I started WALKING for the first time in 8 years! Well more of a hobble really and only a few steps at a time but NO CRUTCHES.
My new walking achievement lasted for 9 whole weeks before the onset of severe shooting pains ground me to a bit of a halt last night. Every day I was able to walk a few steps, averaging about three minutes a day of full weight bearing/no crutches. I still used my little electric wheelchair but to be able to walk into the kitchen or get up from a chair to fetch something across the room was fantastic.
I have learnt something new in the last few months, something important about CRPS. At the time of my first steps which were taken in hospital, a pain management specialist made the comment to me that CRPS is not a static disease, meaning it can vary in its intensity for many reasons, mostly unknown. So I believe it is not necessarily all doom and gloom and CRPS does not necessarily only go in one direction (downwards), life can at times improve beyond our expectations.
Here is the story of how I found myself doing the ‘impossible’
I have learnt something new in the last few months, something important about CRPS. At the time of my first steps which were taken in hospital, a pain management specialist made the comment to me that CRPS is not a static disease, meaning it can vary in its intensity for many reasons, mostly unknown. So I believe it is not necessarily all doom and gloom and CRPS does not necessarily only go in one direction (downwards), life can at times improve beyond our expectations.
Here is the story of how I found myself doing the ‘impossible’
How did this happen? Well I was in hospital having my 3 monthly 5 day Ketamine infusion and I told my pain management specialist I wanted to see if I could put full weight on my bad foot while the Ketamine was blocking the pain, he assured me I would not break any bones by doing so despite not having walked for over 8 years, so I was determined to give it a go. With the help of the physiotherapist I was slowly guided into getting the foot used to taking some more weight, the muscles and ligaments in the unused foot were incredibly weak and hurt like hell but by day 3 of my infusion when the neuropathic pain relief was 100%, I took my first half a dozen tentative steps –no crutches, just a grab rail along the hospital corridor should I need it. It was amazing! My doctors were amazed, my nurses were excited and I was elated, I had dreamed of doing this for years but had resigned myself that it was unlikely to ever happen.
I was now confronted with all sorts of unknowns; would I be able to keep doing this when I got home? How would I cope when the bad pain returned? Who would I tell and would they realise that this achievement was unlikely to be permanent.
Well I was able to keep walking when I got home, my foot and leg became stronger and the muscle/ligament pain reduced. My CRPS electric shooting pains were all low scale and as the weeks passed I began thinking maybe my CRPS had gone into some sort of remission and I started day dreaming of miracles. I often went for days with no shooting pains and only mild burning pain. My foot still looked red, swollen and had the usual burning pain at night but the electric shooting pains were either very mild or non-existent. So eventually after listening to some sound advice from a few friends I gradually learnt to celebrate my achievement.
Then last night just as I was analysing how to adapt to my new life and the freedoms I had been enjoying, I was literally jolted back into reality; I was nearly asleep, all was quiet in my bad foot or so I thought, then Bang! a jolt of ‘electricity’ shot right into the depths of my foot and turned into a severe throbbing pain only to be followed by a repeat performance at irregular intervals, my pain had returned in full force.
The return of severe pain was not unexpected, just unwelcome, naturally. I plan to get back on track and not give up this walking, I will rest until I have no severe pain for a few days and slowly try to reintroduce full weight bearing again. I am also due for another Ketamine infusion in July if I need it so this will also help get me back on track.
During the last few months I also started training the CRPS affected foot to get used to wearing a sock some of the time and to also sit with the leg in a vertical position, my foot on the ground instead of elevated all the time. Then I started wearing enclosed shoes for part of each day, most days, instead of sandals. At first the foot felt like it was being put in a prison, it is hard to explain but I had to forgo a very strong urge to rip the shoe off and free the foot. I bought the boots with the orange laces because the leather was soft, the lining warm and there was room for my swollen left foot and cushioning insoles, the orange laces were a bonus and the colour orange just happens to be the official colour of CRPS awareness campaigns worldwide.
June 16th 2016
I was now confronted with all sorts of unknowns; would I be able to keep doing this when I got home? How would I cope when the bad pain returned? Who would I tell and would they realise that this achievement was unlikely to be permanent.
Well I was able to keep walking when I got home, my foot and leg became stronger and the muscle/ligament pain reduced. My CRPS electric shooting pains were all low scale and as the weeks passed I began thinking maybe my CRPS had gone into some sort of remission and I started day dreaming of miracles. I often went for days with no shooting pains and only mild burning pain. My foot still looked red, swollen and had the usual burning pain at night but the electric shooting pains were either very mild or non-existent. So eventually after listening to some sound advice from a few friends I gradually learnt to celebrate my achievement.
Then last night just as I was analysing how to adapt to my new life and the freedoms I had been enjoying, I was literally jolted back into reality; I was nearly asleep, all was quiet in my bad foot or so I thought, then Bang! a jolt of ‘electricity’ shot right into the depths of my foot and turned into a severe throbbing pain only to be followed by a repeat performance at irregular intervals, my pain had returned in full force.
The return of severe pain was not unexpected, just unwelcome, naturally. I plan to get back on track and not give up this walking, I will rest until I have no severe pain for a few days and slowly try to reintroduce full weight bearing again. I am also due for another Ketamine infusion in July if I need it so this will also help get me back on track.
During the last few months I also started training the CRPS affected foot to get used to wearing a sock some of the time and to also sit with the leg in a vertical position, my foot on the ground instead of elevated all the time. Then I started wearing enclosed shoes for part of each day, most days, instead of sandals. At first the foot felt like it was being put in a prison, it is hard to explain but I had to forgo a very strong urge to rip the shoe off and free the foot. I bought the boots with the orange laces because the leather was soft, the lining warm and there was room for my swollen left foot and cushioning insoles, the orange laces were a bonus and the colour orange just happens to be the official colour of CRPS awareness campaigns worldwide.
June 16th 2016
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