Talk to me about ME.....

[mattysmum09]

Just wanted a general idea of what M.E is like for sufferers as have had couple of friends diagnosed with it in the past and wondered how it affects others, what help how bad it can be....can you stil work if you have it? Are there varying degrees....etc etc

Hello Matty it feels like having severe flu all the time ( I mean flu as in proper flu and not being able to function).
As a sufferer myself I think you are great for wanting to understand this . Knowing that someone close can empathise can be a great comfort . X

As to whether people can work with it ...it can vary as to how much stress they have in their lives , what type of job they have , the flexibility within the job ,the mindset of the sufferer , what treatment the person is having ( and a lot of this depends on how good their GP is , the postcode lottery for funding etc etc ).

It really depends upon the severity of it.

I know folks who can barely get out of bed sometimes and need to have assistance for walking. I've also known such people recover after a few months but it can stay with you for much longer.

I have a mild form of it and I can function fully most of the time. It is generally cyclical with energy spikes and troughs. When I'm on a downer it plunges me so far I can barely lift my arms and I have a crippling headache that clamps my neck solid. When I first got it I would sometimes be stuck with my fork halfway to my mouth and couldn't get any further. I would pass out when relaxing.

Since then I have managed to balance it so that my energy levels drop in the evening rather than during the day. For me it is a case of keeping occupied, sitting when I can and just pushing through. I used to medicate with caffeine but it got to the stage where I would be adding three of four tablespoons of coffee to a small coffee cup and it still wouldn't work.

Some find exercise and healthy diet are an excellent way to ensure that energy levels are kept up.

I do find that changes to routine are crippling. The first days of school holidays cause me to crash as I will normally have been keeping myself going and have been using up my energy reserve and will have to pay for it.

More than anything for me this is the hallmark of ME. You can appear normal, you can do what you want but you will pay for it later.

One of my friends is exactly how you describe, sometimes up sometimes very down and after a day in college she will then be worn out the next day not like others at all. But she had it from an early age another friend has just been diagnosed aged 32....how common is it to come on later in life? Also i remember seeing a programme about ME where this woman was trying to help make herself better through diet and exercise when she could but it turned out her body wasn't making the enzymes needed to break down and get the goodness out of the healthy foods anyway. Anyone heard of that?

MNHubble your last paragraph is so very, very true .
I have not heard about the enzyme theory, although it is pretty well understood that physical or psychological trauma can trigger the onset of ME .
For me it was a severe viral illness.
For my sister it was an accident .
We were both predisposed to it. , but those events were the triggers.

It can come on at any age as far as I'm aware. I've always been quite susceptible to every bug going around and this was like a super extension of that.

I was hit by a pretty bad flu about 6 months before the symptoms showed up and that wiped me out for about 3 months so I'd barely gotten over that. One theory is fighting serious illness does something to the body. I caught a flu last year and whilst I was back to work in 4 weeks (a week off either side of the school holidays) I was still shaky on my feet, slightly feverish and ultra worn down 9 months later.

I was in my 30s when I got the diagnosis.

At 37 I have varifocal lenses which given family history and according to my optician is 10 to 15 years early (if not more). As soon as I mentioned ME he stopped worrying and explained that the eyes are controlled by muscles and with ME mine react slower, tire easier and need a little help.

BUT I am progressing in my career. I had to go part time initially but since then I am balancing it. I am in charge (most of the time) and I am determined to control it rather than it control me. It doesn't always work but I recognise the signs and I take steps to adapt.

With the energy thing: I can find that if I let things get out of synch I can be collapsing in the day and awake all night.

Hi MNHubbie yo sound like me(pardon the pun!) peaks and troughs although over the years my 'norm' is not that of my peers. I do work (because i have to) but because it is a new job and i am not yet in a routine i tend to wrok then sleep weekends...not much aof a life really. i am far better in the day but by 5pm i am ready for bed...which is difficult as a single parent.

i have just spent 2 days in london with the kids and i am paying for it now. My dad knocked me up at 11 am today (kids are with their dad!) i was planning on a bed day....but im up now, done a bit need to go get kids then im looking forward to my next bed day.

this is normal..when i crash i can be in bed for weeks...the crashses alawys come following some event...usually stress based...i never quiet recover from a crash..

I just want my life back...i was always the life and soul of the party but after a very stressful year 10 years ago im now known for the one who will be asleep by 8pm. im lucky i have good friends and family, but im not sure they really get it.

i guess im stubborn.and needs must thats what meake me get up and do every day. to rest would be far easier and less painful..

Finally the pain is a real issue... it is hard to control, and the pain relief can cause other symptoms... not nice at all..

Some people with mild ME can still work, but their overall level of activity is greatly reduced, and if they push themselves over their limit, they will pay for it.

Severe ME can kill you. A few recent deaths in the UK
Emily aged 30, Lois aged 34, Victoria aged 18
www.guardian.co.uk/commentisfree/2012/mar/30/me-emily-collingridge-chronic-fatigue-syndrome www.burtonmail.co.uk/News/Complications-from-ME-led-to-death-of-teenager-30032012.htm

So there are varying degrees of it.

I recommend www.investinme.org to anyone with any interest in ME - I have the DVD of last year's conference.

Norwegian research usng a rheumatoid arthritis drug called rituximab to help ME patients - worked for two thirds of the patients the doctors are speaking at this years London conference.

www.mefmaction.com/images/stories/Overviews/Canadian_ME_Overview_A4.pdf

About enzymes, was it something like this? www.drmyhill.co.uk/wiki/Enzyme_deficiencies_causing_gut_symptoms_-_the_specific_carbohydrate_diet

The spoon theory, about lupus, but useful for understanding other illnesses too www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

OMG spoon theory is so right!

I can totally see the Spoon Theory as perfect for more severe ME as it perfectly describes me at my lowest ebb and the kind of sums I mostly do subconsciously now.

Bellshell I went through a stage for about a year and a half of going to bed at 8ish. I should have stuck to it I think. It happens occasionally but more often than not I do still fall asleep in front of the TV around 9 or 10.

I have moderate ME and I wish I didn't.

it all started when I went on holiday and caught some kind of nasty foreign illness. It laid me up for weeks and weeks and after that I have never been the same.

I get up in the morning more tired and stiff than when I went to bed, I have an almost permanent headache and sore neck. My joints hurt, mu muscles hurt, I have horrible burning pins and needles type feelings in my hands. feet and tongue, I am either far too cold or far to hot and even normal things like hanging out the washing or hoovering mean that I have to sit down for a while afterwards. I have dreadful irritable bowel, am often nauseous, have no concentration.....

I did a stint last year where I cleaned the church for 8 hours a week for 3 weeks - I was ill for 2 months after that with a fortnight where I couldn't even get out of bed. I have had to cut completely back on all my outside the home commitments. You could stir my house with a stick and my kids have no life because i can't go anywhere or do anything. firstly because I have no energy at the time and everything takes me far longer than it should and secondly because I then pay for it for days after. Even a walk out to the local country park to do our schoolwork in the fresh air is a no-no now.

I was ill for about 2 months after Christmas time because the small amount that I did took it's toll. I've been pretty bad the last couple of weeks because of the extra activity Holy Week holds. Sometimes even typing on the computer is too much because my eyes stop working and my fingers seize up.

Every day is a series of choices. Will I hang out the washing or fold up yesterdays? Will I do an online shop or walk 100 yards to the corner shop for bread? Will I read a story to the children or do a bit of knitting? Because you can bet your boots that I can't do both.

Don't get me wrong, I am better now than I was at the beginning and I now take every day as a new start but it is a bit wearing. The worst bit, though, is that my brain just doesn't seem to work any longer. I forget things, I get words mixed up, I can't concentrate. When things are very bad, I can't even seem to do a simple sum or a bit of spelling and I say the most ridiculous things because my word recall is awful. Not good when you are HE 4 older children.

It's really good that you want to try to understand, OP, because there is a real lack of understanding and compassion for people with ME.

This thread is very timely, a mum of five children I know has recently been diagnosed with ME, not sure what severity. A relative of mine also suffered very badly but seems to be almost back to normal now thankfully. stressed thank you very much for your insight, I have always loved your recipies and your outlook on life, hope you get some relief or abatement very soon.

There is a film about ME voicesfromtheshadowsfilm.co.uk/

A group for the severely affected 25megroup.org/

Symptoms can vary from person to person, fluctuate over different time scales, severity different from person to person. It really does seem to be different for each individual, hence very important to listen to each persons story and not judge or pre-judge.

my sister had it badly for about 10 years. She described her symptoms as like having a bad hangover all the time. She was extremely sensitive to light and had to lie in a darkened room. She had no energy and would need assistance with all activities of daily living. She was usually able to walk from her room to the toilet.
She is now totally better. She worried for years that she would have a relapse but thankfully that hasn't happened. She developed ME after having glandular fever.

FeeltheBeer, I think that sensitivities are quite common. I'm really sensitive to sound, now and find noise quite distressing, not funny with a house full of bickering kids . I've also developed unbelievably sensitive skin and keep breaking out in random rashes and I can't drink at all anymore because I have such a bad reaction to it.

It's very true that the condition varies from person to person, day to day, hour to hour, so you have to talk to your friends, OP, and see where they are. I have better days, where I can do most of what needs to be done and then days where I can't even take myself to the toilet or hold my own teacup, your friends will probably be similar. The other thing that many people don't really understand is that even small things like chatting to a friend is completely draining. When I have a friend round (and I only do it 1 at a time), I have to go to bed afterwards, even if they only stay for an hour because the effort of talking and being social takes a heavy toll. It's hard going and not just for the person with ME, it takes a toll on relationships as well.

I think that the answer is that everyone involved just has to take each new day as just that; a new day with new challenges and opportunities.

HE mum - well done on being able to home educate! My illness is one of the reasons that we will go down the school route having previously thought about HE. I just need the time away from children to physically lie down. I do struggle a lot with everyday life and hate that it takes such a toll on me. I don't think having 2 children was a great idea in my case - I'd forgotten the exhaustion that comes with having a baby and I really struggle to give the older one as much attention as I'd like.