Back at day one

I actually had a lie in this morning. Adam is at college today and, therefore, leaves the house and hour later. When the alarm sounded at 7:30 I found it incredibly easy to just shut my eyes again and drift off. As always my body decided to interrupt something good and I had to get up to go the loo. We have dual alarm and I am thinking about asking Adam to set the second currently unused setting to 8:30, that way we can just switch between the two as required and I could have a lie in at the weekends. I don’t have the slightest doubt that if I hadn’t been woken to switch off the alarm, I would have happily slept on. I can’t actually believe that I am even thinking of such a thing, as life has been so ridged for so long, it just feels wrong. This taking my routine and chipping the corners off it is a very odd process for me. I think I have lived within my routine for so many years, that it is almost scary to be trying to change it in such a big way. There is a safety within a routine, I have learned what my body does, how it responds to different things and it has brought me a long way. I have held my health at a level that didn’t make life hard, to do that for eight years so successfully, makes any major change seem terrifying. Eight years with nothing more than gentle changes but always made because I knew exactly what had to change to improve my health. This time I don’t, I haven’t a clue how my COPD responds to anything because I have being ignoring it. Everything had to work for my PRMS, everything was about keeping it steady, not promoting flares or pushing my body into periods of pain. I had worked out the optimal number of hours that I needed to sleep. I had accepted my 9 pm bedtime and my afternoon nap, as required and more than enough to keep me well. The amount I could do when awake and how to listen to my body daily so that I didn’t upset it. All those messages have changed because there is one overwhelming new fact, my lungs now have to be listened to too.

Even though I started making changes right after I was able to stay up long enough, I was still holding onto the thought that things were going to get better. I am a full month in now, a month where I have gone from not getting enough oxygen to be able to make sense to anyone other than me and with no choice but to sleep continuously, to being far more alive, but still not able to breath as I did. I have had to accept that breathing is rather an important thing. If I can’t breathe, what is happening with my PRMS is irrelevant. I thought at first that if I just trimmed back what I was doing and carried on with what I saw as a normal life, well my health would return to a place where I could be comfortable. It hasn’t worked. I am clearly, even to me, not resting enough or even sleeping enough. I am sat here right now after 11 hours sleep and I am tired and mildly breathless. The worse my air intake the more tired I get. I can use my inhaler as much as I like, but the improvement is minimal. I know that there is still a small chance that my lungs will improve and that I am still in the process of getting better, but my belief in that is diminishing rapidly.

My problem is simple, I am not a person who can sit and do nothing, I need to be doing something, I need like everyone else to be achieving for my own well being. I can’t totally ignore my PRMS, that would be as stupid as trying to ignore my COPD would now. I need to find something that works for all three, me, my PRMS and my COPD. Routine has to be at the core of it, not just because I know it works, but it means I can clearly measure where the pressure points are and what needs more work. My routine is here, it tweaked and pinched into what is a surprisingly flexible routine, yes there is such a thing. What I am finding hard it not clock watch. I have to date measured everything against the day before and the one before that. Instead, I need to measure by the time something takes, rather than starting and end on a set time. It may sound minor but to me it’s major. That one change will allow me to have an extra hour in bed if I want it, or to stop and have a rest if my body is screaming at me. 9 am doesn’t have to be breakfast time, it could be 10 am or even 11. Smoothing out the ridged corners and points when life changes from one activity to another, could just give me the root to getting the improvement in how I feel that I am looking for. So now I am timing how long things take, holding to the order they have always been done, but doing them in conjunction with listening to what all of my body is saying and remembering what I have learned over the years of pampering my PRMS.

It may sound like such a trifling thing, hardly worth thinking about or even writing about. To me, it is huge and it is something I am scared by. I don’t know if my PRMS will like it or make my life hell because of it. The last week I have been in a lot of pain, I have spent some part of every hour aware of every breath I am taking because it takes thought. Getting enough air, without pushing the pain levels because I am using muscles that are already fatigued and already giving me pain. Stepping into the unknown isn’t something I do without some trepidation. I could so easily be stepping off the edge of a cliff, but clearly I hope that I am stepping away from it. If I do nothing, I know now that things will just continue to get worse. I have been pushing myself too hard for too long now. As they say hindsight is a wonderful thing, but I wouldn’t be surprised if my getting ill had a lot to do with the fact that I had been running on empty for weeks. My health has moved into a new phase, a phase where I have to put it first. I want to believe that there is still a chance that things will improve. I know there is still some hope, that somethings can take weeks to recover from fully, but for some reason I don’t really believe that any longer. It almost feels as though I have jumped back in time, that I am back again where I was eight years ago. I feel as though I am floundering around in the dark searching for what just might work and hoping that I am getting it right. I don’t remember now how long it took me to get it right, I just know that it took time. It was a process of trial and error and that trial has just started all over again.

Read my blog from 2 years ago today – 10/07/13 – Physio, good idea, hard to do

We aren’t really doing that well with the physio exercises that we were given to do daily by the hospital. Like almost anything of that nature we did really well for the first week, but it then turned bitty, strangely the weekdays were the easiest it was at first the weekends that it all went really wrong. It isn’t laziness or lack of wanting to do them, it is actually managing them to a time when we are both awake and I am not too tired or………