I can’t tell you how happy I was that it was Friday. It had been an awfully long week. In 8 hours I would be travelling home to a comfortable chair, my own bed and surrounded by my family catching up on tv (who knew the little things could make such a difference)
We had 2 sessions of Psychology where we mainly focused on how our thoughts and feelings can affect us during times of stress. By creating separation from these thoughts and feelings and acknowledging them rather than challenging you can diffuse the impact that they have on you. A phrase such as “I can’t do this” has more of an impact than if you were to diffuse the thought “I’m having the thought that I can’t do this”. You can also do this by repeating a word until it loses its power. We also did a recap of all of the things we had learnt throughout the week.
During our occupational therapy, we focused on sleep, something that most of us struggle with. We learnt about the different stages of sleep from REM (rapid eye movement – 1st stage) to deep sleep at stage 4. I asked why some people with chronic conditions can sleep anywhere from 4 – 10 hours and still wake up feeling like they haven’t slept at all. He had no idea, surprise surprise! (Fancy running a pain program and not knowing the ins and outs of pain and sleep issues related to pain. Clearly, I was asking too much). Anyway, 1 cycle of sleep tends to last for 90 minutes and a full good nights sleep will include 4 of these cycles. It is supposedly quite normal to wake up a few times during the night and you will often not be aware of this. We were advised to avoid napping during the day as this can mess with our body clock but, what he failed to understand is that some of us are so tired by the middle of the day that staying awake is very difficult. Also if we struggle to sleep at night with no explanation as to why then what could possibly be the alternative. With and without sleep we struggle with fatigue so why not get some sleep when you can.
Physiotherapy consisted of being free to use the facilities and to exercise as much as we wanted to. Their ‘equipment’ included an exercise bike, table tennis, basketball net, tennis rackets, exercise balls and a few other bits and pieces. I spent some time outside reliving my netball days and also played some table tennis. The physiotherapist pointed out that we were doing so well but, what she doesn’t understand is that it is not always the task that is the issue but, the pain and fatigue that follows. Exercise is all well and good but, when it knocks you out and causes increased pain in even more areas of your body then the positives do not outweigh the negatives.
All in all, I am sad to say that this week has been pretty disappointing. There is a clear lack of knowledge when it comes to helping people with chronic pain. Fibromyalgia causes musculoskeletal pain and no matter how you think about the pain it will still be there. No amount of thinking differently or pretending you are a bus driver will make it go away. I am dreading next week as there is only so long I can listen to them portray a deep misunderstanding for the condition.
Wish me luck 🙂