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Friday, April 26, 2013

CRPS/RSD, AND LIVING WITH IT

CRPS/RSD AND LIVING WITH IT

I was finally diagnosed two years ago going on three years ago now, what a mission that was, anyone would think that people who have chronic pain absolutely love it, or else we are trying to wrought the system,or we are just bunging on in general, and this goes for a lot of the specialists out there too, i don't know how many of these specialists rooms i have left in tears.
It seems also, that if you do not fit the already written book on this condition, that it is not possible for you to have it, so they try putting a square peg in a round hole, or just put you down in their books as a bung on, or someone who insane, or whatever. 
What ever happened to the Dr's who wanted to be Dr's so as to be able to help people? I do not think there is many of these left, these days the main aim is to earn the big bucks.
Nobody in their right mind would want this, nobody suffers with any form of chronic pain would, all we want is to be able to live a normal life, because now we realise how lucky we were before, because now it causes us more pain than pleasure to most things that we loved before, now we have to learn different things, like how to cope with the pain when it's at it's worst.
We have to try and ignore the pain on our loved ones faces when we can't wear our mask, we have to learn what it's like to not have friends, exept for those online, and hopefully our families, because let's face it,most well people don't want to be around someone like us, because it scares the hell out of them, that it could happen to them.
This monster has caused so much  in mine

l upheaval

 and my families lives, nothing is the same, and won't be again. 
I cant and will not go into what we have been through as a result, either directly or indirectly, it is too personal, and to be honest the wounds have healed.It's bad enough having to live with the physical pain, let alone the emotional stuff too.
I don't know how many times i have wished that i was not around anymore,not only because of the pain, but because of everything else that went with it.
Not all has been bad though, i have met some lovely people who are also sufferers, or supporters, who seem to be the only ones to have some understanding of what you are going through. Our husbands or wives do not understand, they were used to us being strong competant people, now we are dependant on them, and not always able to things with them that we did before, so therefor they carry a bit of resentment towards us i think, well maybe not us exactly , but it may as well be.
And don't forget the kids, now they have to step up to the plate as well, and boy is that hard for them when they are used to having two strong capable parents.
So it can be a very visicous circle, one that we are all caught up in, and do not quite know how to cope with it, or what to do for each other, because it's tearing us apart because we all know that we are all hurting.
And what about those people who look at us and don't see that we are not ok, so they think we are well, and do not deserve that disabled park?? I have had two mild strokes within the past few weeks, this has been the scariest time of my life,I honestly thought i was going to die, i am not out of the woods yet, my blood pressure is still fluctuating,  i am still getting very breathless. This has certainly given new meaning to be careful what you wish for.
I am not sorry for myself, most times i have a happy disposition, and go out of my way to help others, make them laugh, even if it means making a fool of myself, just knowing i have made them laugh gives me a satisfaction that i can not explain, so it's all worth it. I don't even hate what i have, i am in awe of it, i would not be the person i am today if i didn't have it, because i would not have experienced half the stuff that i have, good or bad,so i don't sook, i just try to tell as many about it as possible, because this didn't exist to me until i got it. I may not be able to a lot of things like before, but i can do different things now, i may not be able to do a lot of physical stuff anymore, and i might not be able to concentrate like before, but i am strong in character, and in my opinion that everyone needs to be informed about this cruel disease.http://posts.fanbox.com/tplv5

Monday, December 6, 2010

my life with crps/rsd so far

I have been living with this now for 2 years now, as of the third of this month. my dr diagnosed me earlier this year, and i have been to several specialists, but only one did not rule this condition out, instead, he told me that i must feel like im going out of my mind, never more truer words spoken!since i was injured in 08, i re excasabated my old injury at work by lifting a` bucket of soap powder, weight aprox 5 kg. i was very rushed this shift, and i would never have lifted it with my left hand if i hadn't been, as i was always very conscious of what i could and could not do with it. i always had a certain amount of pain, and other sensations in my arm, only the severity of the symptoms changed. if i was rostered on for 2-3 days or more in a row, i would end up with chronic pain. i was going to go and see my gp about it, but didn't feel i would be taken seriously, as the symptoms kept changing, and moving. but as fate would have it, i had no choice in the end, and was forced to do it anyway. nobody much beleived me at work, especially my supervisor, they thought i was a bung on to get out of work. i wish.!!!! since then, it was made perfectly clear to me that i would have no light duties given to me when i was able to return to work, and as it turns out , i have been forced to leave my job anyway, because of my injury.  since then , the condition has moved, it is now in my shoulkders, my neck, my chest, my back from just below my shoulder blades, up to my neck, and into my right arm down to just below my arm pit. i have an array of different symptoms, which i will post , i am seeing more specialists today, so i'm hoping i get better treatment this time. will keep you posted, and will post symptoms when i'm back. love to all M