The last few days almost caught me off my guard. I don't know what it is but for some reason, my asthma has made things so much more difficult and I am really struggling. I think that the heat hasn't helped me at all. But then again when does it ever really help me? Last night was a tough one because I had several "episodes" in the night and poor Jace, who really is wonderful in how he takes it in his stride and doesn't hold it against me in the slightest, had to keep making sure that I was able to breathe and my pain was managed. Even on the days where I actually have trouble understanding it myself.
The problem with chronic pain is that it can be difficult to explain to someone what the difference in an acute pain and a chronic pain is. To me, a chronic pain is like a constant ache, a constant feeling that someone has tightly laced a corset around my entire body. Sometimes even a slight movement in bed can leave me cringing with my back or I go to get something and my elbow dislocates and sends a shooting pain through all my nerves in my arm (old injury that is giving me bother 5+ years after I had the fall). Not to mention the pain left over from my lungs and other problems, I have to take strong medication in order to be comfortable but the price for comfort is being ridiculously sleepy afterwards. I then have the issue with my back which makes my legs weak and my nerves feel like they're being hit constantly from my neck, down to my bottom. You see, along with my small curve and previous fractures to my spine (the worst of which was when I was 10 and was messing around with my brother, imitating wrestling moves, long story short, my back was damaged when I hit the wood on the bedframe. Made worse by my Dad picking me up and making me walk, I spent 6 months trying to walk properly again and when my Mum asked the doctor, we were told that it would only be known as I grew what lasting damage was done but I should have gone to hospital and would have probably needed treatment for it), I have my Spastic Paraplegia to deal with.
HSP (Hereditary Spastic Paraplegia) is something I have had issues with for as long as I can remember. It meant that as a child. I couldn't run around or do things like other kids did. I wasn't very athletic and struggled with things at times, I couldn't even straighten out my legs properly, and I still can't. When I was about 12, we saw a specialist who gave my Mum these exercises where I would lie on my back and she would have to manually lift my legs and hold them there, the pain was often unbearable and I would almost scream the house down. My Nan on my Dad's side of the family had the same problems I have in her legs too, along with eczema and a squint which I inherited as well. It did improve for a while in my late teens when I used to ride bikes everywhere, but nowadays its just an issue that I will have to live with. HSP has no cure and it is degenerative (most people don't experience the worst symptoms until they reach adulthood and the nerves that supply the lower part of the body start to have problems). It does mean that I am reliant on my wheelchair to have any kind of independence.
My wheelchair is the thing that allows me to do whatever I need to do. I would prefer to not have needed one but I think that I did OK. They told my Mum that me ending up in a wheelchair was inevitable but I managed to keep myself out of there until about 4 years ago when I started realising that I was really struggling to move around. My lungs were struggling to cope as well. Since getting my oxygen, I do manage to do things but it does take more out of me. When you only have 30-40% lung function at best, it does feel like you're working extra hard to do the same things that other people do so easily. It sucks, but the thing I am always reminded of is that somehow, I am still here, even if there are days where I feel like giving up. I had a bad day recently, I don't want to get in to it as it was horrible, but I managed to talk it out rather than doing something I would have regretted.
I have those days sometimes where I am questioning myself as to why I keep at this even when it looks pretty bleak and depressing. Those are the days where I am sat there looking at things and I get the dark thoughts, thoughts that I find hard to get away from because they hurt so much. Sometimes I feel like they follow my every move, like some kind of ghost, ready to strike with a nasty comment or thought that will plague me for a while and its awful. I hate this but I have to take medication to slow my thoughts down and calm the manic part of me that wants to run riot. The manic side of me can make me feel like I could take over the world with little more than a pair of pants and a stick and ten minutes later, I feel like the whole world has fallen apart and I can't find a reason not to cry about stuff, but that is the nature of bi-polar disorder and its something that I think people have a hard time in understanding about me. It isn't something I have a lot of control over on my bad days.
I'm fighting and I think that will be something that I will always have to do. Does it scare me? Yes it does sometimes, but I don't have to go it alone because there are always people around to pick me back up again, help me dust myself down and then I can get going. After all, none of the things I have to deal with are more than just setbacks and it really is up to me to not let those temporary setbacks have long term effects.
4 years ago