One Day I Will …

I’m having an odd week.  I think I am mentally, emotionally and physically tired.  I had another run of terrible gastric pain and my trouble sleeping has continued.  I think it’s taking it’s toll.

Through ME/CFS Awareness Day I read so many stories of people with ME for years and year.  9 years, 10 years, 15 years, 20 years, 35 years …

I know I believe, from what I have read (and read extensively) that ME is not cured.  It can go into remission but you’re never completely free of it.  I don’t want to believe this – I want to believe I have something that can be fixed.  But no, 95% of what I hear and read and feel is ME is an illness that never totally leaves you.

Somehow I manage to pin that belief on all sufferers except for me.  Until this week – when it finally rang in my head that I may never never be rid of this illness.  I might achieve remission and maintain hope.  Hope of remission, hope of treatment, hope of a cure.

So I have this thought in my head and it’s creeping into my heart that I’m always going to battle with this.  I’m never going to have a clean bill of health again. 

It’s infinitely easier and more possible that I will get worse than better simply because I only need a small window of stubborness and/or stupidity to worsen my health.  And I want to scream and wail and let go.

I am not ready for this idea.  I am not able to think it can be true.

I’ve always thought “One day I will go for long walks again”, “One day I will cycle all day”, “One day I will spring about with energy and ethusiasm”, “One day I will be able to do all those jobs around the house for my mom”, “One day I will have that fitness freak phase I always promised myself”.

This does not sit well withe the idea that I will always have ME. 

I can only hope that remission will allow me these freedoms. 

But for now I can only try not to think about any of it too much.


4 Responses to “One Day I Will …”

  1. 1 Rachel M May 18, 2008 at 5:23 am

    I try not to think about too far future. Anything could happen before we reach there.
    I would also think little at a time. (I’m often guilty of thinking too much, tho. :-P) Remission is still better than none at all. It just require extra care to maintain the remission.

    Most importantly, I don’t want you to forget the wonderful project you have just achieved. As a fellow MEite, I know how much efforts and time you had to contribute and suffer from consequences. You are very courageous and inspirational person. The Bloggers Unite for ME/CFS Awareness clearly made people aware and be inspired and its ripple is still travelling towards wider range of community.

    Maybe next year, I may be able to contribute little to help such as adding blog link to your archive post… (I’m just thinking at the moment.)

    Although we cannot see massive difference now or next year, I am sure it is slowly accelerating the speed towards critical biomedical research and community support we need.

    You may be feeling responsible and obligated to hope as being the face of the project. But hope is subjective and it continuously changes. Keeping the balance of hope and reality is an art. But nothing will happen when we stop hoping…

    I know you are just thinking loud here and you already know this in your heart.

  2. 2 ashysheela May 18, 2008 at 6:10 pm

    Oh i know how you feel, it’s a real tricky one this… a constant battle. I think the uncertainty is so difficult. We can never know the future until it happens to us can we? I think all we can do is seize any opportunities we have on better days/periods of time to do those things on the “one day” list, even if we do them with reasonable adjustments…

    I think it is important to come to terms with the possibilty (not certainty) that you may always have to contend with ME but also that there will be better times and probably worse times along the way: the fluctuations will allow you to do things that may seem unlikely right now… at least that is what i am banking on! I am having pretty much the worse period of my illness so far, but i know it has not always been this bad and I think it probable that there will be some easier times ahead.

    Yes we can make ourselves temporarily a lot worse by doing something stupid/stubborn as you put it, but I also think that the illness has such a mind of it’s own and i personally believe i have less control over it and it’s fluctuations that the doctors/specialists would have us believe. I had quite a dramatic improvement a couple of years into my illness and i don’t think i was doing anything differently or pacing perfectly etc, it just happened. I also got worse after working part-time for over 5 years and had not changed anything or had any dramas, things just got gradually harder and harder… What i am trying to say is, it sounds like you are blaming yourself when you take a downturn, or when you don’t improve, and i think these things pretty much are out of our control, but things can and do change.

    Apart from the fitness freak example i can see ways you can do all those things you list, just by changing a few words, like do some jobs for your mum, wheelie walks, etc. i know it is not the same but it is a start…

  3. 3 Jaime May 22, 2008 at 5:00 am

    Just wanted to say that I can really relate to this post. I have been dealing with similar thoughts and feelings. The hugeness of the reality just doesn’t squeeze down into a manageable idea that I can neatly fit into my brain. I guess you just walk through each day hoping that it will be better than the last, until you get tripped up again with this huge reality. And start all over.
    Thanks for your blog I really enjoy your honesty.

  1. 1 freedom/exile and illness « Ashy’s Blog Trackback on May 19, 2008 at 5:36 pm

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