Once Upon a time

I was sitting at the school on Sunday after the MS Walk with three six year olds and the question came up, what was MS. I tried to keep it simple, it was a disease, which I had, and was the reason I didn’t walk so well. They were only six after all, and I had to begin by explaining what a disease was.

I thought about this when I came home. The last thing the parents said as I drove away with the youngest kids so the others could continue the walk was “be good”. My kids are very protective of me, appreciate whatever help I can give them, but know my limitations.

When the grandkids were toddlers, I wouldn’t watch them unless we were inside, as they could move faster than I could and safety was then an issue. Later, when I knew they would listen, I could take them to the park and feel in control.

The grandkids play with my cane, something I allow as it takes away any discomfort, makes the cane seem normal. Same goes with the walker. The last thing I want is for these kids to be afraid to come near me because I have a disease.

Now that I think about it, these kids have only known me this way. I went on disability the year my 2^nd of seven grandchildren was born. As I’ve used the cane for a number of years, and the walker for the last two, they have only known me when I had a physical impairment.

I guess that’s why I try so hard to find ways for them to remember me for something else, to make the disease the lesser memory.

One Problem Solved

The other day I bought cupcakes to celebrate my son-in-law’s birthday. I had a few bags of groceries and loaded up the walker to make the trip from the car to my place.

I quickly learned that the walker sort of vibrates as it moves over the pavement with all its bumps and ruts. This means that whatever is positioned on the seat jiggles, and is in danger of bouncing off the seat. This is what happened to the cupcakes, splat, upside down on the sidewalk.

I finally took the walker into Walmart and tried out different baskets, but none were a good fit for the seat, being too tall, too wide, or conversely, too small.

But then I found that Walmart sells a canvas type tote, with firm sides and a base, and long straps for carrying. It fits perfectly on the seat, and because it’s collapsible I wouldn’t have to worry about what to do with it if I want the seat.

In my tool drawer I found a pair of bungee cords, and was able to secure the basket by the handy side handles to the seat. After all, I might load it up with groceries or whatever, but it would still jostle on the seat as it moved.

I love when I find a solution to an ongoing problem.

The MS Walk

Today eleven members of my family walked for MS. I met them at the half-way point and picked up the three six and under walkers and drove them back to the starting point. It was a very positive feeling to see all those people out walking, supporting, hoping for a cure.

Last year our team won Best Team Name. “Debby Does MS” I know it’s a play on words, referencing a rather famous movie of a similar title, something about a city in Dallas? What I have always wondered...how did my kids know about that movie. Something as a mother I think I’d rather not know.

The food at the end of the walk was great as usual, thanks to all the corporate sponsors.

The team decided, after last year, that they wanted T-shirts. So I bought shirts, had some difficulty getting them all in the same colour, different sizes, and ended up with neon green. It was a colour that brought notice; I could see my group coming from a distance.

I was surprised to see we won the Best Dressed Award, but I guess others noticed that bright green too. And to think, I didn’t even get the shirts printed with our team name. Now that we’re into this, we also want to put the years on the back, a reminder of our family’s commitment to this effort.

It means so much to me that my family does this as a team. It’s a show of ongoing support and understanding, and I love them all for doing it.

MS Fatigue

Anyone with MS knows the feeling of fatigue. Here is an interesting article about the causes and different kinds of fatigue that we might suffer.


http://link.about.com/view/54378a9bfa13a184078b4ad52itlf.2mu/f22dd94d

http://ms.about.com/od/signssymptoms/f/fatigue_causes.htm?utm_source=exp_nl&utm_medium=email&utm_term=list_ms&utm_campaign=list_ms&utm_content=20150422

Just Desserts

The downfall to a good night’s sleep is you feel good the next day. And feeling good, when there are so many days you don’t, makes you want to accomplish something, be active, scratch something off that damn to-do list.

I’ve had this itch to get caught up on the scrapbooks I started for my grandchildren, obviously more than seven years ago as I only made four and there are seven now. I pulled everything out of the storage cupboard, the albums, the papers, the stickers and photos, and was amazed how much space it cleared out. I want this done, finito, fait accomplish, completed and cleared out.

That morning, while still feeling good, I started putting pages together, selecting the final touches from a large plastic container of stickers, scraps and other embellishments.

I felt so good, had so much fun, I forgot lunch, until almost three in the afternoon. I took a break, feeling a little stiff from sitting so long, got my dishes done, and made myself something to eat. I went back to work, as I was on a roll with everything spread out all over the living room.

It was close to eight that evening when I quit, deciding I had done enough for the day and should make dinner. I could barely get out of the chair, hobbled my way to the kitchen, and had a bite of cheese and some cold meat and struggled to clean up a bit of my mess.

I went to bed, laid on the heating pad, and read. By that time I was in such pain I had trouble turning over in bed and it was a real challenge to get to the bathroom.

I know better than to sit that long, reaching, bending over the table. It’s too much for my back.

I’ll be paying for this feel-good day...for days to come, but I really did get a lot done, so I guess it was worth it.

Sensitivity to the Sun

I know my ‘water pill’, otherwise known as Lasix, has a warning about prolonged exposure to the sun, but I don’t know what they mean by prolonged, and how long it lasts, as I don’t take the medication daily.

We’ve had some nice spring days, with lots of sunshine. My exposure has been walking from my car to the store and back again, not exactly like sunbathing, or sitting in the park, and yet I’m getting a rash, most particularly on my face as that’s what is exposed.

All I can think of are the people I see with their noses covered with a thick coating of sun screen, and I shudder. You know the stuff I mean.

My skin cream has a SPF 15 sunscreen in it, and I admit I haven’t been consistent in putting it on before going out; it’s more of a bedtime routine for me. But, since my rash has started already and the sun is not at its worst, I need to invest in something stronger and make a habit of using it.

I don’t really think this is from the pills, though they may make it worse, but whatever the cause, if I want to enjoy this summer I better take the appropriate precautions.

Being Social

It’s evident that my life is very quiet, and that I am a homebody. Not always by choice, but because of fatigue, pain, and maybe just feeling ‘off’.

Winter is hard, with the roads covered with snow and ice, I’m afraid of falling, of becoming that old commercial that made everybody laugh...”I’ve fallen and I can’t get up”.

Since the snow is almost gone, and the temperatures are higher, I’ve found a bit of renewed energy, for a day or two at a time at least.

Last week I finished my taxes and some other government papers, got them photocopied for my records and in the mail. While I was out I had my blood work done, and decided to get gas in the car.

I had been watching the gas gauge and watched it get below half, time to fill up. With the job done I decided to clean out all the gas receipts that I had tucked under the visor. I don’t know why I keep them, it’s not like I pay any attention to how much gas I use, why bother when I am out so infrequently.

But this time I checked, because I was curious. Here it was end of March and I had put $50 worth of gas in and filled my tank, proof there was more driving to be done on that less than half a tank. The only other gas receipt I had for 2015 was January 21^st. Unbelievable.

One trip out of town for the doctor, and maybe one a week for groceries. I know there were weeks when it snowed that I never left the house for days on end, and often only then when someone else picked me up.

Good for the budget, but not good for me, as being shut in, and isolated can be depressing. Spring is here, and the sun is shining, and though it still feels cold it’s not a biting cold. I’ve been out for dinner twice this week, Easter  celebrations, and running errands on two other days.

I’m becoming such a social butterfly; don’t know if I can keep up with it all.