Pain Fog: Living in spite of Chronic Pain
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Day 31. The Unknown.

3/25/2015

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It has been a month since I saw my neurosurgeon and was given the news that another spinal surgery was necessary. I wasn't surprised that something serious was wrong, I had been down this path before. I was shocked however by the extent at which they would have to go to fix the problem.

This wasn't a planned surgery so I am being fit into an already full schedule. That is where the unknown comes from. I have to wait until it all works out to know when the surgery will be. It has made it very difficult to plan. It's been hard enough getting used to the idea of another surgery but the unknown has made it worse.

Another unknown is how long the recovery will be. It is said to be three to six months for this type of surgery, however with a pre-existing spinal cord injury it is not easy to judge. The spinal cord loses resiliency we are told, the more times there is surgery on those of us with injury. It doesn't mean it will not recover, it means there is no clear path.

I was told to prepare for rehabilitation in an inpatient centre in Toronto. It is not a definite, and once again there is no way to tell for how long. We are also uncertain about the areas of the body that will be affected. Will it include the legs, back, bowel, bladder? We are unsure.

To add to the mix of uncertainty we are unsure of where our girls will be when this happens. Meghan, having finished her university year, has applied to jobs in her field in Guelph, Toronto and here. Jerri is applying for graduate schools and jobs in Toronto and abroad.

Given some timelines, Barry may be able to work in Toronto while I recover, but without dates, he's at a loss.

What we do know is very little and much is out of our control. It is a lesson in life, we think we control a lot, but in fact very little is in our control.

I'm very happy I have started meditation and mindfulness because it has helped with the lack of control, and impatience I'm feeling.

What I know for sure is I have a great doctor, in a great hospital and if I need rehab it will be in a first class rehab centre. But I still wish I knew more.
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Day 10. Exhaustion.

3/5/2015

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Today I would like to talk about the exhaustion that comes with chronic pain. I have been so tired lately that it has been very necessary to nap throughout the day. Usually I set a timer and wake up feeling okay after an hour, however from time to time I have a period where one hour will not cut it. Now is one of those times.

My body is very busy dealing with the acute pain on top of the chronic pain, and the emotional pain that comes with disappointment.

Yesterday I thought Jerri and I would tackle one of our projects we hope to have accomplished before surgery, however at 1pm, I was all but put to bed. Everything I touched I seemed to drop, and I couldn't finish my sentences and I was a bit of a mess. Time for a nap.

The timer came on and I promptly turned it off after the one hour. After three hours I dragged myself from the bed feeling worse then when I got in it. Some days are like that. Once I got up, washed my face and did some stretches, I did in fact feel much better. I especially felt better when I went to the kitchen and saw that the pot of chilli I had started was finished by my girl, and simmering on the stove. She had also cleaned out the freezer. A much needed job that I could not tackle. She's been so awesome.

Last night I went to bed my usual time and sleep well. So, who needs that much sleep? Well yesterday I guess I did. The same is true when I wake very early morning or can't get to sleep at night. I read, meditate or lie there and think.

That's my approach now, especially with mindfulness, I do not judge or give a negative or positive to it, it just is.
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Day 9. Service. 

3/4/2015

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After an evening with good old friends and a reassurance of their presence, I had a very wonderful thing happen today. A new friend, someone who has come into my life because of another gift in my life, my dog Whinnie, called and we had coffee.

She runs the Pet Therapy program at the North Bay Regional Health Centre where Whinnie and I volunteer. We have gotten to know each other through the program and it turns out we have a connection that runs deeper than our dogs and need to help people.

I've noticed as I have gotten older I am always interested in meeting new people however making true friends isn't as easy as it used to be. The first time we met was a chance meeting at the hospital, at the pet therapy centre where I inquired about becoming a pet therapy handler.

She and I have a lot in common and besides that she is one smart lady who can teach me a lot.

We talked about mindfulness and the importance of service. We both have had elderly parents transition into a home and watched how people can make a difference. There's a difference between helping and serving. Helping is great, it makes the helper feel good about what they are doing but it doesn't always make the person being helped feel good. It can leave a feeling of 'I owe you', or worse still, guilt. Service on the other hand is something we do without expectation of praise or repayment.

In her article on the difference between service and helping Rachel Naomi Remen states "Helping incurs debt". When you help someone they owe you one. But serving, like healing, is mutual. There is no debt. I am as served as the person I am serving. When I help I have a feeling of satisfaction. When I serve I have a feeling of gratitude. These are very different things".

This is an interesting concept. I know I have felt the difference, and wasn't really sure what it was and why, now I know. While doing pet therapy for instance it is a service. We offer the quiet comfort of a willing dog and never expecting a favour in return, just grateful for the experience of doing it.

I know why we feel such a sense of peace with certain people when we are sick or in pain. They just do things for you without expectation or a fuss. They are doing what you cannot do for yourself and it is seamless. There isn't a feeling of guilt that sometimes surrounds people helping.

I know I will pay close attention to how I help or serve in the future.
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Day 7. Goodbye Winter??

3/2/2015

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I'm thinking we have made it through the worst of the winter. I never thought I would be a person who would say that. I used to love winter. When the girls were young we spent a lot of time outside. There were many igloos build and families of snowmen. Every Sunday we would cross country ski. We took them tobogganing and skating. Let's just say we embraced winter. There were many potluck dinners with other families after our outdoor ventures as well. We were social.

There came a time when bit by bit I couldn't partake in most of those activities however I still accompanied them whenever I was able to tag along. If not, I would met up afterward for the potlucks.

As my pain worsened I wasn't able to do much physical at all, and I needed to nap most afternoons so it became the time when they all went off on some winter adventure while I rested. At first it was such a necessity that I didn't feel left out or that I was missing anything. As time when on, my mobility and pain challenged me more and more. I knew how much I was missing but there wasn't anything I could do to change that.

So getting back to the winter in my life right now, it has become an obstacle to living a full life. With balance issues any ice makes it dangerous. The snow makes it almost impossible for me to get groceries and wheel the cart to the car and I need a cart because I can't carry groceries bags to the car. The freezing temperatures make joints ache. And on and on. What is most difficult is the long hours without activity.

I have started writing and doing writing courses in the winter. I take a meditation class weekly along with editing photos. For now, that's about all I can tackle, but in the past and looking ahead, winter is a great time to try something new.

There are many things that help with pain, one of them surprising is being creatively. So if you have ever wanted to take a course such as; woodworking, pottery, music, painting, photography, the winter is a perfect time to do that. If getting to the course is a problem for you, then online courses offer an array of things that you won't have to leave home to do. Sometimes finances stopped me from taking courses but not now. The Internet is filled with free online courses, some educational and some just for fun. Check out EdX or writersvillage.com or have some fun and Google free online courses. Pinterest is another way to spend some fun creative time.

So the bottom line is theres no need to be bored, there's lots to do right from home. Speaking of which, I have to run and get ready for my pain management/mindfulness course.
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Day 3. Focus.

2/26/2015

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Life never stops when you are having a crisis, however if it is normal life it feels as though it does.  If you  have had a  death in your family you may have looked at strangers going about their day buying groceries, banking, joking and smiling, all the while you are at a dead stop.  It feels surreal that life is going on around you. This "crisis" of mine, was piled up on top of another family crisis.  My 87 year old mother had a very serious fall and has been in hospital for a month.   I travelled across the country to see her and help with the load my family was dealing with throughout her crisis.  It was not very good timing for me as I knew my condition was getting worse and the pain was becoming unbearable.  Coupled with that the fact that my mobility was getting questionable, travel was not advisable.  I had to go.  My need to see her, to be there, and do whatever I could was over ruling the fact that I was having a crisis of my own.

I went to Newfoundland and did have a very good visit with my dear mother.  A visit in which I can feel good about.  I cared for her, fed her well and we had honest conversations about her situation, and above all we had some very good laughs.

That was one of those cost/benefit situations.  I could have easily said I couldn't go and who could blame me.  Those who saw me knew what I was going through, but it was important to me.  I was driven to go and do what I could.  My husband as always is my safety net and as long as I have him by my side I am able to risk.  Risk I did, knowing what I know now, about my condition I am glad I went when I did.  Who knows when I will be there again.

So, life doesn't stop, and it can feel like piling on at times, but take one step at a time and know what it is you want and go for it.  I am sure glad I did. my mother moves into an assisted care home today.


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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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