Meeting The Ghost of My Former Self.

I used to be quite a fit and healthy young man. From the age of sixteen I was forced into activities I wouldn't ordinarily have undertaken. Up to sixteen I avoided any physical activity because I thought I couldn't do them with any flare or skill like my schoolmates could. I was crap at everything - running - always came last, swimming - always came last, football - always last to be picked, cricket - ditto, hockey - ditto. Sport + Gary McArthur = Disaster.

At sixteen I joined the police cadets and everything changed. I knew it would and I wanted it to. Suddenly I was challenging my attitude to physical activities as something to be shunned by forcing myself (or being forced) to undertake them on a daily basis. Granted I still wasn't any good at them, but I tried to break my mindset towards them. The police force got me hiking, abseiling, camping, canoeing, mountain climbing, cross-country running, orienteering, weight training and partaking in almost every other sport known to man in much the same way as the army trains a team of dropouts into soldiers. The police force instilled discipline and order and gave me a massive sense of achievement. In amongst all of the legal definitions and laws and regulations the police force also gave me good health which lasted me well into my thirties. Conversely, it also taught me how to drink like a fish! (but never lose my self control) and that's another story for another time.

From sixteen until my mid-thirties I considered myself to be a fit and healthy individual - not obsessive, but I remained lean and strong and enjoyed outdoor activites like hiking. I'd bump into former school mates who'd let themselves go by piling on the pounds and I felt quietly smug that I hadn't descended into obesity. I was no longer embarrassed by my slender build as I had been at school.

Then.

Then I suddenly died. It wasn't gradual or slowly degenerative. It was overnight. I woke one day with backache. It was 2003. Between then and now I haven't had a single day without pain. Obviously, there have been good and bad, as well as bad and really bad, days, but every day I have had some level of pain in my back. Sometime after the backache began I started to get pain all over my body - arms. legs, head, neck, feet, fingers, toes, hips, knees, and sometime after those symptoms started I began to get the internal ones, IBS, Crohn's, you know the drill. Fibro affects us all in pretty much the same way and a whole myriad of different strokes for different folks.

The point is this, on that day in 2003 when I awoke with backache, my former self had died in its sleep. Over the course of the next thirteen years, as each symptom struck, I gradually became the ghost of the Gary McArthur I used to be.

The physically fit Gary McArthur became the disabled Gary McArthur, and over the course of 2015 the Gary McArthur who was always positive and happy go lucky and forward thinking and strong, became the depressed Gary McArthur, the negative and whining and hopeless Gary McArthur, and it was at this point in my life that I finally met, or recognised, the ghost of my former self - that skinny and spotty little sixteen year old boy, who'd been scared of all physical activities who, through sheer determination, had turned it all around, who'd laughed in the face of his fears and grown to love them (without ever being any good at any of them) was dead. He died when I gave up being 'well'. He died when I gave up fighting. He died when I lost hope during the course of 2015 and became depressed. He died despite reading hundreds of blog posts by other fibromyalgia 'survivors', all with a positive message that laughed in the face of their illness. He died when I stopped laughing in the face of mine.

But, fear not, for that skinny little sixteen year old's spirit is still inside me and he will live again.

I've set myself a goal for 2016: To find the spirit and the grit and the determination and the hope I had as a sixteen year old boy, and laugh once more in the face of my illnesses. To challenge myself in the way I did when I joined a career path I knew I wasn't suited to, simply to face my fear of all things physical.

Unexpected Support

These days getting anything for nothing is an impossible task. This is especially true of hard-pressed local authorities under a Tory Government. 

So I was genuinely shocked to hear that, after my Blue Badge assessment, I had been referred to local social services for 'additional support' to enable me to stay in my own home. (This was especially shocking given the fact that my family and I have never had any intention of leaving it!!) But apparently, the occupational health assessor had decided that my level of disability warranted an intervention by the Staying Put Scheme - set up to support home owners and council tenants remain in their homes for as long as possible rather than enter sheltered housing or care homes.

So, even though I own my home, I'm eligible to access support to make living with this dreadful condition a little easier, and never one to look a gift horse in the mouth, I have.

The lady who visited me was another occupational therapist who observed me doing the everyday things I would do in my home - climbing the stairs, sitting and rising from chairs, getting in and out of bed, getting in and out of the bath / shower, using the toilet (not actually using it!!), preparing meals. She asked me about my comfort levels during each activity and, as I seem to be in a never ending flare at present, I answered as honestly as I could.

The trouble is, I can do all of the things she asked me to do in the fashion I've become accustomed to doing them - I can get in and out of my chair - with some pain, I can get up and down the stairs - with some pain, I can get on and off the toilet - with some pain, I can get in and out of the bath - with some pain etc. I didn't tell her I was in pain each time I did the activity requested but, somehow, she knew. She could see my pain. I wasn't wincing, or groaning at every activity (or, at least I don't think I was) but she identified the areas I have most difficulty with merely by observing me do them!

Two days later I got a visit from the local authority Handy-Man Scheme who installed a bannister to enable me to climb the stairs easier and a week after that the occupational therapist returned with a bath 'balloon' that inflates so I can sit and be lowered into the bath, then raised back up to get out - it's an amazing piece of kit and has made life so much easier

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I no longer have to ask my wife to help me out, or clamour over the edge of the bath to the floor when I can't lift my legs.

I'm incredibly grateful for these things. Having struggled along for so long it's nice to be able to get a bath without the gymnastics - I used to have to get in backwards on my good leg, sit down with my bad leg over the edge of the bath and then 'man-handle' it in to the water! Now I just sit on the seat cushion, deflate it, get bathed, re-inflate it and get out - it's fantastic!.