CMT can be a pain

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.

Daily thoughts

Some things flit through my mind and others stick…sometimes for days..sometimes forever.

Last night I watched a movie called A Short Stay in Switzerland starring Julie Walters as a physician suffering, and I mean suffering, from a disease that was eventually going to see her unable to speak, swallow, feed herself, walk and, in general, function.  Her husband had died of the same thing and she knew full well what was ahead.  She decided to leave England and travel to Switzerland where she could end her life without being labeled a criminal. Her three children were told and supported her although it wasn’t easy being told by your mother that she wanted to die. They went with her to Switzerland and it was heartbreaking to see what they went through. She did the deed and it was over.

The emotional relief I felt when she was finally at rest, when her jaw dropped and you knew it was over, was just incredible for me.  I’ve long thought about this and often wondered if I’d have the intestinal fortitude to kill myself if I got to the point where my CMT life simply wasn’t worth living. And worst of all, if I had a life full of constant pain that couldn’t be relieved without being in a drugged haze. The pain I have had for the last 20 years is bad enough.  I can’t imagine it worse but then I couldn’t imagine back then living with what I have already lived with for so long. The human spirit is an amazing thing.

I think the most difficult part of the movie was when she was saying goodbye to Flora, her beautiful cat.  That just did me in.  Animals don’t understand that you are going away for good. They just love. People understand and they love. Perhaps it was because my 15-year-old deaf/blind poodle was lying on a foot stool under the television that I felt so emotional about this scene. I know his days are numbered.

It takes tremendous courage to kill yourself, it takes tremendous courage to live on with the stresses of progressive deterioration. Either way, I think it should be our choice unfetted by laws or politics. We need to know we have the option of ending it when it simply becomes too much for an intelligent, brave, optimistic soul to go on.

If you get a chance to see the movie, don’t pass it up.

Speaking of stress, I had an e-mail yesterday from someone with CMT whose family is under a great deal of stress due to a conflict with a neighbor. He was asking if stress can make your CMT worse and have there been any research articles printed on it.  I’ve been out of the CMT research loop for about eight years. But, he can search Medline for journal articles and any good university library can get them for him.

When I was in the loop and publishing the CMT Newsletter the question of stress came up often.  We who have CMT know that stress can really do a number on our body.  It only makes sense that if we have a compromised nervous system anything that unduly stresses that system will see a decrease in our ability to function.

When I asked the physicians who worked with me about stress they could only say that because they couldn’t, or didn’t have the opportunity to, measure the person’s level of function before the stressor, they couldn’t say definitively that the stress had made them worse.  I think they were being asked because someone was proposing a lawsuit. We know if we’re being affected by the stressors around us. Trying to prove it is something else.

I remember a young woman with CMT who went blind after an automobile accident and from what everyone could figure out, it was from the stress. A seemingly simple fall resulting from catching your toe on a crack in a cement sidewalk can see you truly stressed for days. It changes your entire body composure, your homeostasis. That’s why we can easily fall again… everything is out of whack from the first fall.

Fighting with a neighbor is one of those situations that makes you feel helpless. It concerns your home: the place you are supposed to be able to retreat to for rest and healing. Unfortunately, the person you are fighting with is there, in the house next door, day after day. The problem needs to be resolved. The continual stress can be devastating.

I painted outside for three hours today. During those three hours I didn’t feel the heat, had very little pain and only looked at my watch when I heard the school bus pull up next door to left my neighbour’s daughter out at her driveway.  It was some kind of heaven: water splashing over the rocks in the pond, the boat-tailed grackles gnawing and crackling in the cedars, the seeds from my Shademaster locust dropping like heavy flies on my drawing table. The bright colored pigments dropping off my brush give me more than food. Watching the pigment disperse over the water-laden paper is like watching feathers grow. The entire process lights up my brain and makes me feel alive.  I have to paint more.

I promise I’ll make these shorter.   It’s easy to go long; tough to be succinct. I have to get tougher on myself for your sake.  Thanks for being there.