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.


8 Responses to “Sad and Guilty for my Caring Husband”

  1. 1 Paul Groves June 19, 2009 at 9:01 am

    It means I spend more time with you…that is all that matters.

  2. 2 ashysheela June 19, 2009 at 10:28 am

    I am actually feeling tearful as i read this and see the picture. Sorry that things are getting such a struggle and hoping that more balance is found. Well done for listening to the warning signs and making some tough decisions.

    I hope there are some smaller events Paul can take part in, but i am sure that people will still be keen raise their awareness even if he cannot, and also I am sure he will still enjoy some non-event riding when he can fit it in, all is not lost…

  3. 3 ninacolors June 19, 2009 at 12:06 pm

    yeah, what Ashy said:-) And read my email to Paul.

  4. 4 Jozephine June 20, 2009 at 8:30 am

    Takes a lot of guts to admit something is too much.

    I love when you say ‘tiredness is thick and all around’. It does feel like fog or mud but you write so well.

  5. 5 cusp June 21, 2009 at 2:21 pm

    It’s heart breaking when this kind of stuff happens but you are forunate that you have a partner who is so understanding. The other people wil stick with you both if they’re worth it and not if they aren’t — so don’t (well try not to)worry about it.

    ‘Too much energy spent on trying to live and not much on resting’..such a difficult balance to maintain and so familiar. It’s so hard sometimes not to try for the sake of other people because you don’t want to hurt, offend, disappoint (yet again) when really deep down we know we have to hold true to what we know we need inside or we’ll only land ourselves in ‘bother’…so you’ve both down the right thing.

    You’re strong and you’ll pull through

    Take care (((*)))

  6. 6 freesvea June 28, 2009 at 8:23 am

    You are so lucky to have such a supportive and wonderful husband. I’m single but feel like I couldn’t possibly have something worthwhile to offer a man as long as I’m unwell. Which posed a problem as I’m 30 now, and want to have a family at some stage.

    I have recently started a blog on wordpress. AS I have been feeling better the last few months, after 3 years at home unable to work, I thought I would document my progress and write a bout what’s helped me. I’ve started a new treatment recently, which I am really hopeful about. It’s all in my blog. Feel free to drop by and have a look.

    You have the CFS Society of SA listed. Does that mean you’re in SA? I’m in Adelaide. Who’s your doctor? I have an amazing doctor and other health professionals. Without them I might not have gotten better.

    Health & Happiness

  7. 8 Sue July 7, 2009 at 11:42 pm

    Hi –

    Just back from vacation and catching up on blog news. Sorry to hear your husband had to cancel the ride – how wonderful that he was doing it to help raise awareness of CFS/ME in the first place! No one in my life has shown any interest in helping in that sort of way.

    I really related when you said too much energy spent on trying to live and not enough on rest. I’m really struggling to find the right balance after returning from vacation, where I had few worries or responsibilities and plenty of downtime.

    I hope by now things are a little better and the fake smile has become a real one!


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