The Medical Vacuum

Having had a bit of a break from writing, mostly because I’ve been writing reports during the time I’d usually blog, I’ve not actually told anyone that I went to the hospital yesterday.

I went because they have now analysed the muscle they took out of my leg – the biopsy.  Which means they might know or not know whats wrong with me any better or what prognosis there is…

It is very difficult to know how you should feel about this when you’re 30 years old and mostly in your life all you’ve know is that you have a non-specific muscle disease.  Part of me was quite excited – what could they tell me?  What could they offer to help improve life?  Could they know anything new?

At this point, I would hope for a drum roll… as the doctor scrolled through the MRI scan images, noting various muscles, bones and… my bladder.

So, first off, no, the biopsy showed nothing.  Which means there is no change.

Secondly, its unlikely the girls are affected by my genes – phew.

Third, they’re checking the DNA for other things now…

Which kinda leaves me almost where I was before, except with a little more certainty over the girls.

But otherwise – I don’t know how I feel – am I happy? Annoyed? Sad?

This is it – I don’t know how I feel.  It’s almost empty.  I kinda wish they had told me something earth shattering… would have maybe given me something to complain about… because instead, I’m whinging about nothing.

The disproving of the hypodermic theory

By the time this goes live, I’ll actually be in the middle of one of the worst procedures ever.  I can handle MRI scans.  I can handle hours of prodding, poking and being made to move about as if I were a sack of spuds. 

But I don’t like needles.  I don’t like needle EMGs. I don’t like biopsies.

At 10:45, I will be going in for a needle EMG.  I’m, needless to say, not looking forward to it.

On Wednesday I have a muscle biopsy.  Again, this is not reaching the top 10 in this years fun things to do. 

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The Analogy of the Motion Analysis

tube1In the tube. Out one lift, head for the next – flat to down hill stretches, perfect for the speed. You know when you can hit that perfect stretch – the turn of effortless speed combined with a smooth corner, accelerate a little and ride out.

Its a perfect race track, given the right conditions.

So you get on the road and there is a tractor up front. Another tractor in front of that one. A truck is overtaking them and in front of him is a little Korean made Kia towing an Abbey weigh-a-ton caravan. On coming is a queue of Fiestas and Corsas – everything you don’t want to see.

tube3You get those moments on the tube too.  Where you can’t get past anyone – it is going to hurt, the fact that you know you are a million metres per second below the optimum speed you could be doing but instead you are forced to sit. Slow. Stop.

It almost hurts. You are literally trapped and the only thing to know is you will have to go through this.

I have now got a date of the needle EMG. The biopsy. 3 days in help inside a London Hospital which is going to crawl. And hurt. It is going to be hard. It will be like following the tractor towing that caravan. I’m not keen on needles or pain at the best of times and this is my worst nightmare.

The hardest bit is that I know that I’m heading towards that queue. I know its there. It will now play on my mind constantly.

I’m going to have to think of a really nice stretch of terrain to get me through it.

tube2

The Deltoid Interjection

Shoulder-Muscles-DiagramThis morning I had a physio appointment with a not-so-usual physiotherapist.  Bruce is a Neuro Physiotherapist – meaning he is trained to help me try to keep my body as strong and as stable as possible. 

My previous experiences historically noted within the Neurology side of things, this is one has the potential to be of the nicer appointments.  Sadly, Bruce knows this and is not keen to let up.

We established that my Rotor Cuff and Deltoid shoulder muscles need a bit of concentrated work to get them to work out that they are a) there and b) to become more involved in when I move my arms.

How does this work though?  Its not actually rebuilding the muscle as sometimes physiotherapy can be.  Instead this is about trying to educate my nerves into keeping the signals going as long as possible. 

But there is a downside.  Some of these muscles are rarely used.  So, since I am waking these muscles and nerves up, this is probably going to hurt. 

D’oh. 

What happened

Its been a bit of time since my appointment, mostly to allow me to digest some outcomes and filter some of the bits that need to be excluded because, although nice to hear, are superfluous.

Starting with the niceties: blood pressure 128/81. I am (and I quote) “a thin chap”. I have a pulse.

The really niceties: no biopsy.

That is where it ended, really. I am now being referred for nerve conduction test, a needle EMG (what’s one of those please?) and my old friends at physio.

I think this whole thing hit MBW harder. Its almost a negative session, even though I walked out o… Wheeled out of there with not having to have a biopsy. But essentially, they tell you that you’re doing well, keep eating those greens, pat you on the back but there will be no more news today – that cure hasn’t quite been finished or even started yet. The best I can get is some CPK markers and a few tests. Its hard to see any positive in that.

But for me, its good to know I’m more mobile than most, doing ok and medical science will leave the slicing and dicing for another day.

Why am I resigned to this…

I am writing this sat here in a train doorway. I am wearing my suit, a shirt, a tie, my Berghaus Sports Jacket and my blue Sunrise Quickie HP Q2. I wear a wheelchair, for it too is my Monday best, my Saturday rest clothing.

Its a part of who I am, like it or not, people know I when they meet me – its less discrete than a badge that says “Ask me what the incident was” (See another blog post).

I am comfortable in my chair. It can sometimes get a little too hot. Sometimes its just too big, length wise. But its always been just right for me – capable of going fast and rolling silently,, looking smart, being durable… I love the way I can steer it with my toes on the front wheels.

I got married in this chair, had my first dance with MBW, held all my children for the first time – the depth of how often this fauteuil roulant is embedded into our lives.

But change is afoot. It is getting heavy. It is getting old. I am not getting any stronger.

I need a new chair. It hurts to realise that. I need a chair to carry me through the next 5 years. I need a new suit, a new sporty pair of trousers, a new set of jeans…

Its a change equivalent to that of glasses style, a new type of shoe… Should I go more sporty? Should I go bold in my colour choice? What do I need? Its a big decision step, to go from something that I have turned into a part of me, and switch to an alien concept. I feel excited by the idea but also nervous – what if I hate it, what if I can’t handle it, what if, what if, what bloody if – to the point of “how will I manage if I don’t change”… What will I do in the future? But also what will MBW, Monkey, Nuzzle and Scratch make of this? MBW will have to push me, lift the chair into the car, the girls will want to ride on my knee… This will impact them, too.

Its a massive dilemma and the obvious outcome is new chair but how it will be in comparison to this one? I really don’t know. Its just scary, that’s all. Change always is and I know I have to hit it head on with the right mind set. Because if I don’t, the only person I will really do a disservice to is myself.

Infection of a Doink

I’m ill.  See, I’m coughing… oh you can’t see.  Well, neither can I and I am trying my hardest to see what I am typing through the sneezing, coughing and DVDs being thrust in my face by my adorable but active and slightly demanding Nuzzle and Scratch.

My nurse is trying to tidy the house up and is supplying me consistantly with coffee… but I know from the emails I am getting on my work laptop that I am missing cakes in the office.  It brings me to a little song… its one I wrote myself:

Cupcake

Tra la la, la la la la la la (this goes on a bit)… la la – I want a lemon cup cake. I want a lemon cup cake. Tra la la la – baadoooooooooooooooooooooooooooooooooooooooo!

Its a work in progress.

I think I’d better do some photo editing.  Did I mention I feel rotten and am sneezing?