Sunday, March 4, 2012

Its more than just the pain.....

It is about the toll it takes on your family, especially a relationship with your husband, it is the side effects from the meds, the dizziness, the tiredness not being able no longer to have a social life at night anymore, the lack of concentration, people not understanding what you are saying due to confusion in your words,  the slurred or incoherent speech and people thinking you are drunk because of the way you talk or walk. 
It is about the loss of income if you can no longer work or your wages have been cut with ACC. 
It is about the many doctors appointments, ACC appointments, physio/hand therapy/psychologists appointments each month that are very stressful especially the ACC ones, it is also accepting that you are probably never going to work full time again or walk that half marathon again, it is also about accepting being in a wheelchair part time to have a life. 
It is about not being able to drive around anymore when you feel like it, it is about not being able to go out and visit people just when you like, you now have to plan it all in advance so you can rest up or so that you know you will have a few quiet days after the outing. 
It is about dropping things all the time cause you are losing the grip in your hands unless you really concentrate, it is about the spasms that you get in your arms/legs etc, making it difficult to relax and walk, and also the shakes.
It is about having to learn to pace yourself each day so not to cause a flare up, it is also about having to work through some of the pain to mean you have a life at all. 
It is about the burning of our skin, the itchiness that you scratch so much till it bleeds and blisters, or it is to sore to touch, it is about watching your body change colors with increase or decrease in pain. 

And that folks is what I call CRPS - I am sure there are many more things that will come to mind but thats it for me for now. 

On today well like I said yesterday the weather was nothing like the weather forecasters said it would, apparently Taranaki got a good bout of it and some other places but the rest of the North Island was fine......

Not much else happening, maybe go for a drive not sure.....


  1. It must be difficult having to get used to a whole new way of life. Like you said though, not just you but your family as well.

    You do a really good job at describing what you are going though. I had never heard of CRPS before and think you are doing an amazing job coping with all the changes.

  2. As Sarah said, I too think you are doing a really good job of coping with the CRPS.

  3. I am not alone...I thought the dropping things was just me, because the Dr. just stares blankly at me when I try to tell him this has changed my whole life on every level...I am not crazy - thank you.