Saturday, 26 December 2015

No More Salt

Boy, when a girl takes a few days to enjoy some food with friends and family over the holidays, she shouldn't have to pay a penalty. All foods during the holidays should be calorie and salt free.

Wednesday was our family dinner, Thursday some crackers and cheese, some dip, some leftovers, and Christmas day more munchies and more ham.

Because those were some busy days I didn't have the time, (which means I wasn't at home parked outside the bathroom) to take my Lasix, a diuretic or water pill.

Today I woke up with my eyes all swollen, feeling bloated and puffy. I took the Lasix early and swear I have lost 5 pounds in fluid. I'm spending so much time in the bathroom I've left my book there to occupy my time with this marathon of peeing.

I have to get back on a regular schedule for this pill, as the fluid sneaks up on me and then I have trouble breathing, my hands are tight, and my ankles swollen.

There's an item for my New Year's list of resolutions. To rid myself of fluid retention.

Wednesday, 16 December 2015

Christmas Blues



A number of negative life events happened to me at Christmas time, so the holiday has lost some of its charm for me, but I try to put on a positive front.

Because I have children, and grandchildren, I push through the season. But now that they have homes of their own, I find it easier to get through it on my own, my way. That means go like hell, shopping wrapping presents, baking, etc. Then I buy myself a new book by one of my favorite authors, a bottle of wine, and hunker down for the actual day.

I just want it all to be over with for another year.

I know some might say I’m dwelling on the past, and really I’m not. It’s a tough time to be alone, and you can’t help but think of all the what-ifs and what might-have-beens. Over the years I’ve had many invitations to join friends and their families for Christmas, but feel that being an outsider is worse than being alone.

My son dropped in today and I showed him some of the things I’d been working on, and I’ve been very productive...painting and crocheting. (There are 13 sets of hats and mitts for the family, joke gifts and ornaments for the tree.)

I laughed and said I didn’t know why I was going crazy making all this stuff.

My very wise and understanding son replied. “Because you’re fighting the depression that hits you every Christmas by being busy.”


How nice to have someone who understands and accepts. Love you, kiddo.

Wednesday, 2 December 2015

A Rant of Frustration



I woke early this morning, barely able to make it to the bathroom and back to bed due to back pain. I settled on the heating pad, read for awhile and finally went back to sleep. When I woke a second time I felt fuzzy headed, but the pain had lessened and I could move a bit easier. This morning stiffness usually eases once I’m up and around, depending on what I do.

Last night I left my dishes in the sink, in water, and decided to leave them as I was too tired and in too much pain to stand at the sink. That mess faced me this morning. I emptied the sink of the cold water and refilled it. But before I tackled the dishes I made a coffee and sat down with my morning yogurt, as I need food with my morning pills.

It never fails though, on these days that start with pain, that the little things that make it an aggravating day are ready to give me grief. Like why I seem to be so clumsy that I have to bend over and to pick up whatever I dropped.

For example, I dropped my pen and it rolled under the sofa, and couldn’t be reached without my getting down on hands and knees. I am so embarrassed that it’s such a struggle to get up (bad knees, bad back), and I could never have managed it if I didn’t lean heavily on the chair. God forbid I ever fall and have nothing to help me get back on my feet.

I tossed something in the recycling, and it bounced off the edge of the container to land on the floor. Bend over and pick it up.

So, that’s my morning so far, and I’m writing this as I finish my coffee before I try to finally get my dishes done. I can tell the day will be a struggle. My right eye feels funny and it’s difficult to focus. For every few letters I type, I backspace to correct the errors.

It’s very frustrating as there are so many things I need to do. Christmas is only weeks away and I’m not quite done with the handmade portion of my gifts. Not going to be easy if I can’t see what I’m doing. I have only a few things left to buy as I shop early, when I can, for I can never count on being able to run around at the last minute.

Yesterday I picked up some groceries, and made a quick trip to the dollar store. I was so very fatigued by the time I got home. There were a few other errands I wanted to run, but realized that it would be impossible.

The days of my running into a store for one item are long gone. I have to do as much as I can at one place, or do without. What I do, where I go, is dependent on how far away I have to park, and how far I have to walk. Time does not rule my life, but my pain and fatigue definitely do.

To add further insult, yesterday I attempted to get all my purchases from the car to my place in one trip using the walker. At the door, all the bags I had balanced on the seat slipped and everything landed on the ground, except my eggs, which I had wisely put in the small basket attached to the front.

That was my last straw, I picked everything up (more and more bending), got my groceries put away, and made a quick sandwich for supper. I had planned to do the dishes, as they’d accumulated over the last few days, but by seven P.M. I was back in bed on the heating pad, the dishes in the sink forgotten.

Not to be a whiner, but it’s wearing, this inability to do things, and yet I know I am so much better off than others.

There are times I don’t leave the house for days on end, and have little to no company. That’s to be expected with my disease, and lucky for me, I’ve always been a homebody, content with her own company. But there are those times I wish I could go out and have some fun, some good times, but then socializing is extremely draining, all that noise and activity, trying to keep up with conversations.

I’m not sure why I feel so down today, and I apologize that I used this forum to vent. But sometimes, just saying it, whether it’s out loud to a sympathetic listener, or in writing for a stranger to read, it helps me get through the day.

I’m heading back to bed as soon as the dishes are done. I refuse to leave them and have to begin a third time. Maybe after a nap I’ll feel better and can manage some of the projects waiting for me.


Thanks for being my sounding board.

Friday, 20 November 2015

Bad Day Rising



I had a sense, as I dragged myself from sleep that it was not going to be a good day. I had that dull ache in my head, fuzzy like a hangover. I was surprised to see the time, and knew I had slept long and deep.

As I got out of bed, my knees almost buckled with the pain in my lower back. I struggled to the bathroom, and back to bed, for a rest on the heating pad. But I couldn’t stay in bed forever.

I was trying to think of what I had done the day before to warrant the back pain today, and other than working on my painting, I had really done nothing. So maybe it was the standing, and bending over the small table I use as a work space. I definitely need to consider getting that bar height table.

Of course, it just goes that when you are in pain, the rest of your movements become clumsy. I was looking for my scissors, and as is my way when knee deep in a project, have too many little piles of paper and such on all available surfaces. I knocked the remote off the table and saw something black go under the fridge. Really?

I used the dry mop to try and reach under, but to no avail. There was no other choice but to get down on my hands and knees. A Herculean task on a good day.

I grabbed a long handled wooden spoon and used the stool to ease myself down. My bad knee does not do well with this action, but at the moment, the back was worse. I leaned down, used the spoon and out came a black pen. But all is not lost; from this vantage point I see the remote under the chair.

It was a struggle, but I got back up, to standing. Moving was something else. I managed to fall into my chair, and here I sit, gathering courage to get up and make my way back to bed and my heating pad.


I want to work on the painting, but it will have to wait a while. Besides, I haven’t found my scissors yet.

Wednesday, 18 November 2015

Three Simple Questions



My daughter called this morning, and asked me three simple questions. The answer to these questions would determine whether or not she asked me for a favor.

“Are you up?”

“Are you dressed?”

“Are you mobile?”

Regarding the first question. It was after eleven o’clock, and I’m usually up. But, on too many days, I will admit I’m not long from my bed, or on a bad day heading back for a rest. A valid question, for sure.

As to being dressed, that’s iffy. If I’m going out, yes, I’m dressed. If I’m home for the day, I wear my ratty old T-shirt and sloppy pants. I’ve learned that’s a wise move as I have ruined far too many nice things by getting into an art project before I changing into my grubbies. As I was deep into art already this morning, I was dressed, sort of.

Then there’s the big question, regarding my mobility. I was feeling that awkward and stiff way of walking, but that’s normal for around the house as I don’t use the cane or walker indoors. Mobility these days is good or bad, depending on my level of fatigue and pain. Today the back pain is at a low level and I had a good night’s sleep, hence the early morning painting.

The favor was to pick up my granddaughter from school, keep her for an hour until her Mom could meet us for the girl’s doctor appointment. As I relish the opportunity for some one-to-one with her, I would have agreed, regardless.


It was a beautiful, sunny fall day, (at the time), and too nice to spend indoors. Lunch out sounded like a great idea.

Monday, 9 November 2015

Slow Moving



I have a tough time getting going in the morning, usually due to back pain. The good thing is, after a while, the old bones seem to loosen up and my movement is better, not the best, but better.

It never fails that, when my back is at its worst, I get clumsy and drop things. Why is that? Like I need to bend over and be reminded that my back hurts.

Being Monday, its garbage day and a day I usually try to get some housework done. I’ve not had a very productive start so far. After gathering the garbage and recycling in the kitchen, I set it by the door and sat in my chair for a moment’s rest before venturing out to the curb.

I did manage to vacuum a few days ago, but didn’t get to the damp mopping, or the dusting. As I look around, I need to do some pick-up first. As much as I don’t like getting the Christmas decorations out until the first of December, my place has a festive look.

Teacher gifts I’m making for the grandchildren’s teachers and presents for the family gaily wrapped in red and white paper cover all the surfaces. And then there’s the ottoman I use as a wrapping station with the paper, tape dispenser, scissors and stick-on labels.

The gifts will go to my son’s house, as that is where we’ll be having our Christmas celebration. The paper I’ll put away when the wrapping is done. Then I’ll have some of my space back.


Maybe the damp mop and dusting can wait a few more days. I have some clean up and organizing to do first, at slow speed.

Monday, 2 November 2015

Fall Cleanup



I can finally say I have my garden done and prepared for winter. I had to do a bit of research first, as I wasn’t sure about the care of the hosta I have in my small garden. I hoped the garden experts would say cut it down, as I didn’t do that last year and it looked horrible after the frost.

I started to cut it on Saturday, managed to rake and bag some of the leaves and got 3 of the 4 hosta plants trimmed before I was near collapse. I got dizzy, light headed, and with my current balance issues, not a good state. Maybe it was due to all that blood rushing to my head when I was bent over to cut the stalks.

I left the last plant, hoping to get to it the next day, but after the long nap I had on the heating pad after my first venture, I took Sunday off. Today I managed to cut the last one, gather a few more leaves the wind blew my way, and moved my plant stand from the porch to the garden for winter storage.

I hate the look of all these empty stands, once full of summer bloom. I want to fill them all with winter greenery, and some solar lights to brighten the space. I think about this every year, a Christmas or winter outdoor arrangement, and never get it done.

I know the reason for my ongoing failure. It goes back to that independence thing. I want to be able to get my own greenery, like when on a walk through the countryside. But walking through the uneven grounds in the woods is risky for me. Maybe I should be content with a few cedar boughs, as there are trees at the edge of the property here.

Worst case scenario, I hit the garden store before they close and buy an arrangement. Why deny myself the pleasure of some color, some brightness and cheer in my winter landscape?


This is the year it will get done. I’m determined.

Monday, 19 October 2015

Making Things Easier

I’ve talked before about my difficulty asking for help. It’s a problem many people have as they age, or as disease takes a toll on their body and their abilities. I’m stubborn and have not given in easily to my limitations.

For a month now I have been cleaning out cupboards and getting rid of what is no longer needed. I have my new cabinet with the four shelves and it is so much easier to see what I have, clothes wise, that might otherwise have been forgotten in a bottom drawer (bad back, remember).

I’ve used up and thinned out my craft supplies, and this week went through my button box. Box is a misnomer, it’s actually one of those things with many drawers, for the tool shop, for nails and screws and such. I had my button collection in the thirty small drawers, which made it heavy. Every time I picked it up out of the closet I was afraid it would drop or spill it and have my hundreds of sorted buttons all over the place.

Last trip to the dollar store I picked up a little tool container, much like a fishing tackle box and brought it home. Okay, brought them home as I bought two. I spent that evening filling them with buttons and managed to clear out half of the thirty drawers. So, now I need two more.

I feel no guilt about buying these containers, and getting rid of the larger, more cumbersome storage thing. At this stage in my life, it’s all about what makes it easier for me. And looking at one of four, lighter, and closed containers, takes away the stress of lifting and spilling the other.

While I was in this frame of mind, I rearranged the bookcase, well, two shelves of it. I moved my printer up to eye level, where the shelf was higher and I could add paper without the struggle it has been thus far.

I also moved my wooden file holder up a level, so it was more accessible. Why, I wonder, have I not done this before?

It’s like the plastic food containers. They were on the bottom shelf of the cupboard, and with my back it was difficult to bend, and find the matching top and bottom. Now I keep a small collection in a colored bin on the top of the fridge, and I keep it organized as it’s handy.


I use the cane in public, the walker for distances and for some shopping. At home I walk unaided, as long as I have walls, furniture and doorways to lean on. I know, one of these days my disease will progress to where I need the cane or walker all the time. And when that time comes, I hope I’ll be smart enough to make the other changes that will be necessary to make life less of a struggle.

Wednesday, 14 October 2015

Empty Spaces

My son came this morning with the new cabinet I wanted. He picked it up from the store, took it home to assemble and now has delivered it. I am so excited to have this new space to...organize.

I’ve been cleaning closets and drawers for more than a month. Some of that time has been actually sorting, some in ‘crash’ mode and some in being creative with the craft supplies I found stashed in said cupboards.

My time of cleaning is almost done. And it’s been a discovery. There were Christmas gifts I’d purchased some time ago, (not for last year, thank you, I’m not that bad). I found a beautiful sweater I forgot I owned, and I’ve found space, and delight in empty drawers.

When I moved here almost three years ago, I did a major purge. But, there were some things I just could not give up...because you just never know, right? Now, I’m being ruthless, in both the clothes and the craft supplies.

That move cost me, even though the move itself was a positive thing. My back became a serious issue; I had an MS relapse, and a serious bout of depression. I’ve found my way through, stronger mentally if not physically better. I’m painting again, and for now that’s taking precedence over the writing. I’ve used up a lot of those craft and art supplies I couldn’t live without.

And now, writing this, I’ve had my rest and its back to cleaning. Empty drawers are calling to me. I’m sure I have something I can store in them. The bonus, I can almost see the top of my table that has been my ‘catch-all’ place since the move.


Slow but sure wins the race.

Monday, 12 October 2015

Noise Intolerance

For years I have had a problem being in large groups. Because of my cognitive difficulties, I have issue with the noise, as I can't keep up with all the activity and conversation. The article I've provided the link to below gives some explanation for this. 

I pulled one paragraph out, as it states what I feel so much better than I might be able to do.

"I am unable to carry on a conversation at a party or at a dinner where there are other people talking, as I cannot maintain any sort of attention span for either what the other person is saying or how I can respond in a normal manner."

At large gatherings I tend to sit off to the side, watching more than participating, enjoying one to one side conversations. 

For years I have had people think I am angry, or annoyed, because they see, not quite a grimace, but definitely a furrowed brow that they read as anger. It actually means I'm concentrating, trying to keep track of what is going on. There's mention of this in the article, too.

It's worth a read.


http://ms.about.com/od/signssymptoms/fl/Noise-Intolerance-and-Multiple-Sclerosis.htm?utm_content=20150930&utm_medium=email&utm_source=exp_nl&utm_campaign=list_ms&utm_term=list_ms

Saturday, 10 October 2015

MS and Sleep

I haven't had a full night's sleep in years. The closest I had was a 'crash' episode a couple of weeks ago where I slept about 6 hours, two night's running, and power napped during the day. For that 24-30 hour interval, I slept more than I was awake.

It was inevitable, I'd had a busy month, lot's of happy stress and high emotions, plus more than my usual activity.

When I sleep, I sleep like the dead. I don't move for those few hours, and wake stiff and sore. Usually I waken because I need to go to the bathroom, and when I get back in bed, I settle in on the other side, and go back to sleep for another few hours.

I have a hard time settling to sleep, and feel my best sleep comes in the morning, that last bit before starting my day.

I found this article about the different stages of sleep, not the usual REM stuff. As always, I wanted to share it with you.



http://ms.about.com/od/livingwellwithms/a/sleep_ms.htm?utm_content=20150923&utm_medium=email&utm_source=exp_nl&utm_campaign=list_ms&utm_term=list_ms

Thursday, 8 October 2015

The Loss of Independence

My neighbour dropped by yesterday, on her way back from the doctors. She’s been plagued by an increase in her pain, and sought some cause for it, some relief.

We both live with chronic pain, and have often joked that getting old sucks. But here’s the thing, she’s more than twenty years older than I am, and much better off...physically speaking.

We live a few blocks from the downtown area, and she walks it frequently. I’m lucky some days if I can make it to my car, let alone make my way through a store. Yeah, growing old sucks, but so does living with a chronic illness.

Her doctor suggested she might get some services, to help her out. All she has at this time is some housekeeping, for vacuuming more than anything else. I can sympathize, that’s a chore that is hard on the back. It takes me a whole day to get even my small place done. Picking things up, moving things around, push, pull, push, pull.

We talked about the services that might be available to us. At my last visit to the MS Clinic, the physio and occupational therapist gave me some options to pursue. Of course, I’ve done nothing.

We get caught up in an emotional push-pull. On the one hand, we resent how age and disease interfere with, not just the enjoyment of life, but the ability to fully embrace life. We fight to hold on to our independence, but at what cost?

At least we were able to laugh at our folly. If we took advantage of the assistance that’s available, we’d have the strength and energy to do the things we want to do. So giving in and accepting help is not giving up, giving in.

Why is it that we look at the loss of any facet of our so called independence, as failure? Think what I might be able to do if I didn’t spend days trying to clean, alternating some chore with pain pills and a rest on the heating pad.

And, if I signed up for Meals on Wheels, and put those dinners in the freezer, I could have a decent meal when I didn’t have the energy to cook, or was in too much pain to stand at the counter to prepare one.

It’s true what they say; we do get stubborn, set in our ways as we age. I fully intend to get housekeeping help, but, wanted to get my closets cleaned out first. Sounded stupid when I said it to myself, more so as I write it. I started cleaning closets on Labor Day, so a month ago.

I will admit I have a car load of stuff to go to the thrift store, have sent bags out in the garbage, and have managed to use up a great deal of my precious hoarded craft supplies. It’s not been wasted time, two of my closets are neat and tidy, I have a number of completed paintings to my credit, and a number of gifts made.

It’s baby steps, a back to the beginning, so to speak. I’m almost ready to make that call, and know when I make that first connection; it won’t be so hard to make the next.


Just think what I might accomplish with all that gained time and energy.

Monday, 21 September 2015

Another Crash, Delayed Reaction



After a busy few weeks, I anticipated a crash, but thought I’d gotten away with a single down day. I got busy, cleaning out closets, had stuff out all over my place...and then it happened...the crash.

I went to bed early, woke late the next morning, and had a three hour nap that morning, and another hour and a half in the afternoon. I felt like a toddler, needing her naps. It was early to bed that night, amazing that I could still sleep. For those two nights I had the best night’s sleep I’d had in ages, too bad I had to be exhausted to have it happen.

Now, almost a week later, I’m still dragging, not quite up to whatever speed that is I usually maintain. The cleanup is almost done. I’ve worked at it little by little, and feel some sense of accomplishment.

There is a box of stuff to be donated, garbage to take to the curb, but still too much ‘stuff’ sitting around on surfaces, so cleaning is difficult. I need to dust and vacuum and will get it done, eventually.

The one plus to living alone, this mess is all mine, and I can put up with it where someone else might not. But this kind of mess is getting to me, unlike the mess I can make when I’m in the middle of some creative project. Somehow, a mess in the name of art is okay, because then I’m an artist, not a slob.


That’s my excuse and I’m sticking with it.

Thursday, 10 September 2015

An Ounce of Prevention

I’ve been sitting here, wrapped in my towel, for the last hour, trying to get some energy back after having a shower. My back was really bad this morning, tough to stand so I’m glad I had the shower chair.

The hot weather has been bad enough, and now that it’s a bit cooler my back goes,why now? Why today?

I try and think of what I might have done to cause this increase in back pain, and finally remember. I went to do my laundry last night, something I had been avoiding with the last few hot and humid days as I have to walk over to the main building. But last night there was a breeze and the temperature had decreased, so I figured it was manageable.

I keep my dirty clothes in one of those shopping cart things. Not the metal one, but the one with the removable bag. I like that it’s on wheels so I can move it when I’m cleaning. But to do the laundry, I lift the bag off the cart and put it on the walker.

Last night, I remember the cart was behind my new dehumidifier, also on wheels. But instead of moving the dehumidifier, I leaned over and tried to lift the bag off the cart, and of course it got snagged and I had to really tug. So now I'm suffering because I didn't use my good sense last night.

As I’m typing I can feel the pain in my right shoulder and am afraid what my back will be like when I go to stand. I’ll have to do it, need to get dressed.


At least I didn’t fall in the shower. If I’m going to fall, and I know it will happen again, I want to fall with my clothes on.

Tuesday, 8 September 2015

Crash and Crash Again

It’s funny the way things work. I was so busy last week, visits with the grandchildren, lunch out with a friend, and then Friday night was dinner at the soon-to-be daughter’s in-laws, the night before the wedding on Saturday. Busy time for me, so different than my usual days.

Saturday was a beautiful day, but a shade too hot and humid for most everyone so you can imagine how I felt. The outdoor wedding was lovely, with the slight breeze and shade of the trees. Fortunately, the hall was air conditioned so comfort prevailed. Still, a long and emotional day for me after a busy week.

I figured Sunday for a crash day, and after breakfast out with my brother and his wife, I had a three hour nap and spent the rest of the day in a mental fog.

As crashes went, that one seemed to be short and sweet. Labor Day I felt some renewed energy, some of that, with the wedding over, as I could now get back to some of the things I’d set aside. Like cleaning.

I started in the far corner of the bedroom, where I have a seven drawer stand filled with art supplies. I cleaned out, and not just sorting and purging, but washed out each drawer. With that done, and a new idea of the supplies I have on hand, I’m ready to get back to some art work, but more cleaning first. Cleaning those drawers I sort of, not as thorough though, cleaned some of the others, as it happens when you organize and store like things together.

I packed things from the curio cabinet I’m giving my granddaughter, and that got me off my planned schedule as I had wings broken off an angel statue, an ornament in 2 pieces, and a Royal Doulton in need of repair. So I moved it all to the kitchen and got out my super glue.

While I was in the kitchen I did the dishes, and cleaned out the fridge and freezer as it was timely, today is garbage day. I can’t believe I had so many outdated items in the fridge, I mean February 2013? What was I saving that sauce for?

And I wonder why I never seem to get anything accomplished? I do manage to get stuff done, it’s just with no rhyme or reason, moving from one thing to the next like some pin ball game, never finishing one task to completion. So here it is, the Tuesday after the last long weekend of summer, and for many of us, the unofficial start to fall. It’s still too hot and the humidity is dreadful. Today I feel the crash I thought I’d escaped earlier. The aches and pain are making it an Advil kind of day, my head feels like it’s wrapped in cotton balls and I’m puffy, especially my one eye.

My exuberance for fall may have to wait a few days; it seems my crash is not done with me yet.



Tuesday, 1 September 2015

Walking Practice

It is a sad state of affairs that I realize I have spent the summer, and spring, I suppose, in bare feet or crocs. I find walking easier in flats,when there is no heel, nothing to throw off my precarious sense of balance.

The fact that crocs are okay for my lifestyle says a lot about my life. The people in Walmart (I know you've seen the videos) don't care that I'm wearing crocs, and I wear black ones so they look more like regular shoes, or so I convince myself.

But in four days I have an event to attend, and I need to dress up. I should buy a pair of rainbow crocs, just to annoy my daughter, my perverse sense of humor showing.

Anyway, today I put on my dressy navy suede sandals, to practice walking. They have a bit of a heel, maybe 2 inches, and I haven't worn any kind of heel in...well, a long time. That much of a heel throws your balance off.

I walked out of one room and fell hard into the door frame. Good thing I don't bruise easy or I would have a big black and blue mark on my forearm. I definitely need more practice, and not just inside. I'll take a spin with the walker and do a circuit of the court, see how I do.

I tried on my new slacks, and they work with the sandals, so no tripping over too long of pant legs.

I pray there will be no incidents, no trips, no near falls, and heaven forbid, no face plant, fall to the floor.

Practice makes perfect, right?

Sunday, 30 August 2015

Overdoing?


I never walk with ease, but some days are decidedly better than others. Today is not one of those days.

I spent a good part of the night on the heating pad, and now have a pain patch on my back. I don't know what set this bout of back pain off, maybe the extra walking yesterday, sitting in crappy chairs, lifting the heavy bags of groceries? Who knows, but whatever it was...I'm paying for it today.

Add to that, I forgot my sunblock and have my rash back on my face and arms.

And people wonder why I don't make plans, but go day to day, almost moment to moment. When I went out yesterday I was tired, and I knew I was pushing it, paid for it with a sleepless, pain filled night, and now I'll be dragging for days.

I'll rest up and take care, there's a place I need to be at the end of the week, things I need to do. So, like an overtired toddler, it's afternoon naps and early to bed. Unfortunately a toddler will grow out of their need for naps, my need will only increase with time.

Thursday, 20 August 2015

Noise Intolerance

I discovered that I was noise intolerant many years ago, and found it was most troublesome at family get-togethers. It was the number of ongoing conversations going on at the same time, and I figured my brain just couldn't track it anymore.

The noise level with kids around is always higher, so that added to this uncomfortable situation. I like the music on loud when I drive, but only if I'm alone. Driving, and paying attention to driving, with conversation is enough without music added to the mix.

In a store, there is constant noise and activity, and I have trouble concentrating and paying attention to conversation.

Years ago, I warned my kids. If they wanted to tell me something I needed to know, and remember, they needed to get me alone, in a quiet spot, and make sure they had my attention before talking, otherwise I wouldn't remember.

It's funny, but as much as added noise causes me this kind of difficulty, I don't like silence. I have my television on all the time, usually turned to crime shows. I don't like talk or reality shows because the sound can go from soft to loud and jarring and back again. And on these talk shows there are too many people talking at once vying for attention.

Sharing a link on this topic.

http://ms.about.com/od/livingwellwithms/fl/Tips-for-Dealing-with-Noise-Intolerance-and-Multiple-Sclerosis.htm?utm_source=exp_nl&utm_medium=email&utm_term=list_ms&utm_campaign=list_ms&utm_content=20150805

Wednesday, 19 August 2015

MS and Pain

Very timely, here's an article on the different kinds of pain those of us with MS might suffer. I like how she begins by saying MS used to be considered a pain free disease. How many times did I hear that?

Anyway, it's a good explanation.

http://ms.about.com/od/signssymptoms/a/pain_overview.htm?utm_content=20150819&utm_medium=email&utm_source=exp_nl&utm_campaign=list_ms&utm_term=list_ms

Monday, 17 August 2015

MS and Fibromyalgia

I have suffered from chronic pain for most of my adult life, joint pain in my hands, neck and back. I saw a rheumatologist as far back as 1976 who gave me meds, NSAIDs (nonsteroidal antiinflammatory drugs) for the pain, which I took off and on for a few years (not during pregnancy) and then daily for a consistent time.

The official MS diagnosis came in 1996. My usual pain became much worse, and as pain is not considered by some to be an MS symptom, I saw another rheumatologist in 2000 and was told my pain was due to fibromyalgia. Oh, goodie, another chronic illness, one where fatigue was also a problem.

Found this article about others with both, and found it interesting.

http://ms.about.com/od/signssymptoms/a/Q-Can-People-Have-Fibromyalgia-And-Ms-At-The-Same-Time_2.htm

I'm off the NSAIDs, have been for a number of years. They can play havoc with your stomach and the cost was an issue (no benefits). I have managed for some time now with just Advil. Some days I wake and know it will be a 'bad' day, and other days I can manage the aches and pain with no medication.

If I have a flare up of pain, I take it regularly with maybe a dose of Tylenol tossed in for good measure. I tried the arthritic Tylenol, that has an eight hour effect, a slow release sort of thing, but reacted badly to it, not sure why as I've taken Tylenol for years.

I still swear by heat as a comfort and pain reliever, and am never without my heating pad and the neck wrap that I heat up in the microwave. This hot weather has negated their use for awhile, and as I have the typical MS aversion to warm weather, I'm trying cold relief, but it's just not the same.

There is no such thing as a day without pain, it's more a question of how bad. Such is life. I know I still have it so much better than other people and have learned to push through and make the most of the good times.

Thursday, 6 August 2015

Footwear



My footwear has been of interest to people for many years, or should I say my choice of footwear.

I love clog type shoes, the covered toe with the open heel. I have worn them for years, in many styles and colors. When I first had problems with my gait, dragging one leg, tripping and such, my boss, and friend, was sure it was my shoes, no way could it be MS.

Well, the MS diagnosis was confirmed, so I continued to wear the same style of shoes. Not the best choice maybe, but I was having trouble making concessions to my disease.

When I was no longer working, I thought I left the shoe lectures behind me, but alas, no. My son took up where my friend left off, sure that if I wore proper shoes I’d walk better, be more sure of my steps.

As my condition has deteriorated, the addition of the cane resolved some of the walking issues as I could maintain better balance, and the walker has improved on that immensely. So the shoe lectures have eased off, until late.

I gave up my favorite pair of clogs, nice leather ones, too, because they had a heel. I need flats, or my balance is thrown off, and as I don’t go anywhere very dressy, I’ve been wearing a leather running shoe in winter and a pair of crocs in summer.

I’ve been getting the shoe lectures again, from my daughter this time, about the crocs. I guess some of that is from a fashion point of view, as they are very casual and...okay...kind of ugly. Well, I sealed my fate on Tuesday when I fell. The crocs have no grip and I slid on a wet floor, and down I went.


For sure, shopping is on my agenda, I need to put a stop to the lectures.But not for a few days.

Wednesday, 5 August 2015

A Full Fall



I think I put a curse on myself, by talking about ‘near falls’ the other day. Yesterday I fell, right down on the floor, total mortification, etc. etc.

I was out with my daughter and granddaughter and we couldn’t make up our minds as where to go for lunch, so stopped at one of those places that offer multiple choices. We had just come through a storm, so of course the floor of the restaurant was wet, and I was foolishly wearing crocs, which have no grip on the sole.

We were laughing and having fun, so I wasn’t as cautious as I might have been. My first step on the wet tile floor and I could feel my foot slide and knew I was going down. That’s the thing with MS, your reaction times are on a delay, and there was no way my legs were going to move fast enough to stop the fall.

Down I went, and of course, as it was lunch time, there were a number of people trying to enter behind us and watching from inside. I crawled over to the wall, used it to brace myself so I could stand. My daughter was upset, handed me the cane and offered to help me back to the car. I refused, went to the bathroom to pull myself together and we had lunch.

I made it through the rest of the day, but the aches and pains were taking hold. I came home, took a pain pill and went to bed, slept for two hours.

Today I feel better than I expected, with vague pains hitting different parts of my body. I must have twisted my knee and ankle, landed on that same left wrist, so they are consistent, with little other surprises that come and go.


Definitely getting rid of the crocs. Fall will be here before you know it, so new footwear is in my future. 

Monday, 3 August 2015

Near Falls



Near falls are different than a full fall, than a land on the ground, face plant kind of fall. A near fall is when you catch yourself, or land on something so you don’t actually land on the ground.

I’ve had two near falls in the last week.

The first occurred when I was unloading something from my car to the walker. I use the walker to help me...walk, of course, but it also comes in handy to carry stuff. That day I had groceries, and the bags began to roll off the walker, I leaned forward to grab them before they fell to the ground. My head spun and I lurched forward, falling awkwardly into the walker.

The other day, I was looking for something in the bottom drawer. I have a bad knee and can’t kneel or bend at the knee, so I have to lean over from the waist. Again, things started to spin and I fell into the open drawer, caught my right index finger between the drawer and the cabinet, and landed heavily on my left wrist.

My wrist is still swollen and painful, but as I have full range of movement I think it’s just a sprain.

I remember walking outside, taking a few minutes to enjoy my garden, and do some weeding. I automatically used my cane to maintain my balance when I leaned over to pull at the weeds. But I don’t use the cane in the house, or walking about the car when I have to walker. So, this was a good lesson, and timely, as the next time I could fall for real.

I need to keep a hand on something when bending over, much the same as I do when standing. If I stand without touching something I tend to sway and fall backwards. I realize I have to make these concessions to make to be safe, and hate the thought that I might have to resort to using the cane in the house. My place is small enough that I’ve been able to make do with hand holds on the walls and furniture, and can leave the cane at the door.


Small, in the grand scheme of things, and I hope not a possible sign of changes to come. Now my wrist hurts from typing, so I guess I’m done for the day.

Saturday, 1 August 2015

Friendships



I see all of these quotes that people post on Facebook, about friendship. They all say the same sort of thing, good friends are there for you no matter what, and time and distance makes no difference in how you feel.

But what about those friends, supposed friends, who fade away when you are no longer able to do the things you used to do, enjoy things as you once did.

I had a relapse two years ago, when pain became a defining element of my life, in addition to the usual MS symptoms I live with. This was the time I got the walker, and my tolerance for any activity was lessened as to leave me almost housebound. If walking on wintery roads was a deterrent in winter, the heat and sun was the same for summer.

The frequent day trips I enjoyed with one friend haven’t happened in the last two years, and I miss those days of taking off, seeking out new and different places to shop, to eat, to experience. It was just too damn hot, and my pain would not allow me to do the walking nor the sitting in the car. We’ve made do with meeting for dinner, but it hasn’t been the same.

I have another friend, a much older friend, who was getting slower, more of my speed. We shopped, met for lunch and talked on the phone if we weren’t getting together. One day we were walking out of the restaurant after having lunch, I was struggling, using my cane, and she was walking easy as could be, unaided. I laughed, and asked her what was wrong with this picture. She has grey hair, and is obviously older, and I was the more feeble, the one struggling.

We’ve talked less and less lately, and don’t seem to meet as often. But when we talk it’s all about where she’s been and what she’s done. She seems to have found some energy, and is staying active, with other active friends. I’ve experienced this before, with others.

This makes me wonder, have I given in?

The funny thing is I like being home, having time to be creative, whether it’s simple crocheting, or painting or writing. I need to be creative, the same as I need to eat. But creativity is, for me, a solitary activity, and I am not by nature a social person.

That doesn’t mean I’ve given in, it just means I need to make more of an effort to take a break and get out. Something I will do, as soon as this heat spell is over, by calling my friend and planning a trip to take off for the day.


I’m not done yet, and I have to say, I have accomplished a great deal during this time of being home. There’s always a plus side if you look for it. Now, where shall we go when we hit the road?

Tuesday, 28 July 2015

Heat Intolerance


We've been experiencing some hot and humid weather lately, so for me, it's stay indoors and do as little as possible.

The other day I took my neighbour to the store and by the time I'd carried everything in, I was in a sweat, badly overheated, had trouble with my words and was stumbling around. I put the items that needed refrigeration in the fridge, changed into a cotton T-shirt and soaked a washcloth in cold water to wrap around my neck. It took a while for my body to cool down.

Today it's been hot again, though the weather channel says it's 21 degrees Celsius, it's supposed to get warmer during the night and not cool down, and then only slightly, at dawn. It is predicted to be 25 degrees tomorrow, with a Humidex of 31. I guess I'll be staying home and indoors, with my small fan blowing, trying to convince myself it's not really that hot.

My sunscreen let me down on Sunday. After an enjoyable afternoon at my grandson's birthday party, I had a rash and blisters across my face that night.

I had things I wanted to do this week, my friend is on vacation, my daughter at the cottage, and I'm sitting home, suffering in this heat. Oh woe is me right? I don't mean to sound so full of self pity, but I do spend most of the summer, behind closed doors, drapes drawn to ward off the heat of the sun.

The funny thing is, after a few days, if I do get out, I take a deep breath of fresh air and marvel at what a beautiful day it is. I remember summer days spent swimming, playing in the park, going to the beach. It doesn't seem that long ago that I could do those things with the grandkids, but not anymore.

It can't last forever, all too soon we'll all be complaining of the cold. It's the nature of the species.

Here's a link with some interesting information on how to deal with hot weather.

http://ms.about.com/od/livingwellwithms/a/heat_tips.htm?utm_source=exp_nl&utm_medium=email&utm_term=list_ms&utm_campaign=list_ms&utm_content=20150722

Friday, 24 July 2015

Sun Hats



I walked across to the main building, to do my laundry, and enjoyed the beautiful summer’s day. I didn’t go unprepared. I had on a long sleeved shirt and had applied the SPF 60 lotion to my face.

It was all for naught. Last night I could feel the itch on my face, the blister that formed on my nose. Looking in the mirror I could see red spots and, yes, the blister on my nose. So much for sunscreen.

My sensitivity to the sun has been an issue for a couple of years now. I seemed to get these areas on my nose, my cheek, that weren’t exactly pimples but seemed to erupt without reason. And I had a raised rash on my arms that seemed to come and go. It was finally clear that this was associated with the sun.

I take a diuretic that warns about exposure to the sun, but at the time all of this started, I took it very sporadically, not regular enough, I thought, to be the cause. I figured this had to be another one of those strange MS things, like so many others, not in the textbooks.

My daughter, who has a great sense of humor, bought me a sun hat. I knew I needed a hat if I was going to be outside, but I was thinking along the lines of a ball cap or a fisherman’s kind of hat. I was not thinking of a southern belle’s large straw bonnet.




Maybe some flowers? Or a big ass bow?

Tuesday, 14 July 2015

Humidity and MS

It’s been hot and humid these past few days, with rain expected off and on today.

I can feel the difference in my breathing, more short of breath, coughing. My energy level is way down, so easily fatigued with any activity.

I don’t like air conditioning; much prefer the feel of a breeze, and the foolish notion,that the breeze is refreshing. Actually, it’s just the same hot air, moving about, so maybe a bit of mind over matter. That’s why fans work, same concept.

Right now I don’t even have the option of that breeze, as all my windows are closed, and my drapes shut against the afternoon sun, though it’s grey and overcast today.

Here’s a link describing how other MSers relate to humid conditions.



Take care, there’s a lot of summer still to be enjoyed.

Saturday, 4 July 2015

Bruises and More Bruises



I still have remnants of the bruise I received when I...sort of... fell off my bed. How did I manage that, you might wonder. Well, my bed is one of those high ones, with storage drawers underneath.
I went to have a nap, and tried to lay down, going knee and hand on to the bed, intending to end up comfortably on my side...in the bed. Unfortunately, I must not have had my knee well onto the bed; it slipped off the edge of the mattress and slammed into the wood frame of the bed. Big ouch, and big purple bruise on the inside of my knee.

Today I sport a bigger and darker bruise, in almost the same spot, but on the other knee. This one happened on Tuesday when I stopped off at the store. I know I was tired; it had been a busy morning, but still.

I was getting out of the van, the way I usually do, left leg first, grab the purse and cane, step out with the right leg. Since my left knee is my bad knee, it has been known to fail me at times. I don’t know if that’s what happened or if I was just uncoordinated because of fatigue. Somehow, I struck the inside of my right knee on the hard edge of that little storage space where it sticks out at the bottom of the door.

I never use that space, and until the pain struck, forgot there even was a storage space on the door. Another big ouch, and a bigger bruise.

Tomorrow I’ll have another, on the back of my right calf. I’m going out with a friend, in her car. When a car has those runner things along the side, which I never use, I get a bruise reaching my leg over them to get in and out of the car. I need to swing both legs out first, ease myself off the seat and not put that kind of pressure on my calf.

Hopefully, the knowledge of these new bruises will make me more aware of what I’m doing.


But, I doubt it.

Friday, 3 July 2015

Vitamins and MS

Another interesting article on vitamins, specifically Vitamin D and B12, both of which I take, now I know more about why,


http://ms.about.com/od/livingwellwithms/a/vitamin_D.htm?utm_source=exp_nl&utm_medium=email&utm_term=list_ms&utm_campaign=list_ms&utm_content=20150624

http://ms.about.com/od/livingwellwithms/a/vitamin_b12.htm?utm_source=exp_nl&utm_medium=email&utm_term=list_ms&utm_campaign=list_ms&utm_content=20150624

Thursday, 2 July 2015

MS and Alcohol



I have never been much of a drinker, but have been known to enjoy a nice cocktail or a cold beer on a hot summer day. In winter, especially around the holidays, I liked a nip of Bailey's in my coffee.

I learned years ago, that I can't drink when I know I'm going to drive. My reaction times are much slower and I would never take the risk. So I only drank at home, which was basically never, or when I had a designated driver.

There is another downside to drinking...the loss of my already unpredictable sense of balance. I would stumble more, and lose whatever recovery ability I might have had. The pleasure of a drink lost out against the increased the possibility of a fall.

So, unless I'm in the safety of my own home, I limit my drinking to the non-alcoholic variety.

I don't think I have ever read an article specific to MS and alcohol, so thought this one was worth sharing.


http://ms.about.com/od/livingwellwithms/fl/Reasons-to-Avoid-or-Limit-Alcohol-if-You-Have-MS.htm?utm_source=exp_nl&utm_medium=email&utm_term=list_ms&utm_campaign=list_ms&utm_content=20150701

Monday, 15 June 2015

On Being a Burden



I live independently, am mobile with a walker or a cane, and still drive my car. But some things, like food shopping are much easier with help.

Walking around a large grocery store is tiring, then there’s all that loading in the car, unloading at home and putting everything away. It is so much easier for me if all I have to do is fill the cart and put stuff away at home.

So on Sunday when my daughter offered to pick me up to go to the store, I quickly agreed. It looked damp and cool out so I wore my denim jacket. Big mistake. As I was standing in the slow aisle, (you’ve all been there) I got overheated. It was warmer than I thought and very humid. Not a good combo for MS sufferers.

Usually I keep the jacket on, because it seems easier to wear it than try to juggle a jacket, a purse and a cane, and of course anything I might buy. That day I had to take the jacket off while I was standing in line.

But when I hung my jacket over the cart handle, everything fell out of the pockets, keys, change, lip balm and cough candies. I had to pick them all up, which is awkward at the best of times.

I was paying for my groceries as my daughter and her family came by, and they loaded my stuff in the cart with theirs. I laughingly told my daughter about spilling everything. Her response was she knew someone should have stayed with me.

Excuse me? My first response was to be insulted, though I knew that was not her intent. More she just wants to help when she can. It’s terrible to be in this in between place of wanting to hang on to my independence and needing some help.

Talk about saying the wrong thing. Just as her comment hit a nerve, so did what I said as we walked out the store. I said I hated being a burden. She said I wasn’t a burden, and she never wanted me to feel like I was.

Guilt is a nasty feeling. The kids all have full time jobs, kids of their own, houses to maintain, and yes...a life. I don’t want to be an added stress. My guilt is not being able to be the supportive parent, grandmother I’d like to be. Her guilt is that she does have all of the above and little time to spare.


Somehow, we’re all finding our way and making the best of a changing situation. I may tough it out at times, but I know they will be there when I need them. That’s family, and that’s love.

Sunday, 14 June 2015

Laugh at Yourself



I was in a good frame of mind yesterday, had an interesting visit from my neighbour and the sun was shining. So I decided to weed my garden.

Surprisingly enough, my back held up for all that bending and reaching, though I was glad I had the cane for support or I would have done a face plant in the dirt.

So, bright sun, bending over, light headed and fatigued I decided it was time to quit and have a rest. I walked in the door, went to put my cane in the corner, as usual, and it touched something on the floor.

Ok, small grey mound on the floor, just inside my door, mouse was my first thought. I jumped back, (remember I wear glasses, didn’t have them on and needed to just to the lesser light... an excuse for my foolishness, I know) and gave it a poke with the cane. It didn’t move.

Dead, great.

I gave it a better look and it wasn’t a mouse at all. It was a grey Walmart bag scrunched into a small wad, hard to make out against the grey/green carpet. It must have fallen from the closet, more excuses, I know.

It made me laugh, and if we can’t laugh at our own foolishness, well, that is just sad.


It was funny, my garden is done, and I took a very well deserved nap.

Saturday, 13 June 2015

Out Damn Spot...Eye Floaters



Have you ever had one of those floaters in your eye? I think some doctor once told me they were debris or something. Well, if that’s the case I’d like to know who’s been dumping garbage in my right eyeball.

I was reading in bed the other night and thought I saw something move out of the corner of my eye. Of course some kind of bug came to mind, like (shiver) a spider, and I had to sit up and check it out. No spider.

But that feeling of seeing bugs, or movement persisted. I finally realized it was a floater in my right eye. It sits at the lower right edge, but will suddenly dart into my centre field of vision. Believe me, it’s very annoying.

It’s been days now and that eye feels a little ‘off’, not sure how to describe it. I’ve been writing and feel some eye strain, the right feeling a bit blurry.

Now I’m curious.

Here’s an article from Web MD about eye floaters.



Oh great, another age related thing to deal with. I keep telling you, getting old sucks.

Tuesday, 9 June 2015

A Senior Moment



I was in the car with my daughter the other day, approaching an intersection with a double left hand turning lane. We were turning left, in the right side turning lane, with a green light ahead.

Traffic was not moving for some reason and my daughter moved into the other turn and moved up, but now we had missed the green and were waiting for the red light to change, to an advanced green.

It was obvious the holdup had been one particular car, as the driver was stopped in the turning lane well before the intersection. Slowly he drove until he was even with us, supposedly waiting for the signal to go.

I told her to watch the driver in the other car. “He’s not going to turn,” I said. “He’ll go straight through the intersection.”

She didn’t believe me, because...duh...he was in the turning lane, why wouldn’t he turn?

Suddenly, he drove right through the intersection, shocking everyone, because the light was still red, but fortunately for him, and all the other drivers, the light for the drivers on the cross street was yellow and then red, so the intersection was basically empty.

I think the reason this elderly driver had stalled traffic, stopping before reaching the intersection is that the double turning lane confused him, and he was concentrating so hard on the lanes, he didn’t double check that the light had changed before proceeding into traffic.

He was fortunate that day, just as the rest of us were fortunate not to bear witness to an accident. This episode just adds further weight to why I don’t like to drive in strange places. I may not be as senior as that driver, but I have the slower reaction time that comes with MS and my brain can only deal with so much information, and decision making at one time. I’ll be more cautious when I drive, it was a good reminder.


Be Safe out there!

Wednesday, 3 June 2015

Brain Games



It’s funny how the mind works, or should I say the brain. There are all these connections between what the eyes see and what the brain interprets.

I like playing Word Search games, like to scan the page and see if I can find the words before doing a line by line search. Certain letters stand out, like ‘W’ so I look for words with that letter first. Then I look for doubles, as they are also more easily picked out.




There have been a number of games posted on Facebook, find this one specific word or the one number in a page of letters.

Today I was playing on Pinterest as I had my morning coffee; today’s topic was polymer clay. I found this attractive pendant, with letters stamped into it. When you see it, what did you read?


I don’t know if it’s just how my brain works but my first thought was FYI...For Your Information. I thought it was a strange thing to put on a pendant, especially when the artist had the letters in the wrong order.

I looked at it again, and this time could see what it was...Fly.


Like I said, it’s strange how the brain works, how we can all see the same thing, and yet we each see something different.

Friday, 29 May 2015

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.

Thursday, 28 May 2015

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. 

Monday, 18 May 2015

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.

Friday, 15 May 2015

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

Thursday, 14 May 2015

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

Friday, 8 May 2015

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.

Tuesday, 5 May 2015

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

Saturday, 2 May 2015

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.

Wednesday, 29 April 2015

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 2nd 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.

Tuesday, 28 April 2015

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.


Sunday, 26 April 2015

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.

Thursday, 23 April 2015

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

Sunday, 12 April 2015

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.