Friday, 6 December 2019
Its just such a busy time for Elves
There is a tiredness and then there is this Muscular Dystrophy Tiredness I have been greedy and had both, I also needed a bit of time to think through some thoughts. I absolutely love my little blog and I started this to try and help encourage people to be able to just be their selves, to try and help increase awareness of living with a disability and I suppose to try and smash some of the stereotypes about life in a chair. The one thing that I didn’t actually think through was people that actually know and care about me read it too, this is were the problem came I started to worry on the impact it might have on them which has kinda made it really hard to write recently.
I have so much I do want to do with this blog and I am determined to continue with it, I still haven’t spoke about my trip to London and I have been on a training course on my own, ok no big deal at 50 but I haven’t been able to do this for a very long time it was good it felt grown up.
I want to write about how acceptance is the key and using equipment gives us so much more independence, this isn’t something we can fight it isn’t about giving up or in. I have absolutely no control to how this will progressive physically. Muscular Dystrophy will win physically it is doing but I will try my best for it not to get me mentally.
I have had to come to terms And say farewell to some more muscle in my right thigh it has finally given up ,which means I can no longer move my right leg independently, its taken a couple of weeks to get into the swing of things but my left foot (how profound) is getting very clever at hooking itself around my right foot to move it, jeans are also great for man handling the leg to move it where I would like it to go.
This silly tiredness I have been talking about is nasty its not like that feeling you get when you have worked hard or been for a nice walk etc when you can sit down and feel glowing its different, its when you feel physically sick and either fall straight to sleep when you stop for a minute or you just haven’t even the strength or attention span to do anything nice, its kinda hard then not to feel irritable.
Its hard to tell if the tiredness is because I have been doing so much more with Clive being ill or if it is another progression of the Muscular Dystrophy, so I am having to take stock and really consider how and what I want to use my strength for, which isn’t an easy thing to do at all.
I did decide to stop blogging which in hind site was the wrong thing to do for me, because I do enjoy it so much , not sure it has helped anyone but it was helping me.
I am now going to go and get ready for camera club and I feel so much better already