I am beginning to think that my chest is never going to be clear again and that I won’t ever make 5 minutes without coughing. I tried through the first half of yesterday to take things really easy, but it was for nothing as by the time that my naptime came around, I still couldn’t sleep. By the evening, well my entire body was rebelling, lack of sleep is never a good look, but a lack of sleep, the need of a shower and a body in pain, is even worse. I still feel like I am carrying a dose of the flu, as that is the closest I can get to describe how I feel on top of everything else. I ache everywhere, from my toes to my neck, every time that I have to stand up there is this overwhelming desire to lie down instead. Even my decision of having a treat of a flat bread last night turned out to be a bad idea, yes, I really enjoyed the taste and everything about it, but halfway through, it became a struggle. It’s odd how you can live so many years, but still not listen to your own body over one simple thing, when it tells you, your full. The last quarter was actually a struggle to push in, but push I did and quickly wished I hadn’t. I guess it also shows just how little food my body wants to accept, less than one portion of bread, is nothing. Finding myself at a point where food is more an annoyance than a joy is still alien to me, but it is something I have lived with for so many years, that in an odd way, I am used to it. I am no different from anyone else out there, hand me a good restaurant menu and I will read it salivating all the way, but put those foods in front of me and far too quickly, I can’t eat anymore. Over the years, my mind has caught up with this and I don’t order or buy anything that I know won’t be eaten by me or Adam, if I fail, but it doesn’t stop me from wanting to be free to eat what I want as I used to be. The one thing that I can’t get my head around is the fact that they say you need 2000 calories just to keep breathing each day, but I eat way below that normally and I still gain weight. Someone somewhere has got that one wrong and it’s a pain.
My body feels totally exhausted today, I thought it was bad yesterday, but it has notched things up a level even though I think I slept well. I just covered my eyes and sat for 20 seconds in the dark, my arm taking the weight or my head and I instantly felt sleep creeping in. My body seems to be almost crying out to me to stop, but if I do, what then. Right the way through since I became housebound, I have done everything that I can to stay in line with the world. The idea of slipping into a lifestyle of being awake all night and sleeping well into the day just doesn’t sit well with me. Last week when I was really ill, I accepted as I had no other choice, that I slept until my body was happy to stay awake. Somehow my routine held, I still was awake during the day for short spells and slept all the way through the night. Despite doing all that I can to be part of the world this last week, I have had every morning this overriding feeling that mornings, well they should now be part of the night. Every alarm that has sounded has been a shock to my soul. Getting up has been a struggle and the desire to lie back down and sleep immense. I keep telling myself that it is just the tail end of this exacerbation, but I am expecting it to work like a bug and I just don’t know if that is the truth. As always, the online sites tell you about how they start, how they feel and what to do, but not one tells you how long it lasts, how quickly you should recover or any of the questions that are still running around in my head. Just as with my food, I don’t want to throw out the balance that I have maintained for so long, but right now, I don’t know how to maintain it either.
It would be so easy to just give into both these things, to say to hell with it and to sleep and eat whenever the urge takes me, but I honestly don’t think it is sensible. Everything from the last 30 years of my life has told me that routine is the one thing that keeps me going. If I am honest, I am scared of letting it go, even if I were to time cap it as that is one of the answers I have considered. Part of me says that I should put a two-week goal point and to just do what my body wants until then, then to worry about the routine. There is also an even bigger part of me that finds that totally terrifying. Maintaining my health has been a long slow process of working out what keeps me at my best. It has taken years of trial and error and every error has been pretty much the same, followed by a crash. I honestly fear that if I were to give into what my COPD is saying to me right now, that the result will be a PRMS crash. Which is why I said yesterday that I wish I had a dedicated person to deal with it all, I would be more willing to give change a chance, if I knew I had the backup. Until the last couple of weeks, my COPD has been a secondary condition, something that was there but didn’t really have the impact behind it that my PRMS had. On the whole, I ignored it and I thought it was ignoring me. I did daily what I knew worked for the condition that I believed was the biggy. I know that the specialist had thrown my diaphragm spasm into my COPD, but we were agreed that they belonged on the PRMS stack. Clearly this is the reason that I have been thrown so hard by the fact that my COPD has the power to take over my life like this. I also don’t now know what I should be doing, trying to balance and protect myself is always my first order, but how do you balance two things so different and keep both happy.
Two days ago I thought I was really getting better, I actually had a few hours of feeling good. Now, well after yesterday and how I feel today, I don’t have the slightest idea what to do but the one thing I do know is I am still not well. If I could split the two conditions as I have in the past, I would, but now I am not totally sure or not if everything outside of the cough, might actually be a PRMS kickback, a mini crash if you like. The overpowering fatigue and the pain could clearly point to that, but it also fits equally with a COPD exacerbation. This is an awakening to me, I am suddenly caught in the midst of a world that I don’t know, that I can’t out wit, preempt or even get my head around and I don’t like it.
Read my blog from 2 years ago today – 27/06/13 – And all over a Peach
I have just enjoyed a lovely summertime breakfast which included Peaches and Nectarines, well one of each, just two days ago I was cursing ASDA for there sending me so many, I had ordered both, but they sent even more as subs. There now being not just a bowl full but a sizable mountain means I can eat as many as, whenever I feel like it, even……..