MS is not generally a disease associated with pain, but as many MS sufferers will tell you, there is a pain component.
I have experienced the 'MS Hug' and the pain in my feet and legs, from actual pain, to numbness, tingling and/or burning sensation.
As I have a generalized arthritic condition, I feel the leg and back aches from a changing gait. I found this article about the different kinds of pain one one find with MS and wanted to share.
https://www.verywell.com/overview-of-pain-as-a-symptom-of-multiple-sclerosis-2440808?utm_campaign=list_ms&utm_content=20161102&utm_medium=email&utm_source=exp_nl&utm_term=list_ms
Thursday, 29 December 2016
Wednesday, 14 December 2016
A New Perspective
I was at my grandson's hockey game on the weekend. The stairs into the stands are brutal, as are the seats. I usually take the elevator to the top and sit in the last row, better view than at board level.
After the game I returned to the elevator to make my way back to the main level. Before the doors closed a man squeezed in and with a smile asked if he could ride down with me. I had my cane with me, so my need of the elevator was obvious. He, on the other hand, was younger, much younger, and gave all initial appearances as to being healthy.
I am never one to judge, been there, done that...the being judged part, not the judging. He must have felt the need to explain himself. "I have MS," he told me.
"So do I," I replied.
We then got into a conversation, as we were no longer strangers. And, as things work out, we have the same neurologist. His son plays on the opposing team, and they were from the city where I go to the MS Clinic. We were both of the opinion that we have a great doctor, and the clinic is great.
I learned he is on one of the newer drugs, that require daily injections, and has been for the last twelve years. These injections come with a cost of $1800 a month.That is a long time to be doing injections, as any insulin dependent diabetic would agree. He's now suffering the side effects of the drug, and it's causing him joint problems and pain.
This led to discussion of the cane and or walker. I admitted to a great reluctance to using the cane, which I am now very comfortable with, and the walker, which I am not. I use the walker to and from the car, when walking to the main building in my complex, but otherwise avoid using it in public.
My excuse is that I am usually going shopping and can use a cart, so taking the walker is not required. I gathered that my new friend was also reluctant to use an assisted device. And I can understand why.
This man is young, with an eight year old son. There are so many things he can't do with his son, because of his disease, the pain and the fatigue. He's had his illness for twelve years, so his son has never seen him healthy.
It made me think of one of the stories in the book "Women Living With MS" where a young woman talked about using the cane in front of her young daughter's friends at school, and the daughter being upset. I think this might be part of this man's reluctance.
I can understand how he feels. My grandchildren have only known me with MS. Though I was more active in the early years, the first couple are too young to really remember. They have accepted the changes, the cane, and the walker, as it is what it is.
But, I'm a grandmother, living alone, retired, so I can rest when I need to, before and after any activity. I am not a young father, struggling with a chronic illness, while working, and trying to live as normal a life as possible, for as long as possible.
My meeting put a new face to MS, and my heart goes out to this man, with empathy and understanding. I hope the treatment he's on slows the progression of his disease and gives him the time he needs, for himself, and for his family.
After the game I returned to the elevator to make my way back to the main level. Before the doors closed a man squeezed in and with a smile asked if he could ride down with me. I had my cane with me, so my need of the elevator was obvious. He, on the other hand, was younger, much younger, and gave all initial appearances as to being healthy.
I am never one to judge, been there, done that...the being judged part, not the judging. He must have felt the need to explain himself. "I have MS," he told me.
"So do I," I replied.
We then got into a conversation, as we were no longer strangers. And, as things work out, we have the same neurologist. His son plays on the opposing team, and they were from the city where I go to the MS Clinic. We were both of the opinion that we have a great doctor, and the clinic is great.
I learned he is on one of the newer drugs, that require daily injections, and has been for the last twelve years. These injections come with a cost of $1800 a month.That is a long time to be doing injections, as any insulin dependent diabetic would agree. He's now suffering the side effects of the drug, and it's causing him joint problems and pain.
This led to discussion of the cane and or walker. I admitted to a great reluctance to using the cane, which I am now very comfortable with, and the walker, which I am not. I use the walker to and from the car, when walking to the main building in my complex, but otherwise avoid using it in public.
My excuse is that I am usually going shopping and can use a cart, so taking the walker is not required. I gathered that my new friend was also reluctant to use an assisted device. And I can understand why.
This man is young, with an eight year old son. There are so many things he can't do with his son, because of his disease, the pain and the fatigue. He's had his illness for twelve years, so his son has never seen him healthy.
It made me think of one of the stories in the book "Women Living With MS" where a young woman talked about using the cane in front of her young daughter's friends at school, and the daughter being upset. I think this might be part of this man's reluctance.
I can understand how he feels. My grandchildren have only known me with MS. Though I was more active in the early years, the first couple are too young to really remember. They have accepted the changes, the cane, and the walker, as it is what it is.
But, I'm a grandmother, living alone, retired, so I can rest when I need to, before and after any activity. I am not a young father, struggling with a chronic illness, while working, and trying to live as normal a life as possible, for as long as possible.
My meeting put a new face to MS, and my heart goes out to this man, with empathy and understanding. I hope the treatment he's on slows the progression of his disease and gives him the time he needs, for himself, and for his family.
Tuesday, 15 November 2016
Feeling Good
I don't know why, but some months ago, I stopped taking anything but prescription and pain medication. I think it had to do with difficulty swallowing, and some of those vitamin pills are really big.
Last week I went back on everything, and I am feeling so much better. So I'm back on the B Compound, the B12, the Vitamin D and the Omega 3.
A lot of MS people are low on B12, and of course the Vit D and Omega 3 are recommended, so I guess I can see why. I'm feeling better. I have a bit more energy, and maybe have lost some brain fog, but unfortunately, the pain is with me still, unchanged.
On a positive note, I'm getting into some crafts other than crochet, which means I'm persevering and trying to stand for longer periods. Which s good because I have this Christmas stuff I need to finish, well start and finish.
I even took a bit of a walk the other night, not far, but good for me. My 89 year old neighbor still puts me to shame with how far she can walk, but that's the way the ball bounces.
Wish the younger generation would listen to me, take a good look and listen. Maybe then they would take more care and not abuse the luxury of youth that might take away the pleasure of old age.
Oh, the things I wish I could do over.
Last week I went back on everything, and I am feeling so much better. So I'm back on the B Compound, the B12, the Vitamin D and the Omega 3.
A lot of MS people are low on B12, and of course the Vit D and Omega 3 are recommended, so I guess I can see why. I'm feeling better. I have a bit more energy, and maybe have lost some brain fog, but unfortunately, the pain is with me still, unchanged.
On a positive note, I'm getting into some crafts other than crochet, which means I'm persevering and trying to stand for longer periods. Which s good because I have this Christmas stuff I need to finish, well start and finish.
I even took a bit of a walk the other night, not far, but good for me. My 89 year old neighbor still puts me to shame with how far she can walk, but that's the way the ball bounces.
Wish the younger generation would listen to me, take a good look and listen. Maybe then they would take more care and not abuse the luxury of youth that might take away the pleasure of old age.
Oh, the things I wish I could do over.
Friday, 4 November 2016
Crazy for Crochet
Since last winter I have been having more difficulty sitting upright. It seems I'm losing upper body strength, so sitting where I have no support is a challenge. I bought a recliner chair, on the advice of my physician, but have to admit, I don't like it.
I suppose if I was just relaxing, watching television or reading, it might be okay, but I can't seem to do just one thing at a time. So I might read and watch television, but I really like to read in bed. I find the chair, when reclined, puts me at an odd angle, for using the laptop, or for doing crafts. And to be honest, I don't like lying on my back.
So, in order to put my feet up, and be reclined, more on my side than my back, I go to bed extremely early. I spend my evening in bed, going from crochet to reading, to maybe a book of puzzles (I suck at Sudoku).
A friend asked if I ever made those toppers for tea towels, you know the ones, they hang from the handle on your oven door or cupboard, and are handy for drying your hands. I said yes, had made a set, with matching dish cloths for each of my kids a few years ago for Christmas.
My friend asked if I could make her a few for Christmas, but never got back to me with any details. I went ahead and looked for patterns, and was anxious to start. I found myself between projects, so to speak, and needed something to do.
With no handy tea towels, and no idea of colors, I found the perfect solution. It is a crocheted topper, but instead of being attached to the tea towel, the towel is inserted through an elastic covered ring, and can be changed for the season or just for variety, and of course for washing.
I have a big stash of leftover yarn, and sooooo many buttons, I got started right away and am sharing the results. If my friend doesn't want these I'll donate them to one of the upcoming Christmas bazaars that are coming up.
I don't do anything by half measures, obviously.
I suppose if I was just relaxing, watching television or reading, it might be okay, but I can't seem to do just one thing at a time. So I might read and watch television, but I really like to read in bed. I find the chair, when reclined, puts me at an odd angle, for using the laptop, or for doing crafts. And to be honest, I don't like lying on my back.
So, in order to put my feet up, and be reclined, more on my side than my back, I go to bed extremely early. I spend my evening in bed, going from crochet to reading, to maybe a book of puzzles (I suck at Sudoku).
A friend asked if I ever made those toppers for tea towels, you know the ones, they hang from the handle on your oven door or cupboard, and are handy for drying your hands. I said yes, had made a set, with matching dish cloths for each of my kids a few years ago for Christmas.
My friend asked if I could make her a few for Christmas, but never got back to me with any details. I went ahead and looked for patterns, and was anxious to start. I found myself between projects, so to speak, and needed something to do.
With no handy tea towels, and no idea of colors, I found the perfect solution. It is a crocheted topper, but instead of being attached to the tea towel, the towel is inserted through an elastic covered ring, and can be changed for the season or just for variety, and of course for washing.
I have a big stash of leftover yarn, and sooooo many buttons, I got started right away and am sharing the results. If my friend doesn't want these I'll donate them to one of the upcoming Christmas bazaars that are coming up.
I don't do anything by half measures, obviously.
Sunday, 30 October 2016
No Frills...No Thrills
No Frills is a bag-your-own grocery store, that has great prices. Right now they are having their famous 'Dollar Days' sales.
As much as I love the produce, the sales and the selection at this store, I rarely shop there. First is because of the parking. They do have disability parking, usually full, but the lanes are small, and the place is so busy, you have to be on your toes when backing up. Pedestrians think the back up lights are meaningless.
Second, after walking about the store, when it comes time to check out, I'm usually tired and hate the stress of having to rush to bag my groceries and get out of the way of the next customer.
My 89 year old neighbor is sick and needed groceries, so I volunteered, as my cupboards were looking a little empty too. Her list had a lot of heavy items, soup and more soup. She is sick after all.
Anyways, I arrived at the store, all disability parking full, so I parked off to the side, in a No Parking, where numerous other people had parked.
I had the neighbor's list out, mine was a mental one so, of course, so I forgot a few items I needed and picked up a few I didn't.
The nice thing about Dollar Days is that most of the sale items are located at the end of the aisles and save a lt of searching. I found the soup easily, all in one spot, and picked up the 6 of one, the 2 of another and 2 of the third. I found the cereal, hers and mine, and everything else on her list.
I was tiring, couldn't think of what else I needed and was ready to check out...and then I remembered. I needed toilet paper. I grabbed the package on sale and headed for the cashier.
I did my order first, then hers, and pulled my bags out to pack everything up. And there's something else, I hate those bags. They won't stay open so you can pack in a logical way, which is why my daughter has these great bags the are open and easy to pack.
I struggled and struggled, and had to lean on the counter as my back hurt. I lifted and packed, and lifted bags much to heavy for me until I finally got everything on the cart. By then I was totally fatigued, in pain, and overheated from the stress and struggle.
I made it to the car, again more lifting, home, more lifting, and finally had the groceries delivered to the neighbor and mine in the door.
I wish I could have left it all where it was, but...frozen stuff...so I put the necessities away. Left the rest. Today, after a night of pain and feeling totally worn, I still have groceries to put away.
I grabbed the package of toilet paper, and, as I was down to the last roll, proceeded to rip the package open to put it all away,
WHAT! NO WAY!
The one item I needed, toilet paper, and what did I buy...paper towels. I'm not going back to the store, not today anyways. I figure if I run out I can borrow from the neighbor, I figure she owes me that at least.
As much as I love the produce, the sales and the selection at this store, I rarely shop there. First is because of the parking. They do have disability parking, usually full, but the lanes are small, and the place is so busy, you have to be on your toes when backing up. Pedestrians think the back up lights are meaningless.
Second, after walking about the store, when it comes time to check out, I'm usually tired and hate the stress of having to rush to bag my groceries and get out of the way of the next customer.
My 89 year old neighbor is sick and needed groceries, so I volunteered, as my cupboards were looking a little empty too. Her list had a lot of heavy items, soup and more soup. She is sick after all.
Anyways, I arrived at the store, all disability parking full, so I parked off to the side, in a No Parking, where numerous other people had parked.
I had the neighbor's list out, mine was a mental one so, of course, so I forgot a few items I needed and picked up a few I didn't.
The nice thing about Dollar Days is that most of the sale items are located at the end of the aisles and save a lt of searching. I found the soup easily, all in one spot, and picked up the 6 of one, the 2 of another and 2 of the third. I found the cereal, hers and mine, and everything else on her list.
I was tiring, couldn't think of what else I needed and was ready to check out...and then I remembered. I needed toilet paper. I grabbed the package on sale and headed for the cashier.
I did my order first, then hers, and pulled my bags out to pack everything up. And there's something else, I hate those bags. They won't stay open so you can pack in a logical way, which is why my daughter has these great bags the are open and easy to pack.
I struggled and struggled, and had to lean on the counter as my back hurt. I lifted and packed, and lifted bags much to heavy for me until I finally got everything on the cart. By then I was totally fatigued, in pain, and overheated from the stress and struggle.
I made it to the car, again more lifting, home, more lifting, and finally had the groceries delivered to the neighbor and mine in the door.
I wish I could have left it all where it was, but...frozen stuff...so I put the necessities away. Left the rest. Today, after a night of pain and feeling totally worn, I still have groceries to put away.
I grabbed the package of toilet paper, and, as I was down to the last roll, proceeded to rip the package open to put it all away,
WHAT! NO WAY!
The one item I needed, toilet paper, and what did I buy...paper towels. I'm not going back to the store, not today anyways. I figure if I run out I can borrow from the neighbor, I figure she owes me that at least.
Thursday, 27 October 2016
Cognitive Testing
Years ago, early into my disease process, I went through two very painful days of cognitive testing. I was never genius level, but I was smart, and I had a terrific memory, especially for numbers. I could feel when it changed, the lapses in memory, short term, and knew it was affecting my job performance. That was when I sought help, and ended up in testing.
At my recent visit to the MS Clinic, the Occupational Therapist did a short test of my cognition and memory. It's a painful process...when you fail, though there is no real pass or fail, more like you remember or you don't.
I couldn't repeat the five words she gave me without repetition, and after a delay, not without prompts. There was a test for sequences and patterns. 1 to A, then what follows? Of course, it was 2 to B and then 3 to C and so on. It took me a few minutes to get it going, not a good start.
What really surprised me was the clock. She gave me a circle and told me to put the numbers on it. Easy-peasy, I thought, and did it right. Then she said "Put the hands on the clock at ten after eleven."
I did ten to two. I couldn't believe it. I know how to tell time, not all my watches are digital. But the brain is a strange and wonderful thing.
The rest of the tests were simple, at least I didn't struggle or make any big mistakes. Still, those lapses are enough to give you a moment of consideration. Have I made mistakes I'm not aware of, what have I forgotten that might have been important?
When you've been smart, held a responsible job, successfully, it's a hard thing to accept.
What's that old saying...A mind is a terrible thing to waste. That's exactly how I feel.
At my recent visit to the MS Clinic, the Occupational Therapist did a short test of my cognition and memory. It's a painful process...when you fail, though there is no real pass or fail, more like you remember or you don't.
I couldn't repeat the five words she gave me without repetition, and after a delay, not without prompts. There was a test for sequences and patterns. 1 to A, then what follows? Of course, it was 2 to B and then 3 to C and so on. It took me a few minutes to get it going, not a good start.
What really surprised me was the clock. She gave me a circle and told me to put the numbers on it. Easy-peasy, I thought, and did it right. Then she said "Put the hands on the clock at ten after eleven."
I did ten to two. I couldn't believe it. I know how to tell time, not all my watches are digital. But the brain is a strange and wonderful thing.
The rest of the tests were simple, at least I didn't struggle or make any big mistakes. Still, those lapses are enough to give you a moment of consideration. Have I made mistakes I'm not aware of, what have I forgotten that might have been important?
When you've been smart, held a responsible job, successfully, it's a hard thing to accept.
What's that old saying...A mind is a terrible thing to waste. That's exactly how I feel.
Wednesday, 19 October 2016
A Trip to the MS Clinic
As I am not under any specific treatment plan, my visits to the MS Clinic have been a yearly affair. But the clinics have been so busy, as each serves a large geographical area. My trip is 200 KM, so imagine the area they pull from.
My annual appointment became every 18 months, and this year even longer. So, when they called with a cancellation, I grabbed at the chance, better than having to do that drive in winter.
But, I still hate the drive alone. Well. not the drive itself as it's an easy highway drive, it's the city streets in a city I don't know (previous visits aside).
I called my brother and he drove over an hour to get here and another almost two hours to get to the clinic. We stopped for lunch half way there, and did a small tour of Kingston, as we got turned around. Obviously my skills as navigator are not the best.
The visit takes time, as you see the nurse, the physiotherapist, and an occupational therapist. This time I had some tests done that support the balance issues I have, and the memory and concentration concerns.
In these cognitive tests, they give you patterns to repeat, like a list of words, and test immediate recall and recall after doing a different task.
They gave me a sentence and I was so surprised, I burst out laughing. Then I had to explain. The sentence was something like (I can't remember exactly, of course) "A man named John will help you today." Of course I laughed, as my brother's name is John, and he was a big help that day.
They asked the date, and of course I knew the day, Tuesday, the month October and the year. But the day gave me a moment's hesitation. I said the 16th, as my bro and I had been talking about it in the car, and he told me it was the 16th.
The OT said it was the 18th. And I said maybe it was my brother who should be having these tests, as I was following his lead. The dates get lost sometimes, once you're retired.
All in all it was a good day. I like the staff, especially my doctor as he's so easy to talk to, and love my brother for his ongoing support.
And the trees were beautiful heading east, the sky glorious on the way back, what more can you ask for?
My annual appointment became every 18 months, and this year even longer. So, when they called with a cancellation, I grabbed at the chance, better than having to do that drive in winter.
But, I still hate the drive alone. Well. not the drive itself as it's an easy highway drive, it's the city streets in a city I don't know (previous visits aside).
I called my brother and he drove over an hour to get here and another almost two hours to get to the clinic. We stopped for lunch half way there, and did a small tour of Kingston, as we got turned around. Obviously my skills as navigator are not the best.
The visit takes time, as you see the nurse, the physiotherapist, and an occupational therapist. This time I had some tests done that support the balance issues I have, and the memory and concentration concerns.
In these cognitive tests, they give you patterns to repeat, like a list of words, and test immediate recall and recall after doing a different task.
They gave me a sentence and I was so surprised, I burst out laughing. Then I had to explain. The sentence was something like (I can't remember exactly, of course) "A man named John will help you today." Of course I laughed, as my brother's name is John, and he was a big help that day.
They asked the date, and of course I knew the day, Tuesday, the month October and the year. But the day gave me a moment's hesitation. I said the 16th, as my bro and I had been talking about it in the car, and he told me it was the 16th.
The OT said it was the 18th. And I said maybe it was my brother who should be having these tests, as I was following his lead. The dates get lost sometimes, once you're retired.
All in all it was a good day. I like the staff, especially my doctor as he's so easy to talk to, and love my brother for his ongoing support.
And the trees were beautiful heading east, the sky glorious on the way back, what more can you ask for?
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