Things…

So, it’s been that time again when O have to go for the MOT with the miriad of specialists.

It’s always an anxious time because of the nature of the diseases, it always seems like I’m walking (more hobbling) on a knife edge. I hate it. But it is what it is… I needed to do (yet) another nerve conduction test and muscle function test.

Then, a week later I went to see my renal specialist. By now, I’m somewhat desensitised by all this, so I no longer get the huge anxiety about them. However, it was discussed last time that I may need another bout of chemotherapy.  This news is always gonna elicit an anxious response.

Fortunately… He says things are stable enough to not bother with it for the time being. It’s an option for the future still, so bummed out about that, although it’s still better than ending up on dialysis or transplant. 

Again, not news news… But it still hits when told (especially when the renal specialist tell you and not the neurologist).

The good news however came mixed with a sprinkling of bad news in that the renal specialist had some results from my nerve conduction test: and the the news that my neurologist was retiring! (Which explains a hell of a lot really) Sadly, I appear to have gotten worse in the nerves in the left arm; new damage and Bock’s in the right arm, shoulders and severe weakness in the legs.

I also appeared to have lost 4kg since February. Which to most would yield an applause, but as I consider myself average (not fat) and don’t appear to be slimmer. Which, given the leg weakness we now think I have lost it in muscle mass.

Now this is the bit that really messed with my mind. Well, I say that… I mean it’s just yet another thing to add to the list. I have noticed a significant change in my abilities. Which has made me struggle with the simplest of things. It’s really hard to get my head around things that are constantly changing.

It truly is the hardest thing to grasp. I constantly struggle to get my head around the changes. I desperately try not feel bad about it, but it can be a losing battle. I don’t try to let it get me down too much, I find that it drags everything down with it. I worry that if I did, it’d be hard to climb out of the downward curve.

But. Alas.

It’s ok to not have time for worry, I… We have to keep moving forward, right?