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 Surgical Cogitation

I’m sat here still waiting.

And its beginning to really frustrate me, piss me off and get annoying.

I don’t particularly want to have the biopsy. I live quite happily in my life and get on with it – I’m doing it because MBW (bless her) wants some answers for the girls.  I think I’ve mentioned I’m petrified about needles and pain.

But its being delayed and I suspect that although very good, the surgeon doesn’t quite get that in my head I’m managed to psych myself up for this at the times specified. 

I recognise its his choice to juggle his surgical list about.  I recognise that he might be having a long-running morning.

However, it would be really nice if he could recognise that I’ve made a number of arrangements, I’ve managed to convince myself that I can do this – if he stuck to the timetable submitted last night.

Instead, I just feel really crap and I am beginning to consider if any of this is actually going to be worth it – mostly because they’re allowing me to sit here and stew.

I feel bloody sick and fairly close to chucking the towel in and going.

Although playing with the blood pressure charts is becoming fun.  I might have to seek some solace in that game.

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.


The changing state phenomenon

I received a letter yesterday. Now, my first surprise is that I got a letter. Whoopie! Second of all, I got it from my neurologist.

In it he is telling a GP that he ia referring me to the muscle clinic at Queens, London. This is all very good but I now realise that I had been putting off the inevitable – the biopsy will no doubt happen and soon.

I don’t think that I am as inclined to worry as much now more than I did 6 months ago. Yes, I’m still petrified of an invasive procedure. No, I don’t like needles. However one main fear is that of change, a label. If it changes, where does that put me? At the moment, I’m listed as Muscular Dystrophy. Will I end up listed as something else?

It unnerving and unsettling. It took me long enough to get my head around this current diagnosis. Heck, it takes me omg enough to get a blood test! I think I’ve come to accept things might change and yes, change might be good but its still change.

I’m not very good with change. Or needles. Did I mention I don’t like needles?

The Genetics Correlation between Generations

Its been some time since I mentioned about the re-diagnosis business but this is mostly due to a combination of festive holidays and trying to track my notes down from Cardiff.

However, yesterday we had an appointment for Scratch, who has been a late walker and therefore a concern to us. So we met with a genetics doctor from GOSH (Great Ormond Street Hospital) who, after some fun with the family tree, began to look at Scratch, Nuzzle too as they are twins, Monkey as she has some hypermobility – and then looked at me (like a museum relic).

Then she explained about some bits going on in terms of diagnosis techniques that have changed over the years, that actually I should be seen by Queens Square in London but also know that things are less invasive than they were 10 or 20 years ago. The info would be of benefit now not just to myself but to Scratch too, as it can help any possible DNA testing for them. Yes, she said all of this about me.

She suggested starting with a blood test for CK markers on Scratch, and then then gave me a blood test note for DNA storage.

So, I am now resigned to the fact I’m heading for another biopsy but mostly because this will benefit my children now. Probably a needle EMG too, knowing my luck. The only immediate consulation about the impending jabbing was that they offered to take my blood on the childrens ward. They have the freeze spray there. And cool plasters.

The Champion Thesis

After a week of living with a wheelchair that could revolutionise how I get about, here I am, asking myself one question in particular: is this the chair for me?

It started off strong, the chair moving quickly, requiring very little effort to move, even with a child on my knee. The chair itself has a framework that holds the seat canvas, a bucket seat for added comfort and the drop to the footrest and casters allows the frame to curve with your knees.  However, the cross hinge means that the chair flexes on each side as you turn and the casters have odd heights or when you go over bumps.

The fold takes place with a hinge locked cross that requires a tug on a piece of nylon rope to release the back to fold forward and another tug to release the brace. The footrest, which is sprung usually, should be lifted slightly to ease the fold – we had the spring removed as without it, the footrest remains flat at all times, a boon when trying to stand and swivel a transfer. To open, the front should be opened, and the linked string at the front pulled hard. This took practise with those regularly folding the chair but once mastered was a doddle. Brakes, on this chair, were side flick active locks. I am surprised how quick I got used to them

So, aside from the footplate, is all well with the mechanics? Sadly not. The nylon string, after a week in my home, started to fray and come away from the attaching point under the seat.

To make up for his misdemeanour the chair rode well, the ability to roll coupled with decent bearings and a good seating position. The casters location offered a good steering access, too. Word of advice, get the adjustable back, as the standard one will do your back in.

The chair, with a bag on the back, can get very tip prone – worth noting if you commute but makes up for this with a good front weight.

This chair is good, but I need to be convinced. It offers a lot but it has a formidable challenge coming up – the Sunrise Xenon.

Just when I thought it was safe to come out!

I get a letter from Neurology. Yes, the Evil Ones are back! (Dah dah DAHHHHHHH!)

Sadly, this is where the fun ends.  I don’t like hearing from them and now particularly, I had just gotten over the initial amount of prodding that is going to be happening when I get another letter.

This one is seeking information.  Apparently the notes accompanying my previous investigations have gone walk about.  Isn’t that just great?  Now they want to know what other investigations I’ve had… Doesn’t that also fill me with confidence.

So this now leaves me wondering – what else do they want to do to try and re-work out a prognosis?!

So, that is where that is.  Still no news on the Needle EMG and my arm still hurts from the Physio.  Ugh.

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. 



Mentally projecting who you are forms part of what we are. It is probably rooted into some form of deeper psychological study that I can’t warrant time spent this morning, not because it doesn’t interest me but in fact is the basis of the real meat of this entry.

I often visualise what I will do to best plan my way through something or somewhere. Be it from the station in Chelmsford to my desk or from a point to point I’ve never done before, I try to road map things. In it I’ll ensure my journey is simple, appear effortless and is the most effective solution to my common goal: arrival.

So, when I actually apply the journey and traverse the route, I will end as composed as I can. I don’t like being unprepared.

With this comes my chair looking right. If I look like I’m using something from the red cross I feel like I’m not – me. Who I am, as a person. I am proud that my chair looks smart, clean, loved, used – its part of who I am.

But changing this, I’m wondering if it will change me. I’m wondering if the chair looks more medical, will I behave differently when using it, physically? It if looks less medical, will I look or be any different? Its a question I should probably think about.

What happens if I no longer have light up wheels? What happens if I no longer use my feet to steer or otherwise?

There are plenty of these sort of questions I’m wondering because I want to know:

Will I change my physical behaviour because of a physical change influencing my tulpa?

Is this a question we should all ask ourselves? Is this the same as a new pair of shoes or trousers?

Or is it a lot of pontificating rubbish?