Time.

So it’s been a year since lockdown and now things seem like they are getting back to some sort of normality.

I’ve been writing thoughts and feels down in the last 3 months, but not published them.. this is for a host of reasons, but mainly this: when you suffer from rare diseases like mine, you go through a lot of different emotions. Not all bad, not all good.. but most are without a doubt complicated.

So something’s I write I don’t publish, because basically I find them too personal to share with the wider world. It’s ironic really. I spent my entire youth doubting and taking the piss out of diary writers or journal keepers… Yet here I am finding it very therapeutic.

An update on the situation if you will is due I think. Simply: the kidneys are still not right and it’s accepted that once this covid business is better, I’ll be going on chemotherapy again.. which isn’t great. But… It does mean that they are still keen and happy to treat me despite the mnd thing going on..

I am expected to take yet another electric conductive test to see what nerve damage has taken place since last year. Which I’m not looking forward to as it’s painful and invasive. but, needs must I suppose.

My biggest thing is work. This year I had to make the hard decision to step down from work. It’s just no longer safe and my mobility is significantly lower than before. (Although, compared to others I am still very mobile really – thank Thor for that) I still can’t bare to leave my colleagues behind, so I’m still involved and will pop by to bug them. And as is their way, they understand and treat me normal as usual.

My concern of course in all this, is that I truly believe that work and the motivation to go somewhere and do something has been one of the driving factors of my condition not getting in the way and my mobility being as good as it’s been. Who knows, I’ll just have to see what happens and hopefully, still trying to use limbs and do things will still help – albeit in a limited capacity.

Anyway.

That’ll do for now. Take it easy folks and remember:

Don’t be a dick!