Heat Wraps

I was out for lunch on Friday, and though lunch with a friend is a positive thing, the sitting on a wooden bench for hours is not. Usually, when I stand to leave, I am stiff and in such pain the rest of the day is shot.

Once I had tried some of those heat patches, I had the A 535 brand, but as they were expensive I saved them for “special occasions”. In the Dollar Tree store I found the same thing sold in individual packages. They are made by ASSURED, and are called Air Activated Heat Wraps.

I bought one to try and put it on about 11 am Friday, before I went to lunch. I could feel the heat as I sat on that damn wooden bench, and when I got up to go to the bathroom, (tea makes me pee) I actually could stand with little difficulty.

I was much more comfortable than I would have been without the wrap. The heat kept my back from going into spasms, or tensing up, or whatever it does to cause me such pain when I sit on a hard surface for hours. I don’t even remember if I took my usual dose of Advil before leaving the house.

I seem to remember the box of five, of the other brand, cost more than $15 but less than $20, the reason I rationed them out. At a $1.25 each, less than the cost of my tea that day, I intend on buying in a supply to get me through the winter. I’ll have to check the local dollar store to see if they have them in stock, as there is no Dollar Tree in town.

Pain relief is wonderful, especially when it means you can get out and enjoy time with friends or family. Just thought I would pass the information along. 

Lacking in Sensitivity

I have often said how surprised I was at the kindness of strangers. This has never been more true than this last year when I started using the walker.

Even when I used the cane, people were kind, opening doors or holding doors open, making space for me so as not to bump me off balance. In McDonald’s the staff offer to carry my tray to the table as it can be awkward.

Today was the first time I have ever been treated as if my physical impairment meant I was stupid and not an independent person who could think, act and speak for herself.

My daughter and I were in Costco, and were approached by a staff conducting a membership drive. They were offering a discount for people who were in the store as a guest of a current member.

My daughter had the store cart, I had my walker. When the staff approached us with the pitch, I turned my walker around and sat on the seat. It was a good deal and my daughter needed to sign up for her membership, outside the display section of the store, so our concern was the cart we had loaded with items. Could she take it with her or should she leave it and I would wait (and save myself some steps) for her to return?

I’ll give the woman some benefit of the doubt, maybe she didn’t mean to be so insulting, but I don’t know. I became a non person, more of a thing. She agreed that the cart could go with them to the Customer Service Desk, but then asked my daughter if it was OK to leave me there, alone.

There is the possibility that she was paid according to the number of new memberships she brought in, and so my daughter became her focus. But I felt insulted and demeaned. Not the response I’m used to in dealing with a public that has become more sensitive to the needs of the disabled.

It bothered me enough that I’m taking this opportunity to vent. I don’t think I’m being overly sensitive, which can happen, because my daughter also made note of the woman’s lack of understanding. These things happen, I was just surprised because it hasn’t been the norm.

A Temporary Cure

Sometimes you just need a dinner out...a hot meal and some friendly conversation. I got both tonight, came home and made myself a coffee with a generous swig of Kahlua and ate some chocolate.

Not to say that I won't feel down again, but as I ready for bed tonight, I feel better.

And to think it's barely December, it bodes for a long winter. I need to find a cure other than booze and chocolate, or I'll have another whole series of problems by spring.

Feeling Blue, and more Blue

It hit me full force this morning, though I shouldn’t have been surprised. If I’m honest with myself I’ve felt it coming on for a few weeks now.

The “it” is depression. From the minute I woke up I’ve been fighting back tears. My emotions seem to be right on the surface. Maybe this is why I’ve been on a bit of a self destructive bender this last week. By that I mean staying up most of the night and sleeping most of the day, a great way to avoid life.

I’ve had depressive episodes before. Most often these were reactive in nature. I bottomed out after my Mom died, after I was given my MS diagnosis, and one other time, when I went on disability. For those episodes I went on Prozac, and weaned myself off the medication a few months later.

There have been other episodes, cases of the blues, the doldrums, and I’ve just plodded my way through them, sans medication. This latest change of mood is probably due to the holiday. For the last two years I’ve done the NaNo challenge (write a novel in 30 days) and finished with barely three weeks until Christmas and so much to do. I decided not to participate this year, but to work on completing the book I had in progress and concentrated on writing and getting ready for the holidays.

I’ve made some personal items for family, things like hats, boot cuffs, head bands etc. And let’s not forget the 11 stockings I made for the kids and their families.

OK, let’s be honest. The fact that my fatigue has reached a level that I can’t do near what I want to do, the pain interferes with everything, it’s the cognitive issues with memory and concentration that have me down.

It’s the cognitive issues that have had me struggling to finish this current book. But now I have the ending, and I see the finish in sight, and I’m frustrated that I can’t concentrate to put the words together.

So I did the smart thing, I called a friend and asked if she wanted to go to Swiss Chalet for dinner, an annual holiday event for my kids and I when they were small, an yearly event with my friend for the last few Christmases.

I told her I needed a “Festive” dinner, and if a nice meal doesn’t work, there’s always the chocolate that goes with it. Chocolate has been the cure for many things, maybe it will help my mood this time.

Overstimulation VS Fatigue

The other day I spent some unexpected time with my granddaughter, one of those sick kids kind of days. She had a bad cough, lingering sore throat and I took her to the doctor as her Mom had appointments out of town.

We had a good day, out for lunch after the doctor’s appointment, shopping in Walmart while we waited for her prescription, and home for a movie. It was fun, detailed in my other blog yesterday.

The reality of it all was I was dead tired after she left, but that was normal after a busy day. I went to bed early, had the hockey game on and my book, the heating pad at my back. I fell asleep and was out for a couple of hours then woke wide eyed and busy tailed.

At 4 am I was still awake, got up, played some computer games and went back to bed again. Finally, at about six, I drifted off and slept until after nine, and repeated that pattern until noon. Awake, short sleep, awake.

I should have been tired enough to sleep the night away, instead I had a restless night. It’s such a contradiction, when my eyes are so tired I can barely keep them open, can’t read, and yet when I close my eyes I can’t sleep.

Sometimes I think it’s my body reacting to too much activity, to overstimulation, and it can’t adjust to the quiet time, can’t slow down as it should except by small degrees, hence the nap, wake, nap routine.

Or maybe I need to push through the evening, settle to bed at a more normal time and quit giving in to those 7 pm naps. Whichever way it works, it was a sleepless night and I’ll have to push myself to accomplish anything over the next few days. But it was worth it. The good outweighing the bad.

Pain, Fatigue and now the Weather

It’s bad enough to have to fight a daily battle with pain and fatigue, but with winter I have to consider the weather, too. It’s very disheartening to want to go or do something, only to be put off because of the threat of rain or snow.

I have become such a chicken-shit driver in bad weather. It started a few years ago, along with my extreme nervousness at driving in the dark. As we got deeper into fall and then had the time change, I saw my excursions out being limited, like I had a curfew to be home by sunset.

My lunch dates with my friend and my brother get put on hold, unless it looks clear, and I mean clear like that phrase on the weather report that says “No precipitation expected within the next 24 hours”. And even then it’s a rush to get home or at least close to home before dark.

Right now, we’ve hit a bit of a mild spell and I need to get the last of my Christmas shopping done. The days are counting down, and time is running out.

Over Did and Done

The first challenge of the day was to clean a week’s worth of snow off the windshield of my vehicle. Again, I ask myself why I drive a van, but any worthwhile and valid reason escapes me right now.

After a lot of reaching, pushing and swiping I got the car clear. It’d mild out, just above freezing, so it might have melted, but I had errands.

Two stores, I made it through two stores, and felt proud of myself that I planned ahead, took the flyer with me and got items I wanted at the sale price, offered elsewhere. Bless all the angels for Price Check.

I wasn’t sure I was going to make it out of the 2^nd store. The clerk was smiling and friendly, but so slow. I had to ask her to stop jamming everything in the one bag or I’d never be able to lift it. I was leaning over the cart for a reason, taking deep calming breaths, groaning, yes, I groaned out loud, the pain was that bad.

At home I made a decision what could stay in the car, weather wise as it was going to freeze again, and at that point I would gladly have let it be me. Took two trips, the walker loaded down so I had to shove it through the ice and snow on the road, and still the car is full. I admit not all that’s in the car is from today.

So, I’m sitting here, with a cold drink I needed so badly, (why is the air in stores so dry?) with a fig bar for my late breakfast, trying to calm the pain. This will be a grab a book, and a heating pad kind of day, but for now I just want to sit.

I have a bottle of Advil in my bedside table, one in the kitchen cupboard and I see I didn’t think ahead to have one beside my chair. The pain pills will have to wait until I’ve gathered the strength to move.

The skies are a bit grey now, but for a few minutes earlier, the sun was shining and the air had an invigorating snap to it, pleasant for the short time I spent outdoors. It’s not even the end of November and the ground is covered in snow, a sign we’re in for another long winter?

And speaking of winter, all my good thoughts go to everyone in Buffalo, buried under a mammoth snow fall, six feet and with more to come. Take care people.

Heavy Feet

Is anyone out there dreading the coming of winter for the same reason as me...heavy footwear?

Cold, wet weather means boots, and boots are heavy, compared to crocs or sandals. For years I’ve gotten away with a sturdy pair of running shoes in lieu of boots. Since I usually only venture out on plowed roads and shovelled walkways, it worked.

There was the odd time, when I had to clean off my windshield and the area around my car had not been shovelled, that I found myself walking in deeper snow. My running shoes proved inadequate and my feet froze. Last year I found a break in the seal between the sole and the upper shoe. It didn’t affect the appearance of the shoe but it assured every venture out in wet weather I would get a soaker.

So, I’m in the market for a pair of boots and need to find something functional, and light in weight. Heavy boots just add to my fatigue.

And then there’s my winter coat. I bought it years ago when I used to go and stand on the bridge for the Highway of Heroes cavalcade. I liked that it was long and covered me from neck to below my knees. But that coat is so heavy. If I’m out shopping I feel the weight of it and it drags me down. I take it off if I’m shopping where I have a cart, but if the choice is wear it or carry it, I wear it.

Simple little things, not something you’d see on any list of items that affect fatigue, but these are a couple that really do it for me. When I buy the boots I’m going to buy a new coat. My 2^nd winter coat is worn, with a broken zipper. I could get away with it on milder days but it doesn’t look like we’re going to have too many mild days this winter. I want a ¾ coat, long enough to cover my back.

We had snow today. Just a light dusting but enough that it stayed on the ground. I think I’d better plan to get some shopping done soon, wouldn’t want to be caught unprepared.

MS Check List

You remember when you go for an MRI and they hand you that check sheet, the one about metal implants, tattoos, piercings etc.?

Here’s another list, only this one is a list of MS Symptoms. “Do you now or have you ever experienced....”

I could place a check mark beside each one.

Unfortunately, the symptoms don't come one at a time, but in unpredictable combinations. I have to laugh at the last one, "Fatigue is common"....I'd say the fatigue is overwhelming. You can never understand how truly debilitating it is unless you experienced it for yourself. 

Shower Fatigue

Feeling well rested after a weekend of early to bed, not so early to rise, and lots of naps. Have to go out tomorrow so today is bath day. Doesn't seem like that should be a big deal, but for me it is.

Gone are the days I can get up, shower, dress and go out. All that activity requires a nap. So I schedule baths and/or showers before bed the night before, which hopefully means instead of a nap, I'll get a good night's sleep.

I also need to do the laundry, so I'm thinking, laundry this morning, nap, bath, early to bed, but I'll still be worn out for tomorrow.

I guess I'll put the laundry off until...maybe Thursday. After being out all day tomorrow I'll have to have a down day Wednesday, the after effects of being busy. Maybe by Thursday I'll be ready to get up and out.

That woman who worked long hours, in a very stressful and responsible job, and raised two kids alone seems like a figment of my imagination. She's gone...poof...nothing left but a shell.

Sleep, Sleep and More Sleep

Wow, I’ve actually stayed awake for five hours, first time since Friday. Talk about fatigue, but I do think it was sleep I needed.

Pain was getting me down and I went to bed with my heating pad, early Friday evening. I slept for a couple of hours, and woke, tried to read and slept again. This continued, off and on as I needed the odd bathroom break, until noon on Saturday.

I was playing on the computer, no energy for anything else, and found myself back in bed at three in the afternoon, not coming to until after seven. A quick bite to eat and I was back in bed, reading, only to awaken a few hours later the book clasped in my hand. I turned over and went back to sleep.

Now it’s Sunday and I’ve been up since 8am, but I’m tired and looking fondly at my bed. It’s a relief to know I’ve at least accomplished something. I wrapped some Christmas presents and have written about 2500 words in my current book. But I can feel my brain slowing down, and find it harder to concentrate.

The pain is back, right shoulder and arm, this time, so I think some time with the heating pad is in order.

First I think I should grab some lunch. If the last few days are any indication, I may miss dinner, again. I wonder if Swiss Chalet has home delivery? That sounds as close to a homecooked meal as I’ll get this weekend.

Such is life. Sleep when you can, be as active as possible when the opportunity presents.

Denial

I wrote yesterday about how silly I felt, being housebound and running low on toilet paper. I know it’s not a life or death situation, it’s just another piece of this puzzle that’s managing life.

I know I could have made a call and my daughter or a friend could have dropped some TP off, and we’d have had a good laugh about it. If I got down to desperate times I could have pushed myself to go next door, to ‘borrow’.

It’s the bigger picture. I was in the store, Walmart, where I do most of my shopping, (one stop shopping works for a reason) a few days after the hospital visit, as I needed to get my new prescription filled.

In our Walmart the grocery section runs front to back, on the right side of the store. Books and yarn in the middle, pharmacy, pet supplies and seasonal to the left. I went left, dropped off my prescription, toured through and got the yarn I needed and headed to the produce section.

When the pager signaled my meds were ready. So was I, tired and in pain, I had to cross the store again to pick it up. I never made it to the rear of the store where the toilet paper was located, and forgot all about it in my need to get done and get home.

That’s how I found myself a week later in dire straits. OK, that’s a bit dramatic, but I hate when things don’t get done because of fatigue, or I’ve forgotten something because of brain fog. I’m ignoring some things that need to get done, wasting time with unimportant stuff, and denying that I’m not coping.

And denial is a tough way to go through life.

Toilet Paper, a Necessity

Just sat down with my coffee, before I tackle whatever the day will bring. It must be cold out; I can feel the difference in the air, still have my thermometer set on low.

The strain of doing the bazaar last week took its toll. My back was a wreck and I could barely move the rest of the weekend. Monday and Tuesday were rough, but getting better. It’s amazing how much I’m paying for that moment of weakness. But it will all be worth it if everyone likes their Christmas gifts I purchased from other vendors.

I had to get out, needed some essentials at the store, but waited until Wednesday when I had a meeting to attend. Funny, the meeting was held in the same hall as the bazaar, same uncomfortable chairs.

At any rate, I’m home, contemplating the next few days of writing, crafting and can relax, as I got those necessities. Not to sound dramatic or anything, but...

In pain, unable to walk, for those few days I was home I stressed, watching my basket of toilet paper dwindle down to one single roll. It put a bit of a rush on the going out thing, toilet paper is not something you want to run out of, especially if you take a water pill and pee as frequently as the pill makes me pee.

But now my basket is full, and I can relax and pee with no worries. And pee I will be. After the episode a week ago that ended with my visit to the hospital, I was directed to take the water pill twice daily for a few days, then daily.

My intentions are always good; I did take the Lasix twice a day for a couple of days. Then I had to go out, and I can’t take it unless I’m home and close to the bathroom. So I went without that day and the next few, even though the going out wasn’t the reason.

Should have known better, because over the next few days I was full of fluid again, could see it in my legs and feet, feel it in my breathing. Yesterday, I took it twice as ordered and have taken one already today.

God, I hate being this old dog, too stupid to learn the new tricks.

Turn Back the Clock

On Saturday night we were to turn back the clock, you know that spring forward, fall back part of Daylight Savings Time. I wished I could turn back the day, or maybe even better, the month.

I had a friend ask if I wanted to participate in a bazaar at the local Legion. I had done a series of craft shows a few years ago and found it fun. As I had a collection of hats, mitts and scarves made last winter, and with the cold weather upon us, I said yes, I’d love to take part. I was thinking of getting rid of the accumulated stuff, I thought, but in the back of my mind I think it was a bit of that ‘need to do’ that had me agreeing.

I act, and was almost 100% to the point of acceptance, that this kind of activity is beyond me. I guess I needed that last test to finally, once and for all, be convinced.

It’s not just the long hours of the bazaar, the sitting in hard and uncomfortable chairs with no back support, it’s the preparation, the packing and moving and lifting of boxes of goods to display. I had help loading the car, and unloading, but there’s still a lot of bending and such in getting things unpacked. But we got it done.

The rest of the day was a pleasant, talking with people, having one-to-one time with my granddaughter. But every trip I made to the bathroom I was stiffer, more tired and in more pain. By the time my daughter and son-in-law came to help pack up I was in distress.

I barely made it across the street to the parking lot, and was glad for the few minutes I could sit before I parked at home and had to walk to the door. I spent the rest of the night in bed, loaded up on pain meds and with the heating pad to my back. I never got up, except for a few trips to the bathroom where I leaned heavily on furniture and doorways, until almost noon on Sunday.

That proved to be another lost day as I couldn’t sit for long, and spent most of the day in bed, my heating pad my new best friend. Today has been better. I had to get up to put the garbage out, although I never got it to the curb, but left it about a foot from my door. The maintenance man who collects it for the complex will understand.

Saturday I called my daughter and told her to say it, say that big “I told you so!” I knew she was thinking. I learned my lesson, the hard way, of course, but I won’t be signing up for any bazaars or Christmas fairs, not again.

I have to admit it is hard giving up things I like to do, and sometimes, even with the pain and immobility I’m suffering right now, it was worth it. I kept myself busy last winter when going out was...out of the question, and had quite a pile of crocheted items. I make stuff for friends and family, but let’s be reasonable, how many hats does one person need.

I decided to take a page from GG’s book. GG stands for great grandmother, my daughter-in-law’s grandmother, the GG a designation for her children. She makes hats and mitts throughout the year and donates them to various charities. I think I’ll research and see what charity suits me and make that my winter project this year.

When I’m mobile again I’m going to take the items I had left after the bazaar and donate them to the women’s shelter.

I’ll give in a bit, OK maybe a lot, but I’m not going to give up, not yet.

Antibiotic Adverse Effects

When I had this last prescription for antibiotics filled, for the ear infection, the pharmacist warned me that it was a strong dose and could cause some problems with my gut. I looked at him in question. “Diarrhea,” he said.

As I have a common MS problem...constipation...I thought that might be a welcome change from the bloated feeling I experience most of the time.

So today, with only three capsules out of a total of forty left to take, four if you count the one I lost when I spilled the bottle, the diarrhea hit with a vengeance. The bathroom and I have forged a whole new relationship today. I had my book and a couple of magazines on the counter, ready for the next visit. And there were a lot of visits.

I have a new understanding and empathy for people with IBS...irritable bowel syndrome.

Of course the bathroom and I have been constant companions this week already; taking a water pill twice a day will do that for you. I’m glad to see the swelling is down in my feet and legs, so it must be working.

One good thing, the gut stuff has settled and seems to be almost over, helped by the fact I quit the medication as ordered by the pharmacist. My recent trip to the hospital showed my ear infection was resolved so I don’t think it will be a problem.

Good thing it was today, when the bathroom is only steps away and I’m comfortably at home. The bazaar I signed up to participate in is on Saturday, and who knows what the bathroom situation might be. Sometimes things just work out, and after the week I’ve had, I’ll take any good luck I can get.

In Trouble Again

I had an episode over the weekend, and ended up at the hospital for the day. These last two months have been nothing but ongoing and accumulated stress and I think I hit the wall Sunday with a full out anxiety attack.

Let me start at the beginning, Labour Day weekend. It was pain and more pain from a toothache, compounded when I got a cold and cough which meant putting up with the pain until I could see the dentist.

Meanwhile, I jammed my little finger and now it’s permanently bent at the last knuckle. It aches and really hurts if I hit it. This required visit to the walk-in clinic. Turns out it’s a Mallet finger and not much can be done. A month later and it is still red and swollen.

Finally, I saw the dentist (which is akin to torture for me as I have an intense fear). I got the tooth taken care of, an abscessed back molar that was extracted. This resulted in a few more days of pain, soft diet and rinses that should have improved by the end of the week. No way, no how.

An increase in the pain and a slight fever sent me back to the walk-in clinic. So then I’m on a different pain killer and an antibiotic. Ten days on Amoxicillin and things were supposed to be better.

All of September I felt tired and the brain fog made it impossible to concentrate. I didn’t get any writing done on the book, upsetting as I want it done. A self imposed stress, I know.

I was without my car for a few days in October for winter servicing, which nicely cost less than I’d anticipated. A few days after I got the car back I’m on my way out and find someone has broken the gazing ball in my garden and keyed my car. I inform the property manager and they call the police, who come to interview me for the report. Even though I’m the injured party and not a suspect, it was still stressful. Now I have to see about more car repairs and that just adds to what’s on my plate.

We did get some good news during this time, my daughter got engaged and my son hosted the family on Thanksgiving weekend and announced he and his partner of ten years had secretly gone away and gotten married. Good news, good times.

Then I got a new pain, behind my right ear and down my neck. I put up with it longer than I should have, but finally made it to the walk-in clinic, now three times in a month, and found I had an ear infection, same side as the extraction. More antibiotics, only a stronger dose and longer duration.

Add in the normal MS stuff, the fatigue, the brain fog, and the usual back pain I live with daily, it’s been rough. And for some reason I agreed to take a table at the Legion Ladies Bazaar. I thought I could do it if I had some help, and maybe get rid of all the hats, scarves and mitts I made last winter. But, no, that wasn’t good enough, I needed more. So I’ve been crocheting up a storm making bazaar type items to add to my table.

And now my car is making some strange noise that will have to be looked at. I need the car to work and be reliable, I don’t need strange noises.

Stress has always made my MS symptoms worse, which is one of the reasons I live a fairly quiet life. I try not to take on more than I can handle, so more than a month of pain, infection and medications really depleted my resources.

Last week, the paternal grandfather to three of my grandkids died suddenly. There was the immediate shock of it all, and I worried about my daughter dealing with three emotional children at the wake and funeral. So I volunteered to go with her for some added support.

My daughter is smarter than I am. There, I not only said it, I put it in writing. LOL She didn’t want me to go as the funeral was taking place up north and she needed to be flexible as to whether she stayed overnight or not. She didn’t need the added worry I would present in making decisions during those few days. I know she was right, was proved right by what happened on the weekend.

I suddenly couldn’t deal anymore. The changes over the last year, the health and other concerns over the last six weeks, the ongoing pain, and maybe the upset stomach from all these antibiotics and I was not coping. I looked steady but felt as if I was quivering on the inside. I felt short of breath, like a weight was sitting on my chest.

Saturday night I could not lie flat and saw my legs and feet were hard and swollen. Sunday, it was worse and I went to the hospital, done with my hat trick at the walk-in clinic. It took more than six hours, busy spot on a Sunday morning, but after an EKG, chest x-ray and some blood work, I was reassured that what I was feeling was not cardiac, or pneumonia or sepsis.

I was given some medication to calm me down and a second dose of the same diuretic I had taken that morning. With all that had been going on I hadn’t been taking my regular dose and the fluid had built up, making it harder to breathe and pooling in my legs and feet. I came home with directions to take the water pill twice a day for a few days and then back to daily. I was also given a prescription for that calming pill, just in case.

I’ve always been aware that I need rest between periods of activity, and know with the cognitive issues I have that I can’t cope with too much stimuli. Every time I get a cold or a new injury it depletes my coping ability and I need to rest and regroup. These last two months I have been bombarded with an unusual series of events, each taking their toll in a different way.

I still have to talk to my son, and am buying time until I can talk to him in person. He’ll be angry, and rightly so, that he was not told, before hand, that I was going to the hospital. We went through this last year and he made his feelings known. But, as he has a family connection to the deceased and would be travelling this week for the funeral, I opted for silence.

Sometimes, by living my quiet life, I shut out the rest of the world. I can forget in the solitary day to day that my life has changed forever and my future is unpredictable. At other times it’s like a head slap that I can no longer do what I used to do, be what I want to be.

In two weeks, I go to my appointment at the MS Clinic. I think it’s time for a discussion, for some honesty and truth, no more denial.

Tell Me Why

After a rough weekend I went to bed early last night, and was surprised when I woke up four hours later. Four hours, wow, that’s a lot of sleep in one go for me. A quick trip to the bathroom and I was back, snuggled under the covers and asleep.

Another four hours sleep. I was feeling good, and I think, maybe that’s what I need, to start making up for the years of sleep deprivation. That thought had actually crossed my mind before. I need to sleep when I feel that incredible fatigue come over me, and stop fighting my way through it.

So I’m lounging in bed, feeling good, thinking about what I might accomplish on this good day and I turn over...and bam, out of nowhere, this incredible pain streaks down my right thigh. I freeze, afraid to move in case it comes again, or gets worse. Gingerly I turn, move, test the waters so to speak.

Now the real test, can I stand? Feet flat on the floor, Ok so far, and yes I can walk, leaning on the table, the door frame, I practically fall as I sit on the toilet. I feel pain in my lower legs, but push myself up and carefully make it to my chair.

This is my day, sitting in my chair, playing on the computer, reading, some games, maybe crocheting. Everything I do is a struggle. I ache all over and next time I get up I’ll get an Advil, but right now I need to sit.

Legs ache, right wrist, thumb and shoulder, and I feel the brain fog taking over so it’s hard to think and get this done. I want to go back to that moment earlier, that feel good moment before the pain started again, before my day became real.

It's a Small, Small World

I had a sad conversation with a friend yesterday, sad because she has reached a level of acceptance that she has fought against for the last few years. Acceptance that she can no longer do the things she used to do, or be the person she once was.

I’ve been coming to that same level of acceptance but it’s still like a kick in the teeth when I come face to face with a specific episode. In that regard we’ve had the same kind of week.

My daughter has to travel north to attend the funeral of her children’s paternal grandfather. He died suddenly at the age of 53. He’s their Poppa, and the kids loved him and will need support to get through the loss. I offered to go with her, to be there for her and to help with the kids.

She chose to go alone. Thanks but no thanks. She wants the flexibility of staying overnight, of giving the kids more family time, of attending the wake and the funeral without hours of travel back and forth. And the kicker, she’ll have enough to worry about without my being there and having to deal with my issues in addition to everything else.

I appreciate her honesty, and applaud that she can say what she needs and doesn’t let herself suffer a situation she could have avoided. It took everything I had to agree and chat, but when I got off the phone I burst into tears. I was a nurse for thirty years, and I’ve been a mother for more years than that, it’s in my nature to help, to try to make things better, to just ‘do’ for others.

Anymore, it’s all I can manage to do for myself.

My friend is eighteen years older than I am, and fiercely independent. She has been a widow for more than twenty years I believe, so she’s used to fending for herself, doing as she pleases. This year has been hard for her, as she’s lost one friend to cancer, and is about to lose another.

This time it’s her cousin, and as much as she wants to be there, spend some final time with her relative, it’s the distance, the effort of going, travelling back and forth from hospice to hotel and then the long drive home, alone. This week she couldn’t face it, couldn’t face anything and has had to accept, finally, that she just can’t do the same things she’s been struggling to do.

In the last two years I’ve tried to accept how small my world has become, what I can and can’t do. Not only has my living space become so much smaller, so has my life beyond these four walls. I hate, and fear, that I will lose this last vestige of my independence. Asking for help has always been difficult for me, and I’m still coming to terms with that.

Funny, but despite the difference in our ages, my friend and I struggle with the same demons. Is it easier for me to accept the changes because I have a disease I can name and blame? Is it harder to accept when it’s old age that is making the mind slow and forgetful, the body weak and wracked with pain?

I don’t know which is worse, the ongoing battle to maintain and constantly having to face and accept failure, or just giving in, to let that world shrink around you without a fight.

Know Thyself

People take their abilities for granted, because they can get through life without having to question what they can do. I’m not talking the biggies, but the routine daily tasks one faces.

For example, today I left the store and made my way to the curb, ready to cross the road to my car. A curb, not a monumental challenge for most, but it is for me. I stop because I need to ready myself to take that step; it’s not an automatic thing anymore. I have to think it through, step down with the left leg, always the bad leg first. Position the cane for support and balance, take the step and hope like hell I don’t land on my face in the street.

Some of the changes I deal with have occurred over time and I make accommodations without realizing I’ve done it. And sometimes I feel a change and consciously alter my behaviour.

I noticed the other day that I can’t make it from the driver’s side door to the back of the van before the locks click, not anymore. I have an older vehicle, so it’s a key entry. I used to leave the driver’s side door open, make my way to the back, remove my walker and return to the driver’s door and set the lock. One day, a while ago, I noticed that I was reaching the back door before it locked and started saving myself some steps by locking the door first and then opening the back.

No can do, not anymore. The last few times I’ve been out I only made it as far as the rear tire area before I heard the doors lock. It’s not a big thing, to use my key to open and then lock the rear door, but it is a disappointment to realize my walking is slower and more of an effort.

And then there’s the dropping of stuff. I have been on antibiotics and struggled to open the child proof cap, and spilled the capsules all over. I picked them up from the bed, counted and was many capsules short. Moved the bedside table and found some on the floor and on the small ledge on the side of the table. Count was still two short. I shook out the comforter and found another, but so far, finding that last one has eluded me. Since the dosage was pretty strong I think I’ll be OK taking the last dose at half strength.

Here’s another thing, short term memory loss. I had two examples of dropping things and can’t remember the other one. I hate when that happens, like I need to make notes constantly to keep myself on track. Same thing happened when I left the city the other day after having lunch with my brother.

I had an idea for my other blog, but needed to know the mileage from home to the restaurant. I had set the trip thingie at zero when I left the house that morning and checked it as I turned right, made it across three lanes of traffic in order to turn left at the next corner. By the time I navigated all of that I had the mileage, 68 Kms, but forgot what the idea was.

Often these forgotten thoughts, ideas, whatever will come back to me out of the blue, but not this time. So I’ll just say that I’m dropping things, making weird mistakes when typing (thank goodness for spell check) and finding numerous tasks that require fine motor skills more awkward and tedious.

Small signs of my gradual and ongoing deterioration. Sometimes self awareness is not such a good thing.

The Least Little Stress

My day actually started off pretty good. I was up and dressed, had the garbage out and was ready to go to the other building to do my laundry. I had even packed everything on the walker so I just had to walk out the door.

It was a gorgeous fall day, the sun was shining and it felt warm and wonderful.

I needed to report to the manager, tell her about the vandalism to my car and my garden gazing ball. She came and inspected the damage, and wanted me to file a police report.

My day quickly went downhill from there as just that added stress, and something else to worry about, to need to take care of pushed me over my limit.

The policeman that came was very polite, and reassured me I did need to file a report to create a ‘paper trail’.

All I know is I am so tired I can barely hold my head up or keep my eyes open. But it’s too early to go to bed or I’ll be up the rest of the night. This whole thing has left me stressed, and I wouldn’t be surprised if when I finally make it to bed, I’ll suddenly be wide awake.

How Much is Too Much?

One of the problems with a disability like MS, and there are so many to chose from, is the loss of independence and the need to ask for help. When you have been able to do for yourself, it’s very difficult to admit you no longer can, that you need a helping hand.

There are certain things I struggle with on a daily basis, like standing (bad back), bending (bad knee), walking (off balance) and activity (too easily fatigued). So I’ve adapted the best I can, have assisted devices like a gripper, a cane and a walker. I have a shower chair and a stool in the kitchen.

I’ve had to accept help with my housework, vacuuming is just too painful, and gardening, too much bending. Some days it’s too much effort to cook, too easy to leave the dishes until the next day, and I’ve learned I can’t let the laundry pile up or I can’t get the bag off the stand.

I have trouble relinquishing these day to day tasks to others. I’m embarrassed, maybe a bit ashamed. I don’t know what will happen when I need help with personal care?

At what point do you lose your identity, your sense of self and become The Burden? When do you become the call inspired by guilt rather than true caring? I feel my friends becoming more distant, and why not? I can’t do the same things anymore, and I’ll admit, am not always the best of company.

My world is getting smaller all the time, shrinking along with my support system. There have been too many changes in this last year. I’m so tired of the frustration, the fatigue, and the failures. As winter looms, all I can think about is what changes will this change of season bring, and will I cope to get through it?

Talking to Children About MS

My children were in their early teens when I started having my MS symptoms. For a number of years we had no diagnosis but we had some issues we dealt with on a regular basis. Fatigue was the worst of it, and the kids learned to recognize when I had reached my limits.

When things got worse and I ended up at the MS clinic the kids were older and could accept, or so I thought. I remember one trip to the MS Clinic, when my daughter drove me downtown to the hospital. She waited for me while I made the rounds, nurse and neurologist.

When I came out she rushed to the elevator and I thought she was impatient, but she was scared and upset at seeing the other patients with greater degrees of disability and feared for my future.

I also remember reading a story about a younger woman who began using a cane and faced her young daughter’s upset when the mother went to her school. A very emotional experience for both.

There’s an article I’ve given the link to, about talking to your children about your illness. The only comment I have is that children are more perceptive than we give them credit for. They often sense something is wrong, and without any real understanding they can create a monster scenario.

When I found my condition changing and I could no longer do the things I’d always done, I felt I needed to give an explanation to my grandchildren, so they didn’t think I had abandoned them, or worse, didn’t love them.

I spoke to my one granddaughter, thought I had done a satisfactory job of it only to find she had interpreted things differently. She went to her mother and commented how sad she must be that I was dying. What? That’s not what I said. But a distant relative, a grandfather had died after being sick and she had equated that people of our age who got sick...died.

No matter how well you think you’re hiding your symptoms, they are called symptoms for a reason, something is wrong and people will notice things are amiss, even if they don’t know the what or why of it.

It’s a personal decision who you tell about your diagnosis, family, friends, your employer. Make it wisely.

Here’s the link:

http://ms.about.com/od/livingwellwithms/fl/How-I-talk-about-MS-with-my-children.htm?nl=1

A Mind is a Terrible Thing to Waste

I can’t believe the toll this last month has taken on my mind and body. I suppose after what happened last, year after the move, I shouldn’t be surprised. Any stress, any illness or undo sustained effort puts more strain on my system than I can handle.

September started with a cold and a toothache. I put the tooth thing on hold while I endured more than a week of sneezing, sniffles, runny nose and a cough. Meanwhile my abscessed tooth was up and down with the degree of pain it caused.

At the same time, I hurt my finger. Mallet Finger they call it, basically a ruptured tendon so now my left little finger is permanently in the bent position and another source of occasional pain. Like I needed more pain.

Had the tooth out, but it got worse so had a trip to the clinic and have just finished a ten day course of antibiotics. Can life now settle down? Apparently not. The toothless area still hurts and my cough is back.

In spite of all the pain the inconvenience, and the fatigue, what annoys me the most is the mental effects. I can’t concentrate, and it seems to take forever to put my thoughts together. I have a book I’m writing that has been in the final stage for a while now and I can’t think to keep the facts together.

But I’m blogging, you’re thinking, so how bad can it be. I need to do some kind of writing, so the blog is what I’m writing. The pieces are short, contained within that post, and it doesn’t matter if it takes me the whole morning to get it done. And it does. The mistakes I’m making are frequent, spelling, words I need to search for because they don’t come readily to mind and a lot of delete and repeat.

But what would happen, I think, if I didn’t do something to keep my mind active. Word search games are good, crossword puzzles and computer games. When I’m at my worst, I can’t write, but I can’t read either unless it’s a simple story.

So, yeah, I’m thinking a mind is a terrible thing to waste.

What Happens in the Past...

This is the same post I put on my other blog today, I'm sharing it here because it also relates to an issue of my MS.

My thirteen year old granddaughter delights in hearing stories about her mother’s teenage years. Her mother doesn’t.

As the family was gathered for dinner Sunday night a few stories were told about noisy neighbours and all night partying. My brother, who is a big guy and can look intimidating, used his physical presence to get the point across to the party-goers he was telling us about.

I laughed and said he could have called the police as my neighbours had done when my then teenage daughter had a party one night I was away. I did cover my granddaughter’s ears so I didn’t let out any family secrets.

As I related the story my daughter was adamant in her denial that it ever happened. After all, she said, “You’re cognitively impaired.”

I looked at her with surprise. She was right in what she’d said, and I had to laugh. I do have memory issues related to my MS, but sorry kiddo, it pertains to working, or short term memory, not long time, old memories.

We’ve all had to adapt our way of communicating, and my children have been very supportive with my memory issues. Supportive and comfortable enough to joke about it.

As my daughter said, laughing, she wasn’t admitting to anything and was using whatever was convenient to support her position of denial. It was a fun moment, a feel good moment that let me feel part of the group when I can so often feel separate.

Old Fashioned Recipes

Here's a link to some old fashioned recipes. I liked the opening, the talk of family get-togethers and the importance food has in so many of our memories. It says exactly what I was feeling, and maybe explains some of my feelings about giving up baking and cooking.


http://www.recipelion.com/Editors-Picks/25-Charming-Old-Fashioned-Recipes/ml/1/?utm_source=ppl-newsletter&utm_medium=email&utm_campaign=recipelion20140929

Bake No More

We had our family Thanksgiving dinner early this year. We have to adhere to an every other weekend schedule if we want the whole group together, for a number of reasons. And this weekend was perfect because my daughter had her niece and nephew for the weekend and the majority of the family would be in the same place come Sunday.

My daughter cooked the entire meal on her own, a feat she made appear effortless late in the afternoon, though I imagine we missed some stressful moments from earlier in the day, especially with six kids running about the house.

My responsibility was to bring the dessert, pumpkin pie being the 1^st choice for everyone. Years ago it would have been nothing for me to bake up a storm of pies, along with some other tasty treats. In these last few years I’ve resorted to store bought pies with some added home baking.

It’s been hard to admit but I feel my baking days are behind me, and I’m left with the memories of baking for the family, baking with my grandchildren.

I need my stool when working in the kitchen, as I can’t stand for long without pain in my back. The bar type stool works well except it means I have to do everything with my arms raised high. So baking, and using the mixer, is difficult. Within minutes the mixer feels heavy and I’m struggling. I’ve tried to adapt, using cake mixes instead of using a recipe, making cakes or cupcakes the day ahead to spread out the effort required.

But it’s not just the physical struggle; it’s the mental strain while struggling physically. It means mistakes are made and results get tossed in the garbage. Of late there have been more failures than successes.

Saturday I baked a new recipe, adapting the recipe to make it easier, and doing without one ingredient that I figured was optional. The whole mess went into the garbage.

So, on my way to dinner I stopped at the store, intent on buying two pies, apple and pumpkin. Either a lot of other people were also celebrating an early Thanksgiving or the store doesn’t stock pumpkin pies until closer to the actual holiday, but there was no pumpkin pie to be found.

Just in case I bought an apple and a strawberry/rhubarb, added in some butter tarts as they are always a family favourite.

Guilt is a terrible thing. I felt like I was letting my family down. This was another loss for me, something else to add to the Can’t Do Anymore list, making my Can Do list a little shorter. It’s much more than an activity, it’s a part of who I was, who I was to my family and grandchildren.

I guess you’d have to be there to fully understand, but for me the whole situation just sucks. But, at the same time, admitting it makes things easier, and maybe I’ll rid my shelves of all the baking paraphernalia and gain some cupboard space. I’m trying to think positive.

By the time I got to M & M’s the guilt hadn’t worn off completely. I got the pumpkin pie, and added a box of mini éclairs I thought the kids might like. We ended up with way too many sweets, which was fine with the grandkids, and everyone got some pie to take home.

I need to find those recipes that are easy to make, maybe stovetop instead of baked, and wean myself off this need to cook for the kids, but it’s been such a pleasure point in my life.

Baby steps, it’s all baby steps.

Unproductive Time

I’ve previously written about my ongoing fatigue and I have to say the mental fatigue or brain fog is sometimes worse than the physical. With the mental fatigue I am unable to think, unable to do, but even if physically tired I can do some things, like write or crochet.

I had a toothache over the long weekend, and figured I’d call the dentist on the Tuesday for an emergency appointment. But that Sunday night I came down with a cold and felt the fates were on my side. By Tuesday I may have been suffering from a head cold and a constant cough, but the toothache seemed to go away.

I endured the week, was visited by the soup fairy who brought me soup and cough lozenges and by the next week, I was finally getting better. But it had been a totally unproductive week, at least for what I’d hoped to accomplish.

In the middle of all that, as I was recovering from the cold, I hurt my finger so my excursions out were to the grocery store and the walk-in clinic. I did make it out for my usual Thursday lunch but it was a short day, and I was glad because I wasn’t up for much.

I had the toothache again over the weekend and finally saw the dentist on Tuesday, two weeks from the time I was originally going to call, and ended up with an extraction because of an abscessed tooth. One more thing to deal with.

Two weeks of one issue after another, one of those “hit her while she’s down” things. Here I am still dealing with the remnants of the cold, that persistent cough, a permanently bent finger that still hurts, a toothache and an extraction, and then the windshield wipers on my car won’t work.

I want to SCREAMMMMMMMMMMMMM. But I won’t.

It’s Thursday and my friend is picking me up for our weekly lunch and this week we are going to write. It’s just what I need to get over the last two weeks, to leave all that wasted and unproductive time behind me and get working again.

Understanding Chronic Fatigue

Someone asked me the other day how I could say I was tired when I did so much. Really? I was completely blown away with that person’s total lack of understanding.

Just this past week, when I went to the store, it marked the first day in the last ten that I had left the house. First it was the cold and cough and generally feeling yucky, then it was a leftover sense of fatigue, worse than usual.

I made plans to go out that Sunday because I needed groceries and more important, I needed yarn. And look where going out got me, that’s the day I tore the tendon in my little finger and now it’s permanently bent, medically known as Mallet finger.

But it got me out of the house two days in a row as a friend drove me to the walk-in clinic on Monday to have the finger looked at and we went out for lunch.

I spend my days at home, sitting in my chair for the most part, on the computer, reading or crocheting. Without these things to occupy my day I’m sure I would go crazy.

This morning I had to take the garbage out, and as I’m not walking well today because of back pain, it was a chore. I met my two neighbours outside, and since it’s a cool but sunny day, we visited, with me sitting on the edge of the garbage bin.

So now I’m back inside, sitting in my chair, my eyes heavy and feeling totally worn out, and it’s only 11:30 in the morning.

I usually start the day with coffee and my daily yogourt, while I check things on social media. That’s E-mail, Facebook and both of my blogs. I check out Amazon daily, always hoping there might be some sales for my books available for Kindle.

I like to write in the mornings when I think my concentration is better. It used to be I’d write late into the night but I’m not good for much late at night but reading, maybe playing games on the computer. I can’t write and I can’t crochet, my eyes are too blurry.

From basically lunch time until I go to bed I fill my day with whatever catches my interest. Last week I did a lot of crocheting, Christmas projects, and I wrote posts for the blog. I didn’t feel up to par because of the cold so I had to set the book aside, not enough energy to think and write an ongoing story.

I can spend hours going back and forth from Facebook, Pinterest and the number of craft sites I get daily newsletters from. Those are the days I have brain fog and can’t get my mind to concentrate, days when even the simplest crochet pattern doesn’t seem to make sense, I can’t remember words and am lost as to what my book characters are doing. Those are the days I sleep a good part of the day away.

When I go out, as I usually do every Thursday, lunch with a friend, I come home exhausted. But the day out, the social time is worth the resulting fatigue.

For the ‘normal’ person who has things to do, places to be, a busy life, it may appear I accomplish a lot. But for someone who is faced with more than fifteen hours of a day to fill, I’m not accomplishing anything compared to what I might if I had the energy.

That insensitive comment really irks me. It has taken time for my friends and family to understand, and I haven’t had to make excuses for my lack of participation. It’s so nice when you have people in your life who understand.

Like my son who checks in with me regularly, asking if I need anything and just to ask how I’m doing. He takes care of my garden, other than the watering of my pots, which is why those plants didn’t survive the whole summer. Out of sight, out of mind. He’ll pack up my planters, my gazing ball and my plant stands and store them for the winter.

My daughter who calls and asks if I need anything at the store, can she get it for me or if I want to go, she’ll pick me up. I can shop better when she picks me up, but then she also packs my groceries and carries them in the house.

Getting dressed to go out is an effort and you have no idea how much energy it takes to walk out to my car, lift the walker in and get in the car. I need a rest before I even start the motor. I hate heading out to run errands with my eyes feeling heavy and my body weak.  It is such a luxury to be picked up at my door and not have to drive.

And then there’s my writing buddy, my Thursday lunch date. She picks me up and always asks if there’s any place I need to go while we’re out. Sometimes we’ll go to a store I’ve wanted to get to but haven’t managed it when groceries would have been my main focus. She’s always good for a stop at Staples, but that’s a dangerous place for two paper lovers like us.

I’ve joked for years about living a half life, needing to rest before a day of activity and crashing the day after. It was true, but at the same time I was managing to have days of activity. Since my relapse last year that half life looks good and I wish I had the energy to do what I managed to do back then.

So here it is, after 1 o’clock in the afternoon and all I’ve done today is put the garbage out and write this blog. I’m tired, bone tired, and I know a nap may feel good but it won’t make the fatigue go away. Good thing though, my back is better, because I rubbed it with Voltaren gel, or because I put on the magnet bracelet I forgot yesterday after my bath?

Maybe I’ll have a bite of lunch and a short nap. I’d like to do some crocheting later, too many unfinished projects to complete. Whatever gets you through the day, right?

Brain Fog

When I was writing my blog for the A-Z Blog Challenge, I chose “T” is for tree as my topic because they were going to cut down the tall tree in my yard next week.

I had a particularly bad moment, and have lived it twice that day. Brain Fog. I think it’s a case of brain fog, of the word search variety. I was trying to talk about having the ugly tree stump left after they cut the tree down, but could not remember the word ‘stump’ no matter what I did. I called it a root base, and knew it was wrong, knew there was a word for what I was describing, but couldn’t come up with it.

At the end of the blog I mentioned seeing pictures of how trees were made into fairy houses and searched on Pinterest for a picture. Well, I found a picture and it had a caption. ‘Fairy House made out of a tree stump’.

STUMP. Stump was the elusive word I’d been searching my addled brain for, and couldn’t find. I went back and made some corrections in the blog, thinking how much easier it read, how much more sense it made when I used the correct word.

Unfortunately, not all episodes of brain fog are so easily resolved. A recent craft project has made me want to do something arty. I don’t have a good set up for painting and had something else in mind. For further inspiration I went back to Pinterest. The empty search box stared back at me. What was that word for the type of art I was interested in? I can’t remember. I feel like it’s on the tip of my tongue, but I can’t find it.

I searched “Sculpture’. Not what I wanted and though searching through various boards was inspirational, it was not what I was seeking. I tried ‘Embellishments’, not that either. I can picture it in my head, can almost see the ward, but it escapes me.

And with that frustration any energy I had to start some art project has been defeated. It’s just that easy to change a positive mood into a negative, as once again, my brain has let me down. Now I feel no inspiration, no creative energy, and no desire to do anything.

Tres Fatigue

I cancelled out on plans yesterday because I just didn’t feel up to going out and sitting about socializing. People don’t understand how really tiring it is to talk to people, to keep track of multiple conversations, to sit upright and pay attention.

I’ve had a rough week and I just wanted to stay home, wanted it enough I passed up on the barbecued steak my son has promised me all summer. Social time with strangers is stressful, but just because its family doesn’t mean it’s any easier.

My son dropped in with the kids and we had a visit her, after which I had a nap. I have plans for today, though the way I’m feeling I want to cancel.

I usually shower or bathe at night as the exertion, combined with the heat of the water, leaves me exhausted. A better feeling before going to bed than going out. But I wasn’t up to it last night.

I’ve showered and now, as I write this, my head is pounding, my eyes are heavy and I need to rest. I knew it was a bad idea to shower before I went out but I didn’t have any choice. Why does something so necessary and so everyday cause my day to be ruined and lost. I’m feeling the brain fog taking over.

Soon I’ll have to get dressed, walk out to my car, load the walker, drive to my friends and meet all my old neighbours and pretend I want to be there. It all seems too much and it’s much easier to just stay home.

And really, I would like to be there, to meet with some friends, but not when I can barely keep my head up. I’m going to take a couple of advil and lie down, maybe a miracle will occur and I’ll feel better when I get up.

Personality Changes

I recognize now that I am so much more than whom I perceived myself to be. I’ve done reading, self-help exercises and all that stuff, and understand how I got to this point in my life. I wish I’d been strong enough to make some better decisions; instead I seemed to rebound, from one situation to another, never looking at the future, never thinking of what I needed.

And what I have to wonder now, is how much of my thinking, my behaviour, was influenced or affected by my disease. I wasn’t always so sad and serious, was I? When did I start feeling so worthless? I know depression played its part, and maybe the antidepressants helped for awhile. But I couldn’t handle the dreams. They were too intertwined with the real parts of my life and it got so I didn’t know what was real and what wasn’t.

When did my personality change? Were the changes the result of what I was experiencing, or were they caused by the numerous lesions in my brain?

I didn’t recognize or consider this until much later. Cognitive changes were not even on my road map, I was all about the physical, what I could see and feel.

My reaction to the earlier MRI was fear. Fear of losing my true self, the person I was. Fear of losing my memories. Somehow, in my mind, I equated losing my memories, losing my memory as losing me. I began to write the family stories, what I knew and remembered of each member of the family, at least those who were dead and gone. I wrote details as I remembered them, and stories that shouldn’t be forgotten.

I became obsessed that my grandchildren not forget who I was, that they would have memories of me that they would cherish. I loved to cook and often baked with the girls, so a cookbook of my favourite recipes, recipes we’d made together, seemed perfect. Scrapbooking was all the rage so I started taking all my tried and true recipes and put them into scrapbook format. I have the original, and made photocopies for each of the grandchildren. I bought them each a binder, did a fancy cover page, and organized the recipe pages in sections, each page protected in a plastic sleeve.

The kids loved cooking with me and I took photos and added those to the new recipes we were trying. As events occurred, birthdays, holidays, and such, I found new recipes to try and record for the book. I started adding anecdotal notes, making it even more personal. When I began there were four grandkids, but not long after I started this project, there were two more. That was some mad photocopying to make copies for the newest family members.

The problem with starting something like this is keeping it up. It was a make work project, and I was setting myself up to fail. Even now, I have a file of recipes to organize into pages for our books, and completed pages to photocopy. My plan to give the kids new pages every year at Christmas has stalled.

I don’t need the emotions that plague me because I feel I’ve failed them, I don’t need a reminder that I am no longer an able person.

Flyers and My Shopping Lists

Today is Thursday, the day the newspaper is delivered with its array of store flyers, and all the bargains for the coming week. I have a bit if a ritual where the flyers are concerned. Because I have some memory issues, I make a list for each store of anything and everything I might be interested in, so I can make an informed decision on where to shop.

This habit began when I lost the energy to run multiple errands at any one time. I’m good for maybe 2 stops, so I have to make the most of each one.

As I was cleaning up yesterday I found three shopping lists for the past few weeks, and realized I had not been in any of the stores on my list. Actually, I realized I had not really been in a grocery store for a good shopping in almost a month.

A week ago my daughter picked up groceries for me, and this past Sunday we went to Walmart, because I needed more than just groceries. I’ve had a cold so my get-up-and-go, got up and went, and I’ve relied on the help of others.

The lists aren’t important, as I’ve been able to get what I need. The lists that are never used are just another reminder of how I’ve adapted my life to my disease.

And here’s the connect...because I’m not out every day, I forget to water my pots outside the door. They’ve been struggling but after this recent drought, I’m afraid there was no recovery possible, the plants were done for. Two weeks ago I saw a garden flyer, and added fall mums to my list, to replace my near dead petunias. I never got to the store.

On a higher note, I was coming back from the doctor on Monday after having my injured finger looked at, when my friend and I stopped at the store so I could get my mums.

Sometimes you just have to grab onto the moment, and get it done. Sometimes you have to persevere, mind over matter, and not give in to the fatigue. I may have been tired that night and into the next day, but when I walk out my door, I have beautiful yellow blooms to greet me.

Noodle

Years ago when my children were small, I had what I call a choking spell…while eating spaghetti. It was scary at the time, but by swallowing water, whatever it was cleared and I was okay. “Noodle” became our code, for whenever this happened. If they saw me stop eating, pause, and reach for something to drink, they would ask “Noodle?” and I would nod. They’d wait until I gave the okay, or get me more to drink if needed.

This was not really what you’d call a choking spell, because my airway was never blocked, and I could breathe fine. I swallow, and the food sticks in my esophagus, like the mechanism for moving the food into my stomach has stopped working at the back of my throat. If I drink enough, I can wash it down and continue eating. The sticking part is above the spot where I could choke so I’ve never been in any real danger.

But, just because I’m not gasping for breath does not mean it doesn’t scare me. At the very least, it’s an uncomfortable feeling. My neurologist doesn’t call this choking either; he says most MS patients with swallowing difficulties choke on fluids, not solids.

I have found that this happens more frequently when I am with other people, because I am talking and eating, and maybe not paying enough attention to chewing and swallowing. And maybe, when I’m really tired I need to be more careful.

Funny, after all these years, and many of those years where we’ve lived apart, my children are still quick to pick up on the signs and jump to my aid. What can I say, they’re great kids.

Elevated Blood Pressure

One summer, prior to the time I began my downhill slide, I suffered from sporadic bouts of elevated blood pressure. I could feel the difference in my body, the pounding, the increased shortness of breath, and the headaches. If I was in a store, as most of these ‘bouts’ occurred with activity, I would check my blood pressure using one of those machines you see in and around the pharmacies. The reading, even when I sat for a few minutes to offset the activity, was always elevated far above my norm.

Was this going to be a new problem for me, I wondered. Did I need to worry about stroke on top of everything else?

The episodes were often enough to be of concern, but not so frequent as to cause panic. So, as is my usual, I watched it for a few weeks before I went to the doctor. In the office my blood pressure was elevated, but my doctor chose not to jump into treatment. She’d had an MS patient with the same thing, but she got treated for her elevated BP. When her blood pressure dropped to her normal levels she bottomed out because she was on medication to lower a blood pressure that was no longer elevated.

My spells lasted about a month that summer, and have never returned. Every time I have my BP checked its well within normal limits. Just another one of those MS things to keep life interesting.

Paroxysmal Symptoms of MS

Paroxysmal symptoms of Ms are the sudden onset of a neurological symptom that may last seconds to minutes, repeating a few to many intervals per day. They may present as spasms, numbness, visual disturbances, a tic in the eyelid, or difficulty swallowing, just to name a few.

There are factors that may trigger these sensations, like fatigue, sudden change in position, temperature change, sensory stimulation such as touch and more.

Here is a link if you want to read more about this strange symptom.

http://mssociety.ca/en/information/symptoms_mng_paroxysmal.htm

I’ve had that annoying tic in my eyelid, always the right eye, same side as my facial numbness.

And I’ve had bouts of blurry vision. Like the other day when I sat down to write and had to strain to read what was on the screen. I gave it up and went to formatting, adding manual page breaks at the end of chapters, preparing my latest book for publication on Amazon. Some times when my eyes play funny I crochet, so long as the pattern is simple and the colours are light. I have trouble when I crochet with dark colours because I can’t tell one stitch from another.

My eye doctor once told me that people with MS had difficulty distinguishing colours. Like if you had a plaid, you might have trouble matching colours within the weave. I figure this is why I wear so many solid colours, but then I always did favour black.

If you have a number of these strange symptoms plaguing you throughout the day, it can be tiring, adding to your fatigue by dragging your attention from whatever is happening, or whatever you’re doing, back to your disease. Eventually, they just become part of your life, sudden annoying reminders that you have a neurological condition.

I do believe that if the symptoms are new, and occur in a cluster, it can be a sign of a relapse, and you should contact your doctor to discuss it.

Like I said before, weird and unusual.

Weird and Unusual

Weird and unusual could be the name for MS. It is a disease with so many symptoms, that no two patients present the same. I have symptoms that have been with me since the beginning, and others that come and go, just to make life interesting.

One of the strangest sensations I’ve had is a feeling of wet. Yep, you read that right. I would walk across the kitchen floor and feel like I had walked through a puddle. My poor cat, he took some blame for this in the beginning. I would check the floor, find it clean and dry, and realize this was just another one of those MS things.

Not only did I feel this sensation when walking, it would happen when I sat down. I can’t tell you the number of times I’d sit down in a chair only to jump to my feet because I thought someone had spilled something on the chair. I’d wipe my hand across the surface, find it dry, and sit. I had to check, each and every time, just in case there actually was a spill. Annoying, for sure, but it was just part of my life. I haven’t had that sensation for awhile, so I wonder if it occurred more often when I was working, and in a constant state of fatigue.

Have you ever gotten those spasms in your feet where your big toe goes in one direction and the other four toes another. It’s like a cramp, sometimes irritating, other times extremely painful. I found it best to just wait it out, the spasm never lasts long. If it was too painful, I’d try to stand my foot on a solid, colder type floor. So the bathroom or kitchen floor rather than a carpeted bedroom.

From the beginning, and to this day, I have no feeling in the outer aspect of my left thigh.

Here’s one of the weirdest. I see…let me rephrase that, I have the sensation of seeing or feeling bugs. At least I think its bugs. I can be sitting in my chair and think I see a bug scurry across the table or on the bed when I’m reading at night. I see that flicker of movement and quickly look, but there is never anything there. Sometimes it’s the sensation of something crawling over my arm, again no bugs. I know it’s not real, because after all these years you’d think I would have seen a bug, if that’s what it was. Since I hate spiders, this can be annoying, so I always have to check.

I think these are what are known as Paroxysmal Symptoms of MS. More on that next time.

Bladder Blues

I have been to the bathroom five times with this feeling I need to pee. Each time I sit there and…nothing. It’s not a matter of kidney failure, it’s bladder failure, or maybe retention is a better word.

I feel the need to go again, and know if I ignore the feeling, this will be the time it will happen and I’ll end up peeing my pants. So back to the bathroom I go. At least the back pain I woke up with has eased, and getting to the bathroom is not so much of a struggle.

This time I’m finally successful, something is better than nothing. But I’m uncomfortable and go to bed, try to read and end up having a nap.

I think I’m in ‘retention’, which is different than ‘urgency’ in the MS Bladder dictionary. Retention is being unable to go, not any, not at all, and urgency is a need-to-go-real-bad-right-now kind of rushed thing.

I’ve been in retention before, and the reason I feel that I’m in the grips of it again is that I have chills, ever since I peed about 2 hours ago. I cannot get warm, in spite of my fleece jacket and the fuzzy throw; I’m still cold, and shaking. I refuse to turn the furnace up, but if it doesn’t settle soon may take a warm bath to try and stop it. Yeah I know, warm bath, MS, not a good combination. That’s why I’ll put it off, try a warm cup of tea first, and have the bath later, when I can go to bed, and hopefully sleep.