I lay here wide awake at 2am! Its a typical night in a life with CRPS! These nights can be really long and drawn out. You might be saying well just take some sleeping pills! It isn’t that easy however because I’ve tried that and the side effects and other things make it worse. So instead of staring at the walls I may as well make good use of the time. It’s hard to do that however when every inch of your body is feeling pain! To bring you up to speed without getting into great detail things have been getting worse not better after my surgery.
At this point in time its hard to give you much of an update on where things are at, as I continue to heal from my surgery four months ago. Doctors are still trying to figure out why I’m still in so much pain along with other issues, that just don’t seem to be going away in recent weeks. This is the life of a CRPS patient! Nothing is ever easy! Our bodies have a mind of their own and a lot of the time we are forced to go along for the ride, at the mercy of an illness that knows no boundaries. For the last nine years I’ve had to learn just how a chronic illness like CRPS affects a persons mind and body. This has enabled me to better understand the invisable illness that so many doctors misdiagnose or say is all in a persons head!
With an illness like CRPS where there is no known cure and so little is known, who gives the medical community the information they need to find a cure? The patient right! So it isn’t my intention to come down on anyone and lay blame anywhere. I am however going to say to some of you in the health care industry please stop saying ” IT’S ALL IN OUR HEADS “. Yes your absolutely right! The answers are there somewhere in my head but I need your help to find them! So please instead of turning patients aside and telling them their crazy, please listen to us be a little more sympathetic to what we are living with. We aren’t making up what’s happening to our bodies up and it is so very real! Most of all we are doing the best that we can to survive in an aweful situation. We don’t need to be told that what we are experiencing isn’t happening. When I don’t know what’s happening to my body and I’m scared the last thing I need is to be told I’m crazy. What we need is support!
It wasn’t my intention to write about this topic. However I hear the phase “It’s All In Your Head” so often and it angers me because when you ask a CRPS patient what the doctor said at their appointment, often the first answer you will hear is “he told me it was all in my head”. I didn’t want to get into a rant but I guess its to late for that. To some of you who work in the health care industry please start working with us and not against us! Now to all of those physicians, specialists, and whole host of others who are working with us a huge “THANK YOU” for all the amazing support that you give us! I realize that there are a lot of unanswered questions and that it isn’t easy to care for us.
The job that physicians and specialists have in making the diagnosis for CRPS is hard, and isn’t always cut and dry. This is going to take teamwork if we are ever going to find a cure so its in everyones best interest that we come up with the answers together. Its exhausting living with this illness and the last thing a CRPS patient needs is more stress, so believe them when they say something is wrong! I guess I say all of these things for all those CRPS patients that haven’t been heard or have a hard time saying what their really feeling inside. When your world is spinning out of control and you don’t know what’s happening to you, it can be hard to communicate amongst all the turmoil that’s going on in ones life.
As someone who lives with CRPS I am part of the larger group of people living with chronic pain. You may be unaware but as of 2014 the Canadian Pain Coalition reports that 1 in 5 adults in Canada are affected by some form of chronic pain that usually lasts 6yrs or longer. The annual cost of chronic pain to the taxpayer is $62 billion. Finally more than 27% of all chronic pain suffers haven’t even been diagnosed yet. Of the people that have been diagnosed with chronic pain 71% go for more than 12hrs a day in pain. All of these facts and numbers come from the Canadian Pain Coalition and if you want to have a read go the link http://www.canadianpaincoalition.ca/index.php/en/about-us/media-room/2014/10/17/242 . What amazes me is that chronic pain costs Canada more than Cancer, AIDS, and heart disease combined! If this isn’t enough of a reason to bring awareness to CRPS and other chronic illnesses then what is!
Please! Please! To those of you out there who read this and are in a position to help, those of us in the chronic pain community we need you! Not eventually but “NOW”!