Five days on and I’m still weary with a background headache verging on migraine threat, a very stiff, painful neck and an uncooperative stomach.  I thought I had to choose between feeling hungry or feeling sick (having eaten) but it seems I can now do both at the same time. Oh joy.

Fingers crossed it’s a virus, or unusually lingering payback and not a step backwards or caused by LDN.  Trying to remain optimistic & wait for this to pass.

Of course it doesn’t help that I have a couple of clients waiting for work and that now is the time I could do with making a bit of money to keep me ticking over.  Last night I had a (typically weird) dream but was carrying a large painting around with me everywhere I went.  I needed to finish it but stuff kept getting in the way. Pretty clear what that dream was about.

Yesterday I idly looked at the blog posts from the first month of posting here, which was back in May 2007.  Although ill to a larger or lesser degree for 18 months, I had been diagnosed for 6 months then and off work on sick leave for as long.  I was coming to terms with crushing debilitating chronic illness.  I do see some improvement in how I am day to day from then to now. Improvement is good and I am better able to cope with living life chronically.  But I want more. Of course I want more.

Deep down I now know I’ve always had the feeling that this, all of this, is temporary.  That one day I will feel better.  Maybe not forever but that some level of remission will come.  Even to get to the level of ill I was in 2006 (ill but not this ill) I’d consider remission.  I’d consider relief.  Here I am nearly 3 years after starting this blog with only a tiny improvement and a lot more knowledge.  I’m living with the idea that this might be as good as it gets.

Back in May 2007 I was talking about the massive adjustment not only I, but my family and friends were having to make too.  The losses and grieving of what may never be.  I’m realising for the last 3 years those things have indeed never been and that adjustment has become somewhat more permanent.

I still have that belief that I’ll get better, I’ll recover some day to day function again.  But there’s a fear in my stomach because I don’t know what the catalyst to that recovery is – other than doing the best I can and waiting to see.  Waiting, waiting, waiting for how many more years?

When I got diagnosed I said to Growler “I’m going to beat this”.  Back then I didn’t fully understand the nature of the beast I was setting out to beat and in many ways learning to accept my illness and limitations whilst maintaining hope of recovery seems in many ways to be the definition of beating ME/CFS.  Will I always be this shattered and messed up?  No-one can tell me for sure.

So I’m getting a mental picture of the porta-cabins at my old school.  Portable classrooms to fill a temporary gap that have stood so long moss grows up the sides, the paint starts to peel and no-one can remember what the fields looked like before the porta-cabins arrived.  Everyone accepts them as part of the school but they could still get loaded onto the back of a lorry tomorrow if made to. 

ME/CFS is growing moss up the sides.  This level of ill is temporary somehow but it’s been with me so long it’s my familiar day to day and it’s hard to know what life was like without it.  I can’t just shift it because I feel like it – I need a crane and a lorry, or a team of people with hammers, or someone to burn it to the ground – but no-one can tell me or sure the best way to get rid of it or if it will stay gone.  Well that prota-cabin analogy works to a certain degree anyway 😉

I realise of course that this has all come into focus again because I’m on a new medication which I hoped (hope) might be the catalyst to improvement and perhaps recovery.  And here I am in a big old crash which I just want to say a lot of swear words about.  No quick fix for me.  I also know that this will pass and I just have to be patient (insert more swear words). 

Some days I just want to be free from it.

There’s nothing like a crash to make you look for answers and find more questions.


4 Responses to “Wearisome”

  1. 1 ashysheela February 23, 2010 at 12:52 pm

    i think when you have had a little hope and a little change for the better, then a crash it understandably unbalances things and calls for a re-assessment. You get all excited then things go bump and you wonder if anything really has changed, will ever change enough, etc etc. We can only wait and admire the gathering moss (so green and healthy looking – grr). I hope this crash lifts soon for you and you can at least get back to some artwork, a bit of momentum there and things seem easier i think. You are doing really well to cope as well as you do.

    I wish there was a quick fix, or some answers…

  2. 2 Annie February 23, 2010 at 6:58 pm

    I hope you get some relief soon, I know there is nothing more disappointing than getting excited over a new medication and having hope only to have those hopes dashed.

    Hang in there.

  3. 3 Sue February 23, 2010 at 11:06 pm

    I know just what you mean! My first few months on LDN were so much better that I was shocked and depressed when I realized I was still prone to crashes. This past 6 months has been like one long crash – due to viral triggers I guess – but I still believe down deep that I can get back to where I was when I started LDN and even improve over time.

    I like the analogy of the temporary classrooms. Who knew when this “flu” hit that it would still be with me 8 years later??

    Hang in there and rest a lot – hopefully this crash will pass soon and you’ll be back to functioning better.


  4. 4 Jozephine February 24, 2010 at 2:18 pm

    I said to a new friend the other day “I think I may be stuck with it” when she asked me how long it was likely to last. It was a bit of a conversation stopper. Only a few months ago I would have said that I was going to get better eventually. Eventually never seems to come. I improve a bit, and then I get worse a bit. And then I bang on about acceptance being the key, all the time thinking that if I could only accept enough I will get better and the fact i’m not better is that i’m not accepting enough.
    I think you are right in saying that learning to accept whilst maintaining hope IS beating it. It may be all we have in the end. I know if I lose hope I’m finished.

    Thought provoking post. Thanks.

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Push It 11 Sep 2011

for ME Research

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