Ch Ch Changes

As I reach the 2 year mark since my grand return to the hometown, the changes, especially physical, that the Wegener’s has demanded from me are beginning to weigh me down like an unwanted sandbag.

I used to run. Believe it or not. None of this cross country marathon business like proper runners, but I would run 100m races and definitely chased a pikey through the Pentagon once. Watching the London Marathon on the telebox requires systematic naps now.

Much to the amusement of others I was a morris dancer as a youngun… skipping around in thick black tights and a heavy outfit was certainly no mean feat. 

I used to walk, a lot. Even the year before diagnosis I would walk from one part of Southampton to another for work. Now it’s touch and go if I can make it to the bathroom or up the stairs. I actually congratulated myself for walking to the further bus stop this week, worlds apart from winning the 100m once in year 10 or something.

Last week, Thurs, I had to be picked up because I couldn’t walk and didn’t have my walking aid with me. At 32 years old I have a walking stick (for as and when use) and need to be chauffeured home because the 5 min walk to the bus stop is impossible. This is my life now.

I didn’t think I would be emotional about my previous career, but I miss having the strength to work a 70 hour week in hospitality and then still manage at least one messy night out. It’s barely comprehensible that me and past me are one and the same. The other notion is that I ate old me and that’s why I gained an extra person of weight, let’s not rule it out.

It isn’t even the weight that stops me and this is where the vicious cycle unmasks itself. The thing that stops me is foremost my lungs, simply not having the capacity, I can’t even scream anymore. It’s also the unpredictable nature of my muscles and joints. The past week I have been unable to use nearly every limb on different days, this is what makes basic tasks a mammoth exercise.

As if I haven’t lost enough independence, I don’t even have full control of my own body. 

I am trying to stay upbeat and humorous and all the jovial elements my character can muster, but it is getting harder. I am trying to do what I can to build resistance back up, but it’s hard when you lack options and things stack against you.

I need to try and write more so I can release some of the bitterness, otherwise I will just end up a grapefruit. This is one segment though, one bitesize piece of the troubles darkening my smile.  


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