A Child's View on Death and Dying

Here’s a scary thing about kids, you never really know what they understand or what they’re thinking. What might seem like a simple question can have all sorts of other thoughts and feelings behind it that you never know about.

I remember once trying to explain my MS to the grandkids, as they have been witness to my changing physical status. I thought I had done a pretty good job until later, when my granddaughter interpreted our discussion to mean I was dying. Such a stress to add to her life, but her Mom was able to reassure her it was not my time.

I guess the recent death of a more distant grandparent made her think since I had an illness, my days were numbered.

It’s been years now since that conversation, and I was recently able to spend two days with that same child. She said she wanted to see pictures of me when I was younger. When I was someone other than the person I am today (my words, not hers). They never knew me then, can’t imagine that I was once able, and accomplished.

I got the boxes of photos from the closet and showed her pictures of me from my younger days, my wedding, me as a new mother and so on. Funny the odd mixture of photos I have.

There were pictures of my grandmother, and my mother, both gone for many years. I thought we were having a good trip down memory lane, my life, her mother’s and her own. It was a good time, in spite of the fact she was sick.

Yet, later, she told her Mother how much she enjoyed the time with me, and said how sad she was going to be when I was gone, how much she would miss me. Aw, crap. How can I feel so upset that she worries about losing me and at the same time feel so loved?

How does her mind work? How did she go from old pictures to death and loss? The good thing is that this mother and daughter have a very good, open and honest relationship. The child feels comfortable to voice her fears and will verbalize her concerns and therefore can given comfort and reassurance.

She is a gem. Is it any wonder I love her so.

A Scare on the Road

MS is such a strange disease. There is no such thing as a textbook case as we each have a varied set of the major symptoms, along with those lesser things that are unique to us. My eye episodes, for example.

First time it occurred I walked into my office at an out of town hospital where I was on temporary assignment. I was one year into my diagnosis and in a bit of denial. The job had me living in a hotel for the week, working long hours under extremely stressful circumstances.

I walked into the office, BAM, a bar of bright light obscured the vision in my one eye. I was scared, made it the 20 minute drive to my hotel and found a walk-in clinic. It passed after a few hours and has only happened again a handful of times, the most recent during this last winter. Always I have been inside, safe, able to manage.

Yesterday I was driving...timing is everything...to the doctors to see about this lingering cold, cough and earache. All of a sudden I felt blinded by this ball of bright light, with a halo that not only hurt my eyes but totally messed with my vision. And I was driving...help.

I blinked and rubbed my eye and looked about...and guess what? It went away. Well not all the way away, it was back when I looked forward. That’s when I realized that it was coming from outside, and was not a problem with my eyes. What a relief.

It was still hard to look ahead, that ball of light was right there, and coming from the back window of the car ahead of me. When that driver turned off I gave a big sigh of relief, and noted that where the light seemed to be the brightest was that bar light in the centre of the car’s back window. The sunlight must have hit at just the right angle to reflect back.

I experienced it again as I made my way to my appointment, but not as bad as the first time.

It was a relief to know I was not having a relapse, but at the same time I’m concerned about the safety on the road. What if I had been travelling at 100 KM per hour on the 401, and suddenly was blinded by such a bright and blinding light? I can see such potential for disaster.

A word of warning? Caution? Be save out there, there’s a long summer ahead filled with sunny, sunny days.

Hock and Spit

After being a nurse for many decades, I feel I am pretty immune to bodily functions, odors and noises. There is one thing that does make the hair on the back of my neck stand up...that action of hocking and spitting.

I looked it up (of course I did) and found I had the phrase wrong. It’s actually hock a loogie.

Hock a Loogie: to cough up and spit out a large glob of phlegm, usually resulting in a loud cough or throat clearing noise.

The reason this came to mind is that I have had a bad cold and cough for five days now. At first the cough was sharp, and nothing seemed to relieve it. After about 48 hours I could feel the congestion in my chest, the difference in my cough which became looser and...more productive.

Now I have never been able to do that hock and spit thing, maybe because I don’t like spitting. To be honest, I think it’s a gender thing, another one of those things that guys can do, and most women can’t.

Interesting where your mind goes when you’re tired, can’t concentrate and are napping frequently.

I was surprised with lunch today when my daughter dropped by to visit. There’s some guilt there as I probably caught my cold from her daughter. But I got a nice turkey and rice soup, and one of those decadent new chocolate drinks from Tim’s.

Soup for her caring soul, the chocolate to ease her guilt. Worked for me.

Recovery

I must be on the road to recovery; at least I hope so after a week of coughing, sneezing and generally feeling like crap.

How do I know I’m getting better, (in spite of the two new prescriptions after a visit to the doctor yesterday), because I finally got my dishes done.

Living alone and being sick means there wasn’t a lot of cooking going on here, but still there are glasses, plates and some bowls. I have filled the sink with soapy water, I can’t count the number of times, yet I never completed the job. Too many times I ended up stacking rinsed dishes to the side...for the next time.

Well, today was the day. There were two bowls, a glass and all the stuff rejected during the last week. One was a casserole dish that needed a good scour, I think it got soaked about four times this week and today I finally got the job done. Yeah for me.

These sound like minor unimportant things, but for anyone with fatigue issues, and for me, standing issues because of my back, it was worthy of a check in the done column. 

Habits and Routines

I remember my Dad telling me it took three weeks to make something a habit. I suppose that's true for activities like driving a new car or having a new house, or even something as simple as drinking coffee without sugar.

But how do you make some simple thing into a habit?

I talked before about the rash I get whenever I go out in the sun. I bought a SPF 60 sunscreen lotion and the first day I tried it I was pleased to see...or not see...a sun induced rash on my face.

Obviously I haven't made putting sunscreen on a habit. Yesterday I was housecleaning, tossed the door mats out and went back later to shake them out. Outside, of course.

While I was outside I watered my potted plants. One pot was to be placed on the chair in my garden but I hadn't taken the hanging 'thingie' off and struggled to remove it. It required a trip back in the house for a pair of pliers, but I got it done.

All of that took, maybe, five minutes. And that is all it took, five minutes of sunshine and I could feel the blisters forming across my face as I watched television that evening.

I need to put a reminder on my door to apply the lotion every time I go out the door. I forget when I take my coffee out to enjoy a beautiful spring morning, or to water my plants, or visit with a neighbour. I did remember when I was getting ready to leave the house, knowing I would be in the sun walking to and from the car.

The smart thing to do would be to carry the sunscreen lip balm in my pocket, at least I could rub it across my nose and cheeks if I find myself outside and without.

Three weeks to be a habit, eh? Well, Dad, I'm going to try my very best, send me some kind of sign if you see me forget.

Cognitive Impairment and MS

Cognitive impairment was one of the most difficult symptoms I have had to contend with since I began my MS journey. I always had an excellent memory for numbers and details, and it was hard to accept short term memory issues and problems with attention and concentration.

People often make fun of my binders, my way of keeping 'stuff' organized. When I was part of a writing group one member often joked about my book binder. When I write a book I like to keep a binder with details of all my characters, locations and story ideas.

For some reason I didn't keep this up with the book I finished a few months ago, which is why my friend, after reading the book, asked why I changed the dog's name. I knew when I was writing something was wrong, and did finally clue in to the fact I'd changed the dog's name. I guess it took me longer than I realized to become aware, and I didn't go back far enough to correct the mistake. Next time I'll use that Search and Replace function.

By the way, the dog was an old Black Lab...and his name is Max (most of the time).

Below is a link to an article that gives a very good explanation about MS and cognitive impairment.


http://ms.about.com/od/signssymptoms/a/cognitive_over.htm?utm_source=exp_nl&utm_medium=email&utm_term=list_ms&utm_campaign=list_ms&utm_content=20150513

Driving and MS

I realised many years ago that my attitude to driving had seriously changed. The major highways scared me, so many lanes, cars changing position and travelling so fast. I had trouble seeing the me, now, as being the same person who used to travel all across the city, and on all the highways. Okay, I never took the Don Valley, I had some limitations even then.

I guess it's a lucky thing for me that I lived in a small town when my disease worsened, when my anxieties reached a higher level. I understand everything the woman in the attached article is talking about...been there, done that.

I still drive about town, run my errands, and even made it out of town for lunch with my brother. Granted I cancelled twice before I got my nerve up, not having made the trip west since before winter.

The fear comes, as stated in the article, with a slowing of the brain to process information. I have to be alert, pay attention, and I can't deal with new places, new streets. I need to have a driver to go to those new places, as I need the familiar.

It doesn't always help being on comfortable roads, mistakes still happen. Like yesterday. I got the time wrong on my appointment, and didn't notice until I was on my way to pick up my friend. By that time I was already ten minutes late, and my anxiety level high as I hurried to get there.

I pulled up to a red light, stopped (what I admit here I will claim never happened if asked officially), and as the road was clear, moved on through the intersection. It wasn't until I was half way through that I realized it was a red light, not a stop sign. Next time, I'll take the time to call, explain why I'm late. I will never rush like that again as my anxiety level goes up and stops my clear thinking.

The one thing I've learned about this disease is that you have to know yourself, what you can deal with and what you can't. Life will always throw you some curves, and it helps to not over tax yourself on the little things, you never know what's coming round the bend.


http://ms.about.com/od/livingwellwithms/fl/My-Experience-with-Driving-and-Multiple-Sclerosis.htm?utm_source=exp_nl&utm_medium=email&utm_term=list_ms&utm_campaign=list_ms&utm_content=20150513

Let the sun Shine

The last few years I’ve had an issue with the sun. Heat intolerance aside, the sun was giving me a rash. Not one for cavorting on the beach or in the pool, the sun was only touching face, arms and legs, but still.

Every time I was out in the sun for even a short time, I would get a red raised rash, worse on my face. My moisturizer has a SPF of 15, but I often forgot it before going out, as it was more of a bedtime ritual.

But I finally got smart and bought some sunscreen. There were so many choices I read labels, strengths and finally made a choice. I bought Banana Boat lotion with a SPF of 60, and added the lip balm while I was at it.

Yesterday I was out to the store, a quick in and out, which is enough to cause a breakout. After I was outside in the garden, and had a little walk around the court. Today I looked in the mirror and was delighted, no red, raised rash, no blisters, nada, nothing.

Just to be on the safe side, I may purchase a second tube of this miracle lotion, and keep it in the car, just in case I forget to apply it before leaving the house. Summer has a whole new appeal.

Heat Intolerance and Humidity

As we're heading here into summer, and the warmer weather, I thought I'd share this article about heat intolerance and humidity.

http://link.about.com/view/54378a9bfa13a184078b4ad52hw7s.2om/91951379

Age is No Indicator

My friend called me last night, wanted to know if I wanted to go to the store with her, maybe grab dinner while we were out. I needed a few things, needed to eat so I said sure, pick me up. Any meal I don’t have to cook is a good meal; I’m so tired of making the effort. Which is why snacking becomes the more normal, the easy way out.

We made our way through No Frills, not every aisle mind you, but hit the produce and the perimeter of the store. After that we dropped our bags in the car and crossed the parking lot to the new Chinese place.

My friend is 82, eighteen years older than me, and walks well without any assisted device. I was using my cane, my gait not as easy as when I have the walker. I stumble at the curb to make the step and have to sit immediately when we get inside.

It’s a take-out place though there are a number of tables, but you have to place your order. My friend took care of that while I sat. When we went to leave, I struggled to stand with the pain in my back, my knee, and was almost at car before I regained my more usual walk.

I looked over at my friend and laughed. She said something about us being two old ladies and I told her to speak for herself. “I’m not the one with the cane,” she answered.

I said we made an odd pair, her older looking with her grey hair, but more able mobility, and me with my dark hair, my limp and my cane. What was wrong with this picture?

I can admit that she has earned her better physical state. She exercises in the pool at least three times a week, eats a very healthy diet, and consistently takes her medication, including all the more holistic OTC stuff.

I’ve been hit and miss all my life. I can be over-involved in an activity, first it was mothering, and then it was work. Since I have been on my disability I have not been disciplined, have had a fatalistic outlook, and have looked toward, planned for, the end, rather than taking care of the today.

If I live to be as old as my friend, the years will not be as kind to me as they have to her, and I have no one to blame but myself.