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 in to much pain. Adam and I have always lived our weekends to our own personal clocks, Adam is very much a night person but I am the total opposite. Weekdays we had planned that we would get up half an hour early and then be able to do them before he went to work, good plan but as I normally find myself sitting here shouting at Adam to wake up and go to work, it wasn’t the best plan. Two or three days in and it was just not happening. Adam comes home at lunch time most days unless it is raining, so lunchtime exercises are a bad plan for anyone living in Scotland. OK it’s easy now, but when the winter comes, it’s not going to happen. So this leaves the evenings, simple yes but likely to happen no, one or other of us will be too tired that is a given. It isn’t as thought I can do these exercises myself, as they are more about Adam manipulating my body, I do very little other than sit there with my arms crossed or holding myself in a position as he pushes my body further. Although we are clearly here together all weekend long, it is actually the truth that we see no more and sometimes less of each other on Saturdays and Sundays, as one or the other of us are always asleep through out the night and day. Saturdays nights we normally spend together but Sunday nights Adam is busy ironing shirts, washing the glasses or doing the housework, time together with neither of us busy doing something comes down to minutes if that. It is always easy for doctors to say just do this it will take about 15 or 20 minutes, but then they are not living our lives. It is as daft as when I was once sent home from hospital being told to lift nothing heavier than a teacup for the next 6 weeks, I had two children under the age of 6.
The real world and the world that doctors think we all live in have little to no real comparison. Trying to do what they ask and to fit in what they say is needed for our recovery, well the words are easy but the actions are anything but. If Adam wasn’t working and we some how had his wages to allow that to happen, well yes, all we would have to do is all the exercises I have had recommended to us over the years. Spending time just massaging my legs to help with my circulation or working on my core stability and chest muscles, would all be done with easy and with time to spare. This is the real world and the real world makes all these things difficult on the good side, on the bad, impossible. I guess as time goes on it will be a growing problem for us and one we will have to find a way round, but it isn’t just us that will have these problems, with a growing aging population all in need of palliative care, leaves a rather bleak future, especially for those who live alone.
This morning I’m tired, so terribly tired. No matter what I have done to keep this place cool, the power of the sun has beaten me. At first yesterday went well but as the day turned into evening I gradually was reduced to a reasonably good imitation of a puddle. The hotter I got the more difficult it was to find comfort and sitting was doing nothing of any value, regardless of the positions I tried. Just before Eastenders started I was suddenly grabbed by a pain I have had many many times before, low in the right hand side of my pelvic was grabbed, squeezed and twisted. If this had been the first time I would have jumped to the conclusion that I was having and appendicitis, but there was one check required before calling an ambulance, go to the loo. Getting to the bathroom was extremely painful, every step caused further pain and as I walked I tried my best to find the exact point with my fingers, searching so I could dig my fingers deeply into the source, a plan that often I find helps. I tried but I just couldn’t get to it, I just had to take the next step and then the one after, thankful that our flat is so small. Emptying my bladder was excruciating, I was doubled up, then shot to an upright position and back to being doubled again, all I could do was breath through the pain and hope. Not gone but decreasing by the second I eventually headed back to my seat, hunched forward to where I could sit with a degree of comfort and glad Adam was half a sleep, therefore unlikely to question what was wrong with me. Nothing was wrong with me, this was simply another part of my MS, one that I could easily have embarrassed myself over and over again with, I will bet many have dialed 999! Oh and before any of you ask, no I haven’t started using my catheters so yes this is totally 100% my fault, but that doesn’t help, in fact it makes it worse, I could have avoided it. Many times over the rest of the evening I told myself in my mind that I should head off to bed, but still I sat there, right through to 9pm, a really late night for me, but I was glad to be sat there that late. So right now wishing I was asleep, sunshine or not I guess that I will still be tired as I didn’t get more than 11hrs last night.
I managed not to speak to my doctor but his partner as he is on holiday right now, but she is happy to supply me with an update on my conditions so that I can get it and all the other stuff now required to back up my claim for benefits. I wasn’t sure when the last letter went out, but when she found it she read allowed a small section just to check it was the correct letter. The final line of what she read confirmed to me what a waste of money this new system really is, he had said simply that “Pamela Sutherland will never be able to work again”. Totally straight and to the point yet here they are asking for the information they already have, I guess it is going to be an ongoing annoyance, every few years one of these letters will arrive and will need to be completed again and again. You would think that they would have a setting on their system that means people like me will not have to keep doing this, not just because it serves no purpose but it would also save money for them.
I asked her about the ridge on my toe nail and she said with my medical history it was expected, as it is a sign that my body has had an acute episode or trauma, of some sort. Because they know that I have COPD before I noticed it, is actually the explanation, they normally appear when someone has a heart attack or acute breathing problems. Although explained for me, I guess it is one of those things for anyone with deteriorating health should may be keep an eye on, it may well be a sign of something you hadn’t thought of.