And now the good news

I did it, I slept until 8:30 this morning! Well almost, I did wake ten minutes before the alarm sounded but that hardly counts. I have to admit that I did wake as well feeling better than I normally do, but I’m not taking that as having any great meaning as I was just amazed that I had managed to go against my routine of so many years. I know it is going to take me a while to know if this new life is going to make any difference, but I found yesterday really hard. I found myself constantly looking at the clock and constantly telling myself off. Firstly for looking yet again and secondly, because I was telling myself off for being behind schedule every time I looked. Habits have to be the hardest thing to break, especially when they are deep set in not just your mind but your heart and soul, my parents really do have a lot to answer for.

I did wake once during the night, there was a pain in my left side again and I simply had to move. When you can’t roll over any longer, there is no other way of dealing with pain or discomfort. I can’t really change position, at most I can achieve a slight twist on lying on my back by raising my knees to on side, slightly twisting my torso. The rest of me, from my head to my waist remains firmly flat on the mattress. Getting up means that I can spend a few minutes putting pressure over the pain that often helps to break it. I have found when it is in my side that during the night going into the kitchen and putting my arm along the edge of the kitchen worktop, I can then lean into to. If that doesn’t work, well sitting on the perching stool and pushing into it just with my hand often does the trick. That though is something that is slowly getting less and less effective as the strength in my arms slowly disappears. Luckily last night all it took was the act of getting up and walking to the loo for it to ease and finally let go. I really find these spasms in my torso hard to handle. I thought that just like the ones I have had for many years in my limbs, that I would find a way of dealing with them with ease, but it just hasn’t happened. What are you supposed to do when the pain is hiding within your ribcage? Having a bony shell protecting it, really makes it difficult and I don’t think is going to get any easier as time goes on. I have found myself being much more gentle with them in the last couple of weeks. Having that letter from the hospital insisting that I needed calcium tablets as I am deficient, sort of worried me. I already know that I have osteoarthritis, now being told my calcium levels are low, has stopped me from beating myself up, just in case I break something.

The more immobile I get, the more I do worry about how I will deal with pain in the future. Nearly all the techniques I have discovered over the years, all require some degree of movement and strength. I am sure that half the time when I wake up with pain, it has actually been caused by the fact I have been flat on my back for the past x number of hours. I do and can still sleep right through the 11 hours at night without waking, but those nights seem to be getting rarer. This year has taken my health and turned it on its head. Until January, I slept through every night, getting up was a real rarity. Now between the pain in my stomach and my lungs, I am up probably two out of every four nights. I am convinced though that if I could roll over like everyone else in this world, that I wouldn’t wake, I’d just change position. Pain in the night has always been an odd one. I now know for a fact that I have the same pain levels at night as I do during the day. There is something about my body shutting down, that means I don’t normally feel it. When I do, it’s because it has peaked and not even a coma could stop me from feeling it. Right now I can still deal with it, I just get up. But what happens when you can no longer just get out of bed and take a little wonder? When you don’t have the strength left in my legs and arms to apply pressure in whatever way you can now, what do you do then?

It isn’t just the pain at night that worries me. I am sure that the fact that I can’t and don’t move while I am asleep, a total of up to 14 hrs per day, can’t be doing my lungs any good at all. It is one of the things that I will be talking to my consultant about when the appointment comes through. I have been waiting a month so far, so I could have another 3 to wait, but there are now quite a few things that I need to ask. I know there is nothing they can do about my not being able to roll, but when something like that is playing on your mind, you simply have to know the answer. I am a little odd like that, even though there is nothing they can do to help, I would still rather know if it is a danger or not than having it play around in my head. I like to know the truth, both good and bad. I honestly believe that knowing the total truth, helps you move forwards in life. The old-fashioned theory of “What you don’t know can’t hurt you”, is madness and a lie in itself. If you don’t know you have cancer, it will still kill you. I personally believe that if you know exactly what is happening to you, you mentally handle the whole situation much better. To me, that is half the battle, as once you have got your head around it, you find the strength you need to make life bearable, if still unchangeable.

The pain in my side may have woken me last night, but today for some reason the whole left-hand side of my body is driving me nuts. It seems to be going for it big style. I honestly have pain in almost every inch of it, from my toes to right up to just behind my ear, where there is a lightning nerve pain sparking up and across the top of my head every now and then. Even the entirety of my left arm is in a state of fatigue ache, heavy and not really wanting to do anything. One day, someone will be able to say why half of my body is a permanent mess while the other half just echos it when it wants to. The good news is that my right side, clearly doesn’t want to join in. There is always something good to hold onto.

Read my blog from 2 years ago today – 11/07/13 – A case of timing

I have already opened all the windows in the hope that getting the place cool before the cloud burns back that I will be able to have a reasonably cool house for the rest of the day. I had my normal nap yesterday but found myself once again lying down searching not just from some relief of fatigue, but also from the heat. I am guessing that the reason this year has……

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