Pain Fog: Living in spite of Chronic Pain
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Day 349. Another Language.

2/15/2016

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When you have a chronic condition, accompanied by pain, it's as though you speak a different language. We certainly see the world through a different lens and sometimes what we hear is not what what's being said as much as, how what is being said will affect our pain.
I'm reminded of this on a simple outing with my daughters, my friend and her daughters.
We all wanted to spend a couple of hours shopping while we were on vacation. Immediately I know it is a challenging and not necessarily "smart" thing for me to do, but I desperately want to do this normal mother daughter outing. To make it as comfortable as possible for me everyone is willing to put it in a time frame that will work. As we plan our outing it becomes clear that I speak the language of pain and the others, not having to deal with restrictions on time and energy, do not.
I know that two hours is a reasonable if not short time for the trip but for me at this time, it is pushing it. It's a compromise. One I think I can live with until there are delays and add ons. I sound like I have a plan with military precision when I see someone wants to go to another store on the way and there has to be a stop at the bank as well. I can hear myself try to reason with them asking them to go ahead of time etc. But I come across as controlling and unreasonable. With a group, it's difficult to explain that it is two hours I have and two hours only. I am tired of drawing that kind of attention to myself so it is often left unsaid. Time and time again it happens to many people daily, they want to still do all the "normal" things everyone else does but it has to be modified so much for everyone else it doesn't look normal any longer. I remember a friend telling me her story about going out for dinner with "the girls" after her spinal injury. She said at first she was so happy to be included and so ready to get out of the house she said yes every time. That was until she got to places she had been assured were accessible only to find the washroom was a full flight of stairs away. There are accessible, comfortable places to eat out but when she found she was dictating where everyone else ate, it had become not very much fun. A simple, and innocent comment like. "Oh that's right we can't go there anymore" made her feel as though she was holding the others back. I get it.
The same can be said for another friend of mine. He has Celiac disease. That is a true gluten allergy, a serious reaction to eating the smallest amount of gluten or even cross contamination from a knife etc. We often eat together and we have learned to modify, it's not a big deal because we make it work. The problem is eating out or in groups of people. He plans carefully and calls ahead and asks all the right questions. Most will say they have gluten free options but few really do. The care of preparation is not there. They use the same fryer for breaded chicken wings for instance as they do for every thing else. The most frustrating is finding a place that says they have gluten free options only to get there and see that isn't the case. It is further complicated by the hordes of self professed gluten free people. Some prepackaged, regulated items have certainly helped his choices, yet the seriousness of the condition is lightened by those who do not actually have an allergy. Restaurants have gluten free options for those people, but for the true allergy it needs to be prepared with more care.
It happened while travelling with us and as we ordered he realized there wasn't a thing on the menu he could have. While we all ate he left found himself a grocery store and found something he could eat while we had our meal.
Advocating for yourself can come across as picky and controlling. It is not, believe me that's the last thing we want but, it is all we can do to make the event doable for ourselves. If it feels like it is taking away from the others we are likely to sit it out. And that's why people end up at home more than they want to be and why sometimes the friends stop calling. We say no one time too many, only to free them to have the kind of evening/ experience you want them to have.
Making an effort is all either side can do, it can be frustrating for both sides as well but it doesn't mean we don't want to be a part of the experience we do, as long as we don't ruin it for others.
The next time your friend says no to an outing and you really want them there, be sure it's clear to them that the accommodation is worth their presence and I bet you will get a yes.
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Day 344. Nine Lives!

2/10/2016

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A cat has never been my favourite animal.  I don't dislike them, I just don't see them as a good pet. Let's just say I'm a dog person.  This week however I have been feeling like I have more in common with a cat then I previously thought. 
They say a cat has nine lives. Here's what Google says.
"Some people believe the nine lives myth is related to cats' ability to always land on their feet. Cats are also known for their dexterity and agility. Over time, people witnessed cats survive in situations that surely would have severely injured other animals."
As many of you know from reading this blog I have fallen too many times to count, mostly without injury.  I get up and save for a few scratches, sore muscles and the like I am on my way. 
I have had four neurosurgeries which have had me in the ICU in touch and go situations for about a total of 20 days.  In one such case, I was very close to death and even had a near death experience. My husband was called to the hospital in the middle of the night and so on.  Yet here I am.  I have an angel or two looking out for me, and I think I know who they may be. 
This weekend my nine lives theory came about while Barry was away for his annual boys weekend. I was alone for the first time in ages.  I looked forward to it but at the same time felt a little vulnerable being alone for the first time.  All normal stuff, but highly unusual for me to not really want to be alone.  I had made some social plans and was disappointed when on Thursday I came down with what I thought was a migraine. It lingered all day Friday and I chose to go out to a friends anyway.  Surprisingly, I felt better as the night went on. The next morning I felt badly again.  I wasn't enjoying the weekend much with this on and off headache. Saturday night we went out to the movies and I went to bed shortly after getting home.  I woke a few hours later with a headache and awful feeling in my stomach. I rolled over and went back to sleep only to wake again later.  This time I felt much worse. I was dizzy, had a headache and felt sick. I made my way to the bathroom and threw up.
I went back to bed and slept for a long time.  I put it down to a flu of some kind or a long lasting migraine.  That was until the furnace repair person came into our house yesterday and shut down our malfunctioning furnace. 
What we thought was a problem with programming turned out to be a very serious problem which could cause carbon monoxide to come into the house.  When he asked if anyone in the house had had headaches or felt sick I stopped in my tracks.  When I told him my experience his eyes widened.  Saturday night in particular I was in danger and didn't know it, and was home alone, sleeping. 
He had a protocol to follow and had to turn the furnace off completely just as the weather is getting colder every day. The  cost of a new furnace was not what we needed right now but both Barry and I didn't blink at it.  Put it in.
 I'm sitting waiting for them to arrive to install the new furnace and grateful to be here to do it.
To answer what you're all probably thinking,  yes we have a carbon monoxide alarm and no it didn't go off.  It would be at higher levels for it to go off apparently. This experience however motivated me to write about it because it is so dangerous.  If you don't have a detector I suggest you get one.
My Physio said I was the luckiest, unlucky person he knew.  A lot happens to me but I always land on my feet.  I like cats a little better today.
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Day 342. Dedication

2/8/2016

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Dedication can be very difficult and it bumps up against another "D" word that has not always been my strong suit. I'm talking about discipline. I would end say I'm not the most disciplined person in the world. When I want to defend myself about that, I usually play up my spontaneous side and talk about how I like to "go with the flow" and see what happens.  When I'm a little fed up with myself I tell it like it is. I can be lazy, or undisciplined at times. 
Here's where that all came to play today. I was scheduled for a regular Physio appointment which included thirty minutes in the pool.  I have had a headache all weekend. It came and went but basically I have been dealing with a migraine or the verge of one for four days.  I even woke in the middle of the night to throw up on Saturday night. So when I looked out the window this morning and saw a heavy snow fall, it was just one more reason not to go to Physio. 
I hate getting wet on a winter day, and with my head feeling as it was, I needed an excuse not to go today.  I had it. It was a blustery, slippery, snowy day.  I'm sure they would understand I reasoned, anyone would.  I live 15 minutes from town and it often is understandable not to drive on the highway on these kind of winter days. 
I had my excuse in hand and I felt like crap from this headache but as I was about to call to cancel, I remembered my commitment.  The commitment to myself and my neurosurgeon, that if I didn't have to go to rehab this time I would do everything in my power to rehab at home.  I had a moment of remembering how very difficult it was to be in a rehab hospital for six weeks away from home and wanting to be here so badly.  I grabbed my swimsuit and got ready.
This is how you separate the women from the girls I thought as I packed my bag. When you can for a justifiable reason say no, you make the hard decision to say yes anyway.  Just say yes and do it, because it is the right thing to do. 
I felt good about my decision as I drove down Main Street.  Just as a reassurance of my dedication, I saw the epitome of discipline on the sidewalk waving to me.
Kurt is a neighbor of ours who rescued a dog about a year ago.  It's a beautiful looking dog, but he had some serious issues. He took this dog on knowing it was going to take a lot of work; socializing him to the point where he could play with other dogs and be friendly and not afraid, especially of men, was not going to be easy.
I have been watching with more than a mild interest as he walks Abby several times a day past our house.  He has had various collars, harness's etc.  After a few months she had improved so much that she and Whinnie played together in the park a few times. Lately we have been seeing he and Abby walking with another neighbor and his dog. The biggest improvement has been no other devices but a regular collar and leash.  Kurt's discipline paid off.   
Anyone who had seen that dog in the early days may not have believed she would be the wonderful pet she is now. Kurt believed, and not only did he believe, he did the work.
I did the work today and I felt good about myself for doing it. I believe I will be walking strong, and pain free, I just have to be disciplined and do the work.
Every time, and they are many, I see Kurt and Abby walk by my place it will be a gentle reminder of what can be obtained through discipline.  ​
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Day 334. Mixed blessings of medication.

2/3/2016

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I have a love hate relationship with my medication. I hate it because I feel tied to it. I feel as though it has a hold on me; without it I cannot function with the level of pain I would be dealing with. I love it, because it quite literally gave me my life back. I was a young mother who was very active and loved being involved with various groups, worked part time and volunteered while raising two children under five. I was the happiest I had ever been in my life. The word content only begins to describe it. I had a happy marriage, an abundance of friends and two of the most beautiful children in the world. Being a mother was everything to me.

It was then, at my most happiest, that I was struck down with the most debilitating pain. A pain that stopped me cold on a daily basis; a pain that worsened as the days went by, and a pain that not only scared me, but my husband as well. We didn't find any answers from the many doctors we had seen and the countless tests that were being performed. There was however a common thread. The doctors deserved concern for me turned to questioning and disbelief as their tests brought them no solid answers. If it didn't show on the countless tests then it wasn't really there was it?

It was a very demoralizing time. I went from happy and healthy young mother to a needy patient who was likely seeking pain killers. If only they knew me, they would have known I was the least likely to be seeking pain medication. I didn't take as much as an aspirin. I had delivered two babies without any pain medication, and not because it wasn't painful it certainly was. My choice had always been the alternatives. I didn't like to take pills. I had also had six stitches in the bottom of my foot while pregnant and fought with the emergency doctor who was insisting I should use pain killers. You get the picture.

Now here I was on a daily basis with pain so bad I couldn't catch my breath at times, and doctors didn't know what it was. Because they didn't know, it was assumed by some, it was nothing.

I was shamed by my own family doctor. She felt I was attention seeking. Can you imagine a busy mother of two in a happy marriage having the time to go to a doctor for attention? Crazy, I know. It was only by fluke I was sent to a colleague of hers while she was away, and it was he who was able to diagnose neurological pain. He took my shame away that day, by validating my pain and telling me he could help. The correct medication was administered and some relief happened. With his help I was able to function as a wife and mother again and had the ammunition to get the correct referral I needed.

I hate to think what would have happened to me as a person had he not seen me that day. It was the long beginning to my road back. It was also the beginning of me having to rely on medication to function.

Shortly after that time I was correctly diagnosed with a spinal cord injury. One of the most painful, invisible things a patient can have. I felt vindicated, but it didn't take away the days and months of being treated like a drug seeking hypochondriac.

I have the absolute best care in the world now. I have one of the leading neurosurgeons in North America, a fabulous family doctor and anytime there is a health issue, of any kind, I am referred to the best right away. I'm very grateful but I can't help wonder about others who suffer without diagnoses. I have been down that road and it's not a pretty one. How many people have conditions that are under the radar and not treated.

Being on medication the rest of your life is not something one strives for believe me, but when I consider the alternative, I'll take the pills and be grateful there is a way to manage the pain.

Here's an excellent article about pain medication and the shame some feel for taking it. I really recommend reading this it's a very well written story.



http://www.patheos.com/blogs/ellenpainterdollar/2016/01/chronic-pain-shame-being-dependent-not-addicted-to-opioids/
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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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