Chronic Pain

It is February and I had intended to write about love and its various forms, specifically the love between my cat Jay and I. However, having spent many hours last night being overwhelmed by my physical pain, I decided to talk about pain instead.

I am not talking about pain from an injury that may last months but eventually subsides. I am referring to pain that impacts every day, year after year. As with all pain, some days are worse than others and on the better days I truly think “this is not so bad” and enjoy life. Of course those are my good days. Most people don’t see me on the worst days because I stay where I am now – at home in bed. On the bad days where I still have to go out, well I would not say I am exactly stoned but I certainly have taken enough medication that I am not completely there either.

This pain leaves me feeling set off and isolated from the world. I feel if I mention it I am complaining or looking for sympathy and if I don’t mention it then no one knows and expects me to be able to do things (and even move) as though I have nothing wrong with me. Damned if I do and damned if I don’t. The pain I have does not make me look sick nor even apparently in pain although as the pain has worsened I have gone from looking ten years younger than my age to looking older than I am. I have no cast, no visible scars.   How I got this pain is not as important for this blog as the fact that I have it. I find the emotional component to living with it as difficult to deal with as the physical side of it. When it becomes severe (thankfully not every day) it naturally leaves me very depressed, feeling incredibly low and alone. I don’t know where to turn to relieve it. I try all the things that sometimes help distract me but nothing really works. I am afraid to take more medication than I absolutely need to survive because I am terrified of getting horribly addicted. I don’t drink for the same reason.

I thought I would lose my mind at 5:00 this morning. I woke up an hour before with the pain so bad I could barely breathe. I moved around a bit to loosen up, took some Tylenol with codeine, tried to lie and meditate to relax my body, cried, and held on to Jay (my cat) who was lying up against me as he always does when my pain gets really bad. Nothing helped. About 6:30 I took my morning morphine (I am only taking half the dose I was three years ago but there are days I wonder if the effort to reduce is worth it). The morphine does not work on one pain and Tylenol does not work on the other so on days they are equally bad I have no choice but to take both.

About 7:00 I fell asleep again. Some days after a bout like this I wake up a couple of hours later feeling better. Today was not one of those days. I still have severe pain and a headache from coping with it. I may have to take more medication because otherwise I will spend the whole day lying here completely unproductive.

If you know someone living with this kind of pain try to understand. Most of the time that is all they want. They don’t need to be coddled, just validated. Here are a couple of tips:

Please don’t judge me and think I should just live with it and get on with things. You have no idea the pain I push through as it is.

Yes, I know there are people much worse off than I am. You don’t need to tell me. There are many days when I am grateful for that but it does not make the pain better.

Don’t assume that some miracle thing that worked for you is the answer for me. By all means ask if I have heard about it, and if I want more information give it to me, but don’t tell me you have the solution to my pain. It is unlikely.

And PLEASE, do not tell me to look on the bright side or I may have to hit you. If there is a bright side to my pain I will find it on my own!

To those who are in pain, I am sorry and have great empathy. No one has the right to tell you how you “should” be handling everything or that things are bound to improve. The only thing I will say is to keep looking yourself at solutions for your own illnesses/conditions, however unusual or “out there” they may seem to other people. You never know when one of them may be the key to helping.

About fifteen minutes ago Jay came and leaned up against my chest and started purring. I realize now I am feeling better and think I may avoid the Tylenol.

My grandmother walked with a cane for the last 25 years or so of her life and always rocked back and forth a couple of times to get out of a chair (she never wanted anyone to help her). She died before all my own problems began. I never really knew what was wrong with her but she always told me the key was to “keep moving”. I remember those words on days like today when I don’t know if I care anymore to try.

How do you deal with your chronic pain? Does it make you feel isolated, frustrated, like giving up?

12 Comments

  1. Doreen Pendgracs
    Feb 7, 2013

    Hi Susan: I feel for you, my friend. I am fortunate that I do not personally experience chronic pain (other than the slight discomfort from bad knees) but I do have friends and family who share your pain and I believe I can empathize. One of my friends had chronic pain and discomfort from osteoarthritis, fibromyalgia, and asthma. She took a myriad of medications and nothing really helped. Until … she tried the Chi Machine and Hot House, therapeutic machines put out by HTE. She now has no pain, takes no medication and says she feels 35 (she is in her late 50’s.).

    • Susan McNicoll
      Feb 7, 2013

      Thanks Doreen. I will look into these and see if they can possibly help some of my pain. I have recently found a doctor who knows a great deal about pain and I will ask her about them. I do have fibromyalgia (FM) but I managed to get it under control a few years ago with one medication, although certainly not cured unfortunately. However, I can live with it the way it is. The other two things I have wrong with me have left me with even more severe pain than the FM did but I am constantly looking for solutions so I will look into these. Thanks for stopping by to comment and for understanding. I appreciate it.

  2. Debbie Aitkenhead
    Feb 7, 2013

    Susan, I can relate to the pain you have. I had chronic pain for 25 years. It started with fibromyalgia, chronic fatigue syndrome, restless leg syndrome, asthma, neo patella pain syndrome osteo arthritis ( in my knee, bone rubbing on bone) bone spurs, insomnia, low energy and a weak immune system. I felt like I had it all, and was very depressed from all this pain. When I came home from work I had to lay down while my husband made supper, got up to eat when it was ready and went to bed soon after so that I had some strength to make it through the next work day. This went on for 25 years. It was no life, believe me. Then one day some one told me about some machines that could possibly help me. I had previously been going for massages, acupuncture, physio therapy and chiropractic treatments. Nothing had really helped me. I started on 3 machines called the chi machine, hot house and electro reflex energizer. Within a few days to a week I started to notice a reduction in my pain, by the second week I felt even better. The more I used the machines the better I felt. My husband and I use them faithfully everyday. I do not take any medications whatsoever, do not get the flu or cold, and have been retested for my medical problems and are now non existent. I have been pain free now for about 4 years and feel great and even younger.

    • Susan McNicoll
      Feb 7, 2013

      Thanks for sharing your story Debbie. I will definitely look into the machines. I am glad to hear your pain is behind you. It must be such a relief.

  3. Suzi
    Feb 9, 2013

    I’ve just read ur blog on coping with pain. As of mow I must digest but I did need to say that you have not left one dream unconquered and are right where you are, right this minute because u are Sue! That’s epic for me.

    • Susan McNicoll
      Feb 9, 2013

      Thank you for stopping by to read my blog on pain. Your words mean a lot to me. I think many people think they have not achieved what they were supposed to but all of us are where we need to be at this moment and so many have met their challenges and tried their best. What more can anyone ask.

  4. Keith in St. Louis
    Mar 22, 2013

    I have chronic pain in both feet & back & right elbow. I appreciate your restraint in taking minimal dosages of meds; it inspires me to do the same. Glad to have stumbled on your blog as it reminds me that I’m not alone in my pain. (I wish I had your affectionate cat.) Music helps me. While listening to a favorite piece I’ll sometimes imagine musical notes falling over me, as well as into me, my physical body. Kind of an imagery exercise using music for inspiration. All the best.

    • Susan McNicoll
      Mar 22, 2013

      You have my sympathy Keith. Chronic pain is horrible and I cannot imagine having it all the time in my feet. I have incredible pain through most of my body and every so often, for some reason, the bottom of my feet hurt so much I can barely walk so I cannot imagine what it is like to have it in your feet all the time. You are incredibly wise to use music. And to combine it with imagery is really valuable. Music has helped me so much and you inspire me to start using it again more often than I have been doing lately. I still take more medications than I want to and I hate what they do to my mind. My brain has always been my strongest feature and to have it blunted in any way is frustrating. You have to find a balance. Take the medication you absolutely need to not go crazy from the pain but only that amount. I always hurt no matter how much medication I take so I have learned to take the amount I need to still be able to function and then try to live with the rest. But there are days when the pain is so bad I just say to hell with it, take extra medication (and my cat!) and go to bed. Keep trying to find solutions and also keep remembering you are not alone. Thanks so much for commenting.

  5. Cat McMahon
    May 1, 2013

    Dear Susan,
    You are not alone. Many of us are out here are trying to overcome and make lives, despite/in spite of, pain.

    One of my doctor’s told me a cat’s purr is very healing. She explained the science and studies behind this, which I am unable to pass on, but I’m sure there must be information on the internet about this. Deep down, I always knew my cat’s helped me feel better, and that’s all I need to know. My doctor did tell me cats sense when we are not well and purr to help us feel better. They know their purr is healing in some way, and have an innate sense of what level of purr is needed. Jay is a very special cat who cares about you a great deal. He’s very dedicated to his job in nursing you.

    I don’t have any answers for you. Like you, I perpetually search for healing. I’ve tried everything. My last ditch effort is Nambudripad’s Allergy Elimination Treatments, (see the book “Say Goodbye to Illness”), ST8 Lymphatic Drainage Treatments and Activated Air, along with diet and lifestyle changes. These things have, literally, brought me back from dying. While I’m a bit better, I’m still fragile.

    I’m grateful for the life I do have and live each day as if it is my last. My life is temporary–I can do anything temporary. If I am meant to heal, I will; if not, then I have done my best to create a beautiful life where I’m at, in the moment. And along the way, maybe I am able to make someone who needs it, smile, feel loved, discover healing, or otherwise better their life in some way. Cat’s cabin, my home in the wilderness, is a healing place. Though my body is bound by earthly pain and illness, my heart, mind, spirit and soul are free–these I nourish and cultivate, because, these are the “me” that will live forever, and transcend me to a beautiful life.

    Isolation can be a healing place; I’ve learned to embrace it. You are not alone.

    Kindest regards,
    Cat

    • Susan McNicoll
      May 2, 2013

      Dear Cat

      While I am happy to be understood, in some ways I wish I wasn’t because then it would mean no one else suffers from pain and illness the way I do. Having said that there is a comfort in knowing that I am not alone. I am sorry your journey has been a hard one and you continue to be fragile but your spirit is anything but. I love your paragraph beginning with “I’m grateful….” because it sums up much of what I feel and how I try to live. I often don’t succeed but I certainly try hard! It does not mean I am not going to continue to try to find solutions but one of the things Jay has taught me (and I am still continuing to try to learn it) is to live in the moment. Most days, even the bad ones, have some joy in them. Our lives are the sum of all our moments, not just the painful ones.

      You are quite right about the purring. I know firsthand that it works and Jay often lies on the one part of me that is hurting the most. In addition there is also something called limbic resonance. I believe in it. Maureen Adams, in a book titled Shaggy Muses, describes limbic resonance best when she writes that it is “the ability of mammals to soothe one another by regulating their heartbeats and breathing to be in synchrony. The result is a shared sense of well-being and safety.”

      I shall have a look at the book you mentioned. Thank you so much for stopping by and commenting. I hope your cats continue on with you on your journey for many years to come.

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