by Ruth Stella MacLean

Sharing Your Stories

After so many years of living with chronic pain and getting a chance to meet people who have been working through their issues around their pain, I’ve learned that each of us has a story. That story is as individual as our pain because each of us has had to learn to deal with our pain in our own unique way.

If you’d like to share your story on how you learned to deal with some aspect of your pain, please feel free to put your experience into words here on this page. Your story may help someone who has been struggling with an issue that you’ve found a solution for, or maybe your question about something will offer someone else a chance to give his or her answer to your problem.

I look forward to reading about your experiences in living each day with your pain.

Ruth Stella MacLean

3 Responses to Your Stories

  • In 1978, at the age of 17, I was diagnosed with epilepsy and prescribed an anti-convulsant. This powerful drug controlled my seizures 100 % as long as I took the full 60mg faithfully 3 times daily but it made me very sleepy. When I asked my neurologist about my options, he told to take it all at once, at bedtime as the effects wear off during sleep. I still had a 24 hour protection, but wasn’t as groggy. AND I certainly slept good.

    What they never forewarned me about was the fact that prolonged use of this medication could lead to osteoporosis/arthritis. And since it’s in my family, I had a double whammy against me. Granted, perhaps it wasn’t known back then. But later down the road, no doctors ever questioned whether it was safe for me to be taking this drug for so long. Each time we moved, my new family doctor sent me for en EEG which always turned out normal, and to them it meant the drug was doing its job. They gave me another year’s prescription with the same attitude: “If it’s not broken, why fix it?”

    Fast-forward to 2008. Still seizure free, I’ve married, raised 2 kids and moved all over the country. My new doctor in NS felt that this drug was a very old medication and she sent me to an “epileptologist” (I never knew there was such a thing and spell-check doesn’t recognize the word!), a neurologist who specializes in epilepsy.

    “There are better anti-seizure meds on the market,” my doctor said to me.
    “Aspirin is an old drug too but people still use it,” was my argument.

    When I walked into the epileptologist’s office, I had my guards up as I’d been brainwashed with the “if its not broken, why fix it” slogan. He saw it coming: “The chances of you ever having a recurring seizure are next to nil. You’re heading for osteo and liver problem after taking this drug for this long. Wean off this drug 30 mg every three months. If you wean faster than that, you will end up with withdrawal seizures. That’s my advice to you. What you do with it when you walk out this door is up to you. Have a good day.”

    Ouch! It took a while but I finally heeded his advice and over the course of the next two years I began to wean off. In March 2011, and after 33 years, I was totally off the meds, and a year later, I remain seizure free. The road hasn’t been uphill all the way though.

    As I started to cut back in 2009, I began to wake up at night with pains in my legs, and oh how I was restless. I was told that it would take a while before my body got used to “sleeping on its own” since I’d had a sleep-aid all my adult life. Each time I cut back, it got worse. After a while, I was in so much pain, I didn’t know what to do anymore. The colder days of winter seemed to make it worse. I sometimes saw every hour of the night and I longed for the anti-seizure meds, “just for a few nights” to get some Zs.

    Finally, I went to my doctor. She did blood work, ran tests, x-rays and scans. Then she told me that I had osteo-arthritis. YAY! (excuse the sarcasm).

    Had I been given a choice earlier in life, between the drug that can lead to osteo OR a different drug that may not control seizures 100%, I probably would have picked the osteo. I led a normal seizure-free life and did all the things people with epilepsy are told to be cautious about.

    But sleepless nights were something I’d never had in my life. And I hate taking pills. So much so that Tylenol and Advil bottles go back to the drugstore pharmacy still half-full because the date on the bottle has expired. I’ve been like that all my life, probably because I had to take meds to lead a normal life.

    The best remedy I’ve heard about and used for my arthritis over the past two years is to ‘walk the pain away’. Some say “it hurts, I can’t walk.” In my case, walking helps alleviate the pain. Yes, the first steps were painful but the more I walked, the better I felt. So I purchased a treadmill and started walking. That way, I had no excuse, rain or shine, I walked. It’s amazing the difference it made. Except… it didn’t help me sleep.

    I received from the arthritis association a sheet with Top 10 exercises. I began to do 3 of them faithfully every night at bedtime. I lay flat on my bed, and do 20-30 of each: leg lifts, knee bends and ankle rolls. These have helped tremendously. Now that it took care of the restlessness in my legs, I should be able to sleep. NOT!

    So my doctor prescribed different medications, all of them a trial basis to see if it helped me sleep. Nothing worked until…

    Last year, she finally prescribed something that helped me sleep (ironically, it’s also prescribed for epilepsy!!!). This med has helped me big time. It has helped me sleep better although I still have some off nights but don’t wake up as often. It’s not a sleeping pill but it does relax me. I work fulltime and need to sleep. One major side effect of this drug is that it causes dry mouth/eyes. I work at a computer all day, so I’m bound to get dry/itchy eyes but the dry mouth? It gets bad enough that it’s sometimes hard to swallow. I’m told there’s meds that can increase saliva. I wonder what the side effects are. I started to chew gum instead. So much so, I should probably get market shares. 🙂

    Am I pain free? No. Do I still wake up at night? Absolutely. But I’ve learned something valuable in reading your book and I need to emphasize it. ACCEPTANCE IS THE KEY.

    I have learned that, like epilepsy, this is something I have to live with. Once I accepted this fact, and accepted the pain that comes with it, the pain didn’t seem to be as bad. I’m not saying it’s easy. But acceptance is key. Thank you for sharing your story and letting me share mine.

  • What a story Renee! You have certainly persevered and are to be congratulated for your efforts.

  • Waiting to be rescued was pointless
    Carrie L. (Feb. 15, 2016)
    For me the most important thing was finally realizing that I couldn’t keep waiting to be rescued.
    Accepting that my pain was mine to keep was the toughest realization. I kept thinking I would find a new doctor, take a new pill, or get a new procedure done and it would all just go away, that life would go back to just the way it was before.
    When I read your book, I realized that what I was doing was typical of most people with chronic pain.
    When I was finally able to let go of my old life and focus on building a new one, that was the day I started to take control of my pain and rebuild my life.
    I write to tell this to others because I truly believe that if you can’t stop focusing on being rescued, you can never really start the process of rescuing yourself.

    Figuring out I was more than my pain
    Danny E. (Nov. 23, 2015)
    Winter was fast approaching where I live in Northern Maine and the extra efforts of getting ready for the Christmas season were heavy on my mind. My pain was so severe that depression was taking over me.
    My wife purchased your book for me as an early holiday gift and in 24 hours, I read it cover to cover. Everything you said resonated with me and I could see that you had been there, done that, and you understood.
    One thing that really stayed with me was that I was letting myself be defined by my pain. I saw it in the conversations I had daily with my wife and children, with my friends, and with my former co-workers.
    You told me that I was more than simply a person with chronic pain.
    I made a tremendous effort to steer conversations away from my pain. When those who care about me asked how I felt, I would say “a little better” even though I didn’t. Then I would turn the conversation around to something else, from the weather to work to a television show.
    Gradually I saw the difference. Pain and the discussion about it didn’t dominate everyone’s interactions with me, and I began to slowly feel part of the world again.
    Many of your other strategies worked well for me too, but this was one of the first things I did and it gave me the courage to explore the others.

    Learning to deal with all that advice
    Carole F. (Sept. 29, 2015)
    I have been living in chronic pain for ten months, and scarcely a day passes when some well-meaning friend of passing acquaintance doesn’t advise me on how to handle it.
    I have been told to take more pills, buck up and deal with it, that it’s all in my head, and to sue my doctors.
    People think they are being helpful and I believe they speak in kindness, but it really distresses me when people who know nothing about how I feel or the steps I have already taken feel they have the right to offer me advice.
    When I read your book and you mentioned how people who don’t have pain are not in a position to make a judgment about my pain, it really resonated with me.
    I am incorporating the techniques you describe to stay true to myself and it is helping me cope with this wave of unsolicited advice. I am learning how to quickly acknowledge people’s concern and change the topic instead of launching into more explanations that I find upsetting.

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