Pain Management Programme Day 6
My sixth day has been and gone at the Pain Management Programme.
You can catch upon my PMP Days here:- Pain Management Programme
I was writing my day up when I got home, and even though very tired I was getting most of it down, something I have not done the last two days, leaving the writing to the next morning is definitely not a good idea as trying to dredge up all the information quite hard.
Today quite a few were on flare up’s, it is always hard to see someone like this and your heart really goes out to them. On this day too as it happens the idea was to discuss a ‘Flare Up’ programme, either for different types of severity of flare ups, for home, for work etc.
As you will see below, we started off discussing ‘Common thinking traps’ when we are having a flare up. Yesterday we discussed how to communicate to to others about our Chronic Pain and also about our Flare Up’s so that they would firstly understand better and also realize the need for flexibility.
Though chronic pain is very real physically, the mind has such a huge influence over ‘how’ we thinking, interpret and react to things. Learning to manage chronic pain is like learning a new language, it is a whole different way of thinking.
We then went back to our hot cross bun, the ever lasting circle of how the mind affects our physical symptoms, how those affect our mind, our mood, our behaviour, our reactions and as you see from the diagram below it can go every which way and generally utilises every way possible.
At this point we started to discuss our own individual plans. So we went over what happens to each of us during a flare up. For me, I have different kinds, the type that doesn’t stop one’s whole day activities but I have to slow right down. The worst flare ups I have had have set me in bed for weeks on end, thankfully I have only had this 3 times, but the memory does NOT go which is part of the problem and with this the fear of it coming back again. This can hinder one terribly as it effects one’s reactions and brains’ threat level all the time. However on these flare ups, the pain is so awful I cannot move in bed let alone get out, I want to be left alone apart from the basics of human survival which doesn’t include washing!
The next level of flare up is split in to two, the one that will put me in bed, but perhaps for a day or two on and off, cooking is off the agenda, household stuff is off the agenda. I then have to be very mindful of what i do not to exacerbate it.
Now the problem with chronic pain is often we cannot tell when it is going to happen. There are times when there is a uh oh moment I have over done it, but this is not always the case.
We were told to have an agenda, ie a plan, a box with food in, drinks in and whatever else that would make those flare up’s more manageable. This I found a ‘weird’ concept, but obviously there is a reason behind it, which I do get, but the thought of stashing food and drink in my bedroom doesn’t sit well at the moment, apart from chocolate of course!
We then talked about work and this brought up a few contentious issues on how work understands peoples conditions. One girl has been told that if she is sick once more within 5 months she will be disciplined. This disciplinary procedure is for sickness as in having a cold, a tummy bug. This girl does not have this, she has a chronic illness, she has fybro, long term illness, the same rules should not apply and I was quite appalled. The organisation she works in is large, has a good reputation and in my mind should have a better strategy. The nurse at work knows her situation so it is not as if they are in the dark.
There should be a change in procedure and or organisations to support people in helping them manage ‘others’ at work when they come across this situation.
On another instance there is a girl at college who has been disciplined now because she has attended this course. Again this is wrong. We didn’t get the answers necessarily that we wanted, but I am writing to Richmond Aid to see if they have any advice for the others.
We finished the day off with a frank discussion with one of the physios who is temporarily here. I think we were at this point quite disenchanted, maybe it was the energy levels, the pain factors being high today, maybe it is a turning point, you go through that bad bit before it all becomes clear and easier to comprehend.
The chat helped to uplift us as a whole and we continued with our deep muscle relaxation, which I managed better this time. We then went on to ‘Circuit Training’ which I was dreading after last week as this gave me a flare up. This time I left out certain things or did it in a very alternative way and ‘touch wood’ so far I seem to be alright, which in itself is positive.
Feeling extremely tired this morning, totally zapped of energy but still positive about seeing what today brings, what I can learn and bring to the table to help me with my pain.
It will help that I baked some gluten/wheat free & low FODMAP chocolate brownies for the group, let’s hope that perks things up a bit hehe.
That is all for today, Justine xx
© Justine Nagaur
I am thinking this isn’t a good idea to concentrate on what I am thinking. I am thinking “I cannot do this, I hate this, I am frightened, my chest is going to go in to a spasm”, then my stomach starts to feel like it is on fire, my chest starts to tighten up, I am getting hot and sweating and feel like their is no oxygen in the air, I cannot get my breath properly. I am panicking, I want to go and run out of the room, I want to hide in the loo and just cry because I feel pathetic that I cannot do this, yet there are people with walking sticks who are managing better than me. But none of them have sitting issues, I try to justify it to myself.
I then got ready to leave, my son had sent me text messages asking to have friends over. I felt like a bad mum because I didn’t want to come home with a bunch of teenage boys in the house, I had told my son that during this period things were to be quiet and I was angry at him having asked, then felt guilty for being a bad mum. I said no, but dad had already said yes. I got picked up and within a short period of time the flood gates opened, all the stress I had been holding in from the afternoon gushed out, but it felt good to cry to say how ‘shit’ I felt.
It's a lonely place 