Last Sunday we went to my mums for a family barbecue, I sat in a comfy garden recliner and stayed there from 12.30 to about 7.30 and it was like being normal again. Okay so I had to take a dose or two of Oramorph to keep going but it was so nice to be able to socialise and be out for the afternoon, I actually survived longer than I thought and I would have sat there longer but my wife knew what the payback would be like and so she called time. Then when I tried to get out the chair and back into my wheelchair, I knew how much payback was to come.
On Monday I expected a flare up but it didn’t happen and that’s the way it goes sometimes, it can be the next day or the day after that and so Tuesday was the start of the flare up but not horrendous until that night. Last night I couldn’t sleep, I took several doses of Oramorph during the night but it still didn’t knock the pain back to a bearable level.
Today is not a good day, I’m trying to stay happy and not snap at those around me because I know how unfair it is, but sometimes when the pain is silly high it’s difficult to stay happy. I’m laid on the settee and that’s where I will stay until it’s time for bed, well except for getting to the toilet, its always a difficult day when the pain is this high, it makes a long day even worse and its mind numbingly boring and hardly the easy life that many people think it is, I have worked some hard jobs and this is harder than anything I have ever done at work.
So the question is why would I do something that causes a flare up?
Most spoonies (a term for people living with a chronic illness) will make decisions about what they will do and what they won’t, we count our energy in spoons and on most days those precious spoons are depleted early on and on some days like today I have started on zero spoons. You can Google “spoonie” and it will explain why we use spoons to count energy and general health levels.
On Sunday I started with x amount of spoons, getting up and dressed lost me a large amount of spoons and even the car journey to my mums cost me some spoons, even though I was sat in a comfortable chair it was still uncomfortable which cost more spoons and by now I know that I am using the spoons from the next day, conversation and the mental exertion of socialising meant that I was borrowing more and more spoons but the next day I felt sort of okay and so I decided to go and have a wheel around a local shop “The Range”, I knew the neither days would ground me and so I decided to get out whilst I could even though it would add to the payback, my flare up would be worse.
So now I’m paying for that decision and part of my coping mechanism is the fact that I enjoyed myself and so I don’t regret feeling like this, I will ride out this flare up and then decide if I’m willing to go through another flare up for another outing.
A flare up means I’m craving all the wrong food, popcorn, chocolate and cinnamon cereal is at the top of the list, of course my wife will remind me about my attempt to be losing weight but it seems as if my body needs that sugary energy and who am I to object?