Friday, February 22, 2013

Sometimes having an invisible disease...

or so they like to call it can be frustrating, I am not sure why they call it invisible, cause I and many other CRPS people can see the swelling, the loss of movement, the colours of purple and blue or even better the blotchy redness of our affected limbs, the dystonia.... anyway have gone of on a tangent here.... back to where I was. Yes I am lucky I have some mobility but I work bloody hard to maintain what I have in the way of physio, pain specialists to change my meds when needed, psychologists to make sure my brain stays relatively normal lol, well in the morning maybe, by the afternoon I am in lala land, support groups to help me understand why something has changed and how do I deal with it. Yes I could work harder on my food and that is now going to happen, but what I was saying it can be so hard at times when people don't understand.... how much it takes out of me to cook a simple meal, how I have to take about 30 pain meds alone just to be able to do these things, (that is not counting the meds I take for spasms etc) that was a big decision, live in pain constantly or have an hour or two of being relatively pain free and this includes taking methadone. I take these meds to be normal, as much as I can, if I didn't take them I would be bed bound and in and out of hospital thats a fact, I know they are not doing me any good and have no idea about the long term side effects, in fact right now I don't really care about that.

Now Anne (Aussie) this is for you, your last comment about leaving it to late and it is NEARLY impossible to turn it around, yes it maybe NEARLY but it is not impossible, do what you have to do to stop it going any further.... and I don't mean that in a bad way , I care about you :)

I suppose what I am saying to anybody is that do what it takes, keep in touch with the people that you need help from, if people don't get back to you, ring them everyday till they do, thats what I did, well actually now I am lucky on I am in a pretty good management plan, but to get there I was seeing the specialists weekly and keeping in touch most days till we got it right, it took over a year to get some sort of plan worked out that suited me and I am so glad now, though at the time it was frustrating and I wanted to give it up. Also I am not saying that meds is the answer, for me it is probably 60% for me and the other 40% is the physio I do, the mirror therapy I try and do most days, the pain meditation I try and do most days as well..... this all takes up a lot of my time, and somedays it seems to much but these are the days that I know if I don't then then I will go backwards, nothing comes easy with Chronic Pain, but I do know for certain that if I didn't do these things then I would be in and out of hospital and housebound. 

And on that note that is my lecture/rant for today.... there is always something to accomplish no matter how small it is.... I am still hoping long term that just maybe once I get some more mobility back that just maybe I can decrease some of my meds.... but for now I need them to at least keep some mobility. 

And next post I am hoping to do with my dragon dictation so will see how that goes. I am off to see the psychologist this morning, yesterday I had the hand therapist, just a couple of things I need to keep this body moving :)

I had the most awesome session with my psychologist this morning.... I see her once a month and she is a pain psychologist. It really does help seeing her, just another tool in my life to help me cope with CRPS. I did this a few weeks ago, and something I need to remember :)


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