Life in the dark

I had been lying in bed for no more than 15 minutes when I became aware of the tension in my neck and shoulders. I knew it had been there for a while, as it felt as solid as concrete. Normally I am good at stopping myself occasionally and just letting go of muscle strain, from tension, or just bad posture. I don’t remember when I discovered this trick, I feel as though I have been doing it forever, but it works and just making sure my muscles are as relaxed as possible, seems to reduce the spasms. Putting two and two together that stress makes everything worse add in the tightening muscles for other reasons, and it makes perfect sense. You would think that lying in bed, comfortable and locked off from the outside world would relax me automatically, but I still have to intervene every now and then. Normally as soon as I get into bed, I dropped my shoulders and pushing my hands downwards towards my feet. I then lay them on the mattress by my sides, so that they act like an anchor, preventing my shoulders from rising and tightening again before I am asleep. I suppose it wasn’t really surprising that my muscles needed to be stretched then relaxed throughout my body, it had been a fraught day.

I had spent most of it either in pain or waiting for the next round to start. That thought was an improvement from the day before, I was getting gaps between the severe pains rather than just one long stream of agony. The morning hadn’t been a great deal of fun, then suddenly around midday, I got my first signs that it was breaking slightly. The levels lowered and the constant chasing of pain around my insides, actually stopped for a while. It is so tempting to get over excited about changes like that, but I have learned they are not always good news. Which is where the danger of stress begins. You would think that the being in pain would be the stressful bit, but oddly, it rarely stresses me at all these days. It pisses me off, yes, big style, but stress, not really. The real difficulty when you are in constant pain is trying to not do what come naturally, tightening the muscles around it. That natural cringe and clench motion doesn’t actually do anything, other than invite or trigger more pain. Breathing through and relaxing into it is the correct action, but being human, I don’t always get it right.

I have noticed this before, but yesterday proved it to be true again. As pain starts to settle, I start to stress. I really don’t deal well with that middle phase, when you have true hope that the end is in sight. But you fear that it might throw you straight back any second into the middle of hell. I can deal with hell, purgatory is a far worse place to find yourself. When you are in heaven or hell, you know where you are, in between them, you can go anywhere without notice or warning. The constant background pain is still there, as are the residual aches from the worst point of torture, but there is a peace that you just dread being shattered. Over the next hours the peaks lessened and the levels of all other pain gradually settled. By the time I was in heading to bed for the night, pains required triggering by doing something stupid like moving. If I stayed reasonably still, so did it. It wasn’t actually until I stood up to go to bed that I noticed for the first time that almost every muscle in my legs were tight and difficult to use. It is something that often happens by the end of the day. I frequently find myself more waddling than walking by night time, last night there was an added stiffness, the further I walked the more I noticed that I had allowed my entire body to lock up. I was so relieved by the absence of severe pain but so worried about its return that I had totally ignored my normal routine relaxing sensations. I was carrying a whole day of stress.

I am still trying to find the answer to days like the last few. There has to be a way that when my body runs away with my life, that I can still maintain those things that I know are vital. I get so caught up in the pain and trying to deal with everything that is happening, that I forget to relax, I forget to take care of the small things. It is as though my entire cash of knowledge of how to survive day to day has holes punched in it or at times even deleted completely. My mind is so caught up trying to find answers that I simply get lost in the fog. All I can see and all I feel is what is happening in that second. The bigger picture just isn’t there. Yet I am almost positive that if I could make sure that if I just lived the life I do naturally now every day, it would reduce, if not break the entire thing. I know this is all part of my PRMS. Something triggers a flare or a phase like this and before I know it, every part of me including my brain isn’t working properly. When you lose your mind in a mess of pain, fog and desperation, you lose your ability to live. Worse case scenario, you lose your actual will to live.

I have lost count of the number of occasions where I have ended my day just lying in bed hoping that when I go to sleep, I won’t ever wake up again. It isn’t the pain of depression, it is the pure desperation of just wanting what you are going through to come to an end. For me, these spells are totally tied to my health. That desire appears and disappears exactly in line with the worst my health has thrown at me. I have lived through depression. I have planned over and over how I could kill myself over the years. I have even tried and clearly failed in that quest. All of it has been written about in the past, but this is a very different feeling and getting people to understand and see that is incredibly hard. It is also the reason that I understand the theory that we just need help to get through the worst and life will be good again and we won’t want to die. I get all of that, but I also know the day will come when the phase won’t end and I will be trapped there forever. I don’t believe that anyone would voluntarily want to be trapped there with me, so why should I be trapped there alone? I still believe that that point is a long way off for me, but I can see my future quite clearly. For now they are silent prayers, only thought of when it feels like I can’t take any more and not even sleep will be enough. The fact that it even appears in my mind though is wrong. Not in that I am wrong in feeling that way, but because it clearly shows that there is something wrong in my medical care that means I should ever feel that bad or that desperate.

Today, I have woken with my body more or less for now normal. The pain hasn’t gone. The tightness of my diaphragm hasn’t gone, but they are what I would call “normal”. It’s another word that just like “journey” I hate. What the hell is “normal”? I still don’t feel like myself, I have had to stop over and over again today, just to let my body settle. To mellow out just what being alive does to me. I fear thought that today may not be the end, I spent the first six months of this year, just like this. Up and down day by day, but never totally free of it. The difference today thought is not just the disappearance of the worst of the week, but I am alive, that feeling is back and I like it. I might still be in the dark as to why this all happened and not totally convinced that it’s over, but today, I’m living again.

Please read my blog from 2 years ago today – 20/08/2015 – So ill that madness appears

I feel so much better this morning, not like I could dance down the street or anything, just more what I suppose is normal. I really don’t know what was wrong yesterday, I felt terrible and really wanted……