…inspite of CRPS & fibromyalgia…

So, what’s this all about? Well, as you may know by now, I have CRPS and Fibromyalgia. As you may also know, I’m training to do a series of events this year using my normal everyday wheelchair, including the London marathon. I get lots of questions around the subject of how I manage to do all of the training for this and keep on with my other stuff. Some of you may know that I’m trying to be a writer, and am now going through the 4th rewrite of my novel, following an amazing manuscript assessment from Jericho writers. I am also a part time wildlife artist, with work in a few galleries. So, spinning a few plates!

So how do you keep going when illness, and pain is constantly slamming doors in your face, telling you to stop right there, and sit down? I wish I had an easy fix to tell you. I am very stubborn. I get more stressed by self perceived failure, than pain and suffering. Sounds stupid, doesn’t it? I suspect I’m not the only person who feels this way. I suspect most people are the same. The fear of failure is such a powerful force. Don’t her me wrong, I am forced on a fairly regular basis to stop. I literally have no choice sometimes. When crps flares come along, believe me, anyone with it will agree, you can’t do anything else, other than roll about in a trance like state of agonising pain. So you kind of, have to stop then. Also, when the fibromyalgia decided to rear its ugly head, and bring a barrage of lovely symptoms, which I can only describe as, exhaustion to a level of virtual catatonia, extreme flu, and migranes… all at once. When this comes, again you have to stop. I’ve found that the only way to get through is to listen to your body on a daily basis, and do what you can, when you can.

Take today for example. Yesterday, pictured above I was out training… Went to bed last night at a respectable 9:30pm. Then was awake at 3am in pain. I had to get up, and smother myself in bean bags, take my alloted amount of Oramorph, and wait for it to go back to its usual level. So I sat on the sofa, with a decaff coffee, watching Britain’s most evil killers (very interesting viewing at 3am!!). I sat and waited and waited. Eventually at 6am I was able to get a bit of sleep, but was up at 6:30am, as my body told my my usual medication was due! (Amazing how it likes to do that!). So my plan today of wheeling a 10k, and getting on with my character revision for my novel, has gone out of the window. Spending most of the day attached to the sofa, trying my best not to waste the time, when I need to be the most active and allert.

So the answer I have, is to listen to your body and not push it. If it’s telling you to stop, often you have no choice in the matter, so do… Don’t fight it, just take it as it is… Everything is a marathon, not a sprint, so use the off days as best you can, and try not to let them get you down. It is difficult. I struggle with them, but I’m learning all the time, the same as everyone else with these conditions.