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…


A freaking 9.  I’m happy already.


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


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.

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:


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?

Late circadium cycle communications

MBW and I were just discussing about how I buy coffee in the morning before getting my train, and it went something like:

“You need a cup holder on your chair…” said MBW thoughtfully…

“And a mobile phone holder… and a camera mount for my video camera?” I asked hopefully.

“Don’t be silly, you’d look like a dalek.” She retorted.

“Actually, lasers would be really cool… and a spinny tank gun thing. And RADAR!”

MBW looked at me weirdly.

I also want integrated lights on the front that I can use as my “Angry Lights” and light blue hand rims and… TRACKS!

I want a tank.

New Chair

My next chair...

Yeah, too much time on my hands with the writers block thing.


Apologies for the lack of updates – due in the most part to Nuzzle and Scratch keeping us up at night.  Good news is that we have some bunk beds coming next week though.

MBW had her birthday which was a success.  My Dad came to visit and babysat the girls so that we could have  a meal out together and MBW was surprised by the massage and my annual leave.  Monkey was made up to see her Dad-Dad again and we have a lovely swim – all of us – which really gave us all a chance to chill out with each child able to have some one on one time with no time constraints.

In other news, we won a UK bus award at work for the ECC Try a Bus Days and Access Braintree Projects which is exciting, and I have just won an award for an article for a trade association – ATCO –  magazine.  I’ll pop it online shortly.  It’s quite humbling to be recognised in this way – it was something I wrote literally in the hope of provoking one persons thoughts.  I feel very honoured to recieve something as high profile of this nature.

That’s all for now – time for bed in a moment, said Zebedee…


Interesting point to consider…

I’ve started to blog again after a break for about two years… I’ve figured its about time I got back into it, especially when I have more to say and talk about.

Part of it is that I realise that there are probably people out there who need to know what I experience and how I experience it – and how I might have to raise my concerns about those experiences… I think part of life is not complaining as such, but pointing out issues and suggesting resolutions. A timely example is raising with Sainsbury’s Springfield (Chelmsford) tonight about their cafe disabled toilet being out of action (and has been for about 2 months).  The lady was quite apologetic about it but in turn I acknowledged sometimes faults are hard to fix quickly.  Chances are though that it’ll be fixed soon enough.

So – this is my blog.  Hopefully I’ll have lots more to type over the months and weeks.