Brain Fog Blessing

Can that title be true? Can brain fog ever be a blessing?

Thanks to a huge effort on Growler’s part my application to renew my Disability Living Allowance (DLA) is finally completed and being posted today.  A few weeks past my award ended but it’s finally finished.  Brain fog, cognitive, memory, sequencing and communication problems have made it impossible for me to complete such a complex application on my own.

Brain fog also means I can’t quite believe that it’s now over 2 years since I first applied for DLA.  Or that I was diagnosed with ME/CFS 7 months before that.  Or that I’ve actually been ill enough for it to affect me day to day for at least a year before that.

My brain fog almost cushions me from the stark reality that I’ve been ill, every single day, for years.

I was going over some of my blog posts from the last time I applied for DLA.  The posts from 2 years ago seem to have much the same themes as I live and struggle with now.  How I live with them has changed a little, but the landscape looks much the same.

Some months after I got diagnosed a couple of people with ME said “the first year is the hardest”.  It seemed a little damning.  I didn’t want to be ill beyond a year for goodness sake!  And here I am a couple of years on reflecting that they were probably right.  Except the first year of being ill, AND then the first year of being diagnosed whilst having become so ill I couldn’t work or do anything very much, were both equally as hard.

I’m wondering whether the reason I don’t blog as much about life with chronic illness is that I feel I’ve said it all before.  I’m just revisiting old ground.  But I have to remind myself (and you) that you’re never stood in the same place twice in life, because whilst you can go back to the familiar you and the world have all changed a little since you were last there.

Maybe blogging about life with chronic illness does get kind of same-y after a couple of years – but that’s surely a reflection of what life is really like?

I got told this week that the way I deal with my illness is an inspiration (which from the person who said it was meant wholheartedly and not in a patronising way at all).  I’ve been told similiar things by others.

The thing is we who live with conditions like ME/CFS come to learn that you just have to do the best you can with what you’ve got.  It’s not about being brave or being amazing – it’s a lot to do with not really having much of a choice.  You have to kind of get on with it, or give up.

I’m pretty sure that if I didn’t have Growler to keep me on an even keel this would be a different story.  There would be a lot more wailing and gnashing of teeth.  So maybe I do in fact do a good job of living as positively as I’m able. Hmmm.

So anyway. Here’s to revisiting the same old ground on new days and trying to be chronically happy along the way.


5 Responses to “Brain Fog Blessing”

  1. 1 Living Chronically November 5, 2009 at 2:26 pm

    Nice post. I’ve always said that, when someone says, “I couldn’t do what you do.”, it’s all relative. You do what you have to do with what you have been dealt. I could just give up or put one foot in front of the other and hope for a better day. As I said in a recent post, I choose hope. 🙂


  2. 2 ashysheela November 5, 2009 at 3:27 pm

    well i think the fact that you have just filled in a DLA form and you are feeling pretty positive shows just how well you are coping! (virtual back slap). I have also been told how amazingly i cope (by people who love me and who want to acknowledge my struggle) but it is like you say, what choice do we have? Routine, brain fog, and focussing on the tasks in hand do make the time pass without as much drama, but it is shocking to poke your head up and realise two years have passed with little change. It is good not to live in the full-on grieving and depression stages forever – wishing continued chronic happiness to you, with occasional rantings allowed!

  3. 3 Jozephine November 5, 2009 at 4:52 pm

    A great post, thanks! I’ll be renewing my DLA next year and I’m already quaking in my boots at the thought of all that concentration. Plus, I’m better than I was and I may lose quite a lot of it.

    You have a good way of describing what it is like on the ‘inside’ of this illness. I know what you mean by having no choice. You get on with it or you go under. Some days you go under but nobody sees that much.

    Take care.

  4. 4 Sue November 5, 2009 at 11:20 pm

    Oh, shoot, now I forgot what I was going to say. What was the topic – brain fog? Oh, yeah…

    I was undiagnosed for the first year of illness, and I totally freaked out when I tried to get an appointment with an Infectious Disease specialist and was told there was a 3-month wait! I thought “this might be an infectious disease and they want me to wait 3 months?” and “I don’t plan to still be sick in 3 months!!” How little I knew back then, huh? But those first years were definitely the worst, especially before I was diagnosed and understood CFS.

    I’ve had the same thoughts lately about blog posts, so I’ve sometimes been linking to older posts when I feel like I’ve described something before.

    Still, just the act of writing and reading about our experiences helps, doesn’t it? Plus, new people are getting CFS/ME every day and it’s all new to them!

    Keep writing and we’ll keep reading!


    P.S. I’m grateful to my husband, too. In fact, I just wrote a blog post today about our caregivers.

  5. 5 Chronic November 11, 2009 at 6:10 am

    That is an amazing story. Being grateful to everyone is always a great thing to have in your life.

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