I guess that I have been feeling a bit down about things recently. I do feel tethered sometimes and it is kind of a constant physical reminder of my illness that I have to carry around my bottle in a bag. At first I had the novelty of "Yay! I can breathe again!!" But that has worn off really quickly and in a way it kind of makes me think "Yay, now I can breathe, can I ditch this thing now?!" Which leads me to try and do things that are probably not clever (things like walking around without my cannula on) and as a result I then get annoyed at myself for getting so out of breath! I think the one thing I am going to have to accept now is that I am on oxygen and I need to use it. As I get older, I will probably need more and more, but I can cross that bridge later. For now, I try and stick to using as little as possible (my usual flow is 2l but have been advised to go up to 4l when walking around on bad days, and those bad days do happen) and try and keep myself moving.
It can be tough to accept when you have limitations. Especially when you never really used to have them. I wasn't born with my conditions as bad as they are and they only got worse due to certain circumstances, living in a place where poor hygiene was the order of the day and other things that made it get worse. Perhaps had I not gotten the pneumonia I had when I was 21 (the first one that was in both lungs and on that one night almost killed me) then maybe I would have been better now. I could pick the past apart for hours and point out where things went wrong, but what would it change? Would scrutinising the past obsessively make my life any different or any better? Not really. If anything it would make me more angry that this whole thing happened in the first place. I am trying to take a more pragmatic look on things and instead of thinking "What if...." focusing on "What is."
One simple joy I had forgotten about was sitting at a table and having a proper "sit down" meal with my friends. Sure, we go to the pasty shop or Subway, but there really is something different about the group of us going to a proper restaurant where everyone is dressed nicely and sitting around a table and talking animatedly over a meal. It was really nice because we didn't have the usual distractions, (the food was absolutely delicious!) and we all managed to sit around and just talk about everything and anything. I love going out with people and having those kind of interactions because its the one thing I really miss. I miss going out with friends for a drink, walking around Hanley with Cat and having a drink and lunch at "Spoons". It is one thing that being ill has taken from me and now whenever I do go out, I have to plan everything out and plan medication around everything.
Everything is done in 4 hour chunks as every 4 hours I have nebulisers and pain medication. Around 5 is my second dose of "3 times a day" meds and I tend to do my last nebs and meds around 11pm when I go to sleep. It is a kind of routine and it is important to keep up with it, no matter how much that can interrupt with having a "normal" life. The fact is, without a lot of these meds, I would have died a long time ago and I can't afford to get lazy or complacent about it, even if it is annoying or hard work. It's just one of those things really and when it's done, it's done. I don't mind having to do things like taking my nebs in public anymore or having to take my morphine. Yes people do sometimes stare. And I have been subjected to some rather unpleasant comments but to be honest, its my condition and I am the one who lives with it day to day so no one else should really be allowed to upset me about it and the only person who can stop them from making me feel that way is me. I know my life, I know what it feels like to struggle for breath and I am the one who manages it day to day.
I suppose "normality" is what you want it to be. For me, I just have to remember to take it easy and accept the help I get from the friends who have been so kind and so generous with their time and patience to come over and help with taking care of me. I think it is hard, especially for people who knew me before all this, to be able to help someone when they're weak or feeling unwell. I am thankful to have supportive people around me because without them, I honestly don't know if I would be here today and I just wish I'd reached out earlier really. I guess I didn't because I was scared of what they would have said or what would have happened. It doesn't really matter now, but I would definitely advise others in similar situations to ask for help. I'm not a victim of an abusive partner anymore. I am a survivor.
I think it is all a matter of perspective and how you see yourself. Some days my tank feels like an anchor, other days, its like a jet-pack that makes me able to go and do things. My chair isn't holding me back, it's pushing me forwards. I believe I survived all of the things that happened for a reason, although I am not sure what that reason is sometimes, and I will carry on doing what I can to keep going and keep on living.
4 years ago