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 12. Middle of the Night Country Blues. 

3/7/2015

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The 3AM monster had me by the hand last night and was leading me through the darkness into the pit of fear. I had gotten into bed exhausted and then lay there waiting to sleep. It was not happening and I had used all of my tricks. I had taken Magnesium to help me relax, made sure all light is out of the room, I wasn't too warm (which often keeps me awake or wakes me). I had tried the sleep mediations and it was one of those nights that nothing was working. I had been having some pretty big naps so it wasn't a total surprise I wasn't able to sleep through the pain.

As I was laying there I was thinking about the surgery and allowed my honest feelings to surface.

I'm scared. Scared of the pain I will endure and the length of time I will be dealing with that kind of intensity. However what my most prevalent feeling is a sense of defeat. I had always been proud of the fact that I was able to walk away from a spinal cord rehab centre. Walk away! Granted it was with the aid of a walker but I did walk away. These feelings surfaced briefly in the neurosurgeon's office but I had been pushing them down. In the dark of the night it isn't as easy to dismiss or redirect those feelings. Losing mobility changes everything, and I had gotten it back once. So I'm lying there thinking about what could go wrong, and unfortunately I have real life experience of what happens when a neurosurgery goes wrong.

Let's just say there's a reason I don't allow myself the indulgence of self pity, it doesn't go well. Finally I slapped myself across the face, obviously not literally but it woke me up. I realized I was heading down the road to despair with the flourish of a drunken sailor reaching for another rum.

I promptly got up out of bed and texted to see if my sweet Meg was still up studying for exams and walked out to the living room quieting closing the bedroom door behind me. Meg was awake and we had a nice chat and even through we didn't talk in depth, I suddenly didn't feel so alone in the world. The sound of her voice in the quiet of the night brought me back to reality and living in the moment.

The cycle of negativity was broken and I was back on track again but I didn't want to risk going back into that train of thought again. I needed a distraction! I turned on the television and watched the latest episode of Nashville. There's nothing a little music (even though it's country) and drama can't take your mind off. It felt strangely satisfying to be awake watching a guilty pleasure. I thought about making some popcorn, but really, that would be pushing it wouldn't it?
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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 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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Day 2. Rehab?

2/25/2015

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I woke this morning with a feeling of death in the air.

I had to think about why I was feeling like this before even opening my eyes. Then it all flooded back. 

The appointment, the four hour car ride home and the many discussions with friends and family. I had a fitful night's sleep; I had to take extra medication to help me ease the pain of the drive home. It did help me sleep better than I would have, given what was on my mind.

I muddled through the day, not doing very much as I was exhausted and still in considerable pain. I did manage to get groceries with my daughter but then had a three hour nap. I have used meditation in the past to help cope with pain and stress, so I meditated three times today. I can't say I was very mindful but I am faking it until I make it now.

I am stuck on the rehab part of this equation. I had spent three months in rehab after a major spinal surgery over ten years ago and I still have nightmares about it. It was by far the hardest time of my life. Who would ever go back to the hardest time of their lives? I had blocked it out and thought it was in the past and here it is again.....in my face.

My family knows how hard this is for me and they are, of course, trying to look at the bright side -- its their job. After all, the surgeon did say it was only a possibility. It is the best spinal rehab center in the country, I would know what to expect. I did it before and I can do it again...

I don't want to go there, and it is clouding my vision so much I am hardly able to think about the surgery.
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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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