Thursday, 20 January 2011


I have come across a poem I wrote when I was twenty-one.

An Atheist's Prayer on her 21st birthday

Dear God, if you exist, please make this stop
I am rotting in bed and I am too young to rot

It still makes me shiver that I was this ill, it also makes me smile 'cos it has a bit of Helen Fleet's voice. But probably - more than anything - it makes me sad because there are still young women and men - severely ill, their voices are not being heard, the ME story is far from over, there is still nonsense all around. I also feel glad I am no longer severe - though I have had severe relapses when pushing too hard. These days, I term myself moderate, though I am probably housebound two or three days a week, on average. If I go out one day, I am often unable to go out the next, and of course I still have bedbound days and hours. And I always wake up with poison in my calves, I have to ease into the day. And I still have days or hours where I feel I am about to be very ill again. And yet if you met me for a cup of coffee you would have no clue there was anything wrong with me, though I might say the wrong word, hot instead of cold (or something much more absurd), or not be able to remember a simple fact. And my hands would be freezing but you wouldn't know that. And I am still a constant calculator, spooning out energy behind the scenes. And I never actually feel well.

But somehow this has all become normal and I barely mention my symptoms to my family and friends - unless I am very bad, or they ask.


Alison said...

It makes me shiver too when I read my journals from when I was the most ill. At least things got partially better. I was going to say how amazed I was at how you barely mention your symptoms to your family and friends, but then I realize that I don't either, unless they are new, or very bad. I didn't remember that never actually feeling well is normal now for me too.

Then again I never do stop complaining about my freezing hands...

Cusp said...

Sounds so familiar ...after so long 'feeling ill becomes the new feeling well.' the default status.

As you say, no one would know...its our dark secret, kept close to our chests mainly for the sake of other people so theyre not bored, embarassed or bewildered :'....but you look so WELL ...'

nmj said...

Hey both, I did talk a lot in beginning, of course, you could not possibly hide the fact you were so dreadfully ill! Now is more balanced, and also you can't keep talking about your ME, it is boring, let's be honest, for everyone. It's just not news anymore, not after 28 years ;)

But something about that wee poem got to me last night.

nmj said...

I hope this post was not cloying, it felt a little sentimental.

And I had a great 40th bday party in my flat to make up for the lack of 21st.

But, yes, sad that so little has really changed since 1984 in terms of understanding of ME.

If anyone can be arsed, I am being pumelled on a thread for trying to highlight the difference between ME and Wessely-defined CFS. No worries, if you don't have energy or inclination, just thought I'd mention.

Firestormm said...

Hi nmj.

You know reading your blog I feel that in terms of where 'we' are at I believe I am at a similar point myself.

Housebound more now than bedbound. But still needing to spend differing numbers of hours resting depending on severity.

The fluctuations are what is most difficult about my illness. The 'relapsing and remitting' certainly applies to me.

I gave up reading back through my journals or looking at photo's but then I am only now recovering from a severe relapse in 2009.

Was even working and living independently at that point. So the crash - caused by another viral infection - was even harder to manage. Led to breakdown - so some would say.

Now home with parents - again. At 41 that is hard. But hard for others too. And for my parents and family.

The pummelling on the MEA was not personal. As I have said it was frustration talking. I apologise for any offence - it wasn't meant.

I post at Foggyfriends if you fancy joining. It has been something of a haven for me and others.

I hope you don't mind me adding these comments.

Take care.

Fire x

nmj said...

Thank you, Firestormm, your apology is appreciated. Yes, I did feel pummelled, but I realise how emotive these threads can be. Also, I post as myself, and that adds a layer of vulnerability.

nmj said...

...If I can go out every other day that is a good week! A bad week is very different. I guess I am used to the relapsing/remitting, but I still hate the weak flu legs that come with the drop of hat, I have them tonight, no idea why. Makes me not want to go from the kitchen to the living room. But at least I have everything on my doorstep, living centrally, I can get basics pretty much next door even when I am feeling crap. I can't count the number of times I have gone to the Co-op with my big winter coat on over my pyjamas.

vw said...

"A constant calculator, poison in your calves, if you met me you would not know....." so spot on as always.
M.E is boring & depressing for both the sufferer & their family, friends. The cruelest part for me is not actually the physical suffering but this suffering that we do alone, behind the scenes, the having to think everything through before being able to say yes to things, the knowledge of knowing what it's like to be well & healthy but not being able to return to that way of being. One day perhaps we will return but I fear that cautiousness will never go away. X

vw said...

Oh & I meant to say I'm glad you had a good 40th birthday party & hope it didn't mean traipsing to the co-op in your pjs for the following week or two. The co-op staff are accustomed to me being in there dazed & confused in a complete mess of attire but I've yet to rock the pj look! X

miss milki said...

Once again you're right on the mark! I totally identified with your description of being moderately ill. I'm at about the same level, I get out a little less... mostly just to dr appointments and dentists and physios! But if I do meet someone for coffee they have no idea how sick I really am. I disappear for months at a time and people probably think I'm just rude or busy, they'd never think how much of a struggle life is or realise that I'm always trying to arrange things so I can escape after an hour & have days of recovery time between each outing!

And when people ask politely "how are you?" I always reply " I'm grand", but "grand" for me means I'm well enough to be here. It definitely doesn't mean I actually feel well, because I don't remember the last time I did!

I'm lucky enough that I can ( & do!) discuss my symptoms with my family. I live at home & my parents have been amazing. I know that sometimes their eyes must glaze over a little when I feel the need to moan yet again! But they're good enough to hide it & generous with the hugs & words of encouragement. Yet I would never talk to my friends about how I am. Maybe I underestimate them but I worry that if they really saw how difficult things are for me I'd loose the few friends I've left, so when I see people I keep it lighthearted & positive and play the illness down.

Oh yeah, I have freezing cold hands & feet all the time too! :)

nmj said...

Hey Vikki, The constantly calculating *is* exhausting but it is also second nature to me now, a built-in radar. I remember there was gorgeous food at my 40th, but I was so busy chatting to everyone I hardly ate anything. Still annoyed about that!

Miss Milki, I am sorry that your outside energy is mainly for appointments, that is rough. Don't get me wrong, my close family was/is brilliantly supportive but I suppose after so long there is nothing to discuss. It is normal. Same with friends!

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