The final day of my steroids and what should be the point when my own body cuts in and takes over. The problem is that I feel identical to yesterday which ended with really a bad nights sleep and a huge desire to just go back to bed and try and sleep some more. For over a week I have been totally wrapped up in this chest infection, everything else seemed to have vanished other than one odd thing. Despite not eating, my bowels have moved every day, getting rid of far more than I could possibly account for from one slice of toast and some milk. The only thing that made any sense was that it was a backlog that was just lying around inside me and coughing bouts were slowly pushing it through me. Every morning I have been going through a bout of pain not long after I woke which was relieved be going to the loo. Then three days ago, I started to have pain hours before anything was in range, as my lungs cleared, my insides were once again taking over on the scale of driving me mad. I didn’t even notice my diaphragm or my intercostal spasms through the worst spell, but slowly they too woke up. The more I cough, the worse it has grown, the less sleep I am getting again and the worse my general overview of my health has become.
For two nights in a row, I have gone to bed and lay there for two hours trying to sleep because of one huge issue, that is so annoying it has had the power to drive me mad. Every single breath that I take goes in with silence, but the process of it leaving is the total opposite, it slowly bubbles and creaks it way through my right lung, from about half way down, bubbling all the way to my throat. Silence doesn’t exist and without it, neither does sleep. I have so little energy that trying to control it and breath shallowly, is the only way I know how to shut up the sound. Low energy levels mean I just don’t have the strength to keep it up for long enough. The more I try the worse the spasms seem to be getting and with my diaphragm locked causing pain right around me, well I’m sure the picture is clear. This is clearly the point where the initial COPD exasperation is leaving and all my everyday issues are fighting their way back in. In a different way, this battle is as bad as the war that’s been going on for the last week. The only really great thing is that my mind is getting clearer and clearer. It’s odd how although my mind is only affected by ongoing fever, a side effect if you like, but it has been my measure of my health. The somewhat important issue of actually breathing hasn’t really bothered me until now. I know that the none smokers out there just won’t get this, but it’s a fact for a life-long heavy smoker, smoking stops you coughing and it slowly relaxes the muscles so you have better control over your lung muscles.
Adam gets angry with me every single cigarette that I light, but it’s the trick that has worked two nights in a row and for most of my life. I knew last night, just as any other night that I have met him in the hallway from his huffing and puffing as we passed each other, he wasn’t happy with me. I guess the longer you live with someone, you eventually don’t even have to have enough light to see them, or any real sound, you just know what is in their heads. I do understand his point of view on this, but he also claims to understand mine, he just can’t help letting his being known at every opportunity. It doesn’t matter what I do any longer, I could never have another cigarette from today on and as we were told two years ago, it’s 50/50 as to whether my COPD or my PRMS will be first to stop me breathing. I can’t actually rule out my PRMS from causing this exasperation. It is highly possible that the infection could have simply started due to my lack of mobility and spending more than 50% of my life stuck on my back. I doubt that even when we see the COPD consultants that they will be any more certain of the cause, seeing them is more about the future.
I have cut my cigs already from over 60 a day, down to about 10 to 15, it depends on a lot of things, the rest is replaced by e-cigs, but they’re not the same. Even the past week hasn’t pulled me down to thinking that stopping smoking is going to change anything. The speed that everything is returning to just how it has been for months, the same spasms, the same pain and the same problems. This last week has been nothing but a rather scary, rather dramatic view of the future, but it hasn’t changed anything else. I am dying, there is no way around that one. If anything, this week has shown me the truth we humans all hide from, no matter how hard we try to say we don’t, we aren’t immortal and we don’t have the slightest control over any of it. Smoke, or don’t smoke, I can’t change it, so I might as well enjoy what is left of it.
Read my blog from 2 years ago today – 23/06/13 – A negative that is really a positive
Adam didn’t change his normal weekend existence and slept for the whole morning, snoring his way through all the TV programs I was watching, waking about an hour before I was ready to sleep my part of the afternoon. Having spoken the night before and then writing it all in my post yesterday, I found myself more settled than I had done since our hospital visit. When we were talking I had been sat as always on the settee and I remember clearly that…..
AMEN !!! IF YOU STOP SMOKING,YOU WILL COUGH MORE, MORE PAIN. THERE IS VERY LITTLE LEFT, THAT BRINGS YOU JOY…SO LIGHT UP.IT’S TOO LATE, TO MAKE A DIFFERENCE. I’M BEING BURIED WITH A PACK OF CIGS AND LIGHTER.
Just wanted to say I’m praying for you each day and that things will start to improve for you after your round of steroids.
Also wanted to say going from 60 cigs to 10-15 a day is huge!Although I don’t smoke as a nurse I took care of many COPD patients and I realize how hard it is to quit.
Hoping your day/night is somewhat easier for you in all aspects!
Hugs from Connie in Reno NV