Pain Fog: Living in spite of Chronic Pain
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Hope

2/24/2017

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My experience of running into an acquaintance at a party, who exclaimed how great I looked, not only made me feel better, but helped someone else who is experiencing difficulty right now. After our short but impactful conversation, a gentle woman touched my arm and asked if I had been sick. I explained in basic terms that yes, I had been in rather rough shape when he had last seen me as it was after a third neurosurgery in less than a year.
She asked if I would tell her all about it. I hesitated for a moment wondering if the party was the right place for it, but I could see she needed to know. She then told me her husband had been in the hospital since the middle of November, almost a hundred days. She said seeing me look so healthy and active gave her hope. I stopped drying dishes and suggested we go somewhere more private. She and I talked for some time and I could feel her pain; I could also understand her need to hear about mine. I too, had taken courage from others recovery when I was starting to lose the energy, and resilience to carry on. So I told her about my story and about my wonderful husband who was there every step of the way. I complimented her on her dedication and love for her husband and all they have been though. Nobody knows, or can imagine unless they too have been there.
She's a remarkable woman and I have no doubt that she, and her husband will come out of this okay. It takes such faith to get through those dark days that seem to drag on with one more complication after another. I could truly empathize with the unfortunate journey they are now a part of, one no one wants or asks for. It creeps into your life like an unwelcome guest and to your horror settles in for that long haul.
I was happy to have been at that party last night for her to see the interaction and feel hope from it. I know it has happened to all of us from time to time, just when you think you haven't another ounce left to give, someone or something fills you up again. And it was good for me to be reminded once again how far I have come and how fortunate I am for the people who love me.


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Month 25. Transformation

2/24/2017

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Last night I attended a party for a friend. There were guests from all areas of the person's life and it was a lovely event. While I was standing talking to women I had just met, and one I knew slightly I caught a glance of someone across the kitchen. He caught my eye by the way he was looking at me. It was a cross between bewilderment and amazement he told me afterward. He was holding a bottle of wine in each hand and I honestly thought he might drop them.
He stuttered, "You look great."
I thanked him, and smiled, but it didn't end there. He kept looking at me and the women I had been talking with were now looking at me.
He finally exclaimed, "You're standing, you're walking, you look great."
Then it hit me, he hadn't seen me since shortly after my final surgery. I was at the Farmers market with my girls and we ran into him and his wife. When I think back to that time I was in pretty rough shape. Fragile, pale and very slow movement, and perhaps he thought that's how I would remain. I had a walker at that time and a daughter on each side of me while I walked. Getting out and into a crowd was a big deal.
We finished our conversation but he never really got that look of amazement off his face. He finally smiled, patted my back and said, good for you.
Although slightly embarrassed by the attention, it felt good. It was a fantastic reminder for me who was having a bit of a bad week with a fall and consequently pain to go with it. I felt the glow of that reminder all evening. Sometimes we have to remember how for we have come to appreciate where we are. I do, I really, really do.
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Month 25. Exposed

2/24/2017

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Think about the thing you dislike about yourself the most; imagine telling people about it, time and time again. The telling of it doesn't feel comfortable, sometimes it is down right embarrassing or shameful. Anyone would tell you not to be ashamed, but that doesn't matter. Shame is not a rational thing, when talking about ourselves and perceived weaknesses.
That's how it can feel to a person with an invisible illness or injury. We look as though we should be able to carry our own groceries, climb the stairs vs the elevator, or stand and give an elderly person the seat. And don't even get me started with the disabled parking.
When I'm travelling, the minute the plane lands and the seatbelt sign goes off, I stand. I have learned I have to stand and get my legs balanced before I call on them to walk after sitting for awhile. When I do this, everyone around me looks at me and stands and jostles for position. I now say to these strangers, I just have to stand, you can go ahead when the time comes.
As you can see, many of these cases I have not even met the people I am explaining this to or have just met them through friends or relatives.
Once again I ask you to think about what you perceive as your weakness; now imagine having that as a topic of conversation when you've just met somebody.
Even the most confident person gets worn down after dealing with these sceneries time and time again.
I feel like I spend a lot of time explaining myself and my actions; why I choose not to do things, or why I do some things differently than others.
My body is different than anyone else's, I've known that my whole life. What I didn't realize is that it's capabilities would be compared to those of my own age simply because it looks okay on the outside.
What I realize is people of all ages, and races deal with this dilemma all the time.
There's a sigma when you can't do what is expected of you, period.
I'm not sure what the answer is, because I have really worked on self acceptance and gratitude for the body I have. My perseverance has allowed me to keep moving. When I'm faced with a new situation in which I have to explain why I can't do something someone my age should be doing, I feel it in the pit of my stomach.
Smiling and having a positive attitude goes a long way, but feeling judged does not make anyone feel anything, but shame. So the next time you hear someone with different abilities explain themselves, just remember how difficult that conversation is for them. A little compassion goes a long way.
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Month 25.  Shame and Disability 

2/24/2017

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What happens when you have worked so hard to get to where you are after an injury; surgery, or chronic illness, and you realize it isn't enough? Or worse still, someone tells you it isn't enough.
Those of us who have dealt with this for many years avoid these situations at all cost, but for those new to it, you may still be going on trial and error. When you think you have built your strength up to an event or activity, and it works, it feels fantastic.
If you are not up to the activity, or worse still, you go ahead and do it, and it leaves you feeling terrible afterward, the disappointment can be devastating. And in rare occasions, I realize as I'm doing something that it may be too much, but I choose to continue and pay for it later. It's worth it to me at the time. These are usually life events like weddings, funerals or special events. Or it can be a gathering that is so much fun you can't force yourself to leave.
For those of you reading this with a chronic condition you know all too well what I mean. However if you do not, or it's a loved one with the condition let me explain further.
When I got out of rehab after my surgery I was five weeks post op. I was feeling pretty strong. It had taken a lot of Physio and was walking with a walker, able to dress myself and do most of my daily activities at the hospital. I still had someone with me most of the time, but I was so much better. One morning as my husband was showering, I noticed he had made coffee. I decided to pour myself a coffee. I lifted the half full carafe off the burner and my whole arm started to shake with the pot in it. My low back burned and as I quickly tried to replace the carafe my legs just about went out from under me. I was shocked. I sat in the closest chair and collapsed into my misery. I couldn't even pour myself a coffee. Thankfully I didn't spill it all over myself, but I might as well have for how miserable I felt.
What I now realize is, it has taken a beating on my self confidence. I was always that person who wasn't afraid of anything, spontaneous and game for just about anything. Having a disability has taken some of that away. I can no longer leap before I think. I must think and preplan a lot in my life. So it has in some ways robbed me of the person I may have been. I see groups of woman gathering going to third world countries doing mission work, and know in my heart that would be me if I was healthy. Every group I want to join I have to consider so many things, the chairs, the timing, and if it is accessible and comfortable for me. Spontaneous Maureen has left the building.
I don't want to sound as though I am not grateful for the level of ability I have, I am truly grateful I am able to walk and have healed well enough to resume my restricted mobility. Yet while I have worked hard and can walk daily I am not a fast walker, nor am I a long distance walker. That is fine with me. It was at least until it was pointed out to me by a friend of a friend. When my friend asked if I would like to join them for a walk, the other woman quickly made it clear it would be a power walk.
I felt like a kid in a school yard being bullied, by the bigger, more capable kid. It was as though my disability was being held up to the light for all to see. It didn't feel very good. She wanted her power walk for the day and didn't want me to slow them down. So I declined and walked away. She was aware of my disability. I didn't say anything to draw attention to my hurt feelings. People can choose to include me or not. It's my reaction to it that needs to me examined.
The thing is, it stuck with me the whole day. It's been about a week and every time I think of it it makes me sad. I'm not sure why I let it get to me the way it has, but I'm sure she has not even given it a second thought. It likely wasn't meant to be hurtful.
The vulnerability one feels when you have a disability is great. I felt exposed and not good enough. There's a great quote by John Powell.S.J. That goes something like this. Why am I afraid to tell you who I am, because that's all I have and if you don't like it I have nothing else to offer. Those with disabilities do not have less to offer, just different offerings.
People with disabilities are oppressed all the time in different ways that on the surface does not look like oppression. Just as those of other minorities are as well. When we can all look at each other, and ourselves though a lens of kindness the world will be a much better place.
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Month 25. Hope

2/24/2017

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February 24th, 2017

2/24/2017

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I've had a hard time getting myself out the door these days and from talking to friends I know many feel the same. It is such a risk to take when you know a fall can set you back so far. And we are not elderly. I can only imagine how vulnerable they feel in this weather.
I remember loving winter and enjoying all the winter activities. We cross country skied weekly at least, went ice fishing and tobogganing with the girls when they were younger. The winter didn't exactly fly by but it didn't seem to drag on the way it does now.
I finally got the treadmill going last week and started slow but at least I was doing something. It didn't take long for me to find aches and pains from that. I will continue with it because it is better than nothing.
I did find a group that is a beginner practice for Tai Chi. It's Wednesday mornings and right here in my community. So this week I got myself going and got there in plenty of time to find I was the only one there. It turns out it was cancelled this week and I had no way to know that. I'll try again next week. Since I was up and out the door I decided to go downtown and run a few errands I had been putting off. We've had a lot of snow, and the sidewalks were clear but getting to the meter was a challenge with a little bank of snow. Just as I was getting back to the car my foot went out from under me and I went down hard. Snow over ice is always dangerous. I know the fall happened partly because I'm weak and couldn't catch myself. An elderly man motioned from his car to come and help me but I waved him off. I could see he would likely go down too. I got myself up and quickly got into the car and out the heated sit on. It hurt right away but nothing like it did the hours afterward. It was a bad day.
I'm seeing my osteopath today and I know he will fix up the remnants of it. But it feels discouraging that there's another fire to put out. It could have been so much worse. I know that. It was a slide to the ground without too much force. Had it been harder I really could have done more damage.
It's a beautiful day, the sun is shining brightly, dare I go out again?
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Month 25. Winter Travel

2/24/2017

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I've been hearing it for years, going somewhere warm in the winter months is not only enjoyable but it is helpful with pain and activity. Being able to get outside and walk daily has made a huge difference to my strength. I walked every day right up to the day after Christmas, despite the cold. Since then the ice and snow have just scared me inside and everyone agrees a fall for me now would be disastrous.
With the long winter ahead of us I was disappointed when the strength I worked so hard for was diminishing before my eyes.
Thankfully this year we had a wonderful offer to join friends for two weeks in Mexico at their rented condo. We spent that time walking on the beach swimming and staying active. It was so nice to feel the warmth of the ocean and sun. A little gift in the middle of my frozen world.
Travel days are very hard for me however, no matter how carefully I plan for them.I have to know going in that it will take me two days to acclimate when I get there, and once again when I get home. The benefits of travel are worth it. We took a bite out of winter and got out and was able to built up the strength I had lost. Now it's up to me to keep it going as best I can.
I asked Barry to take all the stuff I had piled onto the treadmill off and set it up for me. I've been walking daily since I got back. It isn't the same as walking on the beach, that's for sure but for now it will have to do.
The sidewalks are cleared and sanded, but I'm still nervous to get out there, at least until some of this melts.
So I owe a world of gratitude to our dear friends who introduced us to Manzanillo, Mexico. It was a beautiful place to recapture the warm weather and all the movement that comes with it. Most importantly it was a wonderful time with friends.
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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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