Pain Fog: Living in spite of Chronic Pain
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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 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 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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Day 5. Moving on.

2/28/2015

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I gave myself a deadline.  I could wallow a bit, feel a bit sorry for myself, get all of the negative thoughts out and then I had to move on.  Friday afternoon was my soft deadline and the end of the weekend is the hard deadline.  I chose to do this because if gives me freedom to let it all out but then get on with life afterward.  I have found this to be helpful in the past because I have noticed that if not given a voice the fear, anger, disappointment will raise it's ugly head in some form or another, so I might  as well give it permission.  
Vulnerability is a curious thing.  it is not seen as a positive or even useful emotion in our society.  We are constantly reassured and bolstered up when we are feeling down about anything.  A little soul searching and tears are not the end of the world. I am a honest person, some may say honest to a fault, andI have always felt it important -- yet when it comes to pain, honesty is a funny thing.  When asked "How are you?"  you learn quite quickly who to answer honesty.  Let's face it, no matter how close a friend or family member is nobody, and I mean nobody, wants to talk about somebody's pain all the time.  It is depressing.  I get sick of saying it myself. So I try to be the stoic person who has pain and health issues, but gets on with life anyway. 
 When handed a fresh crisis like this one, I need a little break from being stoic. I need to have a planned break down and let it all hang out, but only for a short time.  It's a slippery slope.  Depression can take hold and you can feel justified in it's existence, so you have to be very careful.  The "poor me's" are unattractive and unproductive so they have to have a lifespan and it has to be short.  

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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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