Pain

One thing I perhaps haven't made clear on this blog so far, is how much pain I live with, and how this so dominates any plans for travel.

I have lived with chronic pain, 24/7, since 1999. It is due to tethered cord syndrome, accompanied by spondylolisthesis (vertebral slippage), underlying invisible spinal and visible foot deformities, acquired Complex Regional Pain Syndrome (CRPS) and erythromelalgia. It takes several forms: nerve pain in back and legs, bone pain in ankles, knees, sacrum and back, and all forms of pain in feet. It is a grumbling type of pain, which flares up regularly into unremitting, uncontrollable-by-drugs, depressing, despairing pain, during which I want to curl up and stay in bed, but can't as I still have a life to lead. I also have the erythromelalgia which is caused by nerve damage in my back, which causes my feet and ankles to swell, with yet more pressurised, pounding-headache type of pain, which is again uncontrollable and incurable.

Since my spinal surgery in 2001 (OMG, nearly 6 years ago!) the chronic pain dominates my life. I can never escape it - as soon as I get up in the morning it is there, as soon as I put a foot to the floor it is there, as soon as I drop to my knees in my house to get around, it is there. People think that just because I work 2 jobs, (mostly) keep a smile on my face, am actually walking, I am "fixed", that the spinal surgery did its job and the pain disappeared. If only.....

I got to the point in 2003 that I felt fit enough that I could do the Race for Life, and indeed I did. No problems, just the expected excruciating ankle pain and muscular weariness, but no long term problems at all.
I bethought it of me to do the same this year, on May 20th. Baaaad idea - I think I have acquired a long-term, permanent, debilitating, nerve-damage injury in my Right leg (the strongest of the two). Why, why, why did I do that stupid race? Why didn't I follow my instincts and not do the bl....dy race? I just pray that 6 years of post-op progress has not been wiped out in 1-second of running in that stupid Race.

This is another reason why I am feeling so down today. The pain from the injury is not getting any better. I tried to hop, skip, & jump across a road today, and nearly collapsed with the pain in my leg, and the fact it didn't have any power and could not support my (little) weight. Even before my surgery, and even when I was deteriorating fast, I could still run - now that is totally gone. I can't run one little bit, which is so depressing. It also makes me feel very vulnerable, as I couldn't get out of danger if danger presents itself on my travels.

I am getting a referral back to my nsg, but what can he do? This is my injury, I can't face the trauma of any more major surgery, and anyway, scar tissue would make things worse and not necessarily cure the problem.

I just hope (ever optimistic when faced with TCS issues and usually disappointed, I might add) that this injury is not as drastic as I am fearing. The CB will be dominated by pain - I don't want anything else to go wrong to spoil the travels.......

Hopefully I will be more up-beat next time. Speak soon