This post is about CMT so if you’re not interested in the disease, or you simply can’t stand one more downer today, please disregard.
I try to keep these posts up beat but sometimes things truly get me down and I’m thinking that they likely get others with CMT down as well. I’m writing this with MacSpeech Dictate so if it reads a little bit different than my usual posts, that’s why.
There aren’t many things that will bring me to tears: the imminent death of my beloved mother and dog, anything happening to my husband or much loved sister, and my overwhelming, ceaseless burning pain, will do the trick.
When I broke down sobbing in the hallway today, my husband asked me why I keep so busy and could I not knock my workload down. I told him that the reason why I work so much is because when I’m working there are things in my mind besides the pain. When I’m not working the pain seems to fill every corner of my mind. Is it any wonder that I fill my days with volunteer work and projects that I love, writing my newspaper column, advocating on behalf of my peers and, in general, being a nuisance to anyone who ignores people with disabilities.
I remember when I read an article that told me pain can be stressful. It was a revelation. I mean there it was, in words, finally. Stressful! Pain is like another full-time job. It is always with you, you are always working on it, you are always dealing with it, your mind is always cognizant that have it, and it simply won’t go away no matter what you do.
I have tried more than 30 different drugs and therapies including marijuana. Some have done nothing and others all have such terrible side-effects that I simply cannot continue to take them. I say none have worked… none but Cymbalta… and it left me with constipation, very little urine output, sweating profusely and soaking wet all-time. In Canada, in the winter, if I’m soaking wet all the time, that means I would be freezing all the time because I’m cold all the time anyway.
Cymbalta cut my pain in half but I simply couldn’t live with the side-effects any more and I truly thought they were dangerous to my body. When your kidneys and bowels aren’t working, you don’t get rid of toxins and, pain or no pain, you’ll get sicker in the long run. I had a wonderful two months on Cymbalta but simply had to stop it.
I wrote about a pain conference I went to early in the summer and how, at that meeting, met two doctors who are studying neuropathic pain. I asked one of them if anything like Cymbalta, but without the side-effects, would be coming on the market soon and he said there could be something in about 18 months. That was about three months ago. I’ll get back to him back to ask if anything has happened in the meantime or is there any other drug.
I also asked the doctor who runs the CMT clinic at McMaster University in Hamilton, ON for a copy of my MRI, which is four years old. It shows that I have a cyst on my spine where my CMT pain starts and that cyst is putting pressure on the nerves. Why he didn’t tell me about this before I have no idea but I am assuming it’s because they can’t do anything about the cyst. I’m going to see if I can go to another neurologists, and see if a new MRI will give us anything more to go on and if anything can be done about the cyst and, in their opinion, will it help the pain. It’s worth a try.
Forgive me for venting but pain is one of the most insidious things I have to deal with in my daily existence and I’m pretty sure it is for most other people as well. I have never been abused or don’t know what that’s like. I have never been raped. I have no idea what you live with when you’ve been raped. I’ve never been a refugee or gone hungry so I can’t experience what bringing to the fore what these things do to a person but I do know what constant pain can do.
There is a book called Full Catastrophe Living, and I can’t remember the author right now, but if you Google the title on eBay or on Chapters you’ll find it. It is one of the very best books I’ve ever read on coping with unrelenting neuropathic pain. The author writes about your pain and treating it in an holistic way because as we all know pain not only affects your body but your mind, your everyday living, your love life, your relationships with friends and family, your social life, work, and how you eat and sleep. In general, it simply affects everything you do.
In the book, the author says when the pain gets too bad just ask yourself, “Can I put up with this as it is now for one more minute, one more hour, one more day?” I have asked myself over and over again today and yesterday. Obviously, I CAN, because there was a yesterday.
Each day, when I wake up, I tried to do the very best I can with what I have left considering that CMT has taken away my ability to walk and my hands are almost gone, I pile out of bed an optimist. I do try to do the very best I can but pain makes life a living hell sometimes.
I just asked my husband what difference it would make if I were dead. He just looked at me. And then I said, “Really, what difference would it make?” The only thing I could think of was that my pain would be gone. When I’m spouting that kind of logic, and it sounds reasonable to me, I know I need help. The difference it would make would be that I would no longer be in pain but, then again, I would no longer be. I would rather be and be in pain than not be so the search continues. Come along with me if you are in pain, as well. Reply to this blog and we’ll see what we can find as searcher in a world where neuropathic pain is something you live with, not something that can be relieved. But that doesn’t stop us from searching for that one thing that takes away our pain, does it? Hope springs eternal.