Pain Fog: Living in spite of Chronic Pain
  • Home
  • About
  • Blog
  • Resources
    • Body Scan
    • Trial and Error
    • Relationships
    • Parenting in Pain
    • Mental Health
    • What the Doctors Don't Tell You
    • Travel
  • Contact

Day 44. Rain Must Fall.

4/7/2015

2 Comments

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

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

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

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

Picture
2 Comments

Day 31. The Unknown.

3/25/2015

1 Comment

 
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.
1 Comment

Day 30. Proving Pain, While Staying Positive. 

3/24/2015

1 Comment

 
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.
1 Comment

Day 19. Readjusting. 

3/14/2015

0 Comments

 
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!

0 Comments

Day 12. Middle of the Night Country Blues. 

3/7/2015

3 Comments

 
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?
3 Comments

Day 11. Waiting or just being?

3/6/2015

0 Comments

 
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.
0 Comments

Day 7. Goodbye Winter??

3/2/2015

1 Comment

 
I'm thinking we have made it through the worst of the winter. I never thought I would be a person who would say that. I used to love winter. When the girls were young we spent a lot of time outside. There were many igloos build and families of snowmen. Every Sunday we would cross country ski. We took them tobogganing and skating. Let's just say we embraced winter. There were many potluck dinners with other families after our outdoor ventures as well. We were social.

There came a time when bit by bit I couldn't partake in most of those activities however I still accompanied them whenever I was able to tag along. If not, I would met up afterward for the potlucks.

As my pain worsened I wasn't able to do much physical at all, and I needed to nap most afternoons so it became the time when they all went off on some winter adventure while I rested. At first it was such a necessity that I didn't feel left out or that I was missing anything. As time when on, my mobility and pain challenged me more and more. I knew how much I was missing but there wasn't anything I could do to change that.

So getting back to the winter in my life right now, it has become an obstacle to living a full life. With balance issues any ice makes it dangerous. The snow makes it almost impossible for me to get groceries and wheel the cart to the car and I need a cart because I can't carry groceries bags to the car. The freezing temperatures make joints ache. And on and on. What is most difficult is the long hours without activity.

I have started writing and doing writing courses in the winter. I take a meditation class weekly along with editing photos. For now, that's about all I can tackle, but in the past and looking ahead, winter is a great time to try something new.

There are many things that help with pain, one of them surprising is being creatively. So if you have ever wanted to take a course such as; woodworking, pottery, music, painting, photography, the winter is a perfect time to do that. If getting to the course is a problem for you, then online courses offer an array of things that you won't have to leave home to do. Sometimes finances stopped me from taking courses but not now. The Internet is filled with free online courses, some educational and some just for fun. Check out EdX or writersvillage.com or have some fun and Google free online courses. Pinterest is another way to spend some fun creative time.

So the bottom line is theres no need to be bored, there's lots to do right from home. Speaking of which, I have to run and get ready for my pain management/mindfulness course.
1 Comment
<<Previous
    Picture

    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.

    About

    Archives

    April 2017
    March 2017
    February 2017
    January 2017
    December 2016
    September 2016
    August 2016
    July 2016
    June 2016
    May 2016
    April 2016
    March 2016
    February 2016
    January 2016
    December 2015
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    April 2015
    March 2015
    February 2015

    Categories

    All
    Bad News
    Chronic Pain
    Crisis
    Daily Life
    Depression
    Doctors Appointments
    Family
    Fear
    Focus
    Friends
    Frustration
    Goals
    Help
    Insomnia
    Laugh
    Learning
    Leg Pain
    Meditation
    Memory
    Mindfulness
    Nap
    Neurosurgery
    Pain
    Pain Management
    Planning
    Preparing For Surgery
    Rehabilitation
    Risk
    Serenity
    Service
    Sleep
    Stress
    Strong
    Support
    Surgeon Appointments
    Surgery
    Toronto Western Hospital
    Travel
    Waiting

    RSS Feed

Powered by Create your own unique website with customizable templates.