Pain Fog: Living in spite of Chronic Pain
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Day 49. Tomorrow is Day 50!!

4/12/2015

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Tomorrow marks day fifty of my blog. My intention when I started the blog was it would be daily until the surgery date then weekly thereafter. We thought it would be about thirty daily posts, before I switched to weekly. Since my surgery isn't going to happen in April it has meant I continued. I will see where it goes from here, however I want to tell my readers a little bit about who else is reading.

To my surprise there are people reading from forty six different countries! Forty six! That has really kept me writing. Hello to China, Russia, Egypt, United States, Japan, Italy and to the other forty countries, I appreciate you being a part of my journey, and I sincerely hope you stay along for the ride.

Most of my blog visitors have come to me from those of you who have shared my link on Facebook. So thank you for doing that. You may not be in pain yourself but you never know who around you will benefit from the blog. So I am humbly asking if you would share this link today. Remember not all disabilities are visible so there maybe someone reading you page who could benefit.

We are very close to the one thousand reader mark and we thought it would be fun to try to reach it this week. We currently have 952 readers on a regular basis. She this week, share, share, share and let's see if we can reach one thousand. (Click on the Facebook or Twitter icon below to share).
With the physical limitations I have it is fun to be able to reach out to all of you through writing. Knowing I have all those people curious about what I have to say adds interest and responsibility to my day.
I want to thank those of you who have taken the time to leave comments, either privately or on the blog. Knowing you enjoy what I am writing and can learn from some of my experiences makes it very worthwhile.

Finally a positive attitude is more than just glossing everything over, we know that. Together we will stay positive while being real. I look forward to moving forward with all of you and hopefully some of your friends.
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Day 31. The Unknown.

3/25/2015

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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.
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Day 22. What does it take to get a parking sticker? A disability.

3/17/2015

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It seems I've struck a nerve with yesterday's post. I'm not the only one who feels judged while parking in the handicapped spot. Some of you have some pretty awful stories. I knew there was much to be said on the topic from my point of view, but obviously it has affected many of you as well. One thing I hadn't mentioned was the difficulty to get the carts to the car in these winter months with so much snow in the parking lots. It's tough because we can't carry the bags so we need the cart, and yet the cart can't always make it through the snow. Even when we are able, it can hurt to push it.

While we are on the topic, let's talk about a few other things that are difficult. I have known for quite some time now that a heated therapy pool is excellent for pain and mobility. In fact on a recent trip to Arizona I used it daily to help with pain and it was very effective. I found before my day started I could get into the hot tub for about twenty minutes with my coffee in hand, and I would feel much better when I got out. After the day was over and we had dinner, I usually lead the willing group right back to the hot tub to warm my weary bones and muscles. It's quite a pleasant way to get pain relief. Of course it didn't take the pain away fully but it made it more bearable.

Why then don't I take advantage of the lovely facilities at our local YMCA has? There is a full sized therapy pool with a whirlpool on one side and an exercise portion on the other. It was there 13 years ago when I came home from my first surgery. It was in fact, a written part of my release that I use the pool twice a week. It was recommended that it be a therapy pool with the temperature of not less than 95 degrees.

At first the knowledge that we had this facility available was very impressive. When I set myself up to use it, my doctor, Physiotherapist and I were a little shocked. The "therapy pool" was not set at 95 degrees, because .........wait for it...that was too hot for the babies. Babies in a therapy pool you ask? Yes every day, and every time of day it turns out. I love babies and I love being close to them but this is not the setting.

The facility has four pools. There is a general large pool with a normal temperature. There's a children's pool, which is a little warmer, and then there is a toddler and baby pool, which is warmer again. So why then is it imperative or even allowed that the moms and babies dictate the temperature of a therapy pool? I'm confused about that but that is how it is.

Another concern for me was to be in a pool with several babies in diapers. This can mean a risk of infection for someone who is very susceptible to infection in the first place. It was very difficult to stretch and do the routine required by my Physiotherapist with a host of moms and babies in the pool.

Walking to the showers is always a challenge with the wet slippery floors. Then when I get to the shower, often the handicap shower with a bench to sit on is taken by a family. I understand, believe me, I know showering toddlers after swimming is not easy, but neither is standing without the needed safety handles in a regular shower.

Then there's the case of public stairs. Many times I have been walking down a flight of stairs carefully using the rail and people are stopped talking right in front of me, leaning on the rail or just sitting on the stairs. I get a quick look and they go on with their conversation. Manoeuvring stairs is a tricky business. And those of us who can still do it need the rail, and we need not to be forced to stop half way done. Proprioception is a strange thing. I learned about it the first time I tried to stand when I was paralyzed. So what it means in my terms, is where you are in space. And an incomplete paraplegic doesn't have good proprioception. I would suspect some

of you with MS may not either. Our feeling does not always go right to the floor and attach to our feet. Therefore we need to be in continuous motion, as much as possible while going down the stairs. Try explaining that!!!

"Excuse me, my proprioception is acting up would you please move?" I don't think so.

There are challenges everywhere and challenges most people don't see, but the fact that I can walk, drive and get out on my own most days is enough for me. I will accept these challenges and try to be polite and light hearted as I enlighten those who want to be enlightened, and then just forget about those who don't.
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Day 21.  Pain, the invisible disability.

3/16/2015

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I used to like shopping. I even liked grocery shopping. I always went on a Tuesday morning to get food for the week and then Friday morning early, to top up for the weekend. It was nice because the store was never very busy at those times and it wasn't too difficult to get a parking space. I would start with a list, coffee in hand and take my time.

That has changed a lot for me in the last year because my mobility has become so compromised. I need to park close if there are close parking places available. If not I use the dreaded handicapped parking with my parking pass. Here's where the negativity begins. I often get a look from some stranger who is deciding whether I am disabled enough to use that space. Once, just once I would like to say what is on my mind.

"Old man, you stand there and judge me yet I am half your age and my legs are in worse shape than yours. I have a spinal cord injury, a lung condition, and a knee that needs to be replaced. Just to name a few. And you stand there on your two good legs trying to make me feel worse about myself"!

Of course I don't say that. I smile and walk away and let him or her think whatever they want to. I can't deny it hurts and that’s the reason I don't often use it. So if you are shopping and see a younger person in a handicapped area please don't make assumptions. We may look good, but wait until we come out of the store and make it back to the car, that's a different story. Let the police look after those who offend this law.

That brings me to another point. It's the invisible illness curse. Many people live with a disability you can see. It is impossible to hide a wheel chair or canes etc. When you have an incomplete spinal injury there is no wheelchair, thankfully. Believe it or not that comes with its own set of problems. I cannot stand for any length of time or walk for very long stretches. I have to say that in every situation. It brings the conversation back to my disability when I would rather talk about anything else.

I'm not alone; there are others who have the same problem to deal with. Many who have MS, Fibromyalgia, cancer, etc. can look normally healthy on any given day. It doesn't mean that they don't need extra provisions made for them to be able to attend an event or get through the day.

My theory has always been to stay home if I don't have the energy to at least fix myself up a little. I often try harder if I feel bad the more dressed up and put together I am, probably means I'm in a lot of pain. Then somebody will inevitably say, "You look great". Don't get me wrong, I love to hear that, but as every chronic pain sufferer will tell you there's a "You look great!" and there's a "You look great".

We hear what your saying by the look on your face. We read your sincerity and appreciate it, but we can also read the look that says, you're not sick, in pain, or suffering in any way. Now to some that may sound a little crazy, but to those who have experienced this you know exactly what I mean.

The bottom line is there are people who love and support you and there are people who question whether you really are struggling. If you haven't experienced chronic pain, it is difficult to imagine getting up and dressed and out to an event, if you are having pain. The person judging you may have only experienced pain in an acute situation. When you have acute pain yes, you generally stay home and don't fix yourself up to go out. Chronic pain sufferers know if we have that attitude we won't go anywhere. If you can manage it at all, it is best to do what you can to get out in the world. We know that, they don't.

It is up to you to surround yourself with those who support you and do their best to not focus on the pain, but help you live the life you want to.

Don't let a stranger steal your joy, don't let the judgement of an acquaintance ruin your night.

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Day 19. Readjusting. 

3/14/2015

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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!

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Day 18. The joke is on him!

3/13/2015

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Today is about doing my best. Barry has been encouraging me to go to Aqua Fit classes for a while now, and so has my doctor if the truth be known. I'm not totally against it, it is just that I have a number of legitimate excuses as to why not.

I guess the first is my deep seated memory of being in spinal rehab and spending hours in the pool as part of my rehabilitation. The second is that I don't really like getting wet, unless of course there is a sandy beach involved. The most compelling reason is, this winter it actually hit -40 Celsius here. Now seriously folks who would want to leave their cozy fireplace in the family room, in the dark of night, which arrives at 4.30pm and get into a pool. Not me!

Pain and lack of sleep are also not the best motivators so I have been dragging my heels.

On Saturday the clocks changed and it is almost 7.30pm before the sun sets. The temperatures are all above zero and the sun has been shining for days. So what was my most legitimate reason is gone.

I had been asking my Physio if I could try yoga again right up until about a month ago and at that time he said I was close but not ready. He doesn't have to tell me now, I can't even do most of my Physio stretches anymore. But I know for sure yoga is one of the things I'm looking forward to most when I can do it again. I asked about Aqua fit, I got a tentative okay, but don't overdo it.

I saw my doctor and asked about Aqua Fit, he laughed and told me to be careful but to give it a try. I had to laugh back because he said for safety sake to make sure Barry is with me!

We had our first session and I lasted twenty minutes of a 45 minute session, and I have to admit is was painful even though there was no impact. I spent another twenty minutes in the therapy pool and tried to keep moving slowly. The next day I was a little worse in the morning but absolutely no bad affects after that. Guess where Barry and I are headed again tonight?
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Day 13. I Miss My Mind the Most.

3/8/2015

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There's a lot of loss with chronic pain. The loss of abilities, the loss of jobs, the loss of independence but somehow for me the loss of credibility is the worst.

At any given time one of my family members can say, I told you that, or you didn't tell us that and I don't have a leg to stand on. Frustrating as that is we have learned to laugh about it when we can.

Yesterday was one of those times. Barry and I were balancing our monthly budget and going through our credit card together to reconcile it. There were some purchases of mine on there and I had money set aside for them. That's were the trouble started. I confidently said I had already given him the money. It was in a small white envelope, I explained. I had been it carrying around in my purse and it was no longer there. I had gone through my purse two or three times. I could picture the exchange. We were in the car I told him, because we were talking about what a great deal I had gotten on the winter jacket. Yes, he did remember the conversation but no, I hadn't given him the money.

Well, I reasoned, if I hadn't given him that envelope where was it?

Then a shred of doubt entered my mind. I couldn't be sure. But when could I be sure really, my mind feels like mush when I'm in pain. Then I did what I often do when I am looking for something. I said a silent prayer, well more like a plead really, to St. Anthony. He is after all the patron saint of lost things. As with so many other times, my mind cleared, I walked into the bedroom, into my top drawer, and pulled out two hundred bucks.

Sheepishly, I walked out to the kitchen and handed it over to Barry. As I apologized he smiled and said, "No problem, I finally win some arguments now that you can't remember anything".

Thankfully we can both laugh at that!
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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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