This week’s latest symptom is terrible gastric cramps/pain which I’ve been experiencing in the evening and at night. It’s been a while since I had a bad run of IBS cramps which is particularly annoying as my diet is pretty good at the moment.
That’s not really what I wanted to talk about though. It’s just that yet another round of symptoms and pain made me think something startling.
Whilst I was huddled in bed last night hoping to squash the pain away I thought something that has never entered my head before … CFS has ruined my life.
CFS/ME has trashed my life – totally. It has robbed me of pretty much everything including hopes, plans and aspirations for the future. I think of my mum’s quivering lip as she has (on several occasions) been close to breaking down at the thought of all the things I may never get to do (including having a family of my own). She can only bite her lip, look away and ask in a quiet voice to change the subject. And I see the pain and it’s like a manifestation of the pain I feel, the grief I feel for the things I may never have. This illness ravaged my life and that of my family.
What’s really shocking though is that, odd as it may sound, I don’t remember having heard that thought in my head before – CFS has ruined my life. This was the first time it had occurred to me even after two and half years of being ill.
I’ve felt immense frustration. I’ve felt anger, despair, longing, grief and utter sadness. I’ve asked why me, why now, how did this happen, when did it start, when will it end, how will I cope, what if I never get better, what if I get worse, did I do something to deserve this? I’ve said it’s not fair, I don’t want this, it’s not real, I am weak. But I’ve never felt that this illness has ruined my life.
It’s certainly squashed parts of my life. I’ve lost my job and am now unable to work. There’s a list as long as my arm of things I can’t do, shouldn’t do, dare not plan for. But I think I have managed to maintain a focus on what I can do, rather than what I can’t. It hasn’t ruined my life because – well – I have a good life which makes me very happy.
The list of can’t-do is so large and overwhelming it really doesn’t help me to dwell on it. What’s the point? Far better to live the best life I can while I can. Some days it’s easier to set aside the can’t-do list than others but a far larger proportion of my life is spent on the can rather than the can’t. It’s a lot easier for me than for some as with the support of my husband he enables me to use a large amount of my energy on things I enjoy rather than having to fight to just do survival tasks. I am very fortunate in that regard.
As soon as the thought “CFS has runied my life” flashed across my brain I realised that way madness lies. To allow such a thought into my heart and carry it with me would be toxic and sure to drag my spirits down into a deep depression. It would be too too easy to wrap this thought around me but it would suffocate me and really would ruin everything I have fought so hard for.
All of which makes me reflect and realise that I do a pretty good job of being positive. Positivity isn’t a trait I tend to associate with myself – it’s not something that has, I thought, ever come naturally. I’m the first to moan when I’m tired, hungry, unhappy or ill. I hear myself and think of Eeyore.
But it seems I’m able to be a lot more positive than I ever realised. Faced with the brutal reality of how incredibly hard it is to be largely housebound due a fatiguing, disabling, debilitating chronic illness I seem to keep my head above the murky waters (most of the time).
I think I also have a deep belief and hope that it won’t be like this forever and that one day I will get better. I’m not sure if I will get back to my old level of healthy but I have a hope that I will and that I will be even healthier. I am realistic about the prognosis but hopeful. I am, it seems, just like the help guides I read last year said I should strive to be like. Which for me is a huge relief and a cause for celebration.
I have worried that I am too negative, that I haven’t learnt to accept my illness and my limitations, that I don’t push enough or that I push too much, that somehow fundamentally I am Getting It All Wrong. When in fact I am doing a pretty good job. I’m not a super human and my illness isn’t consistent or predictable – so there’s going to be a lot of ups/downs and swings/roundabouts and constantly shifting ground. And that is ok too.
There is also a lot to be said for the embracing of a simple life with simple pleasures – a necessity deemed by chronic disabling illness but one which has many benefits to offer.
Not everyone can stomach that silver lining talk. How can something so devasting be a good thing? Well of course it’s not what I would wish for – I’d like to be bursting with energy and making the most of a full, active life with few limitations. What I am saying is that even with a life stripped to a bare minimum you can still find happiness.
For me thinking that CFS/ME has ruined my life has been a really uplifting experience.