One year on from diagnosis of CFS/ME

This week commemorates the anniversary of the diagnosis of my CFS/ME, and yet 8 1/2 years since my first ‘episode’ of symptoms.

How different my thoughts are a year on, last year I was full of panic and fear and the diagnosis temporarily brought some relief, that was until I discovered that diagnosis of such a condition doesn’t put you on a path of recovery, sadly it is more a case of washing their hands of you gifting you a statement of a fact of life, you have an incurable possibly permanent condition.

When given a diagnosis of any disease one is given choices and what I have learnt more than anything over the past year is how personal those choices become. Any disease can easily overtake your entire life, particularly if it causes you to discontinue living as you previously knew it.

Firstly acceptance of both the condition and your choices are vital. The interesting thing about CFS/ME is its nature and the nature of those often suffering from it. It was always in my nature to fight, fighting failure, any challenges and the joy in overcoming these obstacles was a dominant feature of my life, so it would be natural to assume that with that nature I could fight this disease and return to my life as I had previously lived it. Each time a specialist told me that I wouldn’t be able to return to my career or my previous levels of activity, I swore to my self that I’d prove them wrong. Then those that knew me would agree that I’d be able to overcome this and prove all the doctors and specialists wrong, and in record time. So here I am a year later in a place both physically and emotionally that I would never have dreamt of.

I do finally feel that I am on a road of recovery, but to get on this road I have had to accept my physical limitations, to be able to write this I have to pace myself, not using my eyes for concentration for several days to save up, and then instead of pouring out my story in one obsessive burst I need to tackle it little and often,  fifteen minute sessions, trying to calm my mind and eyes in between.

Then of course my moods and thoughts on the subject develop and change so I often scrap an original idea for a blog.

The biggest lesson though is learning to live in the moment, right now, not ‘after that exhibition’ or next week, month or year, just now. Then it’s no longer worrying about other people and their thoughts about me, my illness or my recovery.

I have a friend with a disabled son, and I remember her mentioning once that he needs acceptance not a cure, and that’s where I am now. I’m on a programme that is making a difference, but it takes time, estimate is another 12 months.

When healthy I was as judgemental as anyone, seeing people with seemingly leisurely lives being cared for by others or the state, but I was quite sure they could work if they put their mind to it. But life isn’t that simple, and life often means that unpaid survival is some peoples limit. I can now walk, sometimes, I can bake sometimes, yet I am no where near well enough to prepare three meals a day for just myself let alone my family.

I am starting to be able to have days out and a year ago, although it was virtually impossible, I was also paranoid that if I was seen out smiling I’d be expected to be back at work on that rollercoaster of a career the following week. Now I’m remembering that great old-fashioned word ‘convalescence’ and just how important it is. There are many people out there who are recovering from operations, diseases and traumas who need time to just cope with basic everyday living, are we living in such a harsh society that people should feel guilty if they stop working when a loved one dies, or they feel that other family members need their support?

The interesting thing is that I thought we were, and my guilt was huge, despite 20 years plus of flat-out working with only a handful of weeks holiday spread across them, I couldn’t bear to be seen lying in bed unable to move, but worse than that was to be seen smiling sat in the garden! Now that I am happy in myself and understand the power of peace and rest I am finding that no one was actually being judgemental to me, nobody once said ‘shouldn’t you be back at work?’ it was all in my head, and now my head is clearer I can concentrate on what parts of my life I want to return, and when.

I really am stopping and smelling the roses, with no plans yet to return to painting them!

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