Monday, 12 June 2017

Making Decisions

I'm in a quandry, do I give that new medication another try, and risk another episode of vertigo. or go to a similar drug that I've used before?

I felt so good for those few days, I was tempted to try again, but have now decided not to take the chance.

I had lunch with my daughter today, and realize I need to be proactive in my health care. Apparently my one granddaughter said something to her sister about my falling (during my vertigo episode), and they were both upset and worried. That led to the discussion at lunch as to the fact that they have never seen me well. As long as they have been born I have been gradually deteriorating.

I've consistently put the effort out to give them things to remember me by, the crocheted items, scrapbooks and their cookbooks. But the one thing they need from me now is time.

If I start to take better care of myself, I'll have more quality time with them.

I know the feelings I have for my grandmother, and if they feel the least bit like that, I need to be strong. Lord knows I love them all.


Monday, 5 June 2017

Update

Well, it's been four days off the new medication, and no more vertigo, thank goodness. My pain has been manageable, but I miss those three days when it was better, when I felt an uplifting of my mood, and was looking forward to more activity.

I think the weeks I spent in the Pain Management Workshop last year is worth a repeat. Maybe I'll not feel like such a failure and will try the other one, Living with a Chronic Illness.

It's easy to give in to the pain, when everything is a struggle. My neighbor and I commiserate with each other, but it is still depressing that she has just had her 90th birthday and walks all over town. Some days I find walking to the bathroom too painful.

It doesn't help that I'm losing upper body strength, and find holding my head up extremely fatiguing. I push through the standing, walking, sitting with no support, enough to get the groceries and family events. But pushing through has a cost.

I was on a different NSAID for over fifteen years, been off it for years, but will contact my doctor and see if I can try it again. I'm leery of giving the new prescription another try, even at a lower dosage.

Whatever works.

Friday, 2 June 2017

Vertigo

First off, I'd like to apologize to anyone who has suffered from vertigo, because I may not have been as understanding or empathetic as I could have been. I have balance issues with my MS, have to be touching something to stay steady, can't look up, can't be in the dark, but none of that compares to the vertigo I suffered when I woke up this morning.

I woke up and stood at the side of the bed to judge the pain, which has been much better since the new med. When I took my first step I was all over the place, slammed into the door frame of the bathroom, hit the wall and basically fell onto the toilet. What the hell was that, I wondered.

Didn't get any better so I spent most of the morning in bed, finally getting up so I could get something to eat to take my medication. Wondering if this could be the new pill, as opposed to a new MS symptom, I called the pharmacist. It is a possible side effect of the new med, so I didn't take it today to see if the vertigo goes away.

I feel somewhat better, though that's not saying much considering where I started the day. Not wanting to spend the day in bed I've been trying to sit up for awhile, and so far so good, until I stand and move.

It's been like standing on the deck of a ship in a storm, with rolling waves. At times I feel a little seasick.

My ankle still hurts from this morning, so maybe I gave it a bad landing in addition to hitting the door. And my elbow aches, so maybe I hit it too. I guess I'm feeling more pain, because I've not taken any pain relievers.

Tomorrow should be interesting. Will this be gone and I can say it's the medication, or an I being given another challenge with this miserable disease? Only time will tell.

Thursday, 1 June 2017

Dem Bones, Dem Bones

Yesterday was day 2 on the new medication. I felt I had a bit more energy, and was moving around better.

I even managed to get the fairy lights attached to my black metal plant stand, with a lot of bending and reaching. I hate when I can hear the bones in my knee rub, and worried about the pain I would feel as a result, but there was none.

Today, I'm still moving better than usual, and pain is mild, a change for me.

My wrist aches, and is bothersome, but that may be my own fault for not sleeping with a brace on, to keep it straight.

I've taken today's pill, and am sitting here, upright, as directed. I'm not to lie down for at least a half hour after, in case of reflux I guess.

The sun is shining, the skies are blue, and my pain is being managed. Seems like it's a good day.

Tuesday, 30 May 2017

New Meds

I've been feeling down, the pain getting to me, along with the rain and miserable chilly damp weather.

I saw my doctor yesterday, and have two new prescriptions. One is a NSAID, a non-steroidal anti-inflammatory drug, a new one for me as I spent more than 10 years on Naprosyn, for the joint pain that has plagued me since my twenties.

Between the usual, my usual, MS symptoms, and the pain, it's been a rough year so far. My fatigue is so bad, I'm the Queen of Naps, an expert at the afternoon snooze. Does the pain make the fatigue worse, I'd say yes, as activity is a struggle.

The second medication I'm going to try is for nerve pain. That's very definitely related to the MS. I have pain running down the outside of my legs, numbness in my feet and stabbing pins and needles in my right thigh. Then there's the sharp stabbing pain in my fingertips...all nerve related.

So, I've taken the one new medication this morning, and am awaiting the results though the paper explaining the drug says it needs two weeks for full effect.

Today should have been a crash day, after driving out of town to the doctor, waiting for the prescriptions, shopping for a few groceries, but I feel surprisingly good. I've been on my computer, have walked out to water my plants and have the dishes done, almost as the last pan is still soaking.

We'll just have to wait and see. Here's hoping.

Wednesday, 24 May 2017

In my Garden

My daughter and her husband took me to Canadian Tire today to get the mulch for my garden and the last of the plants I needed. I do so love the slave labor.

As I was not up to walking too far today I used the walker so I could sit when needed. Back home I sat on the grass and watched my son-in-law spread the mulch while my daughter planted the last of the plants. It was great to have the help to get a few things done that would tax my energy and cause me pain.

 I was sitting in the walker on the grass and streaming out the fairy lights as my son-in-law attached them to the trio of trellises against the wall. I pushed the walker back a bit, and suddenly felt myself falling backward. Luckily for me I was able to stand, if I had fallen back I would have smashed my head on the concrete sidewalk behind me.

The bruise I have on my shin from earlier moving the patio chair is all the injury I need for today. I had a close call, but a beautiful garden.

Tuesday, 2 May 2017

Annual MS Walk

This is the 4th year that my wonderful family gathered to make the MS Walk. It was a dull and dreary day, rainy and wet but that didn't dampen our spirits.



I picked the little ones up at the half way point, and took them to the school, the meeting point. There we listened to music as we waited for the gang to arrive. We had lunch and took part in the usual festivities...the silent auction, the awards. We won the award for most spirited team, which we can add to our awards from previous years, team name and team costume.

We wear neon green T-shirts as of year 2. The next year we added baseball type caps, in black with a neon green brim. I also made name tags, the ones in plastic covers you can hang around your neck, in, of course, neon. I did each person's name in a different font and added the team name on the back. I figured we could add the years as we went along.

I found some neon green mitts for the kids, which were a welcome item this year as it was cold and damp.

Not sure what to add next year, shoe laces maybe, or scarves.

I don't know if the family realizes how important this day is for me. It is like Christmas, only I get the big gift. I love seeing the team picture every year, and find it amazing to see the changes in the grandkids.

This year I saw a woman in an electric wheelchair, totally dependent. She was there with her helper, and for the first time, it bothered me. I felt a sense of fear and dread, could that be me, and how soon? I guess it hit me worse this year because I struggle more every day, can feel this downward spiral I've been on the last few years.

I have given up more and more, so I want to hold on tight to what I can do. I fear the day when I can no longer be creative, and am not sure what I will do when that day comes.

Didn't want to put a damper on the good mood, but I need to be honest with myself. "It is what it is".

Wednesday, 26 April 2017

Pain, the Cost of Doing

I was out on Sunday, had a great dinner (barbecued steak) and a visit with friends and family. Before I left home I did a quick cleanup with my new vacuum, did the dishes and put stuff away. Then I had a little nap before I had the energy to shower and get dressed.

My granddaughter called later, asking when I was coming, and it was a good thing because I was resting and would probably have gone deep asleep and been late for dinner.

It was a good day and I drove home, tired but happy. It was a bit of a struggle walking from the car to my place, but I made it and immediately got ready for bed so I could lie down and put my feet up.

Anytime I have to sit with no back support I feel the fatigue, and the potential for increased pain in my neck and back. So I need to lie down, rest my head. That night I napped in the evening, and was asleep much earlier than usual.

The next day I was in such pain with my back I had trouble walking, so back to bed. I was up long enough to get the garbage out, but that was all I could manage.

I was up and about for short periods only, napped off and on all day, through the evening and slept until 4 A.M. the next morning. I was coming out of the resulting pain and fatigue cycle and read for a while, slept, then was ready to face the day.

It was actually a productive day, in that I had a visit with my friend, and finished a craft project. But the use of tools put a strain on my neck so it was early to bed. I crocheted and read, and all was well.

This is the way my life goes, for every day of activity, there's a cost paid in increased pain and fatigue, lost time. But, in the long run, it's worth the price as I got to spend time with family and am still mobile, able to do that.

I know the day will come when I'm not able to walk, won't be driving, and may lose my independence, but that day is not today.

Tuesday, 11 April 2017

Friendship

Friendship is a strange and wonderful thing. The one friend I spend the most time with turns 90 this year, and she is fit and very active. She goes to a bid euchre group three times a week, attends an exercise class and has dinner at the church each week.

Our friendship came about when I moved in across from her, and she happened to quit driving and gave up her car. I got her prime parking spot, and as I was struggling to walk, had the walker, life became so much easier for me when I could park closer. In appreciation, I started taking her with me when I went shopping, and made those trips to the grocery store, Dollarama and Walmart. That stretched out to casual get togethers.

She replaced, in a way, the neighbor I had at my other place. She was also in her eighties, and we often got together, her place or mine, made out of town shopping trips and such. Sometimes, when you live alone, it's just nice to have a few minutes of conversation.

My daughter laughs at me and jokes about my 'old lady' friends. But here's the thing, they are more at my level of activity. One night, a few years ago, my friend and I were leaving the restaurant after having dinner. I was walking with a cane and struggling with pain and fatigue after sitting. She was walking with ease. I asked her what was wrong with this picture, as she's older, gray haired, and having no problem, and I was younger and having much difficulty.

I had other friends more my age, but they've fallen by the wayside. They don't call, they don't write. That comment was a bit smart ass, couldn't resist.

I had one friend, and we enjoyed day trips, checking out the countryside, stopping for lunch, shopping in some of those unique little shops we'd find along our way. The first summer we missed doing this, it was because it was so hot, and hot weather is not my friend. We continued to have hot summers and have never made a trip since. There are other seasons, but people move on.

I know friendship is a two way street, you have to be a friend, to keep a friend. But, I have a problem with my increasing issues of limited mobility, increasing pain and fatigue, that I not be a burden. I need those friends to want to spend time with me, even if it's just an hour over coffee at my place because I'm too tired to get dressed to go out.

I hate when someone says 'call me', because my calendar is open and free, they are one's who are busy. I think they should call me when they have some free time. I know that sounds a little 'woe is me' but I hate when I do call and they are busy and it's a 'call me next week' kind of thing.

I recently cancelled on lunch out of town with my brother because I didn't feel up to the out of town drive, sitting for hours and driving home. He didn't let me cancel, but drove all the extra miles to take me out for lunch here. That's a good brother and a true friend. I don't know if he really understands how much that meant to me.

Those are the friends who matter, who recognize that even though I've changed physically, I'm still me. Those are the friends worth their weight in gold.


Monday, 10 April 2017

Lost and Found

I lost something yesterday, something that was ridiculous for me to have lost, and yet...I couldn't find it.

I keep my pills in a seven day container. Each day of the week has four compartments, for each meal and bedtime. I fill the compartments with daily doses, to be taken whenever. The section for each day can be lifted out of the whole, and I set it by my chair as a reminder to take them. When it's empty, I put it back in its daily slot, and refill the whole thing once a week.

Yesterday, I went to take out the designated day, and there was no empty container for the previous day. I looked by my chair, on the kitchen counter, on the microwave where I keep the container, even under it in case it had been pushed aside and out of sight.

I could not find it anywhere. Strange, as where could I possibly have put it? I wondered if, when picking up, I had inadvertently dropped it in the recycling with the papers, but it wasn't on the top and I didn't feel like looking further.

I hate when something like this happens, when I can't find something that should be easily located. It is so easy for me to doubt myself when something stupid, maybe silly, like this happens.

I found it later, in the last place I would have looked.

I have a second seven day pill container, that has just one slot for each day. Those pills have to be taken early on an empty stomach, so I keep it in the drawer by my bed. I saw the container on the top of the bedside table and when I went to put it in the drawer, found my empty daily dispenser.

What was lost is found, and I'm not losing my mind, well, not entirely. A simple mistake I guess, but I feel better about knowing where things are. Mystery solved.

Saturday, 8 April 2017

Activity VS Fatigue

I just realized how long it's been since I posted. I have created many posts in my head, as I lay in my bed, and like so many other things I want and hope to do, they never get done.

The fatigue that is a common complaint with MS has been particularly bad for me in the past few months. The other day I swear I was up and active for only six hours of the day. I had a late nap that lasted hours and left me feeling dopey and dragging for the evening.

Today I got up with good intentions. After a look in the mirror, my hair standing out all over the place, I knew I a shower was first on my 'to do' list.

The thing is, my back was aching, and I was having trouble walking and standing. I pushed on and got in the shower, finished and stepped out and right to the toilet to sit, tired out and in pain. I toweled off, applied the cream as my skin is so dry and it was back to bed. I was played out, so tired, worn out, and it was just after nine in the morning.

An hour or so later I was up, as I needed to get something to eat so I could take my medication that has to be taken with food. As I ate I checked my E-mail, Facebook and decided to write this blog post.

My head feels fuzzy, and I need to lie down again as I feel too tired and can't hold my head up any longer. But I have opened my curtains to the sun, let my neighbors know I'm still alive in here, so that's progress.

But, I feel a nap coming on and it's not even noon. I may not sleep this time, might read or crochet, but sitting is just to tiring and the position puts pressure on my knee so increases my pain. I need to lie down, straighten out my knee, support my head and upper body.

Maybe later I'll find the energy to go out and enjoy this spring day, which will result in another nap and a recovery day tomorrow. Such is my life, but what other choice do I have? And those times I get out and see friends and family, they make the crash days all worth it.

Friday, 10 March 2017

On Being a Hermit

I have been accused of being a hermit, because I like to stay home and don't go out unless I have to, or it's some family thing. I like the weekly soccer games for my granddaughter, because we have a visit first, and I get driven to and from the game. It makes my life so much easier.

I get to the store when I need groceries or a prescription filled, and think next winter I may make use of delivery services offered in town.

I realized just of late, why I like being home. Okay, some of that is that being creative is a solitary process, but the other is that I feel better at home.

I use the cane when I'm out, but after a short walking distance, am in such pain that walking is a struggle. I get tired, need to sit and there isn't always a spot to sit, so I lean on counters, whatever is handy. I look ungainly, and feel awkward. I should use the walker when I'm out, but it doesn't work when you use a cart in a store.

At home I walk about without the cane, and manage quite well, because I can sit when I need to, or even lie down for a short period. I do things in steps, with rest periods. Small chores take me days, like dusting or vacuuming, even dishes, and I can accept that as I have no one to answer to but myself.

So, I guess I am a bit of a hermit, but now I understand that at home is where I feel the most like me, and not that person struggling with a chronic illness. And isn't it fortunate for me that I have plenty of things I like to do...painting, reading, writing, crochet...to fill my day.

I have always been a bit of a loner, but people didn't notice as much when I lived a regular life of work and family, and now that look at that as a negative, when I think it's a positive. If I didn't have my hobbies, the pain and struggle of MS would defeat me.

It is what it is.

Wednesday, 8 March 2017

Winter Blahs, Spring is Near

I can't believe it's been more than a month since I posted. The winter is always a rough time for me, but then, when isn't it when you have a chronic illness.

I haven't felt as well of late, the fatigue at times overwhelming that I spend the majority of my time in bed. Deal with it, I tell myself and try to get the things done I need to do, but that eliminates so many other things.

Last week I was to have lunch with my brother, which meant a long drive, followed by a long lunch. As much as I love these trips into the city, the time with my brother, the opportunity to shop, sometimes I can't face even the walk across the parking lot to my car.

My brother, the best brother ever, came to me instead, and we had a visit, and lunch out. I so appreciate his effort, and the gifts.

It was a busy week, (my birthday), so I had another dinner out and some company. By Friday I was done and slept, off and on, for like eighteen hours. Felt like I'd lost a day and couldn't keep my calendar straight.

Apparently my favorite saying is "It is what it is" and I have a beautiful plaque to prove it. I think that sums up things for me, this is my life and I have to make the best of it, keeping fighting through the pain and the fatigue, or risk missing out on the good life has to offer.

And, it doesn't hurt to have some help along the way.

Saturday, 11 February 2017

Sleeping Patterns

I rarely sleep more than a few hours at a time, and frequently suffer from insomnia. It was suggested at one time that I might have sleep apnea, and I had to laugh.

I have a friend who went through the sleep study and does indeed have sleep apnea. They told her the number of times she moved during the night, and the number of times she quit breathing, and I was astounded. She now wears a machine at night to regulate her breathing, and sleeps much better.

When I go to sleep, I settle in on one side, and when I wake a few hours later, I'm in the exact same position. I turn over and go back to sleep, and again, don't move at all until I wake again.

Is it any wonder I wake up with aches and pains?

Today, it's my left elbow that just aches and throbs. I assume it's because of the position it was in for the last few hours, as I haven't done any lifting or such to irritate the joint.

This is just the way it goes, one morning it might be the elbow, another my back, or a hip or shoulder. I never know, but the one thing that's a guarantee, is I will wake with pain, of a varying degree of severity.

It's no wonder I am not a morning person.It takes a few hours to get me moving to where I can consider going out, or getting anything accomplished.

Add on the worsening MS fatigue and it's frustrating. My mind has all these ideas, but the body is too tired to consider it or to make the effort.

Little by little, I'll get things done...'cause my mind never quits.

Friday, 10 February 2017

Memory Glitches

The cognitive issues with MS are very complicated, as is anything related to the brain.

I can see something I know I should know, and be totally confused. Like this week, I was typing in my grandson's name, and knew as I looked at it that something was wrong. It seemed off to me, but how could I have made a mistake with his name, I've been writing it for 11 years.

So, I left it the way I'd written it and then today, saw the way someone else wrote it and yes, I did spell it wrong. I added a letter, sounded the same, but not spelled the same.

There are other times I have looked at something and can't understand what it means. Like the day I was driving and had a green light, and was momentarily confused as to what green meant. Lucky for me, I've never been confused with the red or yellow.

I know we ca all have moments of forgetfulness...like where are the keys, what is my postal code, you get the idea. The kind of lapses I experience are different, and I think more like what an Alzheimer's patient feels when he/she no longer recognizes what was once familiar.

Lucky for me, I have a family who understand these lapses and don't make a big deal of it. But for me, I have a hard time with these brain issues. It's hard to know and accept that you are not the same person you once were, in smarts and personality, and the real scary part, who you might become in the future.

One day at a time.

Thursday, 9 February 2017

Cold Feet

https://www.verywell.com/cold-feet-and-multiple-sclerosis-2440826

I found this article about cold feet and MS.

My feet feel cold all the time, in spite of wearing heavy socks. As evening approaches my feet will be numb, and painful.

I go to bed early and lie under my electric blanket, something I got for Christmas and have only used for these weeks since the holiday. I feel it helps, but the pain I feel each night makes me constantly move my legs, and wiggle my toes.

My feet appear very white. When I could get into the tub I would have a bath before bed to warm up my feet, but the warm water actually made them hurt more.

I apply my analgesic ointment from the knees down the outside of my leg, and that seems to help, along with what I call my 'magic' blanket.

The thing is, you have to find what works for you and stick with it. Anything you can do to not let this disease suck anymore of the joy out of your life than it has to.

Sorry, that sounded pretty 'woe is me' but it's one of those pain filled days and I know I won't get any of the things I hoped to do done today.

But, hey, the sun is shining, the sky is blue, my drapes are open to enjoy the view of my neighborhood. I'm thinking spring, and avoiding any glance at the thermometer.

Tuesday, 7 February 2017

MS- The Subject of a Speech

How many people really like public speaking? I hear my grandchildren's dread and fear when speech time comes around at school.

This year, my 11 year old grandson did his speech on Multiple Sclerosis. I was touched that he felt an interest in my disease, enough to share with his classmates. He did his research, for the usual, cause, symptoms and treatments.

But then he talked about how the family joins together for the annual spring MS Walk. He talked about how the kids ride their bikes and I pick them up at the half way point.

This young man has learned how to help me, in all the simple ways, an arm when I go up or down a step, holding a door open. I am very proud of him, that at his age he can be this sensitive to the needs of another.

There is an element of fun to the walk that he mentioned in his speech. The first year we did this as a family, we won best team name "Debby Does MS". (Not that his classmates would get the reference, I hope). The second year we all wore neon green T-shirts. Then we added hats and name tags.

I love that after the very informative beginning to his speech, he lightened the mood talking about the fun of doing the walk. And he ended it in the best possible way, that we might meet at the walk.

Thank you, Kiddo, it means the world to me that you made MS the topic of your speech.

Love you to the moon and back.

Monday, 16 January 2017

Motion Medicine

Don't we all wish there was some magic potion that would keep us hale and hearty, mobile and independent. Alas, there is no such miracle cure or fixer-upper.

My son gave me a jar of analgesic ointment called Motion Medicine. I have come to depend on its pain relieving qualities, and as a side benefit, the smell that seems to clear the sinuses.

I have a great deal of pain in my lower legs, usually at night and worse when I have been out, walking more than usual. Some of my night pain is the numbness in my feet. After sitting with my feet down, the outer part of my foot, my toes feel like  something solid and foreign, like part of me, but not. When I lie down I have to keep wiggling my toes, to stop these weird sensations. Just like I shake my hands when they go numb.

The pain in my legs runs from my knee down the outer portion of my leg, and it keeps me from settling.

That's where the Motion Medicine comes in. I rub it down the outside of my lower leg, on my left knee if it aches, and sometimes on my shoulder. There must be something magic in that stuff because I always sleep better when I've used it.

The smell is strong, and I've learned to wash my hands with soap after (even though I'd like the pain relief for my hands) because it's a mistake to put this stuff anywhere that might touch near your eyes.

So, a big thanks to my son, for the gift that keeps on giving.

Thursday, 5 January 2017

What Was I Thinking?

I went grocery shopping yesterday at 'No Frills'...a bag your own grocery store for those who are not familiar. I usually go with my daughter as, first, I hate the parking, and second, she bags my groceries and does all the heavy lifting.

I ventured out this time with my neighbor, and all went well until I was packing my groceries. I always feel such pressure to be fast, and the bags never cooperate so I end up tossing everything in with no order.

Yesterday, as I reached for the button to move the belt along, I twisted or did something to my 'bad' left knee. The pain was horrible and I needed to take the weight off of it and ended up leaning on the counter...an immediate attention getter.

I was still in pain, but able to walk home and get my groceries away in the fridge, freezer and cupboards. Then I covered my knee in this great pain relief ointment and laid down.

I'm a multi-tasker, so while I rested my knee I started a new crochet project. And here's where I went from resting to stupid.

My pattern fell between the bed and the wall. I tried to reach it and got my 'bad' left wrist wedged and had to tug to get it free. I decided to move the foot of the bed away from the wall, and managed this but still couldn't reach the pattern.

Now, I was determined, and the only solution was to move the head of the bed out from the wall. I eased the bedside table out of my way, and pulled on the bed. I felt a rip of pain immediately down my right side.

I spent an uncomfortable night, took some Tylenol, used lots of the analgesic ointment and rested under my heated blanket.

A couple of time during the night I barely made it to standing, and believe me it was a struggle to get to the bathroom. By morning I was still stiff and sore, slept in and finally forced myself to get up and moving.

A little activity goes a long way and I soon needed to rest. Now, dinner done and out of the way, I'm ready for my bed.

Downside to it all, I played with that pattern and decided I didn't like it. Should have left it behind the bed and saved myself a lot of pain and aggravation. Lesson learned.