Archive for the 'OtherPeople' Category

Sad and Guilty for my Caring Husband

My wonderful Growler got back on his bicycle in the last year and enjoyed it so much he decided to take on a big challenge. A 140 mile ride from the west to east cost of England over 2 days.

bikeHe has been training hard and asking people (mostly from outside of the ME/CFS world) to give ten minutes rather than money. With their time he would be asking them to read an article, sign a petition or perhaps write a letter in support of ME/CFS and of carers.

The ride is in 4 weeks. He’s just announced publically that he won’t be doing the challenge.

Juggling work, home, caring and training for this incredibly difficult event has proven too much.

As he says it’s ironic that the 2 causes he set out to raise awareness for have been the reason he can not participate in the challenge.

I feel incredibly sad and a little guilty that my illness and debility is at the core of him not being able to do this event which he has worked so hard towards and still would love to do.  But life is what it is.  I can’t magic myself to better anymore than I can take up more slack to help him do this.  I want to desperately but it’s just not possible.

I’ve been quiet.  I’ve been in some odd moods.  I’ve been online shopping a lot – usually a sign I’m trying to find a magic fix to make me feel better, to make life better.  My cognitive problems are showing up again – so far in a minor way but still more present than a few months ago.

The adjustment to Growler being out at work full time has been significant.  And I still haven’t got my daily routines right.  The balance still needs tweaking and somehow I need to lift myself from getting through to living as fully as possibly whilst recovering too.  Too much energy spent on trying to live and not much on resting.

The signs are there. The gland pain in my neck is back on a regular basis.  My getting to sleep and switching off from stimulus is faulty.  Tiredness is bringing more muddled thinking, gaps in understanding and holes in memory.  And tiredness is thick and all around.

It’s time to acknowledge the warning signs before things get any worse.

So whilst I feel guilty about Growler having to drop this cycle ride and whilst it feels that me and my stupid illness have forced that decision, I can’t afford to be too down about it.  Because I’m in a danger zone already. 

I have to find the positives and look to the future and maintain hope.  Hope I will turn around this slight decline, hope I will recover and be well, hope that Growler can do another cycle ride, hope that the people who offered him support don’t turn away when things get tough. 

Hope that people understand that when you say no and smile it can be even harder than carrying on regardless.

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Space Cadet

I’m so exhausted today I feel like a space cadet – that is not with it, sort of disconnected.  It feels like I’m a bit high – but there’s no kick or rush.  And I wonder if I appear a bit as though I am high – my speech is slow, my brain is slow and I must have a pretty vacant expression.

I’m still astonished at what your body can do and how such small efforts for me can render my brain so slow and faltering.

I used to watch a lot of those fly on the wall airport programmes (hey I have been ill for over 18 months) and I see them kicking suspected drunks off flights.  I think – whoa that could be me!  “Well, she doesn’t smell of alcohol but she’s obviosuly impaired.  Her speech is quite slurry and she’s having problems with her balance – even standing up without wobbling.  And she doesn’t seem to be quite understanding what the staff are saying to her.”  Hmmm. 


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Push It 11 Sep 2011

for ME Research

CFS Links & Resources

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