#15 The Paper Process

My initial time off work was considered sick time. I had accumulated a number of sick days, at the new job and from what was carried forward from my other position. When the sick time was used up I went on Short Term Disability…for two years. I treated it like one long, long weekend, never looking ahead to what happened on Monday.

I hadn’t let myself think or plan beyond that 2 year time frame, because I didn’t want to think about what I would do if I didn’t get the disability. At times I didn’t care one way or another if I lived or died, that was how isolated and alone I felt.

I had lost myself. Though there were the times I played the role of Mom and Grandma, it was never enough to fill the empty spaces. It’s hard to explain, because I love my kids and grandkids so much, but there was a big part of me that was missing. Some of that has to do with being alone, trying to come to terms with the empty days, and finding some purpose in them.

It’s funny, but when my father died, I thought my Mom would turn to her art, because she now had time to give it all her attention. She didn’t, and I couldn’t understand that until I was faced with too much time on my hands. Art was never going to be enough to replace what we had lost.

At the end of this two year period my ability to return to my previous position would be assessed and a determination made regarding Long Term Disability. Did no one ever tell these insurance types that ongoing stress was harmful to someone dealing with a chronic illness? Two years is a long time to live in limbo. I was a workaholic, and for the first time in more than ten years I faced empty days with no where to go, and not knowing when it would end, how it would end. If I got turned down for the disability, what kind of work could I do? Fatigue was a constant concern, but it was more the problems with my working memory, how was I to learn new tasks?

I was depressed, and further isolated myself from everyone I knew. The loss of my career was to lose myself, my identity. As far as I was concerned, I had two years to live, depending on whether I got the disability. Depressed, yes, and at times I know I was suicidal, but beneath the depression I think it was more suicidal ideation, thoughts born out of desperation, but not something I would do in reality.

#14 Cognitive Testing

I used to have such a good memory, especially for numbers. The doctors at work, in Toronto, before memory became an issue, used to marvel that I knew all the patients and their histories, and could rhyme off the results of their blood tests without having to refer to the chart. I was detail oriented, I was caring, and I was supportive of the patients, their families and my staff.

I was respected and I was capable, but after all the stress of the move and the new job, I was no longer any of those things. When I left my job under these negative circumstances, I felt I had nothing, was nothing.

The cognitive testing at St. Mike’s Department of Psychology was one of the most painful experiences of my life. The tests are varied, looking at memory, concentration and attention. I could give you all the names and specifics but…not necessary. As we went from one test to another I knew I was failing, though these were not exactly a pass or fail kind of test. But I understood, as we completed the two days of testing, that I had some severe problems. When I met with the psychologist at the end, I broke down and cried, knowing my life was never going to be the same.

I had lost the one thing I had always prided myself on, my intellectual functioning. I was no longer the smart girl.

The end result was I had a specific impairment of my short-term working memory. This was a specific, and I quote the report, neuropsychological impairment with serious implications for her ability to successfully fulfill her duties at work.

It was suggested that I would qualify for long term disability. After that, what other choice did I have, my 30 year career as a nurse was over.

#13 A Life Saving Resource

# 13 A Lifesaving Resource

When living in Toronto, I was working, and coping, so I didn’t seek out any help from available resources. Oddly enough the support group meeting that I did attend a couple of times was for Myasthenia Gravis, not MS. A friend and co-worker had left work on long term disability because of this disease, and I attended the meetings to see her, as she was actively involved with the organization. The medical information might have been different, but the message about dealing with a chronic illness was the same.

I attended a MS meeting when I left the city, but it was difficult. It was a small, close knit group of long standing, and I felt out of place. The fact that I knew my condition was changing, and many of their members were in wheelchairs might have had something to do with my discomfort.

When I knew, and more importantly, admitted that I was no longer functioning at my job, I turned to the MS Society. I called the number in Ottawa and spent the next few hours on the phone with the most wonderful woman. I cried; it was overwhelming to have someone listen; who did not judge, and who understood all that I was going through.

By the time I got off the phone we had a plan. I was to call the MS Clinic and request a neuropsychological assessment because of cognitive difficulties. To protect myself at work, since I had not received any support, I was directed to undergo testing, to know and verify the actual extent of the problem. It was suggested I take a medical leave from work until the testing was completed. She also sent me a book on MS and cognitive difficulties which explained many of the issues and the tests that would be conducted.

I contacted my doctor immediately and made an appointment. After that, I was signed off work, and as it turned out, never went back.

I still don’t make use of the group meetings, because I find it difficult to join an existing group, not that new members aren’t made welcome. I think about it, and maybe someday.

#12 Cognitive Changes

Cognitive changes can sneak up on you. Everyone has those times where they can’t find their keys, forget an appointment or maybe their PIN number. These are occasional occurrences and in no way should make one think they are cognitively impaired.

My first sign was what I call word search. It’s more than just forgetting a name, or a specific word, it can be substituting, consistently, one word for another or going brain dead and unable to come up with the word you want. When I first knew this was happening, I asked a friend at work if she had noticed. She thought the pauses and hesitations were intended, that I was pausing for effect. It still made me uncomfortable when it happened, but I didn’t fret as much as to how it made me look.

I’m a prolific list maker. It’s my way of being organized, of keeping track of what I’ve done, and what I have left to do. Given the scope of responsibility in my job, I had a lot of lists. Even with the stress of everything, I think I was coping, no more than coping. Until I moved and changed my job.

I lost the security of working with a known team, of having coworkers who cared about me, respected me, and understood what I was dealing with. I had a family doctor, a neurologist and a dentist. I had my favourite shops and knew where I could quickly get whatever I needed with little fuss or bother. I had the comfort of familiarity which made my life easier.

In the beginning the new job was interesting, and we were so busy I had little time for anything else. Then the reality hit home and the real trouble started. The next year was so bad I can’t begin to tell you. I made a friend at work and without her I probably would have broken down long before I actually did.

All my usual MS symptoms worsened, especially the fatigue. The joint pain I had had for years became an issue and I saw a rheumatologist and was diagnosed with fibromyalgia.

I found I couldn’t remember numbers. Phone numbers had to be written down, but more than that, when someone recited numbers to me I often had to have them repeated and repeated for it all sounded like a foreign language to me. I couldn’t make sense of money, had trouble counting my change, or calculating the correct amount when paying cash.

Forget the list, I had a notebook and wrote down every phone call and any conversation related to work. The new facility was huge, and to make the rounds meant a lot of walking. My presence on the units was decreased just because I couldn’t physically do it anymore. I stayed late every night because I needed that time in the office to finish work I couldn’t get done during the day.

I was so afraid of making a mistake, my desk and office were organized so I had needed information easily at hand and files piled high with work to be completed.

Sometimes I would leave a meeting and by the time I returned to my office, I couldn’t remember what it was I was supposed to do. I couldn’t think clearly and was feeling the affects of all that stress. Plagued with bouts of blurry vision, numbness in my hands and feet, joint pain, headaches, I was tripping, dropping things, finding it difficult to track multiple conversations.

The staff and my boss at the other workplace had been supportive, in this new place I was getting negative feedback and no support. I had no local resources, had just gotten a family physician, because a staff nurse told her about me and asked if she would take me on as a patient. Professional courtesy is a wonderful thing.

The final straw at work was almost missing the deadline for a report I had to do for the Ministry. The deadline neared and I had done nothing, had forgotten all about it. All my fears, my struggles to remain in control had come to a face smacking, stop-me-dead-in-my-tracks reality.

I was no longer functioning at an acceptable level and didn’t know what to do, where to turn.

#11 A New Diagnosis

I have always had joint pain, had seen a Rheumatologist in my twenties, but pregnancy put a kibosh to any treatment. After, I just learned to live with it. A bad fall at work had damaged my knee, I had ongoing issues with my neck, and frequent pain in my hands and other joints.

Poor judgement reared its ugly head again. I think I wanted, subconsciously, to blame my pain and failing health on something other than the MS. If it was the MS then I had badly mismanaged my own health and well-being. I heard about a clinic in Toronto that took patients from out of town, and would arrange for multiple consultations and any required testing. So, of course, instead of returning to the MS Clinic, or to the family physician I’d had in Toronto, I made an appointment.

It wasn’t all bad. I saw an OB/GYN and had some female issues taken care of that I’d neglected (the dreaded Pap smear and Mammogram). I did not get a consult with a Neurologist because, of course, I already had one. But I did see a Rheumatologist who diagnosed me with Fibromyalgia, the cause of all my pain.

I was already taking anti-inflammatory drugs, and continued to do so. Nothing much else changed, and by that I mean I didn’t change what I was doing. I kept up the crazy pace.

#10 Depleted Resources

In 1999 I was still working in Toronto. A posting came up in a city close to where my daughter, son and new granddaughter were living. My boss and coworkers assumed I’d apply, for they knew how important my children were to me. I hesitated, but not because I didn’t want to be closer to my family. The job may have been with the same company, but it would require a completely different set of skills and came with increased responsibilities. I feared the change would be too stressful.

I did as expected, ignored my inner voice, and applied for the position, and of course, got it.

Decisions, decisions, decisions. Do you realize how draining it is to make decisions? I had projects to complete at the old job, a townhouse to sell, my belongings to pack. Every weekend, which was my crash and recoup time, I drove to the new city to look for a place to live. Once the living arrangements were settled it was all the other details, packing, moving, change of address, and utilities on, utilities off. My to-do list went on and on.

By the time I started the new position, with no time off in the interim, I was exhausted. I ignored the warnings my body was sending and jumped, head first into the new job. There was no gradual learning curve, but one challenge after another, with no relief.

I had let myself get into a situation where both work and home had me buried with responsibility, and I no longer had the resources to cope. I had a house for goodness sake, with snow to shovel, grass to cut, gardens to weed, leaves to rake…need I go on. As I think back I still can’t believe I let that happen. If I’d only had myself to consider, I’d have gotten a condo, or an apartment, and saved myself all that stress. But, I wanted to help my daughter, and bought a place where she and her fiancé could move in with me for a short term. After their wedding, they moved to a place of their own.

I seemed to be living in a bubble, unable to look at the big picture and make the proper decisions, based on what I needed. In wanting to help my daughter, not a bad thing, mind you, I put myself in a situation that added to my stress. Why couldn’t I see that I was not using good judgement in my decision making?

I made one bad decision after another and the results were difficult to live with. I was in a strange city, away from family, friends, with no doctor even, and so no support network. My only blessing was the one friend I made at work, without her I wouldn't have made it as long as I did. 

I felt like one of those balls in a pinball machine, out of control, rebounding all over the place, until, inevitably, I would fall through the hole that would end the game.

By the end of year one in the new job, I heading straight for a relapse.

#9 No Man is an Island

“No man is an island, entire of it self; every man is a piece of the Continent, a part of the main.” This is the quote from John Donne’s Devotion (1624). It means that no one is self sufficient; human beings necessarily depend on one another.

I started writing this in 2014; twenty-five years after the initial symptoms appeared that started me on this MS journey. To say I’ve had some unique and interesting experiences is an understatement. I’ve made mistakes, ignored things I should have paid attention to, didn’t ask for help when I should have, and most importantly, I tried to handle it all by myself, shutting people out, like MS was a burden that I alone could carry.

When a person is diagnosed with a chronic illness like Multiple Sclerosis, it affects not just that person, but everyone around them, especially the family.

I was always a loner, even as a child I liked to read, to paint and watch old movies…solitary activities. I had one best friend growing up, until she moved away when I was in Middle School. Since then I have had ‘situational’ friends. These are friends that you meet because of circumstances, with friendships that don’t continue beyond that time or event.

These were the friends I had in high school, in nursing school, at every job, and in every neighbourhood for most of my life. It was as if, when I moved on, I closed a door on that part of my life and started fresh. I have always envied my brother and sister for the strong friendships they have with their childhood friends. It must be comforting to know people who knew you when and still like you in the here and now.

It’s impossible to be too insular when raising kids, especially as a single mom. When the kids were gone, I was left floundering. I had little family and few friends, and those I had I was not close to, not the call-in-the-middle-of-the-night kind of close I needed.

Work was my life, my family and the basis of my identity. It defined who I was, and to be successful in that role was paramount. The rest of my life was chaos; I needed work, as hard as it was, to be the constant, the steady, the one thing I could count on.

From 1989 until 2001, twelve years, I coped with my disease, gave everything I had to the kids and then the job, but at the cost of the rest of my life.

I sincerely hope that by the telling of my story, others who are dealing with similar issues will not make the same mistakes. You cannot live your life in isolation. It’s not enough to have friends, not if you keep them at arm’s length and never let them be there for you. Friendship is not a one way street. Asking for help is a really difficult thing to do, a skill I’m much better at now than I was before. But it took hitting rock bottom before I learned that lesson.

#8 Making Ends Meet

For many years my life centred on work, and as the kids grew more independent, more work. I had absolutely no personal life. Once I clocked out my attention was on home and rest, and conserving my energy so I could go back and do it all again the next day. Weekends were a blessing, a two day break, a chance to play catch up on errands and sleep.

I had been married for fifteen years, and I often wondered how my ex would have coped with my potentially debilitating disease, if I had been diagnosed before we split. I’m a cynic, and I figured if we couldn’t manage the stresses we’d already faced, this would have been impossible. To say I didn’t trust anyone to be there for me is no understatement. I didn’t let anyone close enough to give them the opportunity to let me down.

Work was my social life, my support system and the source of my self esteem and sense of well being. After eight years at this particular job, work had become a kind of family.

The kids were both living back in that small town, and I was alone. I could collapse on the couch when I got home from work and ignore everything and everyone. I didn’t have to talk to anyone, didn’t have to make a meal if I didn’t feel like it, didn’t have to do anything but rest for the next day.

It was not a life, it was an existence. 

#7 Dealing with a Chronic Illness

In 1997 I took a temporary, out of town assignment with my company, for what was supposed to be two weeks and ended up seven. I drove up Monday morning, maybe Sunday night, and stayed in a hotel, returning home Friday night. I was the sole contract employee, brought in to manage the continuing care unit through major cost saving changes. Reading between the lines, the hospital was mandated by the government to cut costs and the plan was to meet those financial demands by changing the staffing ratios in their long term care unit. The staffing was heavy in registered staff as were the acute care beds, but the unit could be managed, still meeting patient care standards, by reducing the number of professional staff.

It was a tense time, people’s livelihoods were at risk, and being a smaller town, other employment opportunities would be limited. Staff members with years of service were facing lay off; or a decrease in salary due to a change in professional status.

Was I under stress? You bet. Not only did I have to deal with angry and uncooperative staff, I had to deal with ongoing patient care issues. At night in the hotel I would do spread sheets, time sheets, searching for a way to save maximum dollars with minimal staff cuts.

I was wearing myself out, working alone, isolated, not eating right, and not sleeping. It was no wonder I worked myself into my first relapse.

I walked into my office and was hit with a blinding bright light that obscured most of the field of vision in my right eye. It was like a bar of light that I could see over and under, but not through. Hours passed and it didn’t change. I returned to my hotel, looked up walk-in clinics in the phone book and went directly there.

I’ll never forget that doctor because he was probably one of the most understanding, most upfront and honest physicians I have ever met. He didn’t mince his words, but gave me the lecture I needed about living with a chronic illness. He told me I needed to manage my illness, and make changes in my life in order to cope.

My boss was there the next day and when she heard about my 'episode' she dragged me to the ER and made sure I saw the eye specialist. 

I’d like to think it was one of those “Ah Ha” moments, and it should have been. I listened to what the first doctor said, and agreed, but easier said than done. Strangely enough, I never called the MS Clinic to follow up. The other doctors had all weighed in with their opinions, so enough was enough.

I’m not sure that my volunteering for this difficult assignment was not a self imposed test. Did I have the need to prove, to myself, that my diagnosis was not going to make a difference? If I could manage and succeed in this, would it prove I was competent, that I was ABLE?

Denial? In spades.

#6 The MS Clinic

St. Mike’s is a large downtown hospital, and I was nervous as hell the first time I made my way there. The clinic was efficiently run, and very busy. I went alone the first time. I didn’t have any real close friends in the city, mostly work friends, and this was not something to share.

I saw the nurse first, then the neurologist. I also saw the head guy, for he saw everyone at the clinic for possible inclusion in one of his studies. It was a relief; I wasn’t bad enough to need that kind of treatment. For the next six months I underwent a series of tests and went on medication to combat the fatigue. And that was it, welcome to the wonderful world of MS. Come back and see us next year, but if things worsen, give us a call. Here’s your hat, what’s your hurry.

My daughter drove me downtown for my next appointment. It’s not a fast in and out kind of appointment. Wait, see the nurse, wait, wait, maybe wait some more, see the doctor, make an appointment for next year. When I was standing at the desk, making that annual appointment, I saw my daughter leave the clinic, in an apparent hurry to get going.

I’ll admit, it ticked me off. All the running around I did for those kids and this one time she’s helping me and she has no patience. I caught up with her at the elevator and found she was not impatient, she was crying. That day the waiting room was full of patients participating in some trial or study. They had canes, walkers, and a few were in wheelchairs. What she saw was my future, and it scared her. And I thought the kids were handling my diagnosis so well. A lot I knew.

It was back to the once a year appointments where I saw the nurse and then the doctor, again with the direction to call if my condition worsened. I remember that I never felt the same easy-going relationship with this doctor that I’d felt with the first, but it was just once a year, so….

And this became my life, going through the days, never knowing when, or if, things might suddenly change.

#5 The MRI...What they don't tell you.

When I was in the early stages of my disease diagnosis was more difficult, as it was based on neurological signs rather than an MRI.

MRI stands for magnetic resonance imaging. It creates a clear picture of internal body structures and has been in use since the 1980s.

In the mid 1990s there were still a limited number of scanners available and the waiting list for non-emergency testing was lengthy. I remember the doctor telling me I might have to wait months, and I was living in the city; imagine what the situation was for patients in out lying areas.

I didn’t want to wait. I felt I had already lived with the uncertainty for a number of years…so I took myself off to Buffalo. There were a larger number of MRI machines in the United States, and their scanners were available in private clinics, not just the hospitals.

It cost me, but as I had some U.S. dollars saved in a vacation fund, I considered it money well spent. That test was so easy. It was over and done with no ill effects and my daughter and I spent the rest of the day shopping. Not so with the Canadian machines.

My sister has recently had a series of MRIs and she couldn’t understand why I found the procedure so stressful, and I know it’s because of the difference in the scanners.

In Buffalo the machine was open; you could see the room, see the technician. Music played in the background and the tech constantly talked to me, letting me know what was happening.

When you go to have your test, you will be asked to complete a screening form, and if you’re going to have an enhanced test by being injected with a contrast agent, a consent form.

You cannot wear anything with metal, so no jewelry, no snaps and no zippers. The screening form lists any number of previous medical procedures or lifestyle situations that might have left metal in the body, just in case you forgot that navel piercing or pin and plate from an old injury.

They have you lie down on a padded table, and will glide it into the scanning machine, which is like a large tube. They give you ear plugs because there can be some loud bangs, and they tell you to relax and lie still.

Then, just before they shove you in, they ask if you’re claustrophobic. Unless you’ve been confined in a closed space, you’ll probably say no, like most people. I said no, and apparently I lied. I should have been warned when they put a rubber thing in my hand and said squeeze if I found myself in trouble.

Okay, honest moment here, the test is tough. If you’re having one of the brain, as all MS patients do, they have to stabilize your head so you don’t move. Once you are in position they will put pads at the side of your head and a strap across your forehead.

Here’s my word of warning about positioning. In one of my tests the technician asked me to move my shoulders a bit to the right. I complied, but didn’t reposition my head and once in the machine I realized my neck was at an uncomfortable angle and the pad was digging into the back of my head.

When you can’t move to relieve the pain it gets worse and worse, mind over matter I know, but that was the longest 20 minutes I ever spent. I was so close to squeezing that ball so I could get out. Then I had to have the contrast injected and go back in for another 15 minutes. If I had adjusted my position we would have had to start over, as the positioning before and after contrast must be the same.

So, make sure you’re comfortable before you start. And if you make a last minute adjustment, take the time to be sure you’re comfortable, don’t let them rush you.

The scanners I’ve had for my last 6 MRI’s have been closed and tight, so the question about closed in spaces is legit. Because I usually have a book I’m in the process of writing, I use that time for reviewing plots, or planning my next scene. It kills the time. If that doesn’t work I may go over my to-do list, or think about what I need at the store. Whatever gets you through it.

The machine has a sort of rhythm with its bangs and swishes, and you need to be careful you don’t somehow match your breathing to the machine’s noise. I would sometimes feel my breathing quicken, forerunner to hyperventilating, and need to slow it down.

When I feel that edge of panic, I breathe in through my nose, and out through my mouth. I say it in my mind, concentrate on nothing but breathing, in and out, slow and steady. It’s the only thing that helps me get through the test.

Be reassured, the brain MRI is the worst. As you move down the body, for scans of your spine, you’re more out of the machine, and you’re not strapped down. So easy peasy. Yeah, right.

I follow a blog on Ask About…about MS. I’ve included the link here for more information on MRI scans.

 http://ms.about.com/od/newlydiagnosed/a/mri_scan_expect.htm

Hope this has been helpful. What is that saying about being fore warned and fore armed?

#4 Saying it Out Loud

After my mother’s death I threw myself into work with a vengeance. The guilt that I had not been there before she died ate at me. I tried to close off my feelings, to close off everything. But I couldn’t do it for long.

The next year I crashed, and had a major depressive episode. I even went on Prozac for awhile.

I’m not good living with this ‘one day at a time’ stuff, my MS seemed to be worsening. I was coping with a number of ‘weird’ symptoms and was confused. I still had some numbness in my face, and the droop to my eye was a good indicator to how tired I was. I noticed that when fatigued I tended to drag one leg and occasionally tripped. If I didn’t pay attention to the mechanics of swallowing, I could choke.

Then there were the bladder and bowel issues, mainly urinary retention and constipation. There was no feeling in the outer aspect of my left leg, numbness in my hands, and a serious deterioration in my hand writing. I needed to print for it to be legible. I also had some cognitive issues, and what I thought were changes in my speech pattern, forgetting words, making my speech hesitant.

The kids knew what was going on by this time and were good at picking up the signs. If I was tired I’d fade quickly, stumble. Maybe my vision would blur; and my mood deteriorate. I remember shopping one time when my daughter recognized the signs and said “You’ve passed your limit, let’s go home.”

I asked the doctor, no hedging, was this multiple sclerosis?

He said an MRI would give me a better answer. Did I want an MRI? Hell yes, I wanted to know. Knowing had to be better than the fear of the unknown. The unknown can be a big and scary place, or a heavy burden to carry.

I had the MRI in 1996, and later, back in the neurologist’s office, he handed me the report. It said “indicative of a demyelinating disease”. Apparently the doctor who read the test doesn’t like to say it out loud either.

That was by far the simplest test result I would ever have.

I had Multiple Sclerosis; and an appointment at Saint Michael’s Hospital…at the MS Clinic.

#3 The Effects of Ongoing Stress

Someone once developed a list of stressful life events, and assigned each a numeric value. Accumulating points for stress, sounded like fun, or not. The point of all of this was to recognize that every person deals with stress of some degree throughout their everyday life, but when you add on the big ticket events, the accumulated stress can be detrimental to one’s health and well being. The list included the biggies, death, divorce, disease, but also the everyday stuff, like moving, changing jobs, having a baby, even Christmas was on the list.

I think the point value was 200 in any given year. This was an exercise conducted in some work related workshop I attended, and I never forgot it as my points had been well over the 200 for many years in succession. Was this what finally precipitated my MS? Was the disease there, benign and basically symptom free, until my body couldn’t cope any more?

In March 1988, I moved with the kids to Toronto. I had found a management position at a small nursing home where I worked a regular day shift, had benefits and could avoid the heavy lifting that aggravated my back. We had a nice place to live, in a good neighbourhood, with good schools. Three months later my Dad had a heart attack playing tennis and died.

I had a hard time dealing with all this, but tried to keep working, being there for my Mom and for my kids. Is it any wonder that my first MS symptoms presented in 1989?

Mom moved to Florida in 1990, was diagnosed with cancer and underwent surgery and radiation therapy. I had started yet another new job, and was dealing with my health issues plus the pressure and the stress of raising two kids in the city.

I saw the neurologist yearly, reporting on symptoms that didn’t seem to change. The numbness in my face came and went, depending on how tired I was, as did the dragging of my foot, the numbness in my hands. Fatigue was an issue, but I was managing, as best I could.

The stress moved in big time, in 1994. I hadn’t gone to Florida for Mom’s first surgery. When she was found to have a metastatic brain tumour the kids and I went south, and I spent my time taking her for daily radiation treatments and to the oncologist while the kids spent the day at the pool. When we saw Mom in July, she was independent and mobile, by the end of the month she was hospitalized, and dying.

I thought I had time, to get things organized at work, to get the kids sorted out and make my way back to Florida. I didn’t make it. I was to leave Wednesday, my flight booked, a rental car waiting, when my brother called, Mom wanted to speak to me. We had a jumbled conversation, she was frail and couldn't say much but that she loved me. Even rushing to get an earlier flight, arriving a day early, I was too late; she was gone when I arrived. My brother was executor, and my sister and I helped him deal with the house and Mom’s belongings.

I returned home, and back to work. Not that I could blame him, my son decided he wanted to live with his Dad full time. He had never liked the city and the time spent at his Dad’s that summer had made that apparent. We rushed to get him signed up for school, packed his stuff and he was gone.

I was accumulating stress points like mad.

Over the next two years my MS symptoms worsened, and I fell into a deep depression.

#2 The Neurologist Appointment

I thought it was very convenient that the neurologist I was to see had and office downtown and in the west end. I asked they make the appointment in the west end, where I lived. I hated driving downtown even then and would have to take the subway for part of the route.

So, I presented myself at the west end clinic, anxious to see what was what, only to be told the appointment was downtown. No, I told the receptionist, it was not. I figure you can guess who won that argument. The receptionist called the doctor at the other office and explained the mix-up. When she turned to me and asked how long it would take me to get downtown, I knew I was in trouble. This busy doctor, not just any doctor, but a specialist, was going to wait for me to get there.

I drove to Bloor West Village and parked, got a Bloor Street, east bound subway to Yonge, transferred to the north bound train and lastly, walked a couple of blocks to the office. That’s a lot of thinking time.

I liked this doctor immediately, and who wouldn’t, he was willing to wait for me rather than reschedule the appointment. He had an understanding of what I had been going through that week.

First test was a CAT scan, which immediately ruled out the brain tumour. It didn’t answer the question of what was causing my symptoms, but it took the Big C out of the equation, always a good thing. Other tests were ordered. 

My doctor was careful in what he said, and remained noncommittal. Tests came back negative, which was a relief, but I still had no answer. My condition didn’t change and so my appointments became less frequent until I saw him only once a year. 

I suppose that was okay for awhile…but it came to a point I needed more.

#1 In the Beginning

It started with a weird tingling feeling on my chin. That feeling you get when you think you’re going to get a pimple. I was constantly aware of it, would rub it, as if that was going to make it go away. And I just knew, if I waited a few days, it would be there…a great big zit, full blown and ugly on the front of my face.

The feeling never went away, and I never got that zit. The tingling spread to more than just my chin, and became more of a numb feeling, like when you have your face frozen at the dentist. I had lost the feeling on the right side of my face, and it was progressing, from my chin, across my face and right up into my scalp. I was accidently biting my tongue or the inside of my cheek and noticed my right eye drooped and constantly watered. It didn’t go away.

I had been under an incredible amount of stress for the previous two years, starting in 1987, the year of the divorce, the back injury, and the job lay off. My biggest concern was finding a new job; full time day shift if possible as I was now a single mom with two kids to support. It was a famine year in the ongoing feast or famine war that repeats itself in nursing, and jobs were hard to find.

The next year I finally, and reluctantly, found a position in Toronto and moved the kids from a small town to the suburbs. If that was not enough stress, my father died suddenly a few months after the move. I always felt it was fate, that I took that job in the city, and was living a few blocks from my parents at the time of Dad’s death. I was close by, something that wouldn’t have happened had I still been living more than an hour’s drive away.

I remember having a terrible case of the flu in January 1989, followed a few months later by double pneumonia. Work, grief and the stress of single parenting had left me vulnerable, depleted. When my symptoms began I had no family doctor in the city, so I went to the walk-in clinic at the small plaza near my townhouse.

I walked into the walk-in clinic, nervous and unsure, and came out scared to death and feeling so alone. “We have to rule out a brain tumour,” the doctor said. Just like that, all business and no concern. He made me an appointment to see a neurologist. I worked in health care, I knew these guys were busy and there was most often a long wait for an appointment, so when my referral was for the next week, I knew there was something to worry about.

I swear, that was the longest week of my life. I told no one, but went about my days as if nothing was wrong. If it was serious, I would know so enough.

Scattered Thoughts and Stumbles

About eighteen months ago I started a blog.

I was writing…a lot, short stories, novels and the occasional essay. The blog presented as a challenge, something new and different. It appealed to me because I could do it from home, in my own time, and at my own pace.

I called it Midweek Musing. I figured I could manage a once a week blog post without too much trouble. I have a problem committing my time and energy to anything that requires a sustained effort.

Let’s face it; I have trouble committing myself to anything with a deadline that also takes time and energy. It’s not that I’m lazy, it’s because I have a chronic illness and though I have plenty of time, I don’t have enough energy to make the best use of it.

I have Multiple Sclerosis. It’s a chronic condition that affects the Central Nervous System (CNS), which is made up of the brain and the spinal cord.

I’m not going to go into all the details of what MS is, how it’s diagnosed, what the symptoms and treatments are. If you have found your way to this blog, then you can find that information on any number of internet sites. They can explain it better than me.

Having a chronic illness changes your life, and I can be honest enough to say I have not handled, or managed, my disease well. I went from being diagnosed in 1996 to disability in 2001, and yet to the average person, I looked healthy and well.

There are any numbers of diseases, like Lupus, Fibromyalgia and Multiple Sclerosis that can be termed “invisible”, because the person is dealing with a variety of symptoms that cannot be readily seen or understood. Things like pain, visual disturbances, cognitive issues, weakness and fatigue.

Not all disabled people are in a wheelchair, not all disabilities are that obvious.

The title of this blog is a good description of the course of my disease. Cognitive issues with memory and concentration, and increasing problems with mobility.

In Midweek Musing I have made mention of my illness. I didn’t want it to be the focus of that blog, yet there were things I wanted to say that might have been of help to others facing the same challenges. I didn’t feel that was the right forum.

So, I’ve created a new blog, the topic of which will be living and coping with a chronic illness. I made mistakes along the way, made life more difficult for me and my family, and I hope that by the writing of this blog, and the sharing of some of my experiences, others might learn from my erring ways and not fall into the same pitfalls.

No one can understand what you’re experiencing better than a person facing the same challenges.

I’m going back to the beginning, to give you a glimpse into my MS journey thus far. I hope it proves to be interesting and of some benefit.