Someone shared this poem with me today and I thought I would share it with my readers to try to let them understand that I am coping as best I can, which admittedly isn’t very good.
The only thing I can say is I am writing Demonic Dreams. It feels good to write. It feels good to clear my head and start telling these stories again. Aislinn Cain can be a dominating fictional character, even when she’s just trapped in my brain. I feel her hands beating against the barrier, demanding to be let out. No, I’m not crazy yet, at least I don’t think I am.
I know a lot of people are tired of hearing about this disease and I get it. I’m so sorry for my repetition, but until God decides to start talking to me and explaining exactly why he gave me this – because I am really tired of hearing “God never gives us more than we can handle from people”… So I’d like a little chat with God. I can only guess that my reason, my purpose for having this as bad as it has gotten is because I am supposed to try to get the word out about a disease nobody knows anything about that is a battle for so many and often a losing battle.
Having had someone in a support group for CRPS recently commit suicide because she was no longer able to cope with the pain and judgement of this disease is a first for me, it doesn’t seem to be for others in my group. They are now talking about other people they’ve lost to CRPS because they just couldn’t handle the pain any longer and their discussions about how many of them have thought about committing suicide is sobering because it is everybody. In my little group of 30 every single person has thought about it and for everyone but me, this was not the first suicide by a member of their CRPS support groups. One person mentioned that in her local group which has just 21 members, they had five suicides in a single year. There seems to be a consensus that while some of them are medication related, most are just people who no longer want to deal with the pain.
For me, there aren’t even words, just tears. I have cried every day since I found out. Writing is helping me cope. I knew a few people in high school that attempted suicide and two that succeeded, but this one seems to have cut deep into my soul. We had many things in common including the fact that it was in our torso. She also had it in her hips. Unlike me, she didn’t get it from being clumsy, she got it from giving birth. Just a regular birth. Nothing special about it. It wasn’t’ even a C-Section. So when someone shared this poem with me today in one of my support groups I shared it in my pain blog but felt since it was somewhat writing related and gave a better understanding of how I was doing day in and day out, I decided to share it here even though I know some of you are tired of hearing about it.
“Hi my name is Complex Regional Pain Syndrome… some friends who have known me for a very long time call me RSD or CRPS…… I’m an invisible inflammatory disease that attacks your sympathetic nervous system.
I am now velcroed to you for life. If you have CRPS you hope for remission but there is no cure.
I’m so sneaky–I don’t show up in your blood work, in x-rays, MRI’s can’t detect me, basically there is no test to prove you have me. There are only test to rule out other things.
Others around you can’t see me or hear me, but YOUR body feels me.
I can attack you anywhere and anyway I please. And, I will. Constantly.
I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.
Remember when you and energy ran around together and had fun?
I took energy from you, and gave you exhaustion. Try to have fun now.
I can take good sleep from you and in its place, give you brain fog and lack of concentration.
I can make you want to sleep 24/7, and I can also cause insomnia.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
I can cause one limb to change color, look bruised, feel super sensitive randomly for seemingly no reason.
I can also give you swollen hands and feet, swollen face and eyelids, swollen everything.
OH, and just because I started off in one part of your body, don’t think I can’t travel and effect other limbs or any other part of your body I so choose to torment. I can, and likely I will.
I can make you feel very anxious with panic attacks or very depressed. I can also cause other mental health problems. You know crazy mood swings? That’s me. Crying for no reason? Angry for no reason? That’s probably me too. It is hard to not feel hopeless when you have me beating your body up constantly.
I can make you scream out loud, anytime of day or night, anywhere you are because I can create pain that makes you sure someone just stabbed you with a knife. Making you look crazy is fun for me.
I can make your hair fall out, your nails become dry and brittle, cause acne, cause dry skin, the sky’s the limit with me.
I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight. I don’t discriminate.
Some of my other inflammatory disease friends often join me, giving you even more to deal with.
If you have something planned, or are looking forward to a great day, I can take that away from you. You didn’t ask for me. I chose you for various reasons: That sports injury, needle stick,, or that car accident, or maybe it was the surgery to correct a bone problem.. Whatever the cause, I’m here to stay.
I hear you’re going to see a doctor to try and get rid of me. That makes me laugh. Just try. You will have to go to many, many doctors until you find one who can even try to help you effectively. Most of them will make you feel like you are to blame, or worse, it is all in your head. I’ll convince them that you are crazy because normal people know that you can’t have all those symptoms all over your body and still walk around looking normal.
You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.
There are so many other ways I can make you sick and miserable, the list is endless – If your body is all of a sudden dealing with things that were never issues before…yep…. that’s probably me.
Shortness of breath or “air hunger?” Yep, probably me.
Bone density problems?
Can’t regulate body temp and poor circulation?
Constant ‘electric jolts’? Yep, probably me.
I told you the list was endless.
You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away.
You’ll be told to think positively, you’ll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you’ve seen, just how debilitating I am and how ill and exhausted you really feel. In all probability you will get a referral from these ‘understanding’ (clueless) doctors, to see a psychiatrist.
I will make you question your own sanity at times. I will make you contemplate unthinkable scenarios.
Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be.
Even after explaining to those you interact with regularly that I’m the most painful disease known to man, and there is no cure, they will say things like “I hope you have a speedy recovery”. Those who don’t know me well have no idea how cruel and unusual my punishment can be.
Some of them will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago.
They’ll also say things like, “if you just get up and move, get outside and do things, you’ll feel better.” They won’t understand that I take away the ‘gas’ that powers your body and mind to ENABLE you to do those things.
Some will start talking behind your back, they’ll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a “normal” person, and can’t remember what you were going to say next. You’ll be told things like, “Oh, my sister had that, and she’s fine on her medication” when you desperately want to explain that I don’t impose myself upon everyone in the exact same way, and just because that sister is fine on the medication SHE’S taking, doesn’t mean it will work for you.
They will not understand that having this disease impacts your body from the top of your head to the tip of your toes, and that every cell and every body system and organ can be effected.
The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand.”