Weight Gain 4000

sp_0102_08_v6BEEFCAKE! BEEFCAKE!

Happily, I’m not Cartman, nor am I on WeightGain 4000.  But I am trying to “Bulk up”.  Well, simply gain a bit of weight if I’m honest.  But weight gain is a problem for me.

This morning, I took an odd moment and stood on the scales.  I don’t do that often. The numbers began to flick about more than the departure boards at London Liverpool Street.

Usually those numbers would begin with an 8 – a 7 is bad news…

9.

A freaking 9.  I’m happy already.

9,2

Woooah there – I suspect these are faulty.  This is showing well.

9,2.4

Ladies and gentlemen – I am officially Beefcake.  I weigh more than I have done in ages.

But why is it difficult for me to gain the weight?  Not sure.  I know most people with Muscular Dystrophy will gain weight, but I find it hard to keep it on.  Trust me though, I’m not complaining – its probably helping me out in the long run.  But it is nice to weigh something again.

A stab in the heart is worth two in the ghetto

I have to say I was not totally unaware of what was inevitably going to happen.  It was sudden and very odd. 

The steel, 6 inches if not more – I couldn’t even bring myself to look at.  Wielding it like someone who would feature on the front page of a Most Wanted magazine – and not the version they send to your grandmother, either.  I’m sure I’d seen this weapon before in some crime programme.

I had seen documentaries on this before – I knew what was coming.  Ordered to sit down, to show my arms (a custom, I’m not sure why), my own wife enforcing the orders.  Told if I make a sound then this would hurt.  I had a suspicion that pain would be involved somewhere.  This whole thing was giving me a flash back to that time my lunch money was demanded from me – menaces from the school yard – the bully threatening me in a similar manner, me handing over my lunch pennies with tears running down my face, like now – the memories of being 15 rushing back. 

I had to stifle my sniffles – this moment of evil approaching – I offered to empty my pockets but I was restrained – I looked at MBW – laughing as she participated – in cohoots with this representative of the undead, a vampire in our midst – she stabbed my arm viciously – drawing blood – collecting it in her vial.  It was worth more to her than the £1.53 in small change in my left pocket.

This was cruel, heart breaking stuff.  It’s going to take me some time to get over it.  It isn’t helped by having watched “When Blood Tests Go Wrong” the night before and being handed a leaflet “Blood Clots Can Kill” as I entered the hospital. 

You can all help by sending digestives.

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.

Reasoning

Aside from the fact I’ve been away, there has been another reason for the silence.

I have a medical appointment coming up. Its with someone who’s type I know but have not met personally – they are a Neurologist.

NEUROLOGIST: Someone specialising in, well, neurology, and usually happy to do a biopsy as quickly as possible.

Why does this cause a silence? Its a new chapter for me – I’ve not been to see anyone about my condition since I was about 20. Last words were:

lets do a biopsy and see what that tells us

Need I say more. In case you can’t tell, I’m not a fan of biopsy for this. The reason is that to diagnose for my condition, they take a chunk of muscle, which is a very invasive and painful procedure. I am not a fan of such things that involve pain.

But MBW has been researching and thinks that they can do MRI scans now too, to detect the muscle and proteins around the muscle.

So, if I object to the methods of diagnosis, why am I going through all of this?

The first is for MBW, Monkey, Nuzzle and Scratch. The Girls could all be carriers of my condition and they do need to know what I have. Let them obtain genetic counselling if needed.

The second is for prognosis, for MBW to know what’s ahead. She deserves to find out, to give her a chance to… I don’t know, prepare? Something.

I’m also worried – what if the identity changes. It could put an entirely different spin on my life with its impact. I’m worried about how this could all affect my marriage, my relationship with my children.

I’m objecting. I don’t want to be cut open by someone paid a bonus for each operation they do, for someone who’s typical motivation has always been to do a biopsy and get me out of there.

What do I want? I want to know what I have (again), from a professional who wants to help me find out the result and see this very (psychologically) difficult journey, and maybe find out some prognosis. And I don’t want it to hurt.

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.

Pincer like movement

Nuzzle and Scratch are getting a little bit bigger. No hair yet, but better body control…

To pick them up is difficult, takes rebalancing of my body at each turn. Usually MBW will pick the girls up, one by one, and hold them with me so they get that standing up cuddle, sat on my hip, that they do so love.

But this weekend, they and I managed, where I was leant into a corner, something really special.

First, they stand up against my leg and reach out up. As they do, I lift them just below their elbow until they grip around my leg with their thighs. I then move my hands to their arm pits, hold for a moment and then with all the strength I can muster lift again until they are gripping around my thigh. Next step is to get one hand under their bum and lift to a hold, them with arms around me, head on my chest, legs gripped tight. Lowering is under the arms until they are standing.

It feels fantastic. The girls love the moment that they get of an independent cuddle. I enjoy a moment I achieve myself. I don’t know how long I’ll be able to do this for even. I know I can’t pick up Monkey (who happily takes the stood-on-a-chair subsititute) and although I feel bad about that for her, I know she knows why.

The point of this post though is to record the feelings – happiness, achievement, fulfilment, joy, enjoyment, expressions of love – all those bits that can get lost in the memories of time. I didn’t think I would be able to do this act of picking up the girls like this beyond their first few weeks, something I really enjoyed, so to get a second shot with my own little ones is a true luxury… The only other time I will get the chance will be (whispering now) having another or borrowing someone elses small baby for a quick cuddle.

I should also remind myself though: Monkey really doesn’t mind the chair cuddles, so I shouldn’t beat myself up about not being able to pick her up.

So that’s this mornings thoughts.
Time for work…

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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?