Recognising the problem

I have an odd feeling about today, I don’t know why but I woke up with it. I can only guess that I had some strange dream just before I woke that has moved with me into my waking hours, but I wish it would go away. I can’t even say for sure what I am expecting to happen, but I know without a doubt that if it does, it won’t be good. I am sure that there is some good reason why we have odd feeling about people and places or even events, but I have never been able to work it out. Yes, if it were fear or something that I could define I would understand, but just the vague, not sure what but not good, what is that about? I know I had another disturbed nights sleep, I have suddenly started putting my legs outside the bed with my feet on the floor. It always wakes me after a while as it hurts my back and upper legs, but it is another thing that I have been able to sort. I actually haven’t done it for a while now but suddenly on Thursday night there I was again and, of course, once I start doing it, I will go on doing so for several nights in a row. I am not sure if it will work or not, but now that we have this kingsize duvet on our bed, I am thinking of tucking the edge under the mattress so that my leg can’t fall as far as the floor. I suppose it is at least worth a try as I have nothing to lose apart from pain.

After my saying with such confidence about how much better my chest was the other day, both yesterday afternoon and this morning, I have been coughing up huge chunks of gunk from nowhere. I almost feel as though I have asked for this, after declaring that I thought I was stuck with this cough and that I had never had a productive smokers cough, here I am with what many would say is both. I guess it is just going to be variable for a while and just like this point last week, I find myself once again feeling that I need to keep an eye on it and a note of what it is doing. I really am finding it hard to accept that it is now over a month since I first found myself getting breathless and with a slight cough, and here I am still living with both at about the level they were at the end of that first week.

Once you get your head around the fact that PRMS has the freedom to play with any nerve and/or muscle in your body it wants to, you learn to live with. The symptoms of PRMS are unmistakable for anything other than a chronic illness, yes easy to apply to the wrong one, but they are all chronic, not every day. The things that my COPD have been doing lately don’t fit into my pattern of what chronic illness does and how it feels. The fact that my PRMS was actually behind the diagnosis of COPD doesn’t help with my perception of what it should and shouldn’t do. Diaphragm and intercostal muscles spasms are clearly caused by my PRMS, but they complicate the picture when it comes to my COPD. Chest infections, coughs, and colds are things that everyone has at some point in their life and we all get better from them. Despite having on my list of chronic conditions both Asthma and Bronchitis, to date bad spells have never lasted more than a couple of weeks. It’s now 5 weeks since I was aware of the first symptoms and here I am nowhere near returning to that balance point. Despite doing all the things, I would to care for a bad chest infection, there are no signs, or changes which would say it is over and normal service is resumed.

I know I have written posts before about the confusion of living with multiple conditions, but I feel that confusion is growing and it isn’t helping me in any way when it comes to caring for all of them. To be honest, I have up to date really rather ignored the individual definitions as the driving force of everything has always proved to be my PRMS. If I did all the right things to keep it happy, then everything else remained happy as well, that balance is changing and I don’t know how to react to it. Living within the boundaries of one illness that has to be pampered and pandered can be hard enough at times, but how do you take into account another condition that is just as dangerous to your wellbeing. Yes, just as I said yesterday, I have to change the pace at which I live, but I feel there is more to it and right now I can’t actually put my finger on it. When I was diagnosed with COPD, I at the time spent a few days thinking through exactly what I had been told. The two facts that I couldn’t ignore or change were that I was dying and had about 10 years to live and the fact that either the COPD or my PRMS could be responsible for ultimately stopping me from breathing again. I think that was the point that I dismissed my COPD as secondary, my PRMS was in the equation and was the thing that was causing all the pain. I did what I think anyone who lives with chronic pain does, intentionally or not, I concentrated on the pain and ignored the rest. That was two years ago, two years ago when I had trouble breathing or had to spend time just taking shallow breaths it was due to my PRMS. Now, if it locks down my diaphragm or intercostal muscles, I also have an internal problem that my lungs are congested and aren’t up to passing the quantity of oxygen my body needs around me. It is now a clear choice, pain or air. Shallow breathing isn’t working any longer. When I shallow breath I am taking in a slow and limited by where the pain point is, acceptable quantity of oxygen. Which was fine when I had most of my lung able to get in on the act, it worked not too badly. Now I know from the number of headaches that I get that that limited quantity is now too small. When awake I can force myself past that pain point if I have to, as oxygen is important, but when I am asleep, well my body seems to not want to accept the pain.

Everything is changing so fast and I admit fully that I am floundering around with no real direction. I have this list of things that have to be worked on, how to breath, how to eat, what to eat, how much sleep, how much relaxation and what is essential. It feels to all be up in the air and I am catching hold of the odd piece as it falls past me, but that’s all I am doing catching them, not fixing them. June 2015 may have felt to me like a lost month, but it really wasn’t, I don’t think any month in the last few years has had such an impact on my life and lifestyle. I can no longer put COPD in the second position in my list, other than for aesthetic appearance, but it’s impact is now equal to my PRMS. That alone is something I didn’t expect to happen this year, but it’s a fact that I have to deal with and I am sure I will, it just seems to be taking me some time to get my head around it. I guess that like everything else in life, the first step to conquering something is to admit it is happening, well I’ve just done that, so I guess I now have to work on step two, accepting it.

Read my blog from 2 years ago today – 4/07/13 – Still waiting

Exhaustion continued to be the overwhelming feeling to the whole of yesterday, but when I went for my afternoon sleep I only snoozed and had stupid dreams about knitting a rug. No, I don’t know either, for a start you don’t knit rugs, I’m sure…….

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