I don’t often delve into how I feel about my own illness, some of it is that I mostly try to not think about it. Or try not to every day that I am not experiencing pain to forcefully remind me. It seems to be easiest to just not think about things unless you have to or it all becomes too sad. But to be brutally honest, some days I wish I had a better known and understood condition, I have had a lot of those days lately. I had to find a new chiropractor, and finding any health professional that has worked with someone, or is knowledgeable about my condition is hard enough, but finding people who understand what I have is even harder. You start to wish you have something that is known, anything that is known and treatable, you even begin to envy people with cancer. At least they are treatable and people know what it is, and how to treat you, or at least more would seem to. With CRPS I seem fine on the outside, and no one, but my husband and close friends, knows how hard I work to keep up that appearance. Sometimes I get the mottled skin, and swelling which can be hard to hide. The symptoms are so subtle right now to the casual observer, most would never know anything was wrong with me.
This frustration is what leads to a lot of what I would call white lies, and the oh so common Southern method of avoidance by not mentioning things. You find yourself avoiding discussing your level of pain, or even saying you have something wrong, since that could lead to a depressing discussion. Or just simply avoid discussing things by answering the compulsory “how are you” questions with some version of “I’m fine,” which most of the time you really aren’t.
When people don’t seem to understand my condition, or when you feel like people can’t understand how you feel about everything that happens to you, it can be extremely frustrating. It is mostly stems from the fact that I have to patiently explain for the nth time what I have, and the why’s and the how’s. The frustration leads to isolation, since there seems like there is no one to talk to to who really understands everything, and a lot of people don’t understand your physical limitations which puts strains on relationships. You begin to become trapped in a double prison, the confines of your living space, and your corporeal prison. If you are at all like me, canceling on anyone already makes you feel badly, but also means you are not able to go out…yet again. Even though you really, really want to. It can be very upsetting to have to cancel things you want to do, even more so when it seems that you have to do it more often than not. Then sometimes people aren’t understanding of you having to cancel, or think you are doing it on purpose. Social life becomes crammed into the good days, and it sometimes hard to not over do things and end up right back where you were.
Even when it isn’t like that it can feel like it is, but the days you do get to do what you want are so precious it can seem overwhelming. Some days are better than others, and on those days do as much as you can, and try not to overdo things. This year has been a harder year than usual and it has been more difficult to deal with, luckily though I have looked and found a support group and am already feeling more positive about my predicament since there are people out there that are dealing with CRPS in most of their body, like me. I am glad I have more people that I can add to my wonderful support base that I am already more than thankful for.
Sometimes, people can take you discussing your symptoms as giving up, or that I have resigned myself to the worst. I have read about the symptoms and I decided that I will emotionally prepare myself for all that could come my way. Just reading the treatments, especially the ones about amputation, can be scary or a bit of a downer, but I would rather embrace them emotionally now than have them hit me when I am unprepared. That way if the worst ever does happen, I have already mentally prepared for it, and I hope by doing this to not be crushed under anything horrible hitting me unexpectedly. I have been told that my acceptance of symptoms can come off as me giving up. I think it comes from their fear of me giving up, or their fear of my decline, but ultimately it comes from their care for me. So because of that I try to not let it get me down too much, but I think it should be said that if you know someone who has a condition that causes deterioration for their body, encourage them to see that the bits lost does not make them less of a person inside. I have found from personal experience the more you accept them and are at peace with them, the less painful the loss will be. Life will not end with pain, or loss of limb, or mobility, or anything really. Life goes on in different ways, as the saying goes if one door closes, another opens. Don’t ever give up, it is always worth the fight to keep going even if you have to accept limitations.
There is the other problem of when you mention a symptom some people jump to conclusions that it is something else and attempt to press you to be treated for something they think you have. Then you have to explain how CRPS is diagnosed and that it is a diagnosis by exclusion, which means you have to rule out any, and everything, it could be that is not CRPS. It is pretty a much less dramatic House episode, lots of tests and “well that is ruled out” sort of thing over months. I know inside that it comes from the hope that it could be the treatable option, and again from a caring place. It can be hard to deal with but, keep reminding yourself (as I do myself) that it comes from love and not to frustrate you.
Overall, yeah it sucks to have what I have, but I still very strongly feel my accident, and my condition, have made me a more peaceful and compassionate person. It has helped me find out who real friends are, ones that you want to keep around you, and the importance of keeping things positive. Try not to dwell on the can’ts, and dwell on the cans. Even I have bad days but there is always tomorrow, and I truly believe that.