Pain Fog: Living in spite of Chronic Pain
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Day 328. Set Backs. 

1/28/2016

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I haven't had a good week. I don't say that often but I can honestly say it has been challenging. I arrived home on Sunday evening having flown from Newfoundland, I was on the go for twelve hours. Much of that was sitting. What I didn't feel at the time was that nerves in both my left and right hips and butt were becoming entrapped. It hit me though the night on Sunday and throughout the week I have been feeling it on and off. A day or two of nerve pain is bad, a week of it is very discouraging. It has stopped me from doing what I want to do, interfered with sleep and consequently it is depressing.
There have been fleeting moments of complete distress, thinking it is all coming back again but I've been able to push those thoughts away for now. I'm thinking it is temporary and it will settle.
I'm not one to wait it out in these cases I have been to Physio, had acupuncture, massage daily, electric stem therapy, heat and rest. It all has helped but the pain returns again. I attended a wake of an elderly person yesterday and I swear I smelled like ligament that was probably attributed to the much older people there.
I'm sure many of us with chronic pain would just like to ask our bodies..." What did I do to piss you off this time?" Then we would never do that again. Well short of exhausting the medical system there is no way to know where flare ups come from. They just do sometimes or as in my case a specific event, like travel is the cause. What we don't know is the magic potion to settle it down again.
Once again I'm left with a hangover of sorts for doing something I really wanted to do. The payment is high, but so is the joy it provided.
This is where I once again see pain and the management of pain much like handling a budget. I want something, I may have to pay for it, physically. I think about it and I make necessary preparations so the payment is not too high then I decide if it is worth it or not. In this case seeing my Mother after a year was definitely worth it.
Here are some tips I found on a blog called Dancing with Pain. She has some ideas that fit very well with my philosophy.


1. Call a loved one. Share the experience and frustration.
Some people need direct guidance on how to respond to what we’re going through. So it might be helpful for us to explicitly state what we need. In my case, it’s usually a loving ear on the other side, listening without judgment; someone genuinely caring, clucking in empathy at the appropriate intervals; a person expressing unconditional love for me; a cheerleader stating faith in my ability to transcend the latest ordeal.
2. Exorcise the negative feelings, through creative expression.
For me, blogging is a way not only to get out my feelings, but also to connect with others going through the same thing — thus reminding me that I’m not alone. Doing something positive with the negative experience also makes me feel powerful, at a time that I otherwise may feel out of control in my life. Whether your personal mode of self-expression is music, art, writing, or acting, do what you can to release the setback into the universe and create something beautiful from it.
Of course, our setback may itself limit our ability to self-express through our usual mediums, so we may need to get creative in adapting our typical mode to our current circumstance. Approach that creative process in and of itself with an attitude of creativity, joy, and self-expression.
3. Lay low and rest as much as possible.
There’s no way around it: When our bodies get injured, we have to retreat and lick our wounds. The more we put off the process, the longer it will take for us to heal, and the more chance our healing will be compromised. So wherever possible, cancel meetings, decline invitations, and crawl into bed with that post-apocalyptic-size ice pack and/or heating pad.
4. Pull out all the tools from your chronic pain toolbox.
I dislike taking supplements and vitamins multiple times a day, every day. So when I’m in cruise mode and staying out of pain through dance alone, I avoid them. But when my pain levels get jacked up, I pull them out again, knowing they help take the edge off and get my pain levels
under control. I also make a point of dancing, however gently, taking hot baths or showers, using anti-inflammatory ointments, giving myself and receiving from others energy healing sessions, and (wherever possible, through payment or barter) getting bodywork from practitioners I trust.
Be sure to keep a list of the tools in your chronic pain toolbox. I know that when my pain levels get jacked up, I have a tendency to forget everything but the pain; so I need an easily-accessible reminder. Keeping the list on the refrigerator, I have found, is not a bad idea!
5. Approach the setback as a mini-vacation or catch-up period.
True, I’d rather be windsurfing in Hawaii. But if I am going to do this setback thing, I might as well do it in style. Approaching my setback as a mini-vacation changes the vibe from “I’m stuck in bed” to “I get to luxuriate in bed.” Wherever possible (pain in the head region may make this tough), watch movies, read books, talk on the phone, surf the internet, or relax to music while resting in bed.
Another possibility is approaching the setback as an opportunity to get organized in some low-key ways – taking on those tasks that are perpetually at the bottom of the to-do list. A setback can be an ideal time to go through the closet and organize or purge items, to organize files on our computer, or to look through our wardrobe and put together some new outfits.
The bottom line is that as much as we click our heels together and recite, “There’s no place like home,” we may not be able to power our way out of a setback. By surrendering to the reality of that setback, however, and by approaching it with positivity and creativity, we just might be able to sail through it.
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Day 322. Mothers and Daughters

1/22/2016

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Newfoundland. The cost of admission is always worth it.  I've always been close to my mother but that relationship deepened when I lived with her for four months 26 years ago. It was immediately after my father died. I hadn't planned on it, but I could see how she was struggling with being alone and my siblings were busy with careers and family. It seemed like the right thing to do and it was. The truth is we were both grieving, but after a marriage of 43 years the grief for her was overwhelming. Mine would have to wait.
It was a challenging time but being there to help her though it was where I wanted to be. I moved to Ontario shortly afterward and only saw my Mother at least twice a year on visits after that.
That was until this past year.  Her age and my surgeries made it impossible for either of us to travel.
I had last seen Mom in February of last year, in hospital.  She never went back to her apartment after that hospital stay.  She had a bad fall and it wasn't her first; she was moved to an assisted living home. I felt terrible not being there to help her adjust but with a large family there were plenty of siblings and their spouses to do that.  My back, and especially my legs were so bad I was having difficulty  walking. It was out of the question for me to travel in that condition. I knew it, but it didn't make it easy.  It wasn't  easy to miss a family wedding in July either, but there wasn't a choice. It was a hard year to stay away.
My mother being 88, with a large family calling and visiting her, she rarely called me. That doesn't mean we didn't talk. I called her often. That all changed throughout this ordeal, she didn't want me for feel left out so she called me faithfully and wouldn't go to bed until she did.  So it became her time to help me though, as I had for her all those years ago.
Those phone calls became a chance for us to bridge the gap of the miles we couldn't cross. We laughed a lot and talked a lot about nothing, but it helped us both get on with what life had dealt us a his past year.
On my end, life circumstances left my daughter Jerri and I in the same city while I was recovering.  She is a young woman now of 23, with a serious career and high aspirations. She lives in the city of Toronto and takes part in much of what's offered there.  That is until I was there for six weeks straight.  Her life became work and hospital, then work and rehab with me.  It was one of those situations when you look at your child and realize the competent, compassionate adult they have become.
The same can be said for my youngest Meghan.  She was travelling to see me on the weekends and infused a much needed breath of fresh air with emotional support.  Her tips and talks helped keep all of us sane in the chaos.
Jerri arrived in Newfoundland for the last four days of my trip, it was wonderful to have her there with me and Mom.  We had a wonderful time writing poems and playing games and chatting about life. Life is difficult at times and it is the circle of caring you have around you that gets you though. Caring for someone you love is a gift and not a burden and I like this quote I was given by a friend.
"Compassion automatically invites you to relate with people because you no longer regard them as a drain on your energy." Chogyam Trunpa

I would add....if you truly give compassionately, you are infused with energy and not drained.
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Day 316. Travelling to NL. 

1/16/2016

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Planning for travel is a must.  In my case, the most essential thing I do, is to plan ahead. Planning ahead however doesn't guarantee you will be able to follow through on all of the plans you have made. I'm sitting on a plane as I write this that was almost an hour late leaving North Bay. 
For someone with chronic pain or a disability sitting around an airport all day is a very difficult thing to do. With this in mind I book my flights as back to back as possible, leaving enough time so I don't have to rush for the next flight, but I'm not waiting all day either. Its a fine balance when youre flying right across the country.
This is where my trouble started today. I had left North Bay at 6am. Had everything gone as planned, I would have had a leisurely coffee in Toronto while I waited for my 8 am flight. 
Our plane in North Bay, wasn't ready for take off, the gas truck had broken down, once gassed up we had waited long enough in the ice and snow to require  de-icing. That left us an hour late.  
when you are in a wheel chair you must wait until everyone else has left the plane and they will bring you to your gate. knowing how late i was i canceled it and took my chances, hoping against hope that i could catch my connecting flight to St.John's.  
The best laid plans are sometimes broken for good reasons, and I try to remember everything in life is fluid and you have to remain flexible.  I was today,  my shortest flight had me waking at 4am and heading out the door forty minutes later. While we waited,  we heard there would be a delay.  I was now going  to arrive in Toronto at 6.40, so a delay didn't worry me until we were on the plane and they announced another small delay.  It was 7.20am by the time the plane pulled away. It wasn't lost on me that at that exact moment they were calling a pre-boarding announcement in Toronto on a connecting flight I was about to miss.
  Once in Toronto, I was relieved  when the I saw it was also delayed, but only for fifteen minutes. I grabbed a driver of those golf carts and away we fly through the airport to the gate.  We got there only to be told they had just closed off the flight and there was no way to board me.  I watched as my plane pulled away from the gate.  

The system will rebook in cases like this. I was rebooked on the last flight of the day arriving in Gander at 1am. With countless hours in Toronto airport.  I went and stood in the incredibly long customer service line while two agents helped many people. there was no provision for handicapped people.  I was glad I had my cane to lean on. 
Once there and able to state my case, she was able to squeeze me on an earlier flight, one that got me into Gander at 8pm. I was so grateful. Still four hours in Toronto and three in St.John's. I choose the look at the bright side. I called my sister Val in St.Johns to ask what we were having for supper!!  The bonus is, I got to see her. she came to the airport and we had a great couple of hours together.  My sister Queen was there visiting her so it made it that much better.

It seems no matter how much planning you do to make it easy, you have to be prepared for anything while travelling...


Things I did right


  1. Took my cane.
  2. Asked for assistance 
  3. Pre-boarded each flight 
  4. No carry on only a larger cross body bag
  5. Made sure to eat and drink
  6. Sat and rested alternatively walked and stretched
  7. Took extra pain medication in my carry on in case of lost luggage 
  8. Aisle seat
  9. Very light weight but warm coat, easy to carry but practical when I arrive there.  
  10. Mediate 


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Day 308. Living your best life!

1/8/2016

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Live your best life. It sounds like a cliche, a slogan or a talk show host's catch phase; or at least that's all I thought of it. That is until my recent surgery when I was recovering. I realized early on that I am very fortunate, once again, to be walking. So here I am at this phase of my life feeling like I've been there before. I have. I have had to learn to walk four times in my life. I can consider myself a slow learner, or a lucky woman who has escaped a wheel chair three times now. I feel grateful for the opportunity to continue to be able to walk. It is a lot of work and it hasn't been easy, but giving up is not really an option when you see what hard work has gotten me.

The first time it happened to me was after my spinal cord surgery in 2002. I had been warned that paralysis was possible. I signed the papers with a positive attitude and didn't give it another thought, because that wasn't going to happen to me. That was until I woke and and couldn't feel half of my body. If it wasn't for a fast reacting team of doctors, rehab and hard wok I would have been in my custom wheel chair for life and not the short three months that I was. I can say it was short now but believe me it was an eternity at the time.

My next experience happened quite unexpectedly after my second surgery this year, I woke up from my surgery and while I lay alone in the recovery room I went to move my feet and they didn't move. I felt a hot tear slide down my cheek and swallowed hard thinking this time it may be permanent. That was a long difficult night and you can find the blog about it here.Put link for that blog
That ended with a five week stay in a Toronto rehab centre and thankfully ended with me being able to walk again.

The third time was this past August after my surgery. It seemed as though things were going well when I started to lose feeling in my legs once again. It was another long night of harried phone calls, neurosurgeons testing through the night and an emergency MRI and finally a series of steroids that helped. Rehabilitation in Toronto was recommended once again. This time I felt very strongly about going home and knew I had a physiotherapist who could help me here. 

I have repeated all of this to tell you that living your best life is not just a cliche or slogan. It really is something we should all strive for. It wasn't until my legs were "taken" once again that I really began to see that whatever happened, I had to do my very best, to be my best.

That's easily said, believe me, it is much harder to do. I'd see the sun rise most mornings without a wink of sleep and be in pain almost 100 percent of the time. When the physiotherapist came to my room at the rehab at 9am I wasn't in the mood to be my best self. I had remembered a saying I had heard "fake it till you make it" and I did. I smiled and asked her about her weekends, children anything but complain about myself and situation. Of course I was honest and clear about my symptoms so that she could help me but I was careful not to repeat over and over again what I knew she already knew.

That's not to say I didn't complain, just ask my family. I did because we all have to but there is a limit to how helpful venting is. Even in this blog there are many details left unsaid because if all you do is complain then people stop listening. They have to, to save their own sanity.
While it's important to have people you can really vent with, it is just as important to give them a chance to do the same. It doesn't matter if you think their life is perfect in comparison to yours, they still need to let off steam.

I've been to a few chronic pain groups in the last 13 years. I didn't last. Except for the last one, it was mediation for chronic pain. The difference was we didn't formally talk about our pain and disease. We talked about solutions.

The others were so depressing. Most people came to vent. When you have people in a room like that it is very heavy if all you do is talk about what's wrong. I was having enough trouble dealing with my own pain but to hear so much about their pain over and over again, it felt oppressive.

I'm as empathic as most, my friends may even say I'm more so; but if you aren't solution focussed I'm likely to bow out. It's true some like to bury themselves in their misery and that is not anything I can be a part of. Seeing a light at the end of the tunnel is a must. Even if you don't know how in the world you are going to get there, acknowledging it is there does help.
I remember calling my friend one day and saying right up front, today I feel sorry for myself, tomorrow I will be okay. She laughed and told me I had a right to feel sorry for myself and listened to all my many complaints, then we laughed.

So what I'm carefully saying here is be careful. Be careful of two things; number one how much negativity you spew out into the world without a thought of a solution, and number two, be careful of how many people around you are spreading negativity at you without any interest in a solution. We need to listen to each other, consult and offer some constructive ways of dealing with the negative in our lives. It's also true sometimes we just need to be heard but if that is all you or a friend is ever looking for then you are sucking someone dry and imposing on their goodwill. That's why it's important to have a good hard look at yourself, your friends and family, think about who and what you choose to have in your life.

There's one more thing to say on this subject and that is we all fall on hard times and there are times in our lives when we can't see the forest for the trees, that's okay. In those times cut yourself or your friend a break, but just be careful it isn't going on forever.

So back to "living your best life" it comes down to finding what you can do and doing it and not dwelling too much on what you can't. Be the best version of who you are right now, don't wait for some epic event. Live today, enjoy today and be grateful every day for something.
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Day 300. Happy New Year!

1/3/2016

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Day 300 and the first day of the new year, a significant day for sure. As I look back on the year behind us I know for sure there are better days ahead. We have big plans for this year and ways to implement them. I am looking forward to be in the best shape I can be. I know, I know, it's a choice many people make on this day of the year.
For me this resolution has to be a lifestyle change to help me move forward in the best physical way. I am reminded of my physiotherapist's mantra, he says you have to train hard to play hard. I'm doing it, I have to. There may be more disabilities in my future from the very structure of my being, but I don't want to ever wonder if I did enough to help myself. So many people have joints replaced these days that it isn't hard to look around and see the differences in people.
I have known people who have had their knees replaced and limp along for years afterward. Then I have known others who have had the same surgery and are travelling, climbing mountains and so on. Everyone is different, I realize that, but the common differences I see is that those who exercise and do physical therapy do far better then those who don't, or just give it lip service.
On these cold winter mornings going to Physio is a chore. I would far rather stay at home and not induce the kind of pain Physio causes. The biggest challenge is putting on a bathing suit and getting into a pool this time of year. That is the kind of pain I have to be willing to endure to get to where I need to be.
Wether is is a better body; better job, or better marriage or higher marks at school it all requires wanting it, and a willingness to do the work required to get there. Maybe you will discover what you thought you wanted you didn't really want at all, the cost may be too high. I'm reminded of an article I read which explains this beautifully.
Happy New year everybody, may you want something enough to do the work to get there, because isn't life with a purpose better lived then one without.
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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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