I try so hard to be a good patient, take the advice I am given, doing my hours of physio, happy time, exercise but all of the aspects of your life that you are trying to tweak, there is always something that goes by the wayside.
2 days after my birthday at the beginning of June I had a really severe flare again, as bad as Christmas time. Unable to barely move a muscle for the pain. Getting to the toilet was hard enough, changing my clothes and showering just didn’t happen for many of those days. My son of course offered to help me with my clothes but in actual fact I wouldn’t let him closer than 2 metres because the breeze his body made when he walked sent me into more spasms of pain. There was a few hours in this time that I was laying in bed just not moving 1 single muscle because any slight movement was more than I could take. Of course during this time everything stops and I guess this is the frustrating part when you arise from the ashes again, your fitness and weight loss is back to square one. I was feeling like I was achieving some wee little goals before then, lost 5 kgs and managed to get to Hydrotherapy twice a week and the body aches were feeling much better. I had weaned down my drugs to a daily dose of 5mg of Targin along with the Endep I take.
I guess my point is that I find it difficult on a daily basis to to address every aspect of my health everyday for one reason or another. Currently I have let my eating go. A bowl of cornflakes and dinner is just not the right dietry intake so therefore another part of your body complains (bitterly!) and leaves you another thing to try and fix. I guess my point is once you focus on one or two things to work on, there are just so many other things you have to work on at the same time. Diet, (when you never feel hungry), physio, exercise, happy time, meditation, mental thoughts, light housework. This illness makes it so difficult to keep all the balls in the air and I know each one of them is very important along with the “2 steps forward 19 steps back”
Don’t get me wrong, my headspace is in a much better place than 2 weeks and I am so very grateful that I am not feeling that much pain at present – perhaps it’s just the frustration that so many parts of your body are affected by illness and before this I really wouldn’t have been able to comprehend every facet of your life changing. I know my shrinky dink would tell me I am doing a good job doing what I can, when I can. Perhaps it is just my “Old Self” that compares what I could achieve before and the limitations I live with now.