Pain Fog: Living in spite of Chronic Pain
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Day 244. Longest Day Ever. 

10/31/2015

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Today was weight watchers day and it meant being out of the house by 9.30am. For most of you that sounds very civilized I'm sure however for me it is still a challenge however one that's getting easier. That was a successful venture as I have now lost a total of 4.6 pounds, so it is working. It takes a lot of concentration to pay attention to every bite you put into you mouth, but it does work. Four of my sisters and I are doing it together and we have lost a total of 27.8.
It's great to do it together and I also have a good friend who joins me here in North Bay.
From weight watchers we went for coffee with a friend, then off to another friends for a nice relaxing lunch. I had a doctors appointment which lasted a full hour so by then I was beat. Thankfully Mary is still here with me to help me get around. We had dinner and I fought hard to stay awake until eight. I slept on and off until she put me to bed at 8.50pm. I guess it was a little much for a girl who hadn't been out of the house much in the last month. I did have an excellent sleep though.
I felt a little taste of my former self by being out and about and seeing friends. It will all come back soon but I want to acknowledge how good it feels now. Having something to look forward to means everything.
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Day 243. 9 weeks post op. 

10/30/2015

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Nine weeks post op, which brings be to two thirds of the way to "normal" recovery. I am feeling some major changes in the way I can move and my confidence while moving about. I do however still have pain with movement and certainly more after Physio.
Unfortunately, I don't have just back pain to worry about. I have osteoarthritis in my knee and it has been really inflamed with all the extra pressure from Physio and walking. This week I had an orthopaedic surgeon tell me once again that it is time to have the knee replaced. Thankfully he even agreed that with everything else going on it would be prudent to wait. So wait I will, but in the meantime, I had an injection of synvisc.
Synvisc is a fluid injected into the knee that creates a cushioning between the bones when there is nothing natural left. That's the layman so terms but here's what I found to describe it technically. "The injection contains a gel-like mixture made from a substance called hyaluronan (pronounced hy-al-u-ROE-nan) that comes from chicken combs. Hyaluronan is a natural substance found in the body and is present in very high amounts in joints. The body’s own hyaluronan acts like a lubricant and a shock absorber in the joint and is needed for the joint to work properly." 
It works for me and if you have osteoarthritis in the knee it may work for you too. I was first told I needed a knee replacement eight years ago. I have been managing with these injections and anti inflammatory medication since then. Since May I have not had the benefit of the anti inflammatory because with a fusion you are taken off them. It has been a tricky balance for me. Growing bones, which is required for the back to fuse means no anti inflammatories until the back is fused. It has been a painful process because I have arthritis in various parts of my body which drugs were concealing now I feel all of it. The knee screams at me the loudest. It got really nasty when I started Physio. I knew I needed the Physio but the pain was making it impossible.
My usual orthopaedic surgeon has moved to Ottawa and while he will still see me I'm not willing to travel that far for an injection. With a new referral, I expected to wait forever to see someone. As luck would have it, I called and heard a very familiar voice. It was my previous doctors receptionist who knew my history. Within a week I had an appointment and within two weeks I had the injection. I felt so relieved. He seems to be a good doctor so I'm happy all around.
The injection causes swelling and some pain and requires you to lay low for a few days so no Physio for me this week.
The pain fog has caused me to jumble a few appointments this week and even though I had reminders in my phone the fatigue and pain has thrown me off.
So back on track by next week. I have to be in Toronto next week and the week afterward for testing and appointments. At that time we will know if all is well so far. I'm doing my part, though it is increasingly difficult not to reach or bend or carry, I'm not doing it. I'm walking daily and going to Physio which has given me more strength and mobility. I'm well on my way, provided that X-ray next week tells me everything is still in place. Fingers crossed!
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Day 239. Sharing the Load.

10/27/2015

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There's a switch inside a person who is healing that gains or adds stress depending on who they depend on. What I mean by that is, there's a part of our self defence that becomes alert and at attention when we don't feel safe, when we are alone or in need. That same switch turns off when you're surrounded by those who want what is best for you.
This isn't a conscious thing. It's something we ain't even aware of. I have noticed as the weeks tick by I have days in which I feel I can and should do more. And there are days when putting one foot in front of another seems impossible.
It's no coincidence that on the better days I have had company. First my sister Val arrived and stayed ten days. It was perfect timing just one week after being released from hospital. She was very attentive and I was very immobile and weak. A couple of days after Val left, my eldest sister Queen was here for a little less than a week. I was doing somewhat better but still required a lot of help. At Thanksgiving both of my daughters were here and my brother Jim was here to help out. By then I was doing more but still very limited by my mobility and stamina. There was a week and a bit without anyone and I managed on my own. It was a frustrating week. I can see why now. I was alone, and the little things others were doing for me I was doing on my own or not doing at all. I felt limited every minute of every day. For instance I couldn't go for my daily walk until Barry arrived home from work. By that time of the day I was feeling tired and didn't increase my distance or time. I didn't eat as well either because it seemed like a lot of trouble to prepare a healthy snack etc.
This week my sister Mary is here. It has given me my freedom back. I can challenge myself to walk a littler further. I'm eating very well because when I'm too tired to prepare something, she will. The most important thing is, when there's somebody by your side, you are more likely to focus on the positive and not be frustrated by what you can't do.
It's like splitting the load with your support person. So thanks to my family for being there for me. It meant I could come home to rehab this time and feel the peace of this beautiful community as I move toward better mobility and overall health.
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Day 238. Can I lend a Hand?

10/24/2015

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Today is a better day. I feel as though I fell off the wagon for awhile. I am tired and just want this to be over, but it's not that easy. I realized yesterday how it's the little things that make it so hard. I am walking with walking poles now and while that's an improvement I have to once again think everything through before I do it.
I went to the grocery store with my friend Mary and as we shopped we separated to find the items we needed. I had a cart and feel secure walking with it, so I'm fine. Not so much. I had to put my walking sticks in the cart and they did fit but stick out a little on the side. No big deal right? No, not until I take a corner and knock things on the floor, which of course I can't bend to pick up. Thankfully I have noticed elderly men are quite ready to help at times like this. That was one issue then came the issue of reaching for things. I'm already vertically challenged, I m used to asking taller people to reach things for me but it seems now if something is not eye level I'm standing helplessly in front of it willing it into my cart. Once again asking for help is all that's needed. Funny thing is, asking for help is hard. I'm a social worker and have been helping people my whole life; more importantly, I'm a Newfoundlander, we love to help others. Funny thing is, stupid pride makes it hard to ask for help. I'd be the first to tell others how ridiculous that is, but I struggle with it daily. I'm working on it.
Back to the grocery store. Mary had been looking for me and was right there to help me with my bags and get the groceries into the car and get the cart put away. She has been such a good friend of mine and Whinnie's through this transition.
That situation was a struggle because I hadn't thought it through. I had one the other day that was worse, because I had thought it through and it just didn't work out.
I needed a specific item, and I really gave it a lot of thought. I would drive there after my appointment and do it myself. It should have been quite easy. It is an independent business and in a building on their own. This meant I could drive right up to the door get said item and get back in the car with ease. Not so. When I arrived at the building the owners I soon discovered had parked horizontally on each side of the door, leaving only space to park across the parking lot. I sized it up and almost left. I decided I had made my way there, I would go in. I took my money shoved it into my pocket so I wouldn't have to carry anything got out my sticks and went for it.
I got to the door and they pulled out and were not automatic. I struggled with the door only to see once I was in there was another. Although a small shop nobody seemed to notice how difficult this was for me. I got in to find the employee/owner dealing with another customer. I had been at Physio that morning and knew I didn't have much time to stand. I waited quite a while and wasn't acknowledged, so I excused myself and asked if there was someone else available to serve me. I explained I couldn't stand long, and I just needed my item checked out.
He seemed put out and explained his partner was on the phone and he was serving this other gentleman. Looking at the employee in disbelief the elderly man told him to serve me. He did, I got the item, and I asked for help with the doors. Once again he seemed put out and did not offer to help me. And once again the elderly gentleman rushed over to help me out.
In situations like this I always think my struggle is temporary, what about all those others who have to deal with this every day of their lives. I left that store feeling awful, reminding myself not to let a stranger ruin my day, but feeling badly anyway. Sure I could have just left and would have if I could have gotten the item I bought elsewhere. In a healthier state I would call the owner, which I think was him anyway.
I wrote about this today to draw attention to how it makes the day of someone who is struggling to get pleasant help when we need it, and how awful it feels when we don't. I know I will appreciate that more fully when I see people struggle in the future.
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Day 236. Remembering to see progress.

10/22/2015

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I'm eight weeks post op right now and as with everything in life, time has made a difference. It seems to be a good time to make some comparisons for myself and of course my readers.
Although I feel as though I'm improving at a snail's pace, I'm reminded daily from where I came.
A week or more after I arrived home I tried to pour myself a coffee. I couldn't. I couldn't even lift the half full pot. I almost dropped it. I remember being so shocked by that and feeling such a sense of helplessness. Now I do that daily without a second thought. That's not the only area I needed help.
When I needed to go to the washroom I had to have help to get from sitting or lying position to get up to do so. I couldn't carry anything and take a step, my balance required that I walk with complete attention and intention. I had to think about where I was going and how I was going to get there. If there was the slightest thing on the floor it could throw me off. I'm getting up and moving on my own now and although I'm stiff and sore I can do it independently.

And up to about a week ago a shower really took all of my energy. In fact if I had a shower, I usually slept right afterward, sometimes with wet hair, because I didn't have enough energy to dry it first. Showering is not easy for me now, but by comparison it is so much better. No nap required!
I started with every meal, snack and drink was prepared for me and now I have prepared and cooked most evening meals. I admit It feels like a lot sometimes but I do it.

Physio, which I started five weeks ago was a real challenge, in many ways. I had to get myself there, get changed, get into the pool, carry out exercises, get out of the pool, take off a wet bating suit with every muscle in my body hurting, change and get home. All of those things still happen. The ease of which they happen has changed tremendously. I still struggle, dropping things, carrying things and getting in and out of the pool, but I do it much easier than before. Yesterday there was a milestone. I drove myself, got myself in the building, granted I parked right in front of the door, but I did it. I admit the feeling of freedom was only overshadowed slightly by the fatigue I felt afterward. I am always tired after Physio and always hungry but yesterday I felt as though I couldn't decide which need to fulfill first. I fell into bed and slept for two hours straight. Even when I woke I was very groggy and had to force myself upright.

I have been experimenting with the help of my Physio toward independent walking. I still use the walker outside and in stores. I had a goal of ten weeks to independent walking. We don't think I will make it. He says it's a little to risky and risk is not something either of us feel is worth it after enduring three neurosurgeries in a year.

So my amendment is Independence by 12 weeks, and I'm told that could be amended again. Patience!

I have gone from spending every minute with someone to spending most of my time alone again. It's a bit of a transition. Neither is ideal.

I have seen a steady improvement in the strength of my legs. The very good news is the Physio is working. The recovery time from Physio is brutal. Today I needed help out of bed and to be walked to my recliner and a coffee put in my hand. That was over an hour ago and I'm still stiff but more mobile.

I have my first independent activity planned for 1pm today, I hope I can make it. It's a lunch for a friend from our pain meditation group for her birthday. I'm driving myself and using handicapped parking. I will require free hands for canes so pockets are required for money and phone. Thinking ahead is key. I would like to bring her flowers but the extra stop and how to carry them is too much of a challenge.
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So as time marches on so do the changes in ability. I have to remind myself to look back to see the difference from where I came. It will get better every day but the changes are small daily, so I have to remember to look back to see where I'm going be in the weeks to come.
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Day 235. The Body Remembers.

10/22/2015

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Today marks the 14th "anniversary" of my spinal cord surgery. I didn't know that when I woke up today yet I was stressed, weepy and overall very emotional. I spent the morning feeling that way. Thankfully a special friend was celebrating her birthday with a lunch date. I couldn't miss it because we are the ladies who met at a pain meditation course and inevitably we have a small turn out. It's understandable considering where and why we met, but I made a decision to make an extra effort to meet with this group even while in pain. The way I look at it is they will likely be in pain too so if I can at all I attend then I will, especially on a occasion like a birthday.

I spent the morning crying for no particular reason, then got myself together and went out to lunch where we could laugh and talk about the challenges we all were experiencing along with our good news as well.

Once I realized it was the same day of my spinal surgery I wondered if the body remembers. That day and the fourteen days afterward was a time of turmoil for me and my body and certainly for my young family. A family I had said goodbye to, promising to see them in a week. It was several weeks before I saw the girls and it was from my hospital bed in Toronto. The news was grim for two little girls, their Mom couldn't walk. What they didn't know was I was just grateful to be alive. It had been a two weeks in ICU with serious concerns daily and a near death experience.
That was a lot of years ago, yet today it felt very familiar again. I had experienced PTSD from my two weeks in ICU and watching those die around me and the near death experience of my own. I think today was the remnants of that.

PTSD is a curious thing, it affects people in various ways and in varying degrees. In my experience I've learned that time does not necessarily heal it all, but its what you do with the time thats important. I will write more about PTSD in a future post, but for today I will say, I pulled out my usual stops; I cried, let it out, all out, I called a friend, used rescue remedy( a natural product for anxiety to bring calmness), saw my friends for lunch and laughed, and finally saw a counsellor.

Tonight, I feel better. Mostly because I know where it came from and why I was vulnerable to it. I'm spent! My family is spent, and we all need this to be successful.

So tomorrow is another day, and one that starts with a very early appointment with an orthopaedic surgeon so I'm thankful that my bad day was today and that it is over.
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Day 230.  Inspiration from Baseball!

10/17/2015

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I'm reminded everyday in some small way that anything worth having, is worth fighting for.  I'm noticing all the things people usually look past these days, and giving it a lot of thought.  I have so many examples that it's hard to compile them here without sounding disjointed.
I joined weight watchers yesterday. Yes, weight watchers.  I have gained five pounds with each surgery and I haven't been able to get it off. So if you're doing the math, I've added another 15 pounds to the five foot frame which wasn't at it's peak to start with.  A sedentary lifestyle does that to a person, and for that I can honestly say I had no choice. 
I looked around the room and heard reference to losing seventy and eighty pounds. It overwhelmed me to even think of having to do that. It made me feel better about my goal of just getting that extra fifteen off and going from there.  I felt in awe of these people and how much work that must have been. I have the feeling right now of wanting to treat myself and my body a little better. I do have a lot on my plate right now, but I feel it can't wait a minute longer.  Besides, my sister Val has started a landslide of sorts.  She joined Weight watchers, then three of my sisters joined her, now me and my friend Mary.  So we have a club of six to confer with.
The other place I feel inspiration is at my outpatient rehab centre. I struggle to go every week. I'm sore, in pain, stiff and don't want to add to it.  I wake up knowing it's the day to go and it doesn't motivate me much.  I get there and watching others makes me feel as though I have what it takes to go this.  My physiotherapist and anesthesiologist are so encouraging, they make me feel like a rock star at rehab.  I should be, I've had enough practice!!  I guess my impatience comes across as willingness.  I am willing to do what's asked of me because I trust they are moving me forward and that's where I want to be. Many people complain, I hear them.  I just know there is no way out of this without rehab, so complaining will not help, I just do it!
And finally, the most unusual inspiration came to me this week from the most unlikely source.  I'm not much of a sports fan but I do love baseball. I played myself when I was in my late teens and twenties. I even played provincially on a rep team. Eventually I went on to be league president and had my own team.  It was a time of great fun and comradery for me. Believe it or not my nick name was Scooter cause I could run so fast.  Seems ironic now.
When my girls started playing ball I coached for eight or nine years. So with the Blue Jays winning this year and Jerri in Toronto at the ball game, we sat to watch game five of the series.  It is going down in history as the most unusual hard fought game. 
On Wednesday the Toronto Blue Jays went into game 5 against the Texas Rangers tied. they had fought hard to get there, they had lost the first two games and came back to win the next two.  This of course meant they had to win this game.  Hearing the team members interviewed they were aware of the predicament but sounding good.  Things didn't  really go their way as by the seventh inning they were once again tied. Fighting hard all the way, they were back to square one again!  I know the feeling!!
"Game 5 of Toronto’s first baseball playoff series in 22 years, against the Texas Rangers, was tied 2-2, a tense game, a nerves game. With a man on third Jays catcher Russell Martin went to throw a ball back to the pitcher. Rangers right-fielder Shin Soo-Choo was stretching out his left arm straight across home plate, adjusting his elbow pad. The throw hit the bat. The man on third, Rougned Odor, came home." Toronto Star
Something like this has never happened in baseball history.  Time was called, it was replayed and decided the run counted. The fans went wild.  The emotions were unleashed and later termed so "unCanadian."  Well Canadians have emotions too, we save the expression of those negative emotions for when it counts. We aren't spewing them all over, all the time like some countries we know....eh hem.
Same can be said of those of us in pain and struggling in any way.  If you're a stoic person and you crack a little, get a little angry or frustrated and show it, people are shocked. 
Look at the Blue Jays and their fans. They had a hard fought battle to even get to that game and fought hard again to tie it up, then were hit with some unknown rule and were pounced on again.
That's how it feels for those of us who have had surgeries, illnesses, and loses, that keep coming and coming again.
You can start off hopeful, having faith that everything will be well, better even; then getting hit with obstacles time and time again can piss you off a little.  Emotions you've held inside leak out and everyone is so surprised because you're such a positive person.  Well, being a positive person doesn't mean you are not human.  It means, like everyone else you have a limit.
I'm reminded of the reader who shared her story of cancer.  She said she came to dread visitors. If she wasn't in the "best" mood she ended up reassuring them and putting on a happy face.
Back to the Blue Jays.  When the fans behaved  badly, throwing beer cans into the field, it was one of their own that settled them down.  The more senior players came out of the dugout and settled the fans down.
It's the same in the game of recovery.  The team around you is as important as the patient. They are there to cheer us on, give the support and of course calm us and get us back on track if we go of course.  They don't blame us for getting off course, cause they have seen it all and know the emotions because they feel them too.
Just like  at that game, the police couldn't get the fans back on track it was a player who was feeling the same.
They continued to play ball, not defeated but determined! The difference between defeat and determination; determination is when you know you have everyone around you rooting for you, defeat happens when you feel alone.
"And with men at the corners and two outs and a 1-1 count and the building on its feet, Jose Bautista smashed a 97 mph Sam Dyson fastball 442 feet to left, a rocket, gone. He stood there, 34 years old, and he watched it go and looked at the pitcher and pursed his lips and flipped his bat aside like a king, like he would never need it again. They may erect a statue of that bat flip. It was the biggest home run in this building in 22 years, and you will tell your friends about it, and you will laugh in disbelief, years from now. Holy bleep, you’ll say. The sound was a crack, whole and pure, and then the raucous end of the world." Toronto Star
They won the game in spite of everything that happened, and I have only outlined the main details.  Just as with recovery there are so many details and hurdles to get through we don't share it all with friends or even our closest supporters. So, sometimes when patience is thin or there's a crack in the armour, there are a lot of underlying reasons, not just what you can see.
We only need look to the Jays to see, you can fall down many times but it is always possible to come back!
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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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