My experience of chronic pain
Nigel is a member of our online community. Today, he shares his experiences of chronic pain.
Four years ago I completed all tasks outstanding at work and said “be back in six weeks”, with nae more limping, groaning and crunching pain of a severely arthritic hip. Indeed I went under the knife a mere 5 days after seeing the consultant for the first time. Needless to say, I had a new hip!
The next day the anaesthetist popped by. Great I said but… I can't feel below my knee. Minutes later, the consultant, registrar and head of physio were at the foot of my bed. Later I found out the sole of my foot had been confronted with a pin to see if I was fibbing.
Fast forward a few weeks and I still had little feeling except my toes and ball of foot. Place foot on cold floor and yoweeeee it was like pain of frozen foot. I stood on a grain of ice and it felt like a boulder red hot poker.
I had received nerve damage in the operation but oh, the pain. A breath of air felt like a scythe, my foot and leg changed colour and were permanently swollen. In no time I was on a major dose of pills but still in horrendous pain.
I was later referred to a Chronic Pain Clinic. A thorough examination and told I had Chronic Regional Pain Syndrome. Now I had been housebound 90% of time in a dark existence so my response was to shake their hands. I wasn't mad. CRPS is a state where brain remembers an injury and never forgets it in a groundhog day life. How bad? Well take a hammer and whack your funny bone.
Infusions and injections, mirror treatment and desensitization later, still no change. Well, except mental health. From a jokey jester to a snarling recluse. Everyone was wrong and I got lower and lower. Add brain fog from the condition and meds, and I was a pain filled angry massive weight gained lump.
After 3 decades in social care I have formulated, implemented and assessed hundreds of care plans for troubled young people.
Do a care plan for ME.
What did I want? A cure and no more pain, highly unlikely it would happen.
I wanted to be more like me, working and basically a life. This is where the care plan comes in. I was not going to rise from my bed, do a tap dance, go out, drive, go to work. What were the obstructions? Firstly my head and brain fog, forgetting words, like a drug addict. I was talking very serious medication and in pain, so why take them? So first plan reduce meds, but all under medical supervision and a slow reduction. Get my head back and then I could look for ways to work on the pain, first part there is ACCEPTANCE. The pain is not going so I had to find how to work alongside the pain.
Again if I got up and went out to my beloved loch and hill, that's just not happening. I tried to walk around the garden, or up the stairs, finding the best possible way to walk incurring the least level of pain. Most important is the idea of success not failure. Next have a longer walk. Believe me, the dreaded walk around the supermarket was never so celebrated.
As my brain fog dissipated I found easier ways of diversion. On a walk say 100m. I would walk 20m stop look around, it amazing what is right under your nose. Then repeat.
Where am I now?
Brain fog massively reduced, as meds have declined. I still get it sometimes- it's a gift from CRPS. I work 17 hours supporting people to have leisure time in the community. 17 hours is about it as CRPS messes with stamina. It's like I have a battery, fully charge it and good to go but all too quickly, all power goes.
Am I still in pain? Most certainly: on a good day level 4 on pain chart so equal to a bee sting or stubbing toe hard. On a bad day level 8 which apparently equal to childbirth. These days I go into myself, complete what I have to and stare into a deep dark hole waiting for it to subside. More often than not this happens at night so hey, what's uninterrupted sleep?
Okay, ask me how I really am. From point of ACCEPTANCE of this beast of a condition I'm good. I work, I walk short distances. Alas no hill walking so I swapped it for sailing. As I write this next week is my stepson’s (hate that word) wedding. So am I going to dance? Try and stop me.
Can you relate to Nigel’s pain story? Let us know in the comments below!