You would think that after all the years I have spent living with pain, that I would by now be used to it. Well, I am. I’m used to the pain that comes from spasm. I used to the continual ache of muscles, that no longer have the strength, to do beyond the most basic of the acts they were formed to provide. I’m used to neuralgic pain that flies through my body, without limit. I’m even used to the pain that my intestine like to cause continually when your talking of the endless ache, or even those sudden breathtaking moments, a pain simply caused by internal movement. Even the lock downs that take my breath or limits the size of each one, but somehow, this time, is different. This is no longer everyday pain, but it is now every day pain, pain without a break, or a rest, a pain that giving me no peace.

I am getting so fed up with this pain. Despite everything that I have done, everything that I have tried, and yes, going to the loo daily, I am still in pain and one that is for some reason, getting sharper and stronger. Even last night when I woke to go for a pee, the second I moved, the worst of the pain came straight back. I was up for less than ten minutes, and by the time I returned to my bed, every second of my rest had been undone, as even the unexplainable sharp pain I have in my side, that goes deep into my lung, was there. Normally, it doesn’t appear until I have been up for several hours, but not today. Probably, because I was so aware of all of it, I returned to only a light sleep for the remaining hour and a half, so now, I’m tired as well. My abdomen no longer feels like it is going to explode. The furosemide is doing it job and removing the excess fluid from my tissues, so yes, my stomach is still flatter and the pressure is less, but the pain is worse. It’s almost as though, that stored fluid, was acting like cotton wool, dampening my perception of what was really going on.

It is all too easy to acquire an attitude of, pain is pain. Every day that you live with it can become, just another day. In fact, in many ways, you have to. If you spent your time reacting to and being worried by, every pain that you felt, you would literally go mad. PRMS, and I expect, many other chronic illnesses, produces pain. Just as I said yesterday, that attitude of “I’m fine” to my general overall health, well it’s just the same with pain, normally “it’s just there”. Then occasionally along comes a new set of pains, ones that don’t belong, ones that don’t quite fit the norm. So what do you do, when it’s more than “just there”. Well, you do all the things you’ve learned to do. You take those painkillers, the ones your doctors tell you will help. You do every form of relaxation that you know of, and you tell yourself, “it’s just there”. Of all of them, oddly, the final, is the one that calms your mind the most. For a person who hates liars, I have over the years become quite proficient at them, as I seem to have also learned to believe them, at times.

I have never asked one, but I bet, doctors hate our pain just as much as we do. In a “normal person”, pain is a sign that something is wrong. In us, it’s a sign that we’re still alive. I may feel useless against this pain, but I’m sure my doctor, feels even more so. Painkillers don’t kill pain, at best, they dampen it. They bring it down to a level where we can carry on, get on with our lives, and tell ourselves more lies. Worse still, we tell our Doctors the same lies. I’ve heard myself doing it, letting the words, “I’m fine” or the equivalent of “it’s there”, rather than telling him the full truth. Why do we do it? Why do we say, that it’s better, when in fact, the better is tiny, and what we wanted was huge? If I have done it, then I can only guess that other have too, and we then wonder, why the drugs we have, don’t work as well as we’ed like?

No matter what I have done, it is now a full week since this pain changed, stepped up, whatever you want to call it. What was once an ache, now has sharp corners and because of their position, all I have to do is move, and they tell me they are there. Is it any surprise that I am fed up with it? That today, just like yesterday and the day before, all I want is peace. I’m fed up and I’m feeling useless, and I’m not sure which is worse. I haven’t known pain like this or as persistent since I was giving birth to my children. Which is, in fact, a rather fitting description of it. Just like childbirth, the worst of the pain comes in waves, but unlike childbirth, when a wave hits, it’s there for several minutes, anything up to fifteen. Also unlike childbirth, when one of those waves hit, the pain radiates out and can reach from my shoulders down into the tops of my thighs. I quite honestly, feel as though I have been in labor for over a week now and with no sign of it giving up. The mornings do seem to be less intense, but as the day goes on, it just gets worse and worse. By night time, I honestly don’t know what to do with myself. Lying down, helps, and if it wasn’t for my inbuilt off switch, I don’t know what I would do. Sleep is my glorious escape. I honestly don’t know how I do it, I wish I did, but no matter what, I go to sleep and I stay there until my bladder can’t stand it anymore.

I spoke to Adam last night about my idea for the chart, and he agrees, as it will only take seconds, that going forward, it is a good idea. So today, I have made my first entries. We decided that just doing it once a day, is all that is required, just enough to give a noted point. I have, though, changed my mind about the point in the day that I am going to do this. Yesterday, I thought that the point in the morning when I take my meds might be best, but when I take my meds, they include all my inhalers and they are going to give a slightly warped result. So, I have plumped for midday. It will fit well with everything that I do online, and isn’t going to bit into anything, and shouldn’t be affected by my drugs.

Please read my blog from 2 years ago today – 26/02/2014 – Don’t talk to me

I know this is going to sound contrived but it’s not, I still didn’t quite manage that one job I had lined up for yesterday, a shower. As all to often happens the day moved on and suddenly it was too late, too late because there wasn’t enough time left for my hair to dry before I once again had to put my head……