My arms are dead. Well, clearly not dead as in that I can’t use them at all, but dead when it comes to wanting to push my wheelchair. Ever since I started using my chair, I have had this odd period between 8 pm and 10 am, where they feel like lead. Just like lead, they are heavy and feel like if I try to apply to much pressure, they will bend in all the wrong places. At first, I thought it was just that I was tired at night, that the muscles had simply had enough after having to move me around all day. That was until they started exactly the same thing, in the morning and then around my afternoon nap. It is so extreme at times that I have actually felt the change between awake and dead happening. I had only been laid down for a few seconds when I clearly felt this odd numbness forming at my neck, running across my shoulders and down into my arms, then on into my hands. It was exactly the numbness that makes using my chair so hard. Once it has hold, they are gone until I force them back into action, something that takes about half an hour to fully shake off. The longer I am using my chair, the worse it is getting. It’s only a guess, but I can’t help wondering if I have upset the nerves at the top of my spine, as the way they shut down, points far more to a nerve issue rather than a muscle one. My PRMS forced me into this stupid chair and now, well now it’s working on making it impossible to use.

This morning, they just don’t want to wake up and every time I have to go anywhere, they are so flipping useless that all the effort is having to come from my shoulders and upper body alone. My arms are more like pistons fixed to the wheel rims, rather than assisting in the process of pushing. It isn’t helped by the fact that I woke up today with my right hand feeling like someone had put it in a vice overnight. Holding onto the wheel rim and not letting it slip is hard. I have already today managed to pull several muscles in my right arm, in around my armpit and side of my chest and it’s only 9:30. Some mornings, you just want to crawl back into bed, not because you are tired, but because you simply can’t be bothered with all this shit. I don’t feel like that too often, but today is one of those blue moons that are just that bit bluer than normal.

One of the reoccurring things I have picked up from comments to my blog, right back to the beginning and right up to yesterday, is the opinion of some, that I am extremely hard on myself. On mornings like today, I almost agree with them. There is no reason on this earth, that I can’t just follow that feeling and jump right back into my nice warm bed. Yet here I am, sitting right where I always do, typing and putting myself through pain, that I could quite easily be avoided. Taking my booster, was my preferred option because, a) I’m not going to let some stupid arm, stop me from doing what I do, and b) I’m not going to let some stupid mood, stop me from doing what I do, oh, and c) I’m not going to let some stupid illness, stop me from doing what I do. That’s me, pig-headed about what I do, and who, or what has the right to stop me. Some of you might see that as being hard on myself, but I don’t. I know totally that I push myself, don’t let myself take any setback lying down or even slow me down, but there is a good reason behind all of that. I have made the mistake of letting things get to me in the past and it has never had a happy ending. I learned from my life that if you give in, you might as well give up. It has been the rule that I have lived by all the way through this whole situation. Yes, I do know the difference between, resting, or taking time out and giving up, but I am not going to take that chance.

The worse my health gets, the more I can see just how easy it could be to close my PC down, wheel myself through to the bedroom and climb into bed, for a while, or even forever. I see that as a fast track to death. Almost as bad would be to settle myself on the settee and waste my life away watching TV. Personally, I think far too many people out there who are too willing to just stop. Even worse than that, are the people who turn night into day, give up that connection to the world and let themselves stay up all night and land up sleeping all day. I don’t care what anyone says, if you have the strength to get yourself from one room to another, to sit and watch TV all day long, you have the strength for some sort of activity. It doesn’t matter what you do, but we all need that structure to our lives where we have daily goals to achieve. We have all known someone who has become unemployed and the slowly vanish. They change as time goes on and they haven’t managed to find another job. The more time that passes, the more they vanish, until they are ghosts of their former selves. It is no different with chronic illness. I push myself because I want to live. I set goals, have to do lists and fill every minute of my day because I am not ready to give up on life. It doesn’t matter how ill I feel, how much pain I am in, or how hard it is to get up, if I can do it, I can do everything else, so I do.

To me, chronic illness isn’t an excuse to disconnect from the world. The world may not give a stuff about me, but I still care about it. Mindset is everything. When my son, Jeffery died, I sat on the settee and I disconnected from the world. I sat there for several days and felt as though there wasn’t a single reason to do anything. I don’t remember doing anything, even eating. Then suddenly one day, it was as though I woke up, I realised that I couldn’t sit there forever, I had to live. I went through almost the same process when I was diagnosed with PRMS, but this time, I didn’t slowly rejoin the world, I gave myself one almighty kick up the backside because no one had died. I was still alive, all that had changed was that someone had hung a new title around my neck, chronically ill, but I wasn’t dead. Unlike Jeffery, I had a life and to be alive meant I had to live. I had to do all the things I always did, for as long as I could, otherwise, what was the point. So yes, I am hard on myself, I hard on myself because I have been given a life and life is hard. I don’t understand why I should just give up, why I should do what is expected by the very same society, that doesn’t give a damn about me. Chronic illness isn’t death, it’s life.

If anyone out there expects me to just say, “my arms hurt too much today to complete my post”, well you’re going to be waiting a long time. If anyone expects me to say, “I’m too tired to do this”, or “I’m not well enough to do that”, again you’ll be waiting, because I don’t intend anytime soon, to be letting go of the life that I have, no matter how painful, or how difficult it gets. Life is for living and life is tough on all of us.

Please read my blog from 2 years ago today – 16/10/2013 – To tired to actually care

I seem to be avoiding today, avoiding it in every way I can. I’m not even sure why I am trying to avoid all the things that I know have to be done, including the shopping which arrived an hour ago. Apart from the freezer goods….