After my last post a few people got in touch and congratulated me on my honesty. Personally speaking I don't think I was any more honest than any other post I have made, just that I let people in a little more on how hard it's actually been for me while my body slowly breaks down. So maybe I have been dishonest by virtue of the omission of certain things. This has always been my way though; I always filter out news from my assorted consultations and tell people what I think they need to know. This differs for everyone as some can handle all the gory details whilst others just want a broader picture, all of which are fine. I'm going to be a bit more honest today again though and talk about my last trip to the Beatson to see my main consultant. I'll get to that later.
Today is Cinco de Mayo, a celebration of something or other in the Spanish speaking world that I don't know anything about. For me the date holds great significance though as it is the day that I walked into a hospital in Liverpool complaining of feeling not quite right. 4 years later and everything has changed. Trying to take stock of just how much it has changed is enough to make your head spin so I'm not going to revel in that too much, except to take note of the fact that 4 years is a sizeable chink out of anybody's life and that is fundamentally quite depressing. What a waste. I had so much to offer at that time as a teacher and lecturer at the local college and I've since spent the bulk of my time staring at the same four walls.
Anyway, on to my consultation with Grant, one of the consultants who's been with me for the 12 years or so since my bone marrow transplant. I had a talk with him about how even though I have put on a healthy amount of weight and am infection free I still feel that I getting weaker on the respiratory front. I feel like over these four years my breathing has got steadily worse and it's an irreversible problem so I feel weaker. He put his hands up and said 'We all know that but we're doing everything we can to, if not stop, slow down the breakdown of your lungs'. Unfortunately any damage from any tiny infection just leads to a decrease in my lung function because my body can't repair itself correctly so gradually over the four years my breathing has got a bit weaker. We then got on to talking about the permanent pain in my muscles and joints. This is actually related to my poor lung function because, and again I quote Grant 'The less you do, the less you can do'. Now while that sounds like a rebuke it isn't, it was merely an acknowledgement that I can't do the exercise to improve my muscle form simply because the flip side of what he said is also true, the less you can do, the less you do. This leads to a vicious circle scenario where you can't exercise so you lose muscle and because you lose muscle you can't exercise. This is where I find myself and it's all down to my lungs not working. The less they do, the less they can do.
I also had a chat with him about the fact that like a baby or an old man, I seem to need a mid afternoon nap every single day now and he simply said that is just another thing I'll have to deal with. My body is basically shutting down because it needs the rest so I've to take it wherever I can get it and not to worry about it.
Now is where the honesty comes in. I am in pretty much constant pain because of the muscle wastage. It has led to pain not only in the muscles but also in the joints as some joints (the patella for example) need muscle either side of them to stop bone grinding against bone or cartilage. I take painkillers and muscle relaxants to help but they don't totally eradicate the pain and I often find myself counting down the minutes till I can take another dose to ease the pain and discomfort. There is of course the option of taking stronger pain medication but I believe my brain is in enough of a state of fuzziness as it is without adding to it with serious pain medication so I have to just grin and bear it with the pain. I thought it was about time I shared it with you that I am actually in pain as well as struggling to breathe. For some time I've also planned for when people are coming to visit so I take a dose of painkillers just before they arrive and they don't see how much discomfort I can actually be in. I always want people to see me at the best I can possibly put forward partly due to my own vanity, but it's not just that. It's really stupid I know but I always try to make visits from people as mildly traumatic as is possible for their sake. I know deep down that people know my health is in a terribly perilous state so this facade is probably unnecessary for them but I'll keep doing it because it makes me feel more comfortable both physically and mentally. It's good to have my mental faculties about me when people visit, although I do find myself apologising a lot as sometimes my mind can just go blank and I'll totally lose my point, sometimes midway through a sentence. If these blog posts come across as eloquent at all it's because I've taken very great care over writing them and have gone over them a lot before hitting the publish button. I'm nowhere near as eloquent in a normal conversation I have to admit.
On the topic of this blog, it has just had its 10,000th view which is pretty mindblowing. That's a lot of people reading my musings. If anyone has taken anything at all from it then I would be very pleased indeed but like I say at the top it's primarily for me to ramble on and it's been great for that. Here's to another 10,000.
