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!.

TENS Machine - Update

The 'Knight in Shining Plastic' I described recently (Back Pain - Sudden Worsening) - the one that arrived just as my back pain became unbearable after it seized up - has been working brilliantly. I've tried just about every mode, and program within each mode, and found the one(s) which help the most.

The unit works by stimulating nerves and muscles via a small electrical impulse. When on the sensation feels like mild 'pins and needles', a tingling or prickling feeling and, if turned up high enough it sometimes makes the muscles twitch. 

So far I've used it two or three times a day on my lower to mid back and, I have to say, it's an amazing piece of kit. I attach the electrodes to the points of my pain (in my case anywhere on my back will do) switch on and away I go. The relief is more or less instant as my pain gives way to the mild tingling and pulsing of the machine - I can increase the intensity of the stimulation with a press of a button depending on how bad my back is, and I tend to gradually reduce this over the course of an hour until I switch off the unit. Then comes the second of only two downsides to the machine - the pain returns within a few minutes of switching it off. (The first 'downside' is the icy coldness of the self adhesive electrode pads that you have to stick on your lower back!!)

But I can live with that. 

A couple, or even three hours a day with no pain is such an improvement on twelve years of 24 hour a day pain. The unit is portable so I can take it with me on trips out to finally 'enjoy' (?) a full shopping trip with my family, as opposed to grumbling and moaning to them after ten minutes of pushing the trolley! (Though I reserve the right to grumble and moan about shopping even if pain free!!)

I've also tried the unit on my hip pain with equally positive results - when on full blast I can walk upright, with no limping. I even managed to do a little 'Dad dance' around my living room with my Daughter. For the first time in years I felt like a normal father.

I know that it's early days, but based on the results so far my investment of fifty quid has been well worth it!  

Pregabalin Update

I've been taking pregabalin (Lyrica) 150mg twice a day for about six weeks now and, if I'm honest, I can feel no benefit with it. The pain in my right hip is still as bad as ever and my lower back pain is still like a toothache - constant throbbing and sharp stabbing pains when I move a certain way or bend to pick something up.

I called my GP today for advice and he suggested I take two 150mg doses twice a day - what he seems to forget is that the last time I was on the higher dose I got horrendous dizziness - no good for me in my everyday life or my work life. I told him this and he replied by saying 'Well, if you're not prepared to try again there's very few options left open for you.'

I feel like a guinea pig for the drug companies as it is. However, to make my point I'm going to try to take 600mg per day again - just for one month to see if a) It works on my pain and b) I get the dizziness again (which I'm almost certain to as I get it mildy on my current dose of 300mg per day)

I have so many suggestions for treatment that the doctor could try and, if I have to make another trip to see him about my medication reactions, I'm going to take the list with me. I know a few adversely interact with other meds I'm taking, but there are others that he could try - if he can get over the shock of the cost to the NHS!!

(Another side effect of pregabalin is weight gain - but that doesn't phase me as I've been underweight for years - it's the dizziness that gets me most.)

Wish me luck.

Back Pain - Sudden Worsening

Last night I laid on my front on the rug in front of the fire watching TV, in an attempt to soothe my aching back, which has been plaguing me for many many months. I laid propped up on my elbows for about five minutes. My lower back pain did not diminish so I attempted to sit up and back into my armchair. I only just made it to the chair before the most excruciating pain hit my lower back. So intense was the pain that I could not move, in any direction, for what seemed like an eternity. It was as though my entire lower back had seized, or gone into spasm.

I have to admit that I panicked a lot. For a good hour it took all of my strength to move. I managed to stand, but walking was incredibly painful and bending was simply impossible, no matter how hard I tried I just couldn't get any movement without horrendous pain. My wife suggested a trip to A&E, but I hate going there so I struggled on through the night. It eased quite a lot when I went to bed, but it (and my usual nighttime nemesis - hip pain) woke me around 3am.

This morning the pain was still intense but I'd got some movement back and I managed to take my Daughter to school, albeit in relative discomfort. On my return home Mr Postman had delivered a package from Amazon - my digital TENS machine. It could not have come at a better time!

I quickly unpacked it and set it up to give my lower back a good session. The relief was almost instant.

I'd used a TENS machine a while back, but I wasn't anywhere near as bad with my back then, and it didn't seem to have much effect. But, after reading several reviews I decided to give it another go. It's early days, but I'm very impressed how it sorted out my spasming back.

I'll let you know how I get on over the next few days.

Easter 2015. Cherry blossom blooming.

This £3.99 cherry blossom tree always signals the start of the 'warm' season for us.  It usually blooms for just seven days - which is about as long as the British summer!