Pain Fog: Living in spite of Chronic Pain
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Day 49. Tomorrow is Day 50!!

4/12/2015

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Tomorrow marks day fifty of my blog. My intention when I started the blog was it would be daily until the surgery date then weekly thereafter. We thought it would be about thirty daily posts, before I switched to weekly. Since my surgery isn't going to happen in April it has meant I continued. I will see where it goes from here, however I want to tell my readers a little bit about who else is reading.

To my surprise there are people reading from forty six different countries! Forty six! That has really kept me writing. Hello to China, Russia, Egypt, United States, Japan, Italy and to the other forty countries, I appreciate you being a part of my journey, and I sincerely hope you stay along for the ride.

Most of my blog visitors have come to me from those of you who have shared my link on Facebook. So thank you for doing that. You may not be in pain yourself but you never know who around you will benefit from the blog. So I am humbly asking if you would share this link today. Remember not all disabilities are visible so there maybe someone reading you page who could benefit.

We are very close to the one thousand reader mark and we thought it would be fun to try to reach it this week. We currently have 952 readers on a regular basis. She this week, share, share, share and let's see if we can reach one thousand. (Click on the Facebook or Twitter icon below to share).
With the physical limitations I have it is fun to be able to reach out to all of you through writing. Knowing I have all those people curious about what I have to say adds interest and responsibility to my day.
I want to thank those of you who have taken the time to leave comments, either privately or on the blog. Knowing you enjoy what I am writing and can learn from some of my experiences makes it very worthwhile.

Finally a positive attitude is more than just glossing everything over, we know that. Together we will stay positive while being real. I look forward to moving forward with all of you and hopefully some of your friends.
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Day 44. Rain Must Fall.

4/7/2015

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When spring arrives the sun seems hotter, the snow seems dirtier and the pavement seems sandier. That is until the rain comes. The harder the rain, the faster the real beauty of spring can peek through. It is only then we can see the colours of new growth, budding flowers and bright blue skies replace the dullness.

That's how I look at the process of chronic pain. You live in the drudgery of it for so long, then there's a diagnoses which gives a glimmer of light. That light can't be fully exposed until the rains come. The rain is the surgery, procedure or treatment followed by the hard work of recovery. At the end of all of that is the reward, but you have to deal with the dirt, mud and everything in between to get there.

Summer is on its way, literally and figuratively in my life. I'm not looking forward to the rainy part but I know it is necessary.

"Into each life some rain must fall." - H.W. Longfellow.

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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 19. Readjusting. 

3/14/2015

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I would certainly say this is a readjusting period for me. I had a surgery in September that was not easy, but it certainly left me feeling better than I had felt for years. That was for about a month. I was basking in the feeling of having fewer restrictions. I could sit longer, stand longer and walk longer. I wasn't anywhere near going to the gym or living like the average person my age but compared to before the surgery I felt wonderful. I was truly grateful for the break from constant pain.

That changed for me on a beautiful fall evening when I decided to get out of the house with Jerri and Barry and of course Whinnie. We had a goal of a fifteen minute walk. It wasn't long into the walk when I went over on my ankle in a very unusual way. It wasn't a trip, I hadn't stumbled, it just happened. What was even more bizarre was as I was looking down at it I couldn't make it move. My ankle stayed that way for what seemed like an eternity, as much as I tried to fix it, it didn't co-operate. Finally I was able to stand again. Barry and Jerri questioned what had just happened, wondering what I had tripped on. Secretly I knew there was a problem, my swollen sprained ankle was the very least of my concern.

When you have a spinal cord injury the signal sometimes doesn't get to the brain. This can mean a quick mishap, like a fall, or I can't always pee when I need to and various other things. It usually corrects itself fairly quickly.

This was different because it left me with back pain, leg pain, and inflamed nerves. I tried to carry on with the hope I had before this happened.

When I went to Toronto for my surgery follow up, the cat was out of the bag. After a brief examination it was clear that I was dealing with a bigger problem. Nerve conduction testing, MRI, and neurological testing confirmed that there are many different areas of nerve entrapment and two discs that have to be removed and replaced with artificial discs as well as rods and screws. For all you medically inclined here is the link that shows an animation of the procedure. 

This is a big surgery, period. However for someone with a spinal injury it adds risk and the recovery is much longer.

This is not the outcome I wanted, not by a long shot. It is what I have to do if I want to try to experience that elusive feeling of freedom I experienced this fall. It was a short period of time but it left me wanting more. I want to have a little more freedom, a little less pain and most importantly not live under the threat of paralysis. Choosing not to have the surgery would be a wait and see game and I'm a proactive person, so surgery it is!

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Day 18. The joke is on him!

3/13/2015

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Today is about doing my best. Barry has been encouraging me to go to Aqua Fit classes for a while now, and so has my doctor if the truth be known. I'm not totally against it, it is just that I have a number of legitimate excuses as to why not.

I guess the first is my deep seated memory of being in spinal rehab and spending hours in the pool as part of my rehabilitation. The second is that I don't really like getting wet, unless of course there is a sandy beach involved. The most compelling reason is, this winter it actually hit -40 Celsius here. Now seriously folks who would want to leave their cozy fireplace in the family room, in the dark of night, which arrives at 4.30pm and get into a pool. Not me!

Pain and lack of sleep are also not the best motivators so I have been dragging my heels.

On Saturday the clocks changed and it is almost 7.30pm before the sun sets. The temperatures are all above zero and the sun has been shining for days. So what was my most legitimate reason is gone.

I had been asking my Physio if I could try yoga again right up until about a month ago and at that time he said I was close but not ready. He doesn't have to tell me now, I can't even do most of my Physio stretches anymore. But I know for sure yoga is one of the things I'm looking forward to most when I can do it again. I asked about Aqua fit, I got a tentative okay, but don't overdo it.

I saw my doctor and asked about Aqua Fit, he laughed and told me to be careful but to give it a try. I had to laugh back because he said for safety sake to make sure Barry is with me!

We had our first session and I lasted twenty minutes of a 45 minute session, and I have to admit is was painful even though there was no impact. I spent another twenty minutes in the therapy pool and tried to keep moving slowly. The next day I was a little worse in the morning but absolutely no bad affects after that. Guess where Barry and I are headed again tonight?
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Day 17. Link between emotions and pain.

3/12/2015

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One of my readers pointed out that she doesn't have physical pain, but does have more than her share of emotional pain. From what I am learning though my own research and the Mindfulness course I am doing, there is a very strong link between both.

Those of us who feel more physical pain (in particular fibromyalgia patients) can usually track back to its onset, and see that we were dealing with a very difficult time emotionally. So what I want to say to those reading who live with chronic emotional turmoil, do your best to deal with it, or else you may be adding chronic physical pain to your emotional distress. In fact there are people in our chronic pain class that are there for emotional pain alone. Meditation does help both. In his book The End of Stress as We Know It, Dr. Bruce S. McEwen, states that prolonged or severe stress can actually weaken the immune system, strain your heart, damage memory cells in your brain, and deposit fat at your waist and buttocks which is a risk factor for heart disease and cancer. Stress also has been implicated in irritable bowel disease, aging, depression heart disease, rheumatoid arthritis, diabetes, just to name a few. So having stress as an inevitable part of your day is not to be taken lightly. You are setting yourself up to become sick.

The sun is shining and that helps with mood especially after the long winter we have had. Although I can't go for a walk, I think it is only a short time away till I can sit on the deck while writing and reading.

I have also recently learned that taking vitamin D can help with chronic pain. It appears as though this vitamin has many benefits. We all know how it affects mood and is said to help prevent cancer - and now pain relief. It is worth looking into. It is effective only when taken in large doses so you need to read the specifics around it before taking it. I have heard from a doctor not to take it if you have sarcoidosis or are prone to kidney stones. So unfortunately that leaves me out.

With spring around the corner I am finding myself feeling the hope of a good summer. I love to garden, fish and be out on the boat taking pictures. That's my goal moving forward, to think about what I want for the future and plan on it.
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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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    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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