Pain Fog: Living in spite of Chronic Pain
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Day 20. Take your own advice. 

3/15/2015

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I recently wrote an article about giving things a chance such as medication, meditation and so on. When I was at my doctors last week he was concerned about the amount of pain I was having now and wanted to increase my medication to help until the surgery. As always there's a little sense of defeat that I have to take more, but I was realistic.

I remembered my dear friend who put it in perspective for me when she said what if there was nothing they could give you and no way to control the pain.

What I like about my doctor is he and I discussed it intelligently and decided what was best for any given situation. He has final say as far as the academic parts of medicine are concerned, and I have final say when it comes to the intuitive parts.

We settled on increasing what I am already taking so there would be fewer side effects.

That night I reluctantly took the extra medication. Guess what; nothing happened, bad or good. The following night the same -- in fact I was awake with pain for quite a while. And the third night was no different.

Here's where the mind plays games. I started to think if it isn't doing anything anyway why I am I taking it? Why not just drop it again? I was frustrated and almost ready to drop it when I remembered to take my own advice. A few days before I had written the article about pain management through medication. 

I had written from my experience with pain and the various coping mechanisms I had tried. I wrote....

"First off, you have to be willing to honestly try things, give them time to work for a reasonable amount of time. So many people start to decrease or add medication and other treatments to the mix before they even have given the first medication a chance to work".

Several days later my emotions had taken over and I wasn't even able to take my own advice. Thankfully I came to my senses and gave it a chance. One of the things I love most is live music and we had been invited to a Colin James concert a few months back. That concert was last night. I went and it was fantastic. I have to admit to feelings of envy when the ladies around me got out and danced in the aisle. I wanted to be out there with them, I could show those young things a thing or two? Couldn't I ? Well no, actually I couldn't. I just smiled and watched.

Sure I was sore and had pain, but I would have been sore and in pain at home too. I couldn't go out with friends afterward but I enjoyed what I could do. Had I not given the medication a chance to work, I would have been at home last night unable to spend the night with friends doing something Barry and I love, watching live music.
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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 16. Hospital Day. 

3/11/2015

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Today started in an omg kind of way. I had an appointment at the hospital for physiotherapy one hour before I was scheduled to do a half shift of Pet therapy - at the same hospital.

Let me back up a bit. If you have been reading along, you know I have been having poor concentration because of lack of sleep. I would have never scheduled both on the same day, let alone within an hour of each other.

I haven't done a pet therapy shift in a couple of weeks and really wanted to get back to it, as I know I will be missing it so much after my surgery. The accommodation they made for me to be able to go was so kind. Someone set up for me, I didn't have to walk far, and Mary agreed to take half of the shift so it wasn't too long for me. I was all set. That is until I made the Physio appointment for right before. It didn't leave me enough time in between to go home and get the dog. With a clear head I would have spotted this problem and fix it while there was still time, but blinded by lack of sleep and pain, I now had a dilemma. Once again I am thankful for Jerri. Her young brain put it together for me. She would take me to Physio, bring the dog, and while I was at Physio she walked Whinnie and brought her back just in time for her pet therapy stint. It was fantastic shift that was very busy with a diverse group of doctors, nurses, patients and visitors. Whinnie and I loved being on duty again and it was honestly great to get out of the house and feel the sun shine on me.

I was able to do something I love because of the selfless acts of kindness from others. Thank you Mary for accommodating me and taking a half shift and thank you Jerri for driving me all over. Both of you make it look easy when I know it would have just been easier on everyone, if I had just stayed home. But because you did that for me I was able to be there today to allow many the comfort of Whinnie. Not to mention the sense of purpose and infusion of positivity it brings to my life.
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Day 13. I Miss My Mind the Most.

3/8/2015

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There's a lot of loss with chronic pain. The loss of abilities, the loss of jobs, the loss of independence but somehow for me the loss of credibility is the worst.

At any given time one of my family members can say, I told you that, or you didn't tell us that and I don't have a leg to stand on. Frustrating as that is we have learned to laugh about it when we can.

Yesterday was one of those times. Barry and I were balancing our monthly budget and going through our credit card together to reconcile it. There were some purchases of mine on there and I had money set aside for them. That's were the trouble started. I confidently said I had already given him the money. It was in a small white envelope, I explained. I had been it carrying around in my purse and it was no longer there. I had gone through my purse two or three times. I could picture the exchange. We were in the car I told him, because we were talking about what a great deal I had gotten on the winter jacket. Yes, he did remember the conversation but no, I hadn't given him the money.

Well, I reasoned, if I hadn't given him that envelope where was it?

Then a shred of doubt entered my mind. I couldn't be sure. But when could I be sure really, my mind feels like mush when I'm in pain. Then I did what I often do when I am looking for something. I said a silent prayer, well more like a plead really, to St. Anthony. He is after all the patron saint of lost things. As with so many other times, my mind cleared, I walked into the bedroom, into my top drawer, and pulled out two hundred bucks.

Sheepishly, I walked out to the kitchen and handed it over to Barry. As I apologized he smiled and said, "No problem, I finally win some arguments now that you can't remember anything".

Thankfully we can both laugh at that!
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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 11. Waiting or just being?

3/6/2015

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Waiting. Waiting is a killer. I hate to wait because I love to plan. I like to know what's up for the next few months. I don't like it when our family plans are on hold because we don't know when my surgery will be, other than likely April.

There are a number of things coming up in the next few months that I would love to be able to plan to attend. My mother's apartment will be cleaned out during the next month and I would dearly love to be there for that. I know for sure that won't happen, as I know that will be too much for me at this time.

I can see the family doing this with the memories that surround it and it pains me not to be there.

Our dear friend's daughter who we are close to, is getting married. It is sure to be a grand affair with a ton of sentiment and loveliness. I want to say of course we will be there, how could we not. Unfortunately I'm unsure. I may actually be in Toronto where the wedding is taking place but in a hospital or rehab centre. If that's the case at least my family can attend. Or if not too much of an intrusion, I will in the condition I am in.

Finally, and most complicated is my brother is getting married in a small ceremony in Newfoundland in July. I can see myself there, I can feel us being a part of all of the festivities however we cannot plan on it. We could buy tickets and get insurance, however it is a preexisting condition therefore no insurance company will refund the money if we cannot make it. Having a ticket right now may put as much pressure on me as not having one, so I might as well save the money. It doesn't feel very good knowing my entire family will be there and I likely won't be.

These events are all important to me and not just something I would "like" to do. I have tried to attach the mindfulness attitude to the situation and remember it just is. How can I ask why, there is no answer for that. It just is.

So I will change waiting, to just being.
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Day 4. Life. 

2/27/2015

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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 and it feels surreal that life is going on around you.

This "crisis" of mine was piled up top of another family crisis. My 87 year old mother had a very serious fall and has been in hospital for a month. I had 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 was the fact that my mobility was getting questionable, travel was not advisable. But 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, 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.
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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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