I made a bit of a promise with myself that I would try and write at least once a week/fortnight but in all honesty I now know that when you go through flare ups you are completely absent from you life for that time. You are going through the fridge to throw out all the used by stuff that was in date at the time it was bought and had every intention of using it. But in a flare, days just slip by when you really don’t have much on your mind at all, because you are in so much pain. I try to sleep through as much as I can which is possible when my pain tablets are working but after a few days I quickly become tolerant and those painkillers no longer work at all. This time I had to try and manage a flare with hourly meditations and simple cardmaking work to try and divert my attention. By Saturday night, Mst Shazz away for the night – I was sitting alone on the loungechair, my clothes wringing wet from the sweat that comes with the intense pain. I seriously contemplated an ambulance but because CRPS/RSD is a relatively rare disease if you get the wrong doctor at the ED you will be treated as either a mental patient or a drug addict looking for another hit. I pushed through somehow I have no clue, but at the end of it, when it is all over, I feel fragile and that this bloody disease has just taken another small part of me that I won’t get back. The fog of days in bed, dazed and struggling to “use you words” because your brain shuts down too, living on :”Grab Food” this time it was pouring custard in a carton and hence the reason to chuck out the out of date food.

I have started to see an exercise physiologist and she is great. She will help me with incidental exercise, that means continuing to stretch and do minimal movement when you are in a flare. We worked through an exercise program and currently I try to get to the pool once a week for Hydrotherapy. I normally feel wonderful afterwards, every aching muscle feels stretched. I am aiming to get to the pool twice a week. My physiologist asked if I thought I could go 3 times a week. The old me pipes up “Sure I can”. In reality to get to and from the pool only a short drive away is a massive effort. Getting my swimmers on, packing my nana trolley, dressing stick, tens machine, water, noodle and now there is no carpark so in and out of the gate would take well over 10 mins. It is a good 2 hour round trip which my old self would say is ridiculous how could this take you so long? The reality is something entirely different.

Yes I will aim for more time at the pool most definitely and I know it is important – but when a flare comes along the whole game changes. A good day is a pain out of 7 or 8 out of 10 so hence the reason why a good day is still difficult. I see the Pain Doctor Friday week so I am really hoping they can suggest another avenue for pain relief as there is no cure for CRPS – I just want to be a better functioning person and in this year and a half – I am not. Don’t get me wrong now that I have a personal carer come in that side of life is much more managable, its the day in day out pain pain pain and then on a bad day horrific pain. I think I just feel bloody exhausted at the end of it – that’s all.

On my way out of it now. I have decided to stop taking the anticonvulsant Lyrica that has just come onto the PBS list as it was another thing not working. One of the side effects of weaning off this medication is what fees like a middle ear infection. My doctor just did a double check and no that ear is fine it is just killing like a bitch and deaf in that ear. Not sure how long that will last but I am hoping some other really nasty things that have been happening like not being able to feel my right hand (the good one…especially a problem when you only drive with 1) and losing the feeling in a leg as well. I am hoping they are side effects that will go by when the Lyrica is out of my system. It really amazes me how many really perculiar symptoms you get. My carves are covered in what looks like school sores (must look horrible to others) and are so insanely itchy that you will continue to scratch long after the blood is still running down your legs. I write this because these are the things I am experiencing and hope that this might help another sufferer at sometime in their life.



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