Do you ever recover from ME ?

Brain and nerves
1

Hi I've just found you here, it's the most energetic ME forum I've found yet.

I went down with a virus over 3 yrs ago now, a post-viral 'train wreck' is how I think of it and so much of what you say resonates with my experience. I don't even know where the first 18 months went, I lived one day, hour, second.... thought at a time. I shelved, delayed and avoided; did anything to reduce the burden of life...you all know how it is, and now 3yrs on I am emerging from this miasma a different person; I used to quite like who I was, I'm not so sure about the new me.

Some one commented on the pain of not only being seriously ill but of not being believed and for me it has been this rejection by society that has left the deepest wounds. I seem to be speaking as if it is all over but it is not, everyday is a battle and I take very little for granted.

I still have my job, which I do less well than I did but better than I have been and by and large my colleagues have been sympathetic if not overly helpful. I find myself in a sort of limbo where I can think of doing some normal things again and am not completely defined by pain and fatigue but still can't do much. My cognitive abilities have returned sufficient for me to appreciate some of that which I had been oblivious to( one of the few kindnesses in this trying condition).

During an exercise at the ME clinic we were asked to draw a line to illustrate the progress of our health from before the onset of the illness to recovery. The line plummeted and slowly staggered upwards ending higher than it began; when queried I spoke of my belief that this illness could be transformational for it made one change and yes, grow into someone with more compassion and a deeper self-knowledge. This view didn't meet with unanamous aclaim! but I hold to it even more firmly now. I would in no way downplay the cruel and unusual suffering experienced by all those who pass this way, or justify it by future 'gain' but I am irrevocably changed; though at what cost?

How do I define myself?, as someone who has ME, will recover from it or will become asymtomatic and is ME the pain and well, you know, or is it the distance from those that can never understand; a gulf that may fade over time.

I practice craniosacral therapy and use the term Bodymind to refer to the interface of what we percieve as material and psychological.It is a concept I find useful as it allows for the manifestation of symptoms without the need to classify them. Richard Bentall in his book 'Madness explained' seeks to unravel the mess that mental Health classification has become and I think that his multifactorial approach offers a model for looking at the dysfunction of nervous and immune systems which lead to the multifarious symptoms of ME/CFS/FM/ MCS and on and on. Acronyms proliferate so fast, people are in danger of being swallowed up by them.

I seem to have gone off on one but hope that it resonates with someone and maybe their take on this can cast some light on this crazy alice in wonderland world I have fallen into.

2

Hi there Raqib

Welcome to our little group - i'm glad you found us :D I have to admit our little group do like to have some fun - but when you're shut up indoors with life passing by outside without you - its good to have somewhere to disappear to :roll: and after all we're ALL in the same boat 'The Not-so-Jolly Roger' - Shiver ME timbers :wink:

On a more serious note - Your comment about not being believed regarding this illness and that every day is still a battle is unfortunately all too common sad I have only been diagnosed since November 2008 but my neuro believe i've had intermittent CFS/ME since i was 17 (only 22 years late getting diagnosed if this is true :roll: ) and i am still learning what this all means to ME but finding these lovely people here on this forum really saved ME from 'going round the bend' so to speak :roll:

You also said that you believed that this illness could be transformational cos it makes you change and grow into a more compassionate person with a deeper self-knowledge - i would agree with you on that - as for ME to be able to 'cope' with this illness i have HAD to rethink everything that i do :?

I don't know if you can ever COMPLETELY recover from this illness - i would love to think that ONE day i could be living a normal life again albeit with a totally different outlook on things - sorry brain is starting to fog up - what joys this illness brings :roll: If you don't laugh at it - you'll cry :roll:

Nice to meet you Raqib and i hope you'll hang around :D

3

Raquib, welcome to the forum.

I am so sorry but I could only read halfway down your post, my brain wouldn't take it in. You are certainly very eloquent and have a way with words but I am afraid it was too much for my ME brain to absorb.

However what I did read and get the gist of sounds very much like my own experience.

When I have more strength in my fingers and my brain is clearer I will tell you, briefly, my story. smile

4

Hello Raquib and welcome :D

Wasn't going to type anything this morning as I'm feeling pretty awful , but just want to say that what you describe (especially the Bodymind concept) resonates with me completely .

Having had years of psychiatric \"input\" :roll: , and having ME as well as Fibromyalgia......... I know that the psychological element is extremely powerful (PTSD etc) so understand where you're coming from .

Hope you'll stay around - will stop now before I go completely :weird:

5

julia - i think in retropsect ive had ME/CFS on and off for years. the specialist suggested this too, and ive certainly never had very stable energy levels and have always had inexplicable energy crashes :shock:

raqib - lovely to meet you. i understand what you mean about how ME shapes us. i always say that if i get over this im going to be the most zen person i know! :zen: a man at my local support group also said he regarded ME as a 'teacher'.

however, despite this i cant help still feeling like it has wrecked my life for the moment. im unable to work and have watched my once very active social life crumble around me sad i think ill be able to take a much more positive of the experience if and when i make a significant recovery

(and yes, i know ive got to start now, i am trying....)

6

Hello raqib

I like the way you describe us as an 'energetic forum' ...... I think we will all take that as a compliment :D

Even though we are unwell with this wretched illness we do try to retain our sense of humour ...... I sometimes think this is the only thing that stops me from going completely 'under'. I know others on this forum feel the same way too.

I think we would all agree with you that one of the most difficult aspects of ME is the fact that it is so very hard for others to comprehend how awful we actually feel, when outwardly we look pretty normal ..... well mostly sad After a while the sympathy of family and work colleagues diminishes ... which is in a way understandable as it is still sadly misunderstood by so many.

I have actually attended my group ME meeting today, and the organiser who is a fellow sufferer and works closely with a large ME unit at St Barts, assures us that a diagnostic blood test will be available in a year ..... we shall see :?

I'm so pleased that you have found this forum and look forward to hearing from you again - sorry my reply is a bit on the short side, but feeling exhausted having been at the meeting earlier ..... I'm sure you will understand.

7

Oh goodness, you can just imagine it can't you. We'll all get a blood test only to find out we don't have it after all. That'll be good for the government's targets to get people back to work. :shock:

8

My thoughts exactly Alicia ..... we'll all probably prove negative :shock: :yikes: :wah: OMG

9

That's exactly what I thought when I read that about a blood test - bound to be negative :yikes: :shock:

Nobody would ever believe us again :roll: :yuk:

Do you think some of us are suffering from negative thinking :wink:

10

No, but then how come so many of us are ill with the same kind of symptoms that manifest in the same way under the same circumstances.

I fear a blood test could be open to misinterpretation like the Thyroid Function Tests which have a diverse range and can appear 'normal' when anythng but. :roll:

11

Could be a nightmare scenario for us :shock: :yikes: :ghost: :sadface:

Even Max Dog is looking worried sad

12

Hee hee yes he is :lol:

He understands the problem :dog: :?

And just think of the difficuties with claiming benefits etc if the blood test was negative :yikes: :shock:

And how would we get funding for our Eastbourne residence :shock: :wah:

Oh dear, I think we'd better keep away from all blood tests in the future :vampire:

13

Hi there

Well a blood test IS good news and if we find out we DON'T have CFS/ME then they can jolly well tell us what we DO have can't they - after all they DIAGNOSED us :roll:

Anyway, I'm NOT going to waste any of my energy on worrying about something that hasn't even come about yet :wink:

14

OMG ..... it doesn't bear thinking about :shock:

I think the Eastbourne plans are going to have to be brought forward folks :whistle:

15

Snap Julia :lol:

Our posts have collided again :lol:

16

I seem to have lost my reply to all your lovely responses somewhere in cyberspace. I'm a bit tired now so a big thank you and I'll get back later.

17

Whoops - sorry Raqib, I spelt your name wrong...... :oops:

Can't really blame ME for that :?

Sorry! :cheerup:

18

Oh, it's so annoying when that happens raqib :evil:

Sometimes if you click around a bit your post reappears :wizard: ....... gosh you can tell I am a real technophobe can't you :blush:

Look forward to hearing from you soon smile

19

Hi there,

I am new to this forum (although I have contributed to the gallstones one a couple of times). I was surprised when my GP diagnosed PVFS a couple of years ago as I just assumed I was depressed.

I do know it all came on shortly after getting a bad case of the flu in China (no, normal flu, not the feathered kind).

Hubby has been wonderful but the rest of the family (well, my mum anyway) just think I am lazy. When i sit on the sofa in the evening and barely have the energy to drink a cuppa all I get is \"how can you be tired, you've done nothing\". Nothing! Been to work all day.

I have found that if I can go to bed at a decent time (10 - 10:30) then let my body wake me naturally without an alarm clock I generally feel a bit better. But when that damned alarm wakes me up I am in for a day of feeling lousy (like today). At work and could fall asleep at the drop of a hat.

I couldn't continue without Berocca 1st thing as it gives me the energy to get out of bed.

In a way, I wish the doc had told me I was depressed as a few prescriptions of prozac would have sorted me out.

The horrible thing is not knowing if you are tired because you are depressed or depressed because you are tired.

I have had enough. Gallstones may be agony but at least they can be removed. This is never ending.

Lesley. xx

20

yes u can recover it just takes time, in some cases a long time.

i had m.e for a few years after a really bad bout of flu...i thought i'd never get better, my daughter was only 12 months at the time and i struggled to look after myself as well her. i had to give up work and get people to look after her as getting out of bed was impossible at times and i was dizzy/exhausted and in pain all day everyday. i used 2 sleep for 12 hours straight and never felt refreshed after and couldn't think very well my brain just seemed clouded over, the only way i could describe it to others was it felt like really bad flu all the time (but no one really understood) i started 2 get really down and was jealous of every person that walked past the window (every m.e suffer knows what i'm talking about). i had such an active life b4 working,taking my daughter out, going down the gym, out wiv friends, and the whole suddenly having 2 stop my entire life thing was upsetting that i sometimes couldn't see the point in going on if this it.

all i'm trying 2 say is please please never ever give up, it will get better just give it time, i'm back to my old self after quite a few relapses. i was put on antidepressants (even though at the time i told the dr i wasn't depressed but put me on them anyway) after a month, i was feeling much happier and relized that maybe i had been depressed all along but just didn't know it. i then started making myself go out for a 2/3 min walk just 2 the top of the road and back it was hard and had 2 go back 2 bed after,and just did a little bit more at a time.

the trick is to push yourself a little bit but not too much as you'll only relapese and make things worse and end up at square 1 again.

my adivce is to just keep being positive and tell yourself it will get better in time and life will be fun again one day soon. xx