. Eat lots of fresh fruit, keep dairy foods low. Plan everything so you don't waste energy walking back and forth even in the house. Eat small meals, ie little and often so you keep an even blood sugar. Try and keep the room at even temperature so your bodies not having to cool you or heat you. Bananas are good because they have zinc and potassium, both minerals ME sufferers seem to be short of. On my better days I make large meals and then freeze them as many smaller meals so I have suitable food when I'm having a bad day. It's a system of trial and error really to see what works for you

Thank you all so much, I'm going to be doing a lot more research this week I think and possibly join the Sheffield ME group this week too.

In the meantime, I'm off to go yawn my way through the rest of my day at work.

Energy can be used as physical energy, emotional energy and mental energy, so don't think it's just the physical which you can overdo, too much mental stimulation or emotional episodes can be draining too. Pace yourself.

Rest completely when you can, ie. peace and quiet on a bed, but try to keep your sleep patterns to regular night time hours if possible.

Eat and drink as healthily as possible, (the less additives the better.)



Find a doctor who understands ME. Fairlawns on Middlewood Road has an ME service, also the Sheffield ME group can put you in touch with professionals who understand the problems.

I take supplements; Omega 3 fish oil, Co-enzyme Q10, zinc, magnesium, multivitamin and pro-biotic yoghurt drink (all available at Morrisons) but that just seems to suit me.

Useful books which offer advice that might help are 'Living with ME' by Dr Charles Shepherd, and 'ME Chronic Fatigue Syndrome, a practical guide.' by Dr Anne MacIntyre.

Hope some of this helps. It's a rotten illness but it can get better in time.

I have M.E to, and agree with everything Anna K has said.
Its a rollercoaster having M.E. thank goodness my husband understands it and is a great support. Try to keep smiling too, if I lose my sense of humour, Ill start worrying! :hihi:

Does anyone haev any advice on how to explain it to my partner too??

He's always sort of been slightly dubious about the whole thing, and is convinced if I'm tired I shouldn't sleep through the day, and I think it frustrates him when I get down when I'm tired and things get on top of me. I just really want him to understand, or at least go a little way towards understanding.

Does anyone haev any advice on how to explain it to my partner too??

He's always sort of been slightly dubious about the whole thing, and is convinced if I'm tired I shouldn't sleep through the day, and I think it frustrates him when I get down when I'm tired and things get on top of me. I just really want him to understand, or at least go a little way towards understanding.


If you contact the Sheffield M.E group, they will send you a load of literature for him to read. Also, ask him to read any M.E books you may buy. Or if its easier, pop M.E into Google and print as much info out as you need.
Its very important that your partner understands how youre feeling, and how much rest you really do need. If you dont rest when your body tells you to, you might relapse and end up really ill like I have a few times.
Hope that helps, stay well x

I agree with lisalee that education is the way forward, but if other half is anything like mine they like things kept simple but scientific.

From what I've read ME is a neurological illness of the brain rather than an illness of the body. (and I don't mean 'it's all in the mind')

Briefly (and very, very simply:)

After a viral infection, part of the virus can remain inside the brain cells and interfere with the cells' particular functions, eg. the secretion of a particular hormone. (this may be true of a lot of illnesses, eg. Parkinsons disease, MS, schizophrenia...)

This malfunction deregulates the signals to the metachondria (energy making cells) blocking them from releasing energy into the system. Or fails to regulate a continuous flow. Even (very occasionally) flooding the system (when you get a 'high' day during which you springclean the house, dig over the garden, Knit a sweater and shampoo the cat.)

The energy deficit is made up with adrenelin (the 'fight or flight' hormone which the body calls on in an emergency.) This is why the body can keep going when it has to, eg. going to work.

Once the 'emergency' is over and the pressure is off, the adrenilin level falls and the body collapses with tiredness.

Adrenelin is finite and not continually produced so will eventually run out, thus you get the delayed reaction eg. after one day of activity you need two days rest while the adrenelin replenishes itself.

I have to add before someone with far greater medical knowledge than I leaps on me from a very great height, that this is all theoretical as yet and is still being researched as we speak, along with other lines of enquiry.
I have done my best to explain it as best I can with a limited medical knowledge and a very foggy brain, but all I can say is when it was explained to me like this it all started to make sense and fall into place.
It is also explained in much greater detail in the books I've mentioned before.

Hope this helps somebody.

On a practical level, keep cheerful and positive if you can. Tell him when you feel well.

Prioritise, only do what's absolutely necessary. Men might notice untidiness, but they won't notice you haven't cleaned the oven.

If he wants a clean oven hand him the cloths , better still, get another man.

Get help in the house if you can afford it, even a couple of hours a week can make a load of difference. There are all sorts of agencies who'll do your ironing, cleaning etc.

If he wants you to run upstairs and make love, remind him you can only do one or the other, not both.

Tagging this thread with keywords Myalgicencephalitis or Myalgic Encephalitis as mentioned here (http://www.sheffieldforum.co.uk/showthread.php?p=3708668).

If you look on AYME.org.uk you will find lots of useful information about M.E.

It is a charity for the 25 and unders but they have an ability scale which is very easy to help people understand how you are affected and what sort of symptoms you will suffer.

My daughter has M.E and we found AYME to have the clearest information around.

Thank you so much to everyone who's replied to this thread.

Midvixen, I've joined AYME and printed off the ability scale to show to the OH, thanks
AnnaK, that makes so much sense!! ANs your other post had me in stitches!!

I feel so less alone than I did when I wrote that post. I know it was silly to feel alone anyway, and I'm know I'm not the only one with ME, and certainly not as severe as some people, but I think years and years of trying to explain to people withour actually really knowing how I felt myself was starting to take its toll on me.

You're very welcome. If anyone looks at you with a blank expression when you tell then that they have M.E, or say a ignorant cooment e.g "I thought M.E was flu" :loopy:, do what I do, tell them to google it, instead of you trying and struggling to explain how you feel all the time. Works for me!:thumbsup:

Hi

I suffer from ME and although most of the time, I'm generally able to deal with it, over the past few days I've been feeling myself getting more and more exhausted early morning (particularly between 9.30 and 11am) and after lunch (between 1pm and 3.30).

I've tried sleeping more, protein bars, and gentle exercise to wake me up, but as I work full time, its beginning to really get to me. I feel as if I can't do my job properly because I'm falling asleep at my desk, and its beginning to affect me mentally, as I feel so useless all of the time.

Does anyone on the forum also have ME and have any tips, or does anyone just generally have some tips on beating tiredness because I know there's nothing i can do to make it completely go away, but I just can't really take much more.


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Hi, I don't know where or what work you do but you may meet the terms of the Disability Discrimination Act. If so, and you have informed your employers you have this condition you will be entitled to be considered for 'reasonable adjustments' for work. This can include regular breaks, which does not necessarily mean breaks away from work but swopping tasks, for example, if you are struggling cognitively can you do mundane tasks etc. A source of information could be the Disability Employment Advisors accessed through the Job Centre who can help you with ergonomic assessments etc, the aim would be to keep you in employment.
I have used them in the past and they were of enormous help. They were prepared to get someone to negotiate with my manager, arrange a workstep programme etc. I have 'access to work' taxis, which makes life easier with travel. Google the government website or DWP for help with disability issues.
Unfortunately working can mean a choice of using energy for work and accepting you have little life outside for social and leisure activities, or at least it feels like that at times!!

How long have you had M.E? What does your GP say? Is this the same job you had before you had M.E? You may have to consider changing jobs or restricting your hours. I'm sorry to be so negative but trying to lead the same life you had before M.E is not good for you and could prevent recovery. True some people don't recover but many others with rest early on do recover. I think you need some expert advice on this.