I slept like the dead last night, it was one of those nights where someone switched of life for me and restarted it in what felt like seconds. Nights like that have been so rare lately that I felt it needed a full mention, just so I don’t forget that they do exist. Waking up in pain several times each night has been my normality for the first half of this year, solid sleep was becoming a distance memory. The pain and the discomfort are still there, but after going to the loo now three times in just a few days, I actually do feel a difference in the pressure sensation. It’s no longer like being 9 months pregnant and about to explode, maybe back to about 7 months, that point when in your first pregnancy when the fact that you are going to get even bigger, seems like some kind of sick joke. Unfortunately, everything feels to be at a stand still again, but I suppose the idea that it could continue as a daily event so soon is possibly still a dream just now. I did make an attempt yesterday to take the Psyllium in a vanilla milkshake, but it just didn’t work, so I will be sticking to my bread and pancakes for now. I am very aware though that I will need to come up with a few more recipes as time goes on.
I managed to hurt myself a couple of nights ago, it’s one of those silly little things that because it is so silly and it is so little, that it just drives you mad. All my life I have had the bad habit of breathing through my mouth when I am asleep, Adam insists that it is just as annoying as snoring as according to him, on a bad night I sound like Darth Vader. I always try to breath through my nose as I drift off in a vain hope that I might just continue to once I am asleep. The same thing always happens, slowly my mouth opens. I am sure I must have done this in the past, but it seems to happen to me at least once a week recently, just as I am dropping off, my jaw snaps shut. I don’t need anyone to tell me that it is a sudden nerve message, but there is a painful danger in it and one that occasionally happens, my jaw snaps shut on the edge of my tongue. Just like biting your tongue, it hurts like hell. Trying to go to sleep with your tongue sitting inside my tooth line is just as unsuccessful as try to keep my mouth shut. Concentrating that much alone is enough to stop me from sleeping, it really is a loose, loose situation. Catching it once is bad enough, but when I do it again in the next couple of days then my tongue unilaterally takes precautions and swells up. It’s not the brightest protection as it means I then do bite it during the day and if my jaw snaps that night, well the result is obvious.
There is one really odd thing that I have noticed over the years, it doesn’t matter how much pain your body can produce, do something small and silly, even as small as a paper cut and you know about it. I don’t know why, other than it feels logical, but if you live with high pain levels and your body is full of painkillers, surely you shouldn’t feel those silly little things or at the worst just notice them slightly. Trust me, that point of logic just doesn’t work. I have almost driven myself mad over the years trying to work that one out and the closest I can get is that our bodies are far more intelligent that we realise. This is purely a guess, but one that to me make sense. Pain is there primarily as a way of our body saying something is wrong and you have to do something about it. Shock pain, like the second that I bite my tongue, is a different pain, it is a pain that is on the emergency level and because it is sent out on a different system if you like. Shock pain is exactly that, an instant pain that warns us not to do something, even if it’s not our fault and our body did it to us. Because it is on a separate messaging system the blunting by painkillers is just that blunting, not relief, self-preservation says we have to be aware and our bodies hold that as the primary rule. I know from experience that I should be feeling pain right now from a swollen tongue, I’m not, the pain relief is working as it’s a different type of message. If I were to bite it again, which I’m not intending to, but I know that without a doubt for a few seconds, I would know.
Regular readers will have worked out that I am a love of medical programs, be it a soap, a drama or a documentary. What I have always loved is in the soaps and dramas, you will very often see someone being cut out of a car crash with limbs hanging off, being given lower levels of pain relief than I live on daily, but let them wince once and they are immediately given another 5 ml of Morphine, but it is exactly the same dose if they are screaming in pain. Despite all these programmes having medical advisors, there prescribing of pain relief seems to be somewhat odd. Watch a documentary and pain relief is held back as though it is coming directly out of the pocket of the person who is giving it. Unfortunately, that is more often or not the real picture.
My pain levels rose and rose over the years and I worked my way through several different medications before finding one that seems to be still working, although I know I am hitting the point where it needs increasing. I have though decided to wait until I see if anything changes after my six-week test of Psyllium. One of the things that I have learned is to not be scared or put off by what you see or hear from the media. I can still remember the day that I started on Oxycontin, I had this total fear of the stuff thanks to the way it has been demonised. I don’t know what I expected, possibly to be out of it, confused and drugged up in a way that I hate as much as I hate being drunk. Nothing happened, other than my pain reduced, but the doctors reluctance to increase the dose as it slowly stopped working was ridiculous. Then it stopped working almost totally, for some reason my body wasn’t breaking it down. So they changed it and I found myself on straight Morphine Sulfate. The same brick wall appeared again as my pain rose until I saw a consultant who told my doctor I needed more and I was to have it.
It doesn’t matter what you read, what your doctor thinks or what works for others, it is your body and if you are in pain, make sure you push until they get it right for you. Don’t expect miracles or to be totally pain-free, our bodies don’t work that way. But there is a drug out there for everyone and no one should have to spend days in pain, far less their entire lives.
Read my blog from 2 years ago today – 10/06/13 – Is it possible to understand pain?
I am so glad to say that it has clouded over and the temperature although high when I first got up seems to actually be a lot cooler, such a small thing but what a difference from this time last week. To those that don’t have MS I know it is hard to understand how anyone could wish for the sun to……