Pain Fog: Living in spite of Chronic Pain
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Month 17: What a Difference a Year makes

6/30/2016

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One year ago today we left Bridgepoint Rehabilitation Centre to come home. It had been a long five weeks and we were more than ready to leave that oppressive atmosphere and begin real rehabilitation at home. 
It was a daunting task for Barry.  I wanted out, I was determined and had blinders on to all the opposition we were getting. He on the other hand was realistic but oh so ready to go home.  I trust him with my life and I knew he would make it as comfortable as possible while taking as few risks as necessary.
Just leaving the hospital environment and going out into public was a risk of infection, and infection in a wound that leads to the spinal cord has too many repercussions to ponder.  We were warned, educated and had a plan to avoid at all cost. That plan was to just get me home without any interaction with the public at all. Then there was the task of avoiding a bump in the road, a sudden move or God forbid a fender bender.  We crept along through the city was such caution we surely looked like an elderly couple on a Sunday drive. Once on the 401 the cars whisked by us and Barry drove with his eyes in all directions.  Finally we hit the 400 and it felt like home. It was the way North and we both breathed a sigh of relief. We were really going home?  It felt surreal.
It almost felt like when we left the hospital with our babies. It is as though you've pulled something over on someone. And you had better hurry before they find out. When we left the hospital and the doors closed behind us I couldn't resist but to yell "Start the car!" 
During the four hour drive, I was in pain but relatively comfortable with the seat all the way back and pillows stuffed all around me. We were hitting a good stride when it became apparent that I wouldn't get much further without peeing. We both we leery. Wasn't this just the thing to avoid?  There wasn't much of a decision to be made, we had to stop.  A public washroom on a highway stop. The nurses had given Barry some heavy duty wipes for disinfecting our bathroom at home.  He dug them out, went into the handicapped washroom and cleaned it completely before I entered.  If I didn't love that man already that would have done it. Who says a girl needs diamonds. A clean bathroom can have the same affect. 
We got back on the road and I soon fell asleep. The rest of the trip was uneventful. We made it home and were just amazed at how beautiful everything looked. That sense of comfort, love and relief we both felt a year ago, I can feel it today.  I suspect I will feel it for a long time to come.
It was the hardest thing I had ever gone through, and I had neurosurgery before followed by inpatient rehab but this was much harder, and it was over.  Or so I thought. 
Today I woke with a smile on my face.  I remembered immediately how happy I had been this time last year.  This year I was happy for other reasons. Progress.  It was incredibly hard but I did it. I persevered and it has paid off. So many days the pain was so great I didn't want to push myself. Most days I did. It has been the most disciplined I have ever been, in my entire life.  It feels good.  I have gained so much. I can walk now without any aids, and my balance has improved greatly. I know what it feels like to have pain and do it anyway, although there are days it is so bad I honour it and stop. But stopping today doesn't mean I will not try tomorrow and that is the difference.
I won't say I can't, but I can say I had better not today.
I'm going to sleep tonight with the same smile on my face I woke up with. I'm content I have given it my all and by doing so I am much stronger for it today.
Happy Canada Day everyone, enjoy tomorrow. ​
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Month 17: Baby Steps and Being Accountable

6/27/2016

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​Don't be discouraged by baby steps. I'm running into neighbours these days who are amazed to see me out walking and looking healthy and much stronger. People I don't really know, other than a casual wave are stopping to chat. They want to know how I did it. My only real answer is baby steps.
I know many people, myself included, who try to do something and become so discouraged after only one try that they stop.  I've been there. It hardly seemed worth it in the beginning to go get my shoes on, get ready to go out to only walk to the end of the driveway, cross the street and walk past two houses turn around and come home. Yes, I felt frustrated and dependent because at first, someone had to come with me and my walker, but I did it. 
I think I could have easily said I can't. I'm not sure I would have gotten much flank because I really had to push it to do very small walks. The difference was I knew if I didn't I was settling for what I had, and that was very little mobility. It wasn't an option. Not if there was a shred of chance that I could make it better in some way. So I tried, then I tried a little more each day. I knew I couldn't let myself off the hook, this was far too important. I've had many times in my life when I have taken the easy way, given in to laziness, ate too much of the wrong foods, indulged too much;  this couldn't be one of those times.  This was a time to step up and do the right thing, not the easy thing. When I think of those very cold winter mornings when I got up put on a bating suit and headed to Physio I can feel proud. It accomplished a lot. So that is how I did it. Baby steps, and holding myself accountable
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Month 17, Get Moving

6/24/2016

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What holds people back more from living their lives more than pain?  Fear, is the answer. Fear holds all of us back from getting what we want out of life at one time or another. Sometimes the fear of pain is far worse than having the pain itself. It can be crippling.
I've heard from so many people that after an injury, joint replacement or recovering from an illness that they can't really move on. They continue to see themselves in the role of "can't."
Of course everyone is different, recovers differently at a different pace,but if you're honest and want to move on, ask yourself the real question; is it fear that is stopping me.
I have many friends, relatives and readers who have had hips replaced.  The degree to which they use that new hip is as different as the person who owns it.  My friend had his replaced then had the second one replaced. He went to Physio for quite a while and went to the pool several time a week to work at walking in the water.  He is the one with the best results I have seen in anyone.  He was able to do so much with his new hips. Things he hadn't done in years.  He walks, hikes, swims, and exercises daily. He has even water skied but won't take a chance doing that on a regular basis.  He is proof of how well it can go.
Then I know people who have had replacements who didn't do as much while recovering and now cannot do as much as they would like.  I have seen the same scenario with knee replacements.  One of my neighbours had a replacement and as soon as he was home he was out for very short walks daily, the Physio and finally, fully functioning knees.  Another neighbour babied his and didn't walk. Went half heartedly to Physio and still ten years later has a stiff painful knee.  The sad thing is it doesn't have to be this way.  Don't let fear or fear of pain hold you back.  If you want to live the life you want, then you need to face it head on and put the fear away.
As adults we get to choose wether we do what's best for ourselves or take the easy way out. Taking the easy way out in times like this is setting yourself up for failure. We need to push ourselves as though we would push our kids or a friend to get better, to do better.  This is true of weight, exercise and so much more. Giving in the the child inside all of us that says "but I don't want too" is easy. Being the adult and speaking up to say, "but I have too". That's the hard part.
Everyday I get up I really don't feel like walking. I hurt, I'm stiff and my balance is not great.  I can easily talk myself into not going. Some days it's hot, or I have the ill do it later feeling  My secret weapon is a memory.  I remember being in that rehab bed last year, having to wait for someone to help me into a wheelchair to move.  When I think of that I get myself ready and go. I'm fortunate. I may have pain, and my legs are weak, but they are working. They came back to me again, so I can't give up on them now.  With that I'm out for a walk, to soak in some of this beautiful sunshine. Happy Friday everyone.  Go get your vitamin 'D'.



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Month 17, Caring for Others

6/22/2016

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When it has taken all that you have to care for yourself it feels so good to be able to care for others and put their needs first. I was able to do that this week. With, I might add a lot of help from my husband and family.
My brother had planned to visit me last summer after my surgery. He had booked a ticket when we found out I would be requiring a second surgery.  He changed the date of the visit to after the surgery and recovery, only to be told I had to go for surgery once again at that exact time.
It's been a year. Throughout that year he and I have talked about him visiting and us being healthy and well enough to go fishing together. He has chronic pain as well so we have been through our struggles. In the meantime our Mother has died and it felt like a very challenging year.
The time had come for Pat to actually make to my place. My sister came from Ottawa to join us for a couple of days and my daughters came home on the weekend to be a part of the visit. It was a great week.
It was fantastic in a lot of ways. He was able to see how I deal with my pain and restrictions. Having been to pain management, Mindfulness meditations for pain and every practitioner I have learned a lot and was able to pass it on.
The most helpful advice I think I can give anyone who is dealing with chronic pain is to not allow it to become your life or let it define you as a person.  You are not your condition and your condition is not you.
I remember someone saying once that they had MS, but MS didn't have them. That really stuck with me. There are days when it is all about the restrictions and pain, but those need to be few.  Making the most out of what you can do whether you have pain or not is so important.
We walked to parks around the city all week long. We fished and went for boat rides to watch the sunset, and sat at the bottom of the waterfall, cooked great food and we enjoyed each other's company.
Life is about making wonderful memories. Some days you may have to dig a little deeper to do that but where there is a will, there is a way.


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Month 17. Taking first steps...again

6/7/2016

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A year ago today I worked my new physiotherapist at a rehab centre to get up out of my wheelchair and take come steps with a walker. I remember having to remind myself that my feet would actually be on the floor even though I couldn't feel that connection. I had a walker in front of me and her right beside me. I knew I could do it. What I also knew even before I attempted to stand and walk, was that it would require blind trust in myself. You see, I had done it before. I had felt a feeling most people never feel. When you are asked to stand but can't feel your feet. Your body says okay, but your mind is panicked. It feels as though you have stepped out of an open window. No different. There's nothing connecting you to your feet and the floor. Except blind trust.
I did it. Once upright my head felt dizzy, my legs were shaken and my feet felt disconnected from me. I did however push through. I walked halfway down the hallway. When a patient, nurse, wheelchair or walker was approaching in the opposite direction I had a silent scream inside of me. It was the most out of control feeling I had ever experienced. I didn't have the whole thing figured out yet, and I felt so off balance and vulnerable that I thought I would fall at any given moment. It's a process and not an easy one, but I'm here today to tell you it works. Fake it till you make it, I did and I am.
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Month 17. Im having fun and motivated!

6/3/2016

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On Mother's Day I received a very interesting gift from my daughter Jerri. She bought me a Jawbone UP. For those of you still in the dark, like I was, about personal tracking devices; it's a small band I wear on my wrist that counts steps, tracks sleep and much more.
This has been fun. It's one of those gifts I didn't know I wanted. I will explain it and how it works the best I can.
It is set up through an app that is connected to my smart phone. It has many features such a meal tracking, setting goals and reminders, but for now I'm focusing on sleep and steps. It's very good timing for me to receive this because having walked and exercised all fall and winter and I was losing some motivation. This has brought my motivation back and then some. All I had to do was charge it put it on my wrist and set up the app on my phone. It asks a few questions and away we went. Now as long as I'm wearing it, it tracks my steps, and my sleep and tells me when I'm inactive and so on. I love it!
What I have learned already is I'm not as inactive as I thought I was. I rest a lot throughout the day and therefore thought of myself as sedentary, turns out I move more than I thought. Secondly, I have been reading a lot about sleep and our attitudes and desperation for more sleep. I had already decided to be more vigilant about my sleep. This jawbone is awesome. It practically tells me whether I will need a nap or not that day.
It follows your sleep patterns throughout the night, how many hours of deep sleep and light sleep as well as how long you spent awake. So no question, it helps you make solid decisions.
It can be a great motivator as well. There is a system in which you can have it vibrate when you have been sitting too long. For those of us with muscle and joint problems that is a great reminder to get up and move around if even for five minutes. If you are competitive as I am, then it is fun to compete with yourself and do more than you did the day before. There is also a group setting in which you can find friends or just other jawbone users to connect with share tips and offer challenges. I'm not there yet, but who knows I may be one day. For now I'm enjoying the feedback and it has put a wonderful spring in my step.
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Month 17. A little humility goes a long way.

6/3/2016

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It's that time of year when you see all of the neighbours once again. The sun is shining and when there's a breeze it is a lovely warm one. I have enjoyed reconnecting with everyone. The most common comment is how good and strong I look. As we went into fall I was still pale and weak. I spent the fall and winter at weekly, sometimes twice weekly Physio sessions and worked daily on my exercises. It has paid off. One neighbour told me I encouraged her and her husband to get out and get moving. When they saw me with my walker, then two canes out there daily they knew they had to get out too.
It's funny, many of those days I really had to talk myself into it. And I certainly had to swallow my pride to get out there with a walker. There's something humiliating about needing it but it sure helped me move things along faster then if I had to do it without one.
I have learned to embrace those things in my life that help me live my life fully. Instead of resenting the fact that I take medication, I am thankful it can help me feel well to be able to be with those I love and do what I love. I came to think of the walker the same way. It is a means to an end, it got me going and kept me safe. A little humility goes a long way.
So if something is holding you back, don't let it. Take you pride and put it aside. Don't wait to lose weight to enjoy the summer fun, put that swimsuit on and take part in life. Use a walker, cane, medication, handicapped sticker, whatever it takes to be a part of life. It's your time get out and get moving.
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    Maureen Clout

    I'm going in for a 4th neurosurgery; this time it's a repair to my lumbar fusion. Here, I will post my daily updates on dealing with diagnosis, surgery and recovery. Join me on my journey.

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