Pain Fog: Living in spite of Chronic Pain
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Day 47. Failure Before Success.

4/10/2015

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I will give brief descriptions here of some of the other treatments I have used, or continue to use. It is not a one size fits all kind of solution, when you have ongoing pain. What works for your friend or family member may not work for you. It may be that you need a different solution. You may also find that what works for you very well for a while, may not be as effective as time goes on. Being open to trying new things and not be too discouraged when they don't work are important factors.

Chronic pain and illness, takes a lot of trial and error. It can be exhausting and frustrating to find the right practitioner at the right time. What I ask is that you bring an open mind but also practice caution, if it is not working for you move on. In moving on, remember that although that method didn't work for you this time it may for somebody else, or for you in the future.

One of the simplest pieces of advice I received was to take magnesium. I remember at the time I was having pretty severe muscle cramping, mostly at night, and my physiotherapist recommended magnesium. I remember thinking magnesium is not going to work for me, she has no idea how bad these leg cramps are. During one of my visits to the rehab hospital, the doctor also suggested I take magnesium. He gave me the scientific proof that magnesium has been studied for muscle cramping and in some cases actually help you sleep better. It was what he said next that was my real motivator for taking the magnesium. He said if the magnesium didn't work that our next step would be injections of Botox into my legs on a regular basis. Suddenly the idea of taking magnesium sounded a whole lot better to me. I started taking it and it worked. Is not a perfect solution and it doesn't take the pain away but it does help relax the muscles. It is a lot easier and less invasive then injections of Botox.

That's just one example of how a closed mind can hurt you in cases where you're not willing to try something. I have to say I'm much more open-minded now. I'm willing to try just about anything. I'm a lot more intelligent and intuitive at finding out what is a good fit for me and what is not.

I feel frustrated by practitioners who won't be clear and honest with the patient. Most are so committed to their own way of doing things that they are not willing to see they can't help everyone with everything.

I went to many doctors before I found out I had a spinal cord injury. I was looking for a solution to the pain and its cause. Almost all of them were quite confident that they had the solution.

I remember one particularly disappointing encounter I had with a naturopath. At first he thought that I had an overgrowth of yeast and I went on the commonly used diet and took quite a number of supplements. With so much eliminated from my diet I did lose weight, therefore I felt better. But the only thing that changed about my pain was it actually had gotten worse. I went back for a follow up appointment and instead of saying I'm not sure what's happening here he proceeded to offer more supplements. He was so convinced that he would be able to cure me that I felt convinced. Moving along to a couple of months later none of the supplements made any difference at all to me and my pain was at an all-time high. The naturopath was clearly frustrated that there was no change in me. So the next line of attack was to ask me to go on another elimination diet. Thankfully shortly thereafter, the medical doctors found that there was a structural problem. I was diagnosed as an incomplete paraplegic with a spinal cord injury. There wasn't anything any doctor could give me to cure that situation. I did, however, go back to the naturopath because I felt it was important for him to know the outcome. I had followed all of his suggestions in the past, I thought I would get a much different response than I did. I was told that there wasn't anything further that he could do to help me and perhaps since I was in the

medical situation that they could help me. I certainly felt disillusioned, but it was an excellent lesson for me to learn; that is trust your gut. What I continue to know for sure is food was not the cause of my pain and I can eliminate anything I want to my diet and it was going to change the amount of pain I have. That's why I feel so frustrated when people connect serious medical situation to what people are eating. I eat a healthy, balanced diet and careful not to jump on any bandwagon with that latest food craze. If my pain was digestive I'm sure I would feel differently about it.

I do want to say here that I'm not speaking generally about naturopathic medicine, because I believe in it. I am speaking more specifically to my situation with this particular naturopath and that time. I have been to naturopaths, and they have been excellent. Let me just say though that I make it perfectly clear that when I am being treated for a condition by naturopath, or any other type of natural practitioner, that is a two way conversation. I will not go on indefinitely while they experiment with many different things. I'm willing to give it an honest effort if it makes sense to me.

Let me tell you a very different story about an naturopath. I met Diana about nine years ago. I went into see her and told her my condition. I was honest about my reservations about naturopaths. I'm not quite sure what she thought about me on her first visit together. I made it clear that I would not be giving up flour, sugar, salt, yeast etc. just to see how it affects me. I asked her to tell me what how she felt she could help me.We had the usual first consultation, and then set an appointment for the next visit. I was very surprised at our next visit that the very first solution she came up with was something I agreed with totally; Chinese acupuncture.

I had had experience with acupuncture in the past. Many of the physiotherapists had used it as part of their treatment with me. I told her that I found it somewhat helpful but it didn't last. She explained the difference between acupuncture used in Physio and acupuncture as used in Chinese medicine. I was going to give it a try. With an open mind, and a caution for knowing when to stop if it wasn't working. That day was the beginning of a very long term relationship. After my first visit, I was a little leery, but in my mind I had committed to at least four treatments before I made a decision. I continued once a week having acupuncture and began to like it more each time. Not only did I feel some pain relief, I felt a sense of well-being that I didn't experience with any other treatment. I'm not really sure when the meditative part of the acupuncture started but it certainly became a big part of my treatment. Diana inserted the needles, dimmed the lights and made sure I was comfortable. When she came back 20 to 25 minutes later she would find me in a complete relaxed state. Many times I went into her office not knowing that I was feeling high strung or stressed and I walked out of there relaxed and able to face the rehabilitation that I was going through.

My relationship with this naturopath is about 10 years right now. I continued with the acupuncture treatments for almost 9 years. She is a very skilled acupuncturist, as I have tried others and have never gotten the same result.

Obviously, we have developed relationship of trust and mutual respect. Over the years I've asked for her treatment for many things. Most of them have been very successful. I'm happy to say that while we discussed dietary options, she never suggested that I do any form of elimination diet.

There have been times over the years when a medical doctor has not been able to solve a problem but my naturopath has. I'll give you one example, my daughter had a tremendous rash it was all over her chest and was creeping up her neck, about to reach her face. We went to our

family doctor and he knew exactly what it was but there was no cure for it. I brought her to the naturopath and with a series of treatments it was completely clear in a week. We were told by our medical doctor the previous week that the rash could last up to three months. She was in grade 3 at the time, you can imagine her embarrassment . She was eternally grateful for the treatment she received and so was I. So I'm not saying medical doctors know everythIng; I am saying I like the term complementary medicine. I feel it's very important to look at all aspects of the self when you're treating a condition. I always talk to my doctor about any other form of treatment. He doesn't always agree but we have intelligent conversation about it. He has seen the benefit of acupuncture through my experience and we learn from each other.

This is a tough subject. I think it's unfair for anybody to say that they can categorically cure somebody if there is no cure for the diagnosis. Number one is buyer beware, even if it's your insurance money be careful that you're not being taken advantage of. We must take full responsibility for our health, and that usually means educating yourself about your disease or condition, without obsessing about it. Choose your practitioners carefully, go in with an open mind, but always remember that trust and respect must be mutual.

So let's talk about some of the other crazy stuff I've tried along the way in my next post.
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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 29. Sensitivity. 

3/23/2015

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Le Nordik Spa in Chelsea Quebec is a wonderfully relaxing place. It has many saunas and hot tubs, along with cooling stations and relaxation and quiet areas. There are a host of treatments available but my sister and I go for the water therapy. It is a full day of wandering to and from saunas and pools. This time Jerri joined us and it was a fantastic day.

I would be remiss if I didn't mention the difficulty in the accessibility of the place. To be fair, they don't claim to be accessible, there are steps everywhere. Having weighed the pros and cons my sister and I felt the front entrance was probably the biggest challenge. She emailed and asked if there was another entrance explaining that we realized there were stairs inside. Inside the stairs have rails and are not covered with snow and ice. Outside there is a series of flat rocks as stairs, beautiful but dangerous for someone with balance concerns.

We were reassured when we got an email with instructions for a handicap entrance and parking in another area. We arrived and had some difficulty finding this "handicap" entrance, but eventually found it.

There was some effort to park, although there were three spaces, there was a large truck unloading supplies right in that area. To make matters worse there was a car parked in one of the spots, idling, waiting for someone. That someone turned out to be an employee who came running out of the building, and jumped into the car.

Finally parked, we went looking for the entrance we were told about which didn't require outdoor stairs. The only thing we saw was a locked door which read administration. Standing there in the falling snow we decided to knock on that door since we couldn't see anything else. A pleasant young woman opened the door and we explained we were looking for the handicap entrance that we had emailed about. She had no idea what we were talking about. She suggested we take the snow covered two flights of stairs to our right. I asked if we could just walk though the administration entrance. Off she went to find a manager, leaving us standing in the falling snow. We weren't even invited inside to wait. I am using a cane now, so not so invisible with the disability.

Eventually, a manager came back and opened the door, and invited us in. We explained we had emailed ahead and were given an alternative entrance. She allowed us to go through the office hall away and up the indoor stairs.

It was a lovely day from that point on, but it is a hard way to start a day of fun and relaxation. Thankfully, I have learned to let it go once I have been assertive about the need for sensitivity.

I was able to spend an incredible day with my sister and my daughter. What more could I ask for? Sensitivity training for staff would be a good start.
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Day 22. What does it take to get a parking sticker? A disability.

3/17/2015

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It seems I've struck a nerve with yesterday's post. I'm not the only one who feels judged while parking in the handicapped spot. Some of you have some pretty awful stories. I knew there was much to be said on the topic from my point of view, but obviously it has affected many of you as well. One thing I hadn't mentioned was the difficulty to get the carts to the car in these winter months with so much snow in the parking lots. It's tough because we can't carry the bags so we need the cart, and yet the cart can't always make it through the snow. Even when we are able, it can hurt to push it.

While we are on the topic, let's talk about a few other things that are difficult. I have known for quite some time now that a heated therapy pool is excellent for pain and mobility. In fact on a recent trip to Arizona I used it daily to help with pain and it was very effective. I found before my day started I could get into the hot tub for about twenty minutes with my coffee in hand, and I would feel much better when I got out. After the day was over and we had dinner, I usually lead the willing group right back to the hot tub to warm my weary bones and muscles. It's quite a pleasant way to get pain relief. Of course it didn't take the pain away fully but it made it more bearable.

Why then don't I take advantage of the lovely facilities at our local YMCA has? There is a full sized therapy pool with a whirlpool on one side and an exercise portion on the other. It was there 13 years ago when I came home from my first surgery. It was in fact, a written part of my release that I use the pool twice a week. It was recommended that it be a therapy pool with the temperature of not less than 95 degrees.

At first the knowledge that we had this facility available was very impressive. When I set myself up to use it, my doctor, Physiotherapist and I were a little shocked. The "therapy pool" was not set at 95 degrees, because .........wait for it...that was too hot for the babies. Babies in a therapy pool you ask? Yes every day, and every time of day it turns out. I love babies and I love being close to them but this is not the setting.

The facility has four pools. There is a general large pool with a normal temperature. There's a children's pool, which is a little warmer, and then there is a toddler and baby pool, which is warmer again. So why then is it imperative or even allowed that the moms and babies dictate the temperature of a therapy pool? I'm confused about that but that is how it is.

Another concern for me was to be in a pool with several babies in diapers. This can mean a risk of infection for someone who is very susceptible to infection in the first place. It was very difficult to stretch and do the routine required by my Physiotherapist with a host of moms and babies in the pool.

Walking to the showers is always a challenge with the wet slippery floors. Then when I get to the shower, often the handicap shower with a bench to sit on is taken by a family. I understand, believe me, I know showering toddlers after swimming is not easy, but neither is standing without the needed safety handles in a regular shower.

Then there's the case of public stairs. Many times I have been walking down a flight of stairs carefully using the rail and people are stopped talking right in front of me, leaning on the rail or just sitting on the stairs. I get a quick look and they go on with their conversation. Manoeuvring stairs is a tricky business. And those of us who can still do it need the rail, and we need not to be forced to stop half way done. Proprioception is a strange thing. I learned about it the first time I tried to stand when I was paralyzed. So what it means in my terms, is where you are in space. And an incomplete paraplegic doesn't have good proprioception. I would suspect some

of you with MS may not either. Our feeling does not always go right to the floor and attach to our feet. Therefore we need to be in continuous motion, as much as possible while going down the stairs. Try explaining that!!!

"Excuse me, my proprioception is acting up would you please move?" I don't think so.

There are challenges everywhere and challenges most people don't see, but the fact that I can walk, drive and get out on my own most days is enough for me. I will accept these challenges and try to be polite and light hearted as I enlighten those who want to be enlightened, and then just forget about those who don't.
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Day 21.  Pain, the invisible disability.

3/16/2015

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I used to like shopping. I even liked grocery shopping. I always went on a Tuesday morning to get food for the week and then Friday morning early, to top up for the weekend. It was nice because the store was never very busy at those times and it wasn't too difficult to get a parking space. I would start with a list, coffee in hand and take my time.

That has changed a lot for me in the last year because my mobility has become so compromised. I need to park close if there are close parking places available. If not I use the dreaded handicapped parking with my parking pass. Here's where the negativity begins. I often get a look from some stranger who is deciding whether I am disabled enough to use that space. Once, just once I would like to say what is on my mind.

"Old man, you stand there and judge me yet I am half your age and my legs are in worse shape than yours. I have a spinal cord injury, a lung condition, and a knee that needs to be replaced. Just to name a few. And you stand there on your two good legs trying to make me feel worse about myself"!

Of course I don't say that. I smile and walk away and let him or her think whatever they want to. I can't deny it hurts and that’s the reason I don't often use it. So if you are shopping and see a younger person in a handicapped area please don't make assumptions. We may look good, but wait until we come out of the store and make it back to the car, that's a different story. Let the police look after those who offend this law.

That brings me to another point. It's the invisible illness curse. Many people live with a disability you can see. It is impossible to hide a wheel chair or canes etc. When you have an incomplete spinal injury there is no wheelchair, thankfully. Believe it or not that comes with its own set of problems. I cannot stand for any length of time or walk for very long stretches. I have to say that in every situation. It brings the conversation back to my disability when I would rather talk about anything else.

I'm not alone; there are others who have the same problem to deal with. Many who have MS, Fibromyalgia, cancer, etc. can look normally healthy on any given day. It doesn't mean that they don't need extra provisions made for them to be able to attend an event or get through the day.

My theory has always been to stay home if I don't have the energy to at least fix myself up a little. I often try harder if I feel bad the more dressed up and put together I am, probably means I'm in a lot of pain. Then somebody will inevitably say, "You look great". Don't get me wrong, I love to hear that, but as every chronic pain sufferer will tell you there's a "You look great!" and there's a "You look great".

We hear what your saying by the look on your face. We read your sincerity and appreciate it, but we can also read the look that says, you're not sick, in pain, or suffering in any way. Now to some that may sound a little crazy, but to those who have experienced this you know exactly what I mean.

The bottom line is there are people who love and support you and there are people who question whether you really are struggling. If you haven't experienced chronic pain, it is difficult to imagine getting up and dressed and out to an event, if you are having pain. The person judging you may have only experienced pain in an acute situation. When you have acute pain yes, you generally stay home and don't fix yourself up to go out. Chronic pain sufferers know if we have that attitude we won't go anywhere. If you can manage it at all, it is best to do what you can to get out in the world. We know that, they don't.

It is up to you to surround yourself with those who support you and do their best to not focus on the pain, but help you live the life you want to.

Don't let a stranger steal your joy, don't let the judgement of an acquaintance ruin your night.

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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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    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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