Spoon Theory

Years ago I attended a workshop for health care workers; the purpose was to increase awareness for what it meant to live with an increasing disability.

Each person in the group was given a number of small pieces of paper. The first direction was to write the names of the four most important people in their lives on separate pieces of paper, then four activities they enjoyed and finally four important possessions, leaving their papers stacked and sorted in front of them. There was much teasing and table talk about kids and spouses, who to include, who not and whether sex was an appropriate activity to list. I remember very clearly and was impressed with how busy some of these women were, their activities were skiing and traveling, their items things like cottages and swimming pools.

With all of their pieces of paper, in three piles in front of them, the instructor walked them through a case history of a patient with rheumatoid arthritis, describing a scenario of increasing pain, loss of independence and mobility. At each worsening stage of the patient’s disease, the group was asked to take away one piece from each pile of paper. That meant losing a thing, an activity and a person, cutting them out of their life. The first time was a shock, the second more startling, but when it came to the end and many of the attendees were forced to decide between spouse and children, the purpose of the workshop really hit home.

Most of us worked in Long Term Care, so this was a good exercise. It made us much more aware of the losses our residents suffered before they were admitted to the nursing home and what that admission really meant. It was losing that final piece of paper.

Through the years I conducted a form of that workshop with various staff, and was always moved by their response, the change in attitude and increased understanding.

Now I find myself in a different situation. I’m not the staff member learning to empathize with the resident’s situation; I’m living it, giving up pieces of my life just as I once gave up those pieces of paper. But how can I explain this to friends and family without going through all these steps?

By chance, as I was browsing through Pinterest, I found the solution. It’s called The Spoon Theory. I found a post, ‘Living with Lupus’, written by Christine Miserandino. She writes about a time when a friend asked what it was really like, living with lupus. I thought she was lucky to have this friend, someone who wanted to look beyond the list of symptoms, the stuff one might read about, someone who really wanted to understand what her friend was going through.

Christine explained it very well with her Spoon Theory. Where the workshop gave an explanation of changes over years of a disabling or chronic disease, the Spoon Theory makes it more immediate, as it applies to daily life. The women were in a restaurant at the time, so Christine gathered together a bunch of spoons and held them in her hand. Most people start their day with an unlimited number of possibilities. The spoons are an analogy for what it’s like living with a chronic disease. With a chronic illness one is constantly counting spoons, as the number is limited and you can run out before you’ve accomplished what you want or need to do that day. Just the effort of getting up, showered and dressed may deplete your daily quota of spoons.

Check it out at www.butyoudontlooksick.com/wpress/articles/written-by-christine/thespoontheory/.

Christine did us all a service by giving us a way to explain what it’s like to live with a chronic and often invisible illness.

#38 Second Verse, Better than the First

I wrote before about how emotional it was for me the first time I used the walker in public, away from my more private walk to the car. I found myself still resistant to take it out of the car, and would struggle with the cane.

There are pros and cons for both. The cane is smaller, doesn’t take up space in a restaurant or store, but it keeps one of your hands occupied and that can prove awkward. The walker has a built in seat, a carrying container and stands on its own so you can have your hands free. But the walker takes up space that makes moving about more of a challenge. Like opening doors. The walker is in front of you so you can’t reach for the door to pull or push it open. You need to use the automatic door openers, which slows traffic if people are coming in the door behind you. And there’s always that question of where to put it, like in a restaurant, so it doesn’t block the aisle and trip anyone.

After the MS Walk in May, which my family did en mass, we decided we wanted team shirts for next year’s walk. My friend tells me one can do this quite easily by creating a design on the computer and printing it on special sheets that will iron the design onto your shirt. She makes it sound so easy and got me all enthusiastic. But first I needed the shirts, all fourteen of them.

Michaels Craft Store has all the supplies for this, including T-shirts in a rainbow of colours and assorted sizes. So my friend and I made a trip to the craft store when I saw the shirts were on sale…2 for $6.00. I do so love a bargain.

I drove that day, and conveniently had the walker in the back. At the store I told my friend I was going to use it, and she understood that this was another milestone for me.

I parked myself in front of the shirt display and sat. It took some time to find a colour that had every size available from adult extra large down to youth small, but I finally did it. And, I can admit now, only did it because I was sitting and not constantly dealing with the pain of standing, bending and juggling cane and purse.

Sometimes we old dogs have trouble learning new tricks. Oh boy, here’s another one, sometimes practice makes perfect. Why do I feel like I just had a conversation with my mother? LOL

#37 The MS Walk

April 27^th was the annual MS Walk, their slogan is Every Step Counts. This fundraising event involves more than 40,000 walkers in more than 160 communities across Canada. In my community there were 156 registered walkers, and 23 teams, and at the last tally they made more than $47,000 for MS research.

I am very proud that one of those teams is made up of the members of my family.

I have volunteered at a Walk and am always impressed with the time and effort taken to make sure everyone has an enjoyable experience. Each walker gets a goody bag and food and drinks are provided for everyone at the end of the walk.  The mood is high; everyone enjoys the camaraderie and shared hope for a cure.

Though I have mentioned that I have Multiple Sclerosis I have tried not to belabour the point in my other blog, though I know it has come up now and again. This last year has been a tough one as I’ve had a relapse that I have not recovered from. I’ve had to make adjustments, a major one was to ask for and accept help.

Unable to do the walk, I was on pooped patrol today; my duty was to pick up the stragglers who were not going to make it the entire 5 K distance. At the half way point I picked up three 5 year olds and one other granddaughter, age 9. We went for a drink and met the rest of the group at the high school, the end point for the walk. The entertainment was provided by a young singing duo, and volunteers manned the buffet table where lunch was available, pizza, hot dogs, snacks and drinks, plenty for everyone.

We had our picture taken as we won first prize for team name. Debbie does MS. What can I say; my kids have a strange sense of humour. Of course the joke with the name was lost on the younger kids. Myself, I’ve lived with the jokes through the years, with a variety of versions of what Debbie does. Next year we’ve vowed to have team shirts, and everyone has already signed up.

I had a bit of a melt down at one point. The duo was singing a Keith Urban song, always good for an emotional response, and I looked over at my group as they chatted and enjoyed a snack after the walk. It struck me, how much it meant to me that they had taken the time out of their busy lives to do this walk. This year, a year when I have needed the support of the kids, they have never let me down. It was as if they were doing the walk and stating, in clear terms, that they were there for me.

I know I’ve made it difficult for them at times. I tend to hide bad news, trying not to add any further stress to their lives, but as I’ve been told, it’s easier to cope and accept when they have time to deal, than to be hit with something serious after the fact.

It was a great day.

#36 Using the Walker in Public

I was to attend the annual meeting for a community organization to which I belong, and faced a dilemma. I looked forward to the opportunity to shop at the mall, where the meeting was being held, but knew I couldn’t comfortably do the walking without the walker.

I had not been in the mall for years, and wanted to finally use the gift card I’d been holding on to for thirteen months. When I spoke to my daughter in the morning (she was attending the same meeting) to confirm travel plans I informed her I was going to take the walker…and immediately burst into tears.

I had initiated the purchase of the walker, had used it without reservation, or so I’d thought. Actually, I had not accepted it at all, not really. It was OK to use the walker within my complex, walking to and from the car, but I had never used it ‘out in public’. There are different levels of disability, a minor one that requires a cane, and a more major one that needs a walker; the next step could only be a wheelchair. Right? All this emotional angst, and I hadn’t left the house yet.

To use the walker for the first time in front of people who had seen me with the cane, who knew of my disease was easier, but I still felt like I was being outed, or maybe labelled is a better word.

I did a bit of shopping before the meeting, enjoyed window shopping and the book store, and was feeling comfortable with the walker. The meeting went well; we got a table in the corner where I had space to leave the walker, within reach but out of other’s way.

After the meeting it was time to spend my gift certificate. The store I wanted was, of course, at the far end of the mall. I made my way there and proceeded to shop. The spaces in the women’s clothing section were narrow, and I had trouble getting the walker through without snagging clothes or knocking items to the floor. I turned down aisles only to find the end blocked and had to turn around and go back. I began to feel like I was on an obstacle course and the challenge was to find my way through the maze.

Finally, I found things to buy and took my purchases to the cashier. By this time I was tired from too much walking, the social activity and the general stress of the day. When the clerk had a problem with the gift card it was the final straw. I was in too much pain to stand, and my brain was about to enter a fog. Why did there have to be a problem with everything?

I turned with a look of apology to the woman waiting beside me and caught sight of the walker. Suddenly I realized I had a seat. I didn’t have to struggle to stand, I could sit and wait.

Being able to sit for those few minutes saved me that day. I’m not sure if I could have made it back to the centre court of the mall to meet my daughter if I hadn’t had that time to rest and calm myself. All the frustration of those few minutes of shopping, the pain, getting overheated wearing my winter coat, the bending to replace things on shelves or hangars, had stressed me to the max, which meant an increase in symptoms.

I can’t say that it was a happy ending, baby steps, I’m taking it in baby steps. I haven’t been in a mall since that day. I still use the cane and only shop where I can use a cart. Being able to lean on the cart eases my pain, and though it may not be as good as sitting but its better than the cane alone.

Next time, it’ll be easier. The first time is always the hardest.

#35 The New MRI

I was tired of these brain MRI’s. I dreaded being confined in that closed space, felt my tolerance to endure it was not as strong as it needed to be. But I got through it. It was September 2013, three years from that fall when I felt L’Hermitte’s Sign for the first time. In my opinion I had been deteriorating, albeit gradually, ever since that time. Not just physically, but cognitively as well. The constant pain was wearing me down. I would spend most of my day in my chair, doing activities that could be done sitting, or in bed because the fatigue was so great I couldn’t hold my head up any longer.

Instead of the 20 to 30 plaques seen on the previous report, there were now innumerable foci. There had been a progression in the disease, with an “increase in both prominence and number of foci of demyelenation…”. So worse, once again.

And the bad news didn’t stop there. In the MRI of the Cervical Spine, there were “multiple patchy foci…” again increased in both prominence and number.

Oh, but wait, we’re not done. At C4-5 there is “hypertrophic degeneration of the facet joints” with “impingement upon exiting right C5 nerve root. The same for the C6 nerve root.

Basically it showed a progression of demyelination and a progression of multilevel spondylotic changes. No wonder my neck hurt.

I talked to the nurse at the MS Clinic, as they had received a copy of the report. She informed me that the neurologist didn’t base his treatment on the MRI, but more on what clinical signs the patient presented with. There’s that old thing about only 10% of the lesions actually causing symptoms.

We talked about how I was managing, how I was feeling etcetera, and for the first time I heard my MS be classified by type. Not the relapsing/remitting that I had been for years, but secondary progressive. Still didn’t meet the criteria for the big guns treatment, and since I was not actually suffering a ‘relapse’ I didn’t meet the neurologist’s criteria for treatment there either.

Now I’m facing a whole new challenge, changes that may be coming that will greatly affect my lifestyle. I guess, when you think about it, I had a pretty good run since my first symptoms appeared twenty four years ago. Have to wonder where I’d be if it weren’t for all that stress. Could I have managed things differently, definite yes, but it’s hard to see the big picture when you’re struggling alone to get through the day.

#34 Time doesn't always Heal

A couple of months went by, and I was no better, back wise. Everything was a struggle, as I tried to get about my place, make a meal, clean up. I bought a swivel type bar stool so I could sit in the kitchen for meal preparation, cooking and doing dishes.

I was having difficulty swallowing my pills and I felt like my ‘choking’ spells were happening more frequently.

This scary thing started that had to do with my breathing. I could be lying in bed and feel the rhythm of my breathing change. It was almost as if it forgot how to do it, and I had to make a conscious effort to keep it regular. It didn’t happen all the time, maybe when I was feeling more stressed and fatigued.

I was also experiencing bouts of chills, whole body chills, which was odd in the middle of summer. I was used to having isolated ‘chill’ feelings down my leg, but this was different. They didn’t last long, but were uncomfortable for the duration.

And then there were the hives. A couple of years ago I had had a recurring bout of hives, sometimes a rash, where my eyes would feel puffy and my skin itch. I thought it was food but could never get the same reaction to the same food.

I went back to the doctor, my family doctor, because the back pain was getting me down. My mobility was compromised and I needed to know what was what. I’ve had joint pain all my adult life, so living with pain was nothing new, but this was worse than anything I’d put up with before. I was depressed and my coping ability had reached a new low.

I wanted help because of the back, but my doctor was more concerned about the breathing and swallowing. Of course she was, duh, those functions are controlled by the brain. And hey, I had lesions in my brain.

Guess what? I was going for another MRI.

#33 From Cane to Walker

I quickly realized that whatever was going on with my back, it was not going away and the cane was not enough support for me to walk. I called Community Care, spoke to the nurse, and was given an appointment with an Occupational Therapist. She immediately had a walker delivered on a trial basis, and did a complete home assessment. I had bars in the tub, a hand held shower, bars beside the toilet, so I was good there.

I was getting around my unit by leaning on the furniture, and sitting whenever I needed. It was summer, so I didn’t venture far, the occasional lunch with friends, trips to the store. Within weeks I had my own walker, in a jazzy deep red with an attached carrying basket. Now I could walk with more support, standing straighter, and if I got too tired, I had a place to sit.

The therapist outlined the other services that were available, but stubborn as always, I resisted. There’s a nice gentleman who lives a few doors away and one day as I was making my way to the car, he commented that I was walking better. My struggle to walk with the cane had not gone unnoticed. He uses a wheelchair for any distance, a quad cane around the house. We had a nice conversation discussing our mobility aids.

Funny, even with the cane I hadn’t really thought of myself as ‘disabled’. I wasn’t ready or willing to make my disability so obvious. Call it pride, vanity, whatever, but it had taken me a long time to be comfortable with the cane, and now I was using a walker.

The only real downfall to the new place is that lack of a hall. Down the hall was where I could find my friends, and down the hall was where the laundry room was located. Not only did I have a good walk to get to my car, I had the same walk to the office building and the laundry.

I’d load my laundry bag on the walker, along with a notebook or a novel, maybe some crocheting, and prepare to sit in the common room until my wash was done. I couldn’t trust that I could do the trip twice if I went home for the hour the dryer ran. The positive note to all of this is that it provided me with an opportunity to meet some of my neighbours.

I also used the walker to get to the car, but once that walker was loaded in the back, I used the cane. I was never walking far, maybe into a restaurant, or into a store where I’d have a cart to lean on. But like the cane so many years before, that walker never left the car.

#32 Another Move, Another Relapse?

I had had my name on the waiting list for a unit in the senior’s complex here in town. The units are small, but I liked the fact that they each had their own front door, a bit of a patio and a garden. The rent was much less than I was currently paying, and I needed to think ahead, to retirement. I was restless where I was, and who wouldn’t be, I had been almost house bound for two years because of the hot weather and then the winters. My world had gotten smaller as I was able to do less and less.

In the winter of 2013 I got a call that a unit was available. I gave my notice, signed a lease and immediately jumped into the major job of sorting out my stuff as I would need to drastically downsize. I was a pain in the ass, as I’m sure my kids will agree. I needed their cooperation, take this, store this, get rid of that. The whole ordeal was so stressful, for all of us.

I got moved in by June, had a respiratory infection at the end of the month that lingered for weeks, and I did something to my back so that I could barely walk. The summer was just as hot, if not hotter than the summer before. Everything was a struggle. I’d lost my community of friends living just down the hall. I didn’t know anyone at the new place, and I couldn’t get out and around due to the pain.

I put on a good face, it was summer and everyone was busy, thinking I was nicely settled into the new place. But I was depressed, feeling isolated, and OK, woe is me, ignored. It was a major chore to get to my car, to get the laundry or housework done, to get groceries.

I needed help, and I finally made a good decision, I called Community Care.

#31 Stress and More Stress

In the fall of 2012 I was encouraged by those in my writing group to enter the National Novel Writing Month Challenge to write a novel in thirty days. I had a story idea and decided to give it a try.

To make the 50,000 words required to be successful at meeting this challenge, you have to write about 1650 words…per day. What I liked about the whole thing was the writing community that you immediately became a member of. There were numerous chat rooms to join, and your progress, and that of your friends could be monitored throughout the month.

I managed to complete the rough draft of a book and when it was done, I realized that after the end of November came December, which meant Christmas was only three weeks away. How could that be? I’m usually ready, gift wise, long before December, leaving those last few weeks to wrapping gifts, baking, and social time.

Now, after the pressures of November, self inflicted though they were, I was being totally stressed out by the holiday. I pushed myself to maintain the same level of activity and accomplishments.

I usually anticipate a ‘crash’ after the holidays, and since I had not been at my best for the last two years, I expected that the winter of 2013 was going to be a rough one. 

#30 Another Hot Summer

I had a bit of a relapse in 2010 when I had a positive L’Hermitte’s sign. My doctor made arrangements for me to be seen at the Kingston MS Clinic. I am afraid to drive into the city and after all the time that’s passed since my last appointment in Toronto, it seemed a logical decision. I didn’t see the neurologist until spring in 2011, and had a new set of MRI’s done, this time including the neck and spine. Even though there were significant changes, it was back to no treatment, see us again next year, and call if you need anything.

I went back in 2012 and nothing much changed. I don’t qualify for any of these new drugs, and I’m just as glad not to be into daily injections and more frequent trips out of town. Fatigue was still an issue, and I was walking with the cane. The other symptoms came and went.

That summer was terribly hot, right into the fall. I didn’t go anywhere and was almost house bound. Any energy exerted required a day of rest, or more. I was glad to see winter come, something new for me. I figured I’d bounce back after the change of season, but I never really did. It was a good thing I have so many hobbies that I could keep myself amused, and I had my family, and my friends.

#29 The MRI Reports

The good news, the thoracic spine showed no sign of cord pathology. The cervical spine showed numerous plaques or lesions at many levels throughout the spine. It also showed some skeletal issues, osteophye this and stenosis that.

The brain, well that was a different story. And I quote…’there are extensive white matter plaques’, 20-30 plaques of varying sizes, many new since the 2006 exam. There were plaques in the brain, the periventricular tissues, the corpus callosum, the brainstem, and the cervical cord. The way they report it is to call it an exacerbation.

Even though there were significant changes, it was back to no treatment, see us again next year, and call if you need anything.

I went back in the spring of 2012 and nothing much changed. I don’t qualify for any of these new drugs, and I’m just as glad not to be into daily injections and more frequent trips out of town. The neurologist joked about the criteria for the new drug being two relapses within 24 months. My relapse had been September 2010, so I didn’t qualify.

I felt like the doctor put a curse on me, just joking, because as soon as the 2 years were up I started to have increased symptoms.

Fatigue was still an issue, and I was walking, always, with the cane. The other symptoms came and went.

That summer was terribly hot, right into the fall. I didn’t go anywhere and was almost house bound. Any energy exerted required a day of rest, or more. I was looking forward to winter, something new for me. I figured I’d bounce back after the change of season. It was a good thing I have so many hobbies that I could keep myself amused.

#28 Flare-ups, Attacks and Relapses

A relapse is the appearance of a new symptom, or the significant worsening of old neurological symptoms, lasting more than 24 hours and occurring without fever or acute illness.

It was once thought that each relapse indicated the development of a new lesion in the brain. But, apparently only one lesion in ten cause symptoms and an attack can occur because of the creation of a new lesion or the enlargement of an old.

There are differing opinions on how to treat relapses, depending on the severity of the symptoms. Often it’s advised to just rest more, like we don’t already do that, and not as a conscious choice but as we can’t do anything else with the increased fatigue and other symptoms.

I recognize that with each flare-up I’ve reached, or more like fallen, to a new level, and I will never regain my original state. It’s been a gradual thing, subtle changes that I’ve adapted to with time.

The summer of 2010, with its continuous heat, brought about a flare-up with my new symptom, the L’Hermitte’s sign. My doctor made arrangements for me to be seen at the Kingston MS Clinic. I am afraid to drive into the city and after all the time that’s passed since my last appointment in Toronto, it seemed a logical decision.

The consultation at the MS Clinic didn’t take place until the next spring. The first step was to have a complete set of MRIs, brain and spinal cord. Again it was a waiting game, waiting for the appointment and waiting for the results.

#27 L'Hermitte's Sign

L’Hermitte’s sign is an electric-shock type of sensation that runs down the spine when the head is bent forward.

About four years ago I had a particularly uncomfortable summer due to the continued heat and humidity in the months of July and August. I had been housebound for a great deal of that time and looked forward to fall when the temperatures would be more tolerable, and I could get out and around without fear of worsening symptoms.

I kept myself busy, writing one book and editing the draft of another. Then, late one September night, after way too many hours at my computer, I went to print off a copy of the day’s work. When I bent down, adding paper to the printer under my desk, I noticed this weird sensation in my legs and feet.

More than a tingling, it was a shock-like sensation. I was used to some numbness and tingling. It went with the swollen feet and ankles, the result of sitting too long with my feet down. So, I ignored it.

Then one day I was in the car and reached down for something I’d dropped on the floor, and it happened again. It was like a game at first, when I realized I could make it happen. Every time I flexed my neck I got that shock-like sensation, not only in my legs, but down my body.

My brain may be slow, but the memory finally kicked in. I remembered reading about this some years before, when I was first diagnosed.

So, I did some research and found Lhermitte’s Sign. And now I had reason to be concerned, as to have a positive Lhermitte’s Sign, as a new symptom, indicated a new lesion in the cervical spine.

My doctor ordered a new set of MRIs which confirmed an increase in the number of lesions in my brain, and numerous lesions in the cervical cord. I had a new symptom, which meant I was having a relapse.

#26 And Life Goes On

I entered into a phase of what I called my half life. For every day of activity I planned, I would need a day of rest, before, and could anticipate a crash day after.

I was very cavalier about it all, joking about the half life stuff, because for half of my time, I did have a life, of sorts. On my ‘crash’ days I still could do things, I just stayed home so I could nap and rest in between periods of activity.

If I did too much I paid the consequences. Fatigue seemed to be the worst of it, and if I let myself get too tired, my other symptoms worsened until I got the rest I needed. There were times I could anticipate a ‘crash’ as I liked to call it. Christmas was a big one. The weeks leading up to the holiday, the shopping, wrapping presents, the Christmas activities, all took time and energy, and depleted my limited resources.

It was a simple life. I could plan some events, and automatically planned the days of rest after. I enjoyed times with the family, and the grandchildren which at this time numbers six. I had re-connected with two friends I had known from the early years and had new friends in my apartment building.

The summer of 2010 was hot and my activities were limited. But I had friends in the building, and I had my writing, so it was a quiet time I just had to wait out until the cooler weather came. I had always loved autumn and was looking forward to the change of season, but it was another kind of change that altered my life.

#25 The Changing Course of my Disease

In the beginning the doctors called my MS benign. They considered it mild and basically asymptomatic. My neurological tests came back normal, and they didn’t recommend any real treatment.

I was already on an anti-inflammatory for joint pain, and because I was complaining of fatigue, I was put on an antiviral medication thought to be of some help. I couldn’t take the dosage ordered because of the resulting swelling in my feet and legs. That drug was known to be particularly harsh on the kidneys. I stayed on a once a day regimen for years.

The doctors I’d seen were pretty good at avoiding labels. They never once said the words relapsing/remitting, secondary progressive or primary progressive. They seemed to look at my status and deal with whatever it was I presented with.

My disease seemed to change every five years or so. Official diagnosis was in 1996, and in 2001 I was on disability, for cognitive issues more than physical. Things stayed pretty good for the next few years, physically at least. I was still walking without any aids and living independent. The emotional issues of dealing with the sudden loss of my career were a bigger problem. I was depressed, making poor decisions, and living an unhealthy lifestyle. I had not seen the neurologist since I’d left the city in 1999, and was working entirely with my family doctor. I refused the counselling the psychologist that did the cognitive testing recommended.

My symptoms increased and I had another MRI of the brain in 2006. Odd, but as I write this I’m unsure why I had this test, and why I didn’t end up back at the MS Clinic. I know reading the radiologist’s report; I had more than 30 lesions in my brain. Knowing this left me confused and unsure. I started into a few projects that I felt were necessary, as I remember fearing I was going to lose memory, along with other brain functions. This was when I started writing family histories, information I thought the kids might like to read someday, stories that could be lost with my poor memory.

I recognize that a lot of my behaviour was self destructive, and after all those years as a nurse I should have recognized how much trouble I was in, but I didn’t. It was still a pinball kind of existence, rebounding rather than being proactive. I was pretty good at putting up a front for family and friends and suffering when alone.

In 2009 I was still depressed and hit rock bottom. I reconnected with my brother, not so much out of choice but because he’s a stubborn SOB who wouldn’t take no for an answer. I got the help I needed and could finally see some light at the end of the dark tunnel I had been in for so long. I gained a level of contentment, looked up old friends, made new ones where I lived. And I stayed close to my brother with monthly lunches; weather permitting (he’s in the city).

I even joined a Writer’s Club though I hadn’t done any real writing for years other than journaling. I do believe the writing has been a life saver. It forces me to use my brain, like my personal Lumosity game. My memory is better, as is my use of language, and my thinking process. I have more organized thinking, more control over my life than in the last ten years

Wouldn’t you know that just when I was feeling some personal contentment, the physical side of my disease started to act up.

#24 Seeking Home

It came to my mind as I was writing this; going back to the beginning, that I have moved an incredible number of times. From the time I was divorced, twenty-seven years ago, until now, I relocated twelve times. That averages a little more than 2 years at each location. Some of those moves were justified, many were not.

The first move was from the house we shared in the country to my own place in town. I liked that little semidetached house, had enjoyed picking out my cupboards, counters and carpets, as the house was new. The kids had their bedrooms on the lower level with a bathroom/laundry and a family room. The school was just down the street. I was working part time, and with some extra shifts here and there, I could manage financially. Reality hit when I broke a bone in my foot and realized, no work, no pay. As soon as I could get my swollen foot back into my duty shoe I was back to work. The next year I hurt my back and I knew I needed a new job, with no heavy lifting, benefits and full time hours. That need became even more urgent when I was laid off.

The next move was out of necessity, when we moved to the city for my employment.

But once in Toronto I moved another four times. Why? We had moved into a duplex apartment, then into the townhouse complex where my mother lived. Once there I moved from one townhouse to another, can’t remember why. After Mom died and my son moved to his Dad’s, I bought a condo for my daughter and me. A lot of moves, but in my own defence, the kids were in the same neighbourhood and never had to change schools. When his Dad divorced for the 2^nd time I thought my son might move back to the city and moved again to a townhouse where there would be room for him. It was maybe some wishful thinking on my part, for I missed him terribly. Deep in my heart I knew it was not going to happen, but I moved anyway, just in case.

In retrospect, I can see these moves as examples of poor judgement in my thinking. If I’d been close to someone, a friend or family, would they have seen this faulty thinking and helped before I really messed up? I don’t know. I was functioning at work, excelling really because I gave it all my energy. Mistakes were made…stupidity on my part or the disease making subtle changes in my personality, my thinking and responses?

During that time I lost both my parents, had a major depressive episode and faced the beginning of my health issues. I can see now how truly lost I was. But I was so involved in my job and the challenge of raising teenagers that I couldn’t see beyond that to anything else. These were difficult years, with overwhelming stress, and experiences best left to the past.

And then I took that job out of the city, another move for good reason, or so it seemed at the time. The stress of everything associated with the move and the job brought about the end of a thirty year career, and put me on disability. Leaving that city was for my own peace of mind, the need to escape a bad experience. I was on disability and needed the fresh start away from the pain of that lost identity. I needed to find my way to who I was…’disabled’.

After that, the many moves were for emotional reasons, trying to find my place, that place where I could feel at home. I moved looking for something that can’t be found in bricks and stone, but had to be found from within. I recognized that, but it didn’t stop me from wanting to seek out that sense of belonging.

I don’t mean to sound like living alone was part of the cause. I'm not one of those women who need a man to feel complete. I like being alone, I like my solitary pursuits and the freedom to do what I want when I want. There is a big difference between being alone and being lonely.

It’s because I have always been a loner, that I don't let people close, don't trust them to be there in the long run, that I feel so lost. If you don’t let people close to you, what can you expect but to feel alone? I needed to find that connection, that sense of community.

One of my last moves was to an apartment in town and I actually stayed there for six years. I found a community in that building. Many of my neighbours were older, some married, some not. I made friends, had people who looked out for me, and for the first time in a long time I didn’t feel lonely. There can be nothing more comforting than to walk down the hall to share a cup of tea with a friend when you feel the need of some company.

The reason I moved again was strictly financial. I’m very close to retirement age and needed to find housing that was more affordable for the future. I moved here last summer; to what you would call a senior’s complex. Each building is made up of four units, for a total of 64 units. The space may be small but I have a front and back door, a small patio and neighbours who are close, across the path if not down the hall.

If not for my recent relapse, it would have been ideal.

#23 Accepting the Cane is Another Story

I was still walking independently, but it was a struggle. My balance was off just enough that I felt the need to touch something as I walked. At home it was easy, I used the walls or the furniture, but out in public it was still an issue. I didn’t realize how much I had adapted my behaviour to accommodate my disease. It was a subtle change, not something I did with purpose.

I only shopped in places that provided carts. I needed a cart for balance, and support when fatigued. I never shopped downtown, even changed my bank to one that was more accessible. That pretty well limited me to grocery and the big box stores like Walmart and Zellers.

I continued to struggle, wanting to remain one of the ‘invisible’ rather than be labelled ‘disabled’ and resisted the cane. It’s a major step, admitting to the fact that you need a cane. I figured it would change how people looked at me, reacted to me, and it did. But not in the negative way I expected.

I spent a few days at my brother's and we made a trip to St. Jacob's. This is a village outside of Toronto with a large farmer's market, an outlet mall and the village core, their 'downtown', a crafter's paradise. I had the cane in the car, and used it going through the market.

A child was walking in front of me in stops and starts, and I was sure she was going to bump me, or worse, trip me. The mother caught up with her, saw my cane, and apologized. She took the girl by the hand and moved to the side. I think she was very smart to be aware of the problem her daughter was creating, for no fault other than she was a child, and sensitive enough to move her away from me.

She gave me a simple 'Sorry' and that was it. Another example of how considerate people can be. When we moved on to the village and parked, I got out of the car without the cane, for it was not yet a habit. I had only gone a short distance, and was struggling, when I felt a hand on my shoulder. My brother stopped me, and said he was going back for the cane. The rest of our day was much easier.

From that day on I have used the cane. Yes, there were the curious people who had seen me without it, and wondered why I was now using it. The kids were fascinated with it and I let them play with it, so they were comfortable seeing me use it.

If you think you might need a cane, I suggest you find one and try it out. Get some professional guidance, from an Occupational Therapist if possible, on how to best use it. There are very specific tips for walking, for steps and even the length of the cane and which hand you use. I can tell you for sure, the way House uses his cane in the television show is not the correct way, so get some help.

A second piece of advice, the first few times you use the cane, go out somewhere where you don’t know people, so you don’t feel quite so self conscious. It’s awkward, to struggle with the cane under the watchful eyes of people who know you, but may not know of your issues. You are no longer invisible, not once you use the cane.

It takes some getting used to, believe me. I carry the cane in my right hand, because I’m weaker on the left side due to my bad knee. Luckily for me, I was used to carrying my purse on my left shoulder. But now both my hands are, basically, occupied. If I need to carry anything it has to be in my left hand, and what do I do with the cane when I need my right hand, like in the bank or to sign a charge slip?

It’s awkward, will always be awkward because you constantly have to adjust to it, using it, carrying it, and where you set it when you sit or need your hands free. But, in the long run, once you get past the looks and the questions, it does make life easier.

On a lighter note, I walked into my daughter’s one day and left the cane in the car. My four year old grandson looked at me curiously and finally asked, “Where’s your stick?”

See, when it becomes your new normal, and people will accept it.

#22 First Time with a Cane

I had a cane…actually I had three canes. One was wooden, with a curved handle, very old fashioned and…manly. Another, also wood, was textured with designs as might have been done on a router. The third cane I bought because it collapsed, and could be packed away in a suitcase or bag. I was prepared, to say the very least.

The wooden canes were tucked into the back corner of the coat closet. The collapsible one was stored in my car, had been there for years because I didn’t have the nerve to use it.

Thinking back, I realize now why I was so hesitant, reluctant even, to use something that would only be of help with my mobility and balance issues. As long as I didn’t use the cane, an assisted device, I could hide my disability. So what if I staggered a bit, was constantly touching the walls, the furniture, whatever, to keep my balance.

I was afraid to use the cane in front of people I knew; afraid I’d look silly, afraid I couldn’t cope with something else I’d have to carry, to keep track of, in addition to my purse.

Then one August day, my friend and I were on a day trip. We had driven to the north, our destination a large outdoor art show. Parking was limited near the exhibits, but was available for a fee in a farmer’s field down the road. A shuttle service was provided, or one could hike through the woods, or along the road. I’d had a Handicapped Parking sticker for awhile, and like the cane, I’d never used it. As we were talking about where to park, we couldn’t believe our luck when we spotted and empty space, right near the entrance.

We were entering the parking lot when we noticed the empty space was a designated Handicapped spot. “I have my handicapped parking permit with me,” I said. We looked at each other and laughed and went to park in the open space. There was a man directing traffic at the entrance and he informed us there was no available parking. I showed my permit and he, reluctantly, waved us on. But he glared at us, not trusting that we were actually deserving of the parking place.

I immediately felt guilty. I could feel the man’s eyes staring at me, judging me. “Maybe I should use my cane,” I said. “Then I’d look legitimate.” I grabbed my cane from the back seat, put my permit on the dash, and got out of the car. And that was the first time I used the cane.

I learned a few things that day. People respect the cane. They respect your space, hold doors for you and are generally kind and considerate. The fear I normally had about being jostled in a crowd was lessened and I had a very enjoyable, though very tiring, day.

It was a start.

#21 Stumbles

When you tend to drag one foot, more so if tired, you really want to watch where you’re walking. Flat level floors are easier, but walking outside, in the grass or on an uneven surface, can be tricky. I remember a day my whole family was together, Easter I think, and we all decided to take a walk along the country road. It was a typical unpaved road, some pot holes and other pitfalls.

,

I was doing okay, carefully watching where I placed my feet until…I was distracted. My granddaughter pointed to the far side of the road, all excited on seeing horses in the field. Of course I looked, didn’t see the pot hole and set my right foot right on the edge, turning my ankle.

With MS, your body does not respond quickly to what your brain tells it to do. A ‘normal’ person would take a few quick steps forward and maintain their balance. My body took that forward motion, but my feet stayed planted where they were.

I knew I was going to fall, there was no way to avoid it, and I remember thinking what body part do I want to hit the ground first, hands, knees or face. It all happened in slow motion, I could feel myself falling and eventually, for it seemed a long time, I hit with one knee and two hands.

There was a moment of shock for all the family, where they just stood and watched me go down, and for a moment still, after I was on the ground. Then everyone moved at once, all care and concern. And then they all laughed.

“You should have seen yourself,” my daughter laughed. She demonstrated with her hand the slow motion tumble I’d taken. I could imagine it and it would have been funny. I had banged my knee and scraped my palms but otherwise all was well. The laughter was a way to defuse the situation, once they knew I wasn’t badly hurt. It was a helpless moment for all of us. I knew I was going to fall, they knew I was going to fall, and there was nothing any one of us could have done to prevent it.

My son insisted on going back for a car to drive me home, and when I felt the pain in my knee, my bad knee, I appreciated his effort.

That’s the thing with MS; you don’t have the ability to make those quick recoveries, so falls happen. If I’m walking on grass I have to pay such attention to the ground, especially if there is a crowd around where I might get jostled and thrown off balance. You have to be alert, a raised crack in the sidewalk, the edge of a carpet, any uneven surface; all are potential risks for someone like me. It means you spend more time looking at the ground than at the world around you.

On the plus side, I was still walking.

#20 Handicapped Parking Permit

I can’t remember when I applied for my Handicapped Parking Permit, but apply for it I did. It was never my intent to abuse it, but there were always going to be those days when I couldn’t find a parking space within my energy limitations, or in winter when I couldn’t trust the uneven snow covered roads.

Take grocery shopping. There’s the walk into the store, the walking around the store, and then the walk out of the store and back to the car. That’s not even taking into consideration the lugging of groceries into the house and putting everything away in the refrigerator and cupboards. All of that takes energy, energy someone with MS just does not have. If, by using the disability parking, you cut some of that activity down, maybe, just maybe, you’ll still be worth something for the rest of the day.

I had the family coming over and needed some last minute groceries. It was a hot summer day, so one strike against me already. I parked in the handicapped spot; my only other choice was at the far end of the parking lot. I mean, come on, what was I thinking to do my shopping late on a Friday afternoon? Not good planning on my part.

I was at the back of my car getting grocery bags, when a woman came out of the store and began to unload her groceries into the trunk of the car beside me. She was not in a handicapped space, her timing was just luckier than mine that she found a spot so close to the store. I could feel her glaring at me, and I mean glaring, daggers for sure. What had I done to warrant this I wondered, and looked at her in question?

“You don’t look very handicapped to me,” she said, her disgust apparent in her tone.

I was hot and tired already, and not accepting of this woman’s derision. “I have MS.” I told her. “I may look okay now, but why don’t you wait until I come back out and you’ll see how much I’m struggling.”

She wasn’t going to concede willingly. “Then you should have a Handicapped Parking Permit.”

“I do have a permit, its right there on the visor, look for your self.”

That shut her up. She mumbled an insincere apology and hastily got in her car and drove off.

But she’d left me angry and expending more energy than I needed to because I was upset. Her comments hurt with their callous disregard and lack of understanding. There’s that ‘invisible’ disability again. We should all give others the benefit of the doubt; we can never know for sure what others might be struggling with. Not all disabilities are obvious.

Think about it. What about the woman with heart disease, the man with emphysema, or those people in pain? They are just as disabled in their way as the person with the walker or wheelchair. Who are we to judge?

#19 Heat Intolerance

I remember, during my first appointment at the MS Clinic, the neurologist asking me what happens when I take a bath. I thought it a strange question because I didn’t know that heat could adversely affect people with MS.

It made me think about a conversation I’d had with my daughter. I had spent a Saturday afternoon enjoying a long soak in the tub. It was my “Calgon Moment”, reading a book and soaking up the comforting warmth of the water. But, coming out of the tub I always felt weak, overheated, lightheaded, and would immediately lie down.

My daughter was smarter than me because she had noted that this was my normal response to a bath, not a rare occurrence. I hadn’t figured it out for myself, but her comment and then his question put it all into focus for me.

The doctor called it a ‘hyperthermic response’ but the official term is Uhthoff’s Phenomena, and basically it’s heat intolerance.

I remember another day, a summer day, when I parked behind the town hall because I needed to pay my taxes. In the office I was informed that they didn’t have Interact and so I needed cash or a cheque. I had neither with me and decided to walk down the block to the bank. Bad idea.

At that time my balance was okay, for most of the time, but I always felt better when I had something to hang onto or touch. But walking downtown didn’t give me such hand holds, though I did stop once or twice to touch the building, pretending to look in the shop windows. By the time I got to the bank I was so weak and tired, my head felt fuzzy and I was red faced and in a sweat.

The teller asked if I was okay, and I said yes, even though I knew I wasn’t. I decided to not to walk the main street back to the town hall, but took the back way, along the parking lots. I was stumbling along and absolutely missed seeing the road bump in front of me. Of course I tripped, lost my balance as I have no recovery, and fell flat on my face in the road.

There were people around who were shocked, but quickly came to my aid. I had landed hard on my knee, ripping my jeans, falling forward on my shoulder, hitting my head. Talk about mortified, way beyond embarrassed. These kind people helped me to my feet and were crowding around me, adding to my over heated situation. One understanding lady asked where I was going, and offered to drive me to my vehicle. I took that ride, and sat in my car until I was cooled down and rested, before I went in the office and paid my bill.

So, there you have it, heat intolerance, from exercise, hot baths, anything that causes an increase in your body core temperature. The good thing is the effects are temporary and will disappear with rest and cooling.

A warm bath is a luxury, one I was not willing to give up. With as much joint pain as I have it is also therapeutic, or so I tell myself. Now, I only bathe at night when I will be heading to bed immediately after. I often remain in the water as it cools, or should I say as I cool. It works better that way for getting out of the tub.

So no hot tubs or saunas in my future, and that’s okay, they weren’t part of my past anyway. But, there’s not much I can do about hot summer days but stay inside, stay cool and wait for fall.

#18 An Excellent Read

I found a book called “Women Living with Multiple Sclerosis”. It’s written by Judith Lynn Nichols and her Online Group of MS Sisters.

The group met in an information area of the internet and evolved into a consistent group of twenty-plus women, of varying ages and lifestyles, but all with one thing in common, they all have Multiple Sclerosis.

They communicated online, and talk about everything related to coping with MS, a chronic and progressive disease. Each chapter of the book picks a specific aspect of living with MS and is drawn from the message-board conversations and other E-mail responses to the author’s request for information.

What I like about the book was the stark honesty of the women. There is much about this disease that is personal, and embarrassing, and the talk in the book is frank and open. I found comments in the book that verified some strange feelings I’d experienced and I found comfort in knowing it was related to my disease, that others shared the same symptoms.

The section on finding the correct neurologist was interesting, as doctors often overlook or disregard your feelings, or your struggle to get through the day. The foreword, by a neurologist was particularly enlightening, as he admits to being more understanding of his patients’ struggles after reading the book.

The book’s description of the symptoms is much better than the list of words you commonly see. I found the confirmation and the descriptions helped me to communicate with my own doctor.

I read the book once, then read it again and highlighted all the symptoms in the book that I experienced. Inside the cover I wrote the date, and highlighted it. Then a couple of years later I read it again, highlighting any new symptoms in another colour, again dating it in the inside cover. I used the words of these other women to document my own journey.

There’s a second book, published in 2000, “Living Beyond Multiple Sclerosis-A Women’s Guide”. I have read it also and added it to my MS library.

The books are an excellent read, written in the words of women just like me. Women struggling to come to terms with their disease and the changes it has made in their lives.

#17 Another Kind of Grief

In 2003 I moved yet again. I had been living in the country, thinking it would be an ideal life. Actually I was subconsciously trying to rekindle some of the feelings from an old life is what it was. When I had lived in the country before I’d had a partner, someone to share it all with, and this time I was very alone, without any sense of belonging or neighbourhood.

I moved into town, to a townhouse complex that provided me with lots of neighbours, not friends, but neighbours. I understand now that my constant need to move is my way of searching for home. I had never found my sense of belonging, that place where I could be happy. And I never would if I kept looking outside of myself. Home is a feeling generated from within.

My ex-husband lived not far away with his current partner, and he walked my way a few times with his dog. We had found a sort of friendship over the years, were still parents to our kids and grandparents to their kids. We were still family of a sort.

I received the call late one night, and my daughter told me that her father had collapsed playing hockey and was at the hospital. Ten years after a triple bypass, his heart finally gave out. Of course I went immediately, my kids would need me. He was gone when I arrived, and I waited, with his partner, his team members and my daughter, waited for my son to come from out of town.

I helped the children the best I could, being there, staying in the background, and watched. The continual parade of people that came to pay their respects was amazing, old friends, neighbours, coworkers, and all of the family that I had once loved like my own. These were people from my past, and I saw what it meant to live in one area for more than thirty years, the connections and the comfort.

I spoke with people I hadn’t seen in decades, and my emotions were mixed at times. Anger that the divorce I hadn’t wanted, and a need to find employment had robbed me of the stability I saw in his life. Even though he had married and divorced a second time, had had numerous partners, he’d had the same job, lived in the same area, maintained the same activities.

I was also sad, for time and distance and pain hadn’t diminished the fact I still cared about him. I wasn’t a widow, but I grieved.

And I fell into another deep depression, closing down, shutting everyone out.

#16 So Now What?

The fall of the year I went off work there was an event with disastrous impact and results. September 11, 2001. I was home and glued to the television as was most of the country. It stayed with me, to be truthful; you couldn’t get away from it. The artist inside me that had been silent for so long suddenly awoke, and I created a work of art, so different from anything I had done before. I had finally found something to fill up my time, and being creative soothed my damaged soul.

I hated the town where I had moved with such promise, and moved, closer to the kids, at a sort of half way point. I began to concentrate on my creativity, making clothes for my granddaughters, writing stories for them, and painting. It filled my time, gave my mind something to concentrate on, but still…I was unhappy, alone, with too much time on my hands.

The two years went by and I received notice that I was accepted for Long Term Disability. It was a relief, and yet it left me with a “Now what?” question. I hadn’t realized how short sighted I had been, never thinking beyond that 2 year time frame. I wish I had sought out some counselling, someone I could talk to. I had some crazy thoughts, not the suicidal ideation stuff, but stuff about family, money, my value as a person. Maybe a counsellor could have helped me sort through all those feelings and the years to follow would not have been so painful.

Subconsciously, by neglect and by making bad decisions, I showed I didn’t care. I was totally apathetic. At a time when I should have sought out counselling, family, or friends, I blundered through alone. The worry that had hung over me, like a black cloud, was finally eased when I went on disability, but I still had the empty days and a staggering sense of loss of self. I was making my way, one day at a time.

My second granddaughter was born during that time, and a new baby is always a happy event. But as much time as I spent with my children, being grandma to their kids, I still spent too much time alone, feeling separate and isolated. It was as if I lived two lives, the one I showed to the family, and the one I lived when alone. I had no idea who I was anymore. It seemed a lifetime since I had left Toronto, for in those five years my life had been unbelievably altered.