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 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 30. Proving Pain, While Staying Positive. 

3/24/2015

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Researchers have yet to find a way to prove the intensity of someone's pain. Yet we, as patients, are asked on many occasions to do just that. Prove that the pain we are feeling is real and debilitating.

In their paper Proving the Existence of Chronic Pain doctors, Steven G. Yeomans and Jeffrey E. Fitzthum state, "Proving the existence of chronic pain is a challenging task, given the wide variety of patients who present clinically with chronic pain, the large volume of medical literature, and the controversies among professionals. The more that is learned about chronic pain, the more the controversy seems to intensify".

Professionals can't prove it -- yet patients are asked on a regular basis to prove their pain. What is wrong with this picture?

Two of my readers have talked to me this week about the frustration with this. One is being visited by a rehab specialist this week to see if there is "anything" she can do to become employable again. It has been months, she has been seen by two medical doctors, a naturopath, a chiropractor and a rheumatologist and has attended an extensive program for pain management. In each case, nobody suggested she go out and find work, they have agreed at this time she is unable to carry out duties of her job. We go through all of this and mountains of paper work all while being the most vulnerable of our lives. On top of that we are visited by people whose only agenda is to get the insurance company's piece of proof that you can indeed work again.

Another reader has been off work for two years, and has done everything in her power to get back to a job she loved. She has had a very difficult time accepting that this is how her career ends. She too has been to countless medical doctors, physiotherapists, osteopaths, naturopaths, the top pain management doctor in Canada and attended not one, but two pain management programs. She too was visited by the insurance company's representatives to access her abilities, and will be examined by an independent doctor.

I'm not saying that we all deserve to leave work and be paid just because we say we have pain. What I am saying is, nobody knows what a person in this situation goes through. It is difficult enough to accept that you cannot work and are forced to retire, then there are constant threats of losing your financial independence.

All of this happens at a time when you have been off for a while and reality is sinking in that you may never work again. Along with that comes the realization that there are many things in life you may never do again. It is a complicated thought process, which requires time. In the middle of that you probably have a doctor who is not really understanding or too rushed to help you with those feelings, and family who are also mourning the loss of who you were.

For some, depression is a part of chronic pain. According to Harvard Medical School's 2009 Harvard Health Publication, "Some studies suggest that if physicians tested all pain patients for depression, they might discover 60% of currently undetected depression."

That same article suggests, "Pain specialists can improve their practice by learning more about the interactions among psychological, neurological, and hormonal influences that link pain and depression."

It is hard to stand up for yourself when you are dealing with all of those feelings and depressed too. It is easy to give up and not fill out paper work, not answer necessary phone calls, not be a part of your own advocating. It feels a little like kicking someone when they are down.

Canada's public disability insurance, CPP, had an applicant success rate of "43 per cent in 2013-14. Indeed, Canada has one of the highest rejection rates for a disability insurance program among OECD countries." According to Michael Prince who contributed an article to The Globe and Mail on the topic.

So if our own national disability insurance has a rate of only 43%, what then, is the success rate of a private insurance company? I couldn't find any stats on that but you can bet it is not any higher.

The onus is on us to prove what scientists have not been able to prove for years. We are in pain, and we are not able to carry out the duties required to do the job.

There is such a dichotomy here. Everyone tells you to move on, do your best, don't focus on what you can't do, be positive; but if you need the employee insurance plan, you are reminded of what you can't do constantly, and have to prove it.

In a sense, I was lucky. Or at least that's how I choose to look at it. I wasn't working when I got my diagnosis so there was no fighting with my employer's insurance company. It also meant I was left with only CPP which is a pittance compared to what I could have gotten. I left work by quitting, thinking I would go back to work when things settled down. It was a year later when I was diagnosed with a spinal cord injury. To be honest, it was very difficult for me to be without a salary, it added to the feelings of helplessness. I don't think I could have handled dealing with an insurance company on top of everything else. I had a family to raise and a debilitating injury to deal with, and a flurry of doctors and appointments. My hands were full.

To those of you who are dealing with all of that and the insurance company investigation -- I applaud you for your strength, and I encourage you do follow some of these steps.

1. Keep track of doctors appointments, where, when and why,

2. Have a list of prescriptions written out, and photocopied,

3. Keep a point form list of series of events,

4. Have symptoms written in point form,

5. Have a list of what you have given up on a personal level because of pain or illness,

6. List the things you have tried outside of traditional medicine,

7. Have you had to hire help, etc shovelling, cooking, cleaning, if so list it,

8. Keep your lists up to date,

9. Keep your lists out of site and out of mind,

10. Live for today. Don't think about yesterday or worry about tomorrow, see what today will bring.

The reason for all the lists are so you can free your mind and not dwell on those negative things. It is best to be as detached as possible to that. It just is. So in writing it, you have put it aside and pull it out and hand it to those who need it. You don't have to spend the day before an appointment reliving all that negative stuff. It won't make the fact that you have to meet with these people and answer their questions any easier. What is does is make it happen on the day it is happening; not weeks of worrying about it before, and wondering after the fact if you remembered everything.

You are still the same person inside, no matter how damaged your body has become, the essence of you is still there, hang on to it.
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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 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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    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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