What a Pain in the Back!

I have Multiple Sclerosis. But it is not the MS that plagues my day, it is the back pain.

I can barely walk any distance and I can only stand for a few minutes without something to lean on.

When I go shopping I can barely make it through the store, and believe me I don't attempt every aisle. But, as it is, I cover enough distance to make my back ache horribly. Why, I ask, do the refrigerated items have to be at the back? Why not the mops and brooms and all the water and pop?

I know, I know, it's because of the refrigeration and how they fill the shelves from behind, from another refrigerated area. Still.

I was out with my son yesterday, just company when he had to pick up a gift from a store out of town. We grabbed our coffee and hit the road. Mother and son time.

The store was in the country, on a highway heading north, and was a supplier of all and everything related to hunting and fishing. The store was huge and had everything you could imagine and more. I was curious and went in to look.

On the drive I had been talking about how far I could walk before hitting my limit. I managed to get through the front area, up the step to the back section and did a circle through. Then the pain hit, mild at first, then getting worse as I continued to walk.

I looked at my son and said, "This is my limit".

I walked down to the cashier as he checked out and made it to the car with little problem.

At home I needed to sit, glad I didn't have anything to do, no groceries to put away, nothing but to say goodbye to my son and thank him for the day.

I see now why those shopping days really torture me. It's the walking, the lifting, the loading and unloading of the car. I get the frozen and refrigerated stuff put away and forget about the rest, needing to lie down.

It's a cruel fact of life that when you want to shop more frequently (so you carry less and don't have to buy so much fresh fruit and vegetables at one time), you can't get out that often. How nice for younger people to just drop by the store on the way home for  those few items needed. We older and less able people don't/can't get out as often and so need to stock up.

I hate having so many fruits and vegetables that I can't eat it all before some of it goes bad. I know I shouldn't buy so much but it's hard to resist.

Here I am, a few days before Christmas, sitting in my comfortable chair, complaining. I should be glad on a day like this to be old, older, and less abled. I don't have to worry, as a manager, that needed staff can't make it to work because of the snow, or that I need to go to work and my kids are home from school, yeah, a snow day.

We all have our challenges, life is never easy, but we can help each other and make our burdens less.

Merry Christmas, Happy Holidays!

Facing Dreaded News

I have a friend, an older lady, who got the bad news the other day that all older people dread...that she can no longer drive. For her it's a visual thing, and she is no longer safe to drive even the local streets of our small town.

She knew it was coming as she'd already quit driving at night or to out of town places that were not as familiar. But knowing it's coming is not the same as hearing those words that make it true.

We talked the day she'd been to the doctor and she seemed fine, accepting.. I called her today to see if she wanted to go to the store with me, but she was stuck at home waiting for a service call. You know the old 'he'll be there between one and three' kind of thing.

She admitted yesterday was a bad day, reality sinking in. It wasn't that she had anywhere to go, it was the idea that she couldn't just 'get up and go'.

As I've been dealing with the changes in my own status I can sympathize. The list of Can't Do gets bigger than the Can Do's.

I'll have to think of her more often, see if she wants to accompany me on my shopping trips. It's fun to have a friend along, maybe to turn shopping into a lunch out and some conversation.

Always a plus for those of us who live alone.

Brain Blip

I haven't written for awhile, and though I'd like to say it's because I've been out and about, too busy to write, that is sadly not the case.

As prepared I was for Christmas, or so I thought, I had a little brain blip that caused me and everyone else needless stress.

I have a journal that I use to keep track of my Christmas shopping. I find this necessary as I start my shopping in January and have to find spots to hide the stuff throughout the year. I could tell you what I bought everyone on my list going back about 10 years.

I divide the pages so everyone has a column, and it takes four pages with 7 grandchildren, my two kids, their spouses and the other friends and family I buy for.

I'm a bit OCD, as I not only write it all down, I highlight it when wrapped. That way I know when I have to search for the gift I hid away eight months before.

I was wrapping what I though was a few last minute gifts and found my journal almost empty of entries. How could this be? I had the feeling I'd shopped a great deal and my first thought was I'd neglected to write it down.

I asked my son about gifts I'd wrapped and given to him to store. My daughter had one bin and I thought my son had two. Unfortunately he couldn't find them. And I was adamant they were at his place.

Stressful times. Here I was thinking I had all these presents and now, weeks from our family gathering, I had very little.

Given that I have not been out much this year, my back pain greatly limiting my activity, I figured my son was right. The 2 boxes of gifts I thought I'd given him were from the year before. I made my apologies to all concerned.

What I had was a plethora of crocheted items. I had made 4 sweaters and numerous hats, scarves and mittens. I also had the 15 items that I make, different each year, one for each person. This year it was stuffed animals, a fun change from socks, slippers and hats.

I did do a mad dash of shopping to complete my list, easily done through gift cards as the older grandkids are fussy and too hard to buy for, particularly clothes.

I got it all done but this total loss of awareness of my shopping/buying status, and the prominent memory of last year that was so dominant scared me. I hate any of these brain blip episodes as they come without warning and jar what I think of as my reality.

At least I can stand by my journal and its effectiveness. My system works, it's my brain that let me down.

Wishing you all the best for this holiday season.

As Days Go By

I'd like to say that the reason I haven't posted of late is because I'm busy and having a good time, but unfortunately that is not true, or not completely true.

Some times the days kind of blend, and pass without any real sense of time. I've been out and around, but I don't call running errands or shopping for groceries a big deal. Though there are days I struggle to do even that.

There have been a number of day trips. One to Kingston to the MS Clinic, my yearly check in. Not a lot has changed, so that was the good news. Sometimes I think the MS is quite manageable, if only my back and knee were not so problematic.

I did manage another day trip out of town, went with my daughter and grandson for his doctor's appointment. We went to Costco and out for lunch.

Yesterday I met my brother at our halfway point, him coming from the west, me the east. We had lunch at our usual spot and I even managed a short visit to Michael's before rushing home to meet family.

It was my granddaughter's first night of indoor soccer, and she, her Mom and siblings were meeting for pizza first. It ended up a long day as it was also my son's birthday and as he worked until seven, the timing was right for us to all meet for ice cream to celebrate.

Today I'm a little slow, tired and my plan is to stay home and get a few household chores done. Or maybe I'll have a nap, and move my today's To Do list to tomorrow.

Anger and MS

Who would have thought there were different kinds of anger? Well, this article about anger and MS describes the different kinds of anger often found in MS patients.


I think it was a very interesting article, especially how MS may be a factor in anger. So, I may not just be a miserable bitch at times, holding on to anger, because....well...because I'm a miserable bitch. There is a disease process in the works.

I do believe these descriptions work for all people, not just those with MS. Recognize anyone in your life who has anger issues?



https://www.verywell.com/anger-in-multiple-sclerosis-4114775?utm_campaign=list_ms&utm_medium=email&utm_source=cn_nl&utm_content=10753091&utm_term=

A Commercial I Avoid

There's a commercial on television for Voltaren gel, a topical pain medication for joint pain. It shows a grandmother with knee pain, who uses the gel and is good to go, no more pain.

I wish it worked that way for me. I use a topical called Motion Medicine that my son got for me at the chiropractor's office. I use it on my back, my knee and on my shoulders when necessary. It's my favorite topical pain reliever.

In the commercial the young boy talks about his grandmother, and it shows her being very active. His final comment is that he's glad his grandmother "is fun again."

If it were only that easy.

It made me think that my grandchildren, ages 8 to 19, have for the most part, never seen me healthy. I have been on disability since the second grandchild was born, 16 years ago. It's been a steady downhill slide since that time, MS and the arthritis.

There was the original concern, about tiring me out, but at least I was mobile, better than today. They've seen me progress...though decline is more apt...to using a cane, and then a walker.

How I wish there could be more, I could be more, but it didn't work that way.

Hate that commercial, when it's on I check the schedule or the weather, no sense being bombarded with what can never be.

"We are Experiencing Technical Difficulties..."

I am often frustrated with simple tasks or challenged beyond my coping ability when something stops working, most often something of the technical variety. For me it's usually the computer.

Hard to imagine that for my friend, a very active 90 year old, I am her 'Go To' person for such things.. For the most part, I can help her out, though there was that one time I had to call my daughter, my 'Go To" source for technical help.

I was getting ready to go to lunch yesterday when my friend appeared at my door in a real frazzle. Her phone had a constant busy signal, and her personal alarm was flashing, and not working. For someone living alone, these are her life lines.

If I hadn't been aware of my other friend coming any minute, I might have thought things through better, but that's part of my disease process, not being able to do the quick thinking and respond appropriately.

I checked her phone, and found a busy signal. We checked all the connections and all were secure.

I had the bright, and useless, idea to try her phone in the wall jack, rather than the modem. Of course it didn't work as the wall jacks are old Bell Telephone lines and we use Cogeco, the cable company through the modem. A waste of time.

My friend is now sitting in the car out front.

I wonder if it's her phone, maybe the actual phone is no longer working, in which case she would need a new one..

"What about your cell?" I ask.

She shows me the phone, a very simple model that is dark and dead. When I ask about the charger, I'm told it's in the closet, and I shake my head, but hold my tongue. I explain that the battery on her phone loses charge, even if she doesn't use it and still needs to be charged.

Now, I'm in a frustrated dither because I'm keeping my friend waiting. I decide to hook my phone up at her place so she has a phone at least, and promise I'll check it all later. She doubts this action as she thinks it will be my number, but I explain that the number is not in the phone itself, but in the line.

So I run back home, across the walkway, unhook my phone and re-hook it up at her place.. No busy signal, no anything.

I can't deal with this anymore, the self imposed stress of trying to think and do, with the added pressure of having to be somewhere else. I leave her and tell her "I'll be back."

I calm down over lunch and come back, thinking more clearly. The stress was hard on my friend, I found her worn out and napping in her chair. To give her her due, she is sick right now and not feeling at all like herself.

I take her cable bill and my phone back home and call the cable company. Well. lo and behold, they are having technical difficulties with their digital phone lines. They gave instructions to do something to the modem and see if it corrects itself.

I go back across the path, and we grab a flashlight and try to find this tiny hole in the back of the modem the voice told me about. Of course, her modem is on the bottom shelf of her bookcase. She gets down on her hands and knees, because my knee wouldn't allow me to put the pressure on the joint and once down, my back would not help me get back up.

We poke the hole as directed and we have phone service. All is well.

I am now totally drained and take a three hour nap.

But, I have to say, being able to help my friend gave me a good feeling, my good deed for the day.

My To Do List for the Day

Finally, after almost a month of suffering with back issues, I seem to be moving better, back to my norm. I still can't stand for more than a few minutes, but am moving around better, not waking up and worrying if I can make it to the bathroom.

I got a bit carried away with my new status, as I'm tired of seeing the mess that has accumulated for the last month when I've been able to do dishes and that's about it. I badly need to vacuum, and that was first on my list for yesterday.

I love lists, but never seem to start at the top.

Before I got to the vacuuming I decided to clean out the stacked set of drawers that serve as my bedside table. As I crochet in bed, little bits of yarn get scattered about, and I swear they were all tangled around the casters of this bedside table. That's where I started. Luckily the casters came off, to make cleaning easier, and once I removed all the drawers I set to cleaning the frame, one section at a time.

I sat to do this chore, and it went smoothly until I scrubbed a spot and was too enthusiastic, hitting myself in the nose and mouth. One job done, drawers cleaned and organized, caster free wheeling.

Next I decided to dust my many bookcases before vacuuming. That was delayed because I wanted to reorganize, pulling the books off the shelves that I was deleting from my collection. There were too many books (not that I think you can have too many books, just too little space) crammed into every cranny.

Because of the back situation, I had to take frequent rest periods to prevent a repeat of last month. While I was resting I picked up one of those books from the 'to get rid of' pile and started to read.

Need I say more. Now today is my day to vacuum, first on my list.

Back to Back

Time has passed and as much as I'd like to say my back has improved, that I'm walking with ease, it just ain't happening. My bad back and I are together for the long haul.

I saw one of those commercials on TV about laser back surgery, and I have to admit it crossed my mind. How wonderful it would be to go in, have a quick bit of surgery and walk out pain free.

It must have been in the back of my mind when I saw the doctor on Friday. I asked about a new MRI, thinking maybe something could be done for my back. She said no. There was nothing to be done, to many degenerative discs, pinched nerves, arthritis. Not something to be done by a quick in and out.

I realize the things that cause me problems, like lifting anything over 18-20 pounds. It doesn't help that my walker weighs 24 lbs. and I lift it in and out every time I go out.

I am making an investment in a new mattress, hoping that will make it better for me in the mornings, that it won't take me most of the day to get moving. I am definitely not a morning person.

One thing I have noticed, is how much dust and dirt accumulates in three weeks. I have been unable to do even the most basic housekeeping. The dishes is all I've accomplished, and that is only because I've had basic meals and used paper plates.

If it could just get a little bit better, that's not asking for much, is it?

Oy, My Aching Back

I made it through the week, feeling a slow, but sure return to some easier mobility. Had my shower and felt better, almost human.

Human enough to try for a trip to the store, my refrigerator had never been so empty. I made it around the store, using the cart like a walker, leaning on it quite heavily by the time I made it to check out.

The night was rough, the pain I usually feel on standing and sitting plagued me in bed, making it difficult to turn and find a comfortable position.

I'm trying to keep moving, up walking, sitting in my chair, stretching out flat in the bed. I'm taking Advil at its maximum daily dose, for the pain and the anti-inflammatory effect, and hope this will soon pass. I will never be totally free from back pain, but this exacerbation is hard to manage.

I had an MRI done a few years ago, and my doctor's words on seeing the report..."Your back is a mess".

I can't agree more.

And why is it that when your back hurts you get clumsy and drop things, or need things on the very top or bottom shelves? I need to vacuum, but that will have to wait. It will be enough to get the garbage to the curb tomorrow, and if I don't get some laundry done soon I'll be in dire straits.

Day by day, that's how it's given so that's how I'll take it.

Back Pain and More Back Pain

What day is it? I seem to be all confused, which often happens after a long weekend, but this time my week has been turned upside down because of debilitating pain.

I woke up Tuesday morning and could barely stand, stumbled into the bathroom but then could not stand at all. If not for the sink close by, I may have just fallen to the floor from having to sit so long. (Toilets are not comfortable).

I made it back to bed in a semi standing stance, using the door frame, furniture to keep me upright. Let me just say, it was a rough day. I made it over to my walker and used it to support myself, something I have never had to do inside before.

I was relatively comfortable as long as I was lying down, but to stand or sit, I was in such pain. All of that day and most of the next were spent in bed, and I am getting so tired of being in bed, inside and not able to function.

Today, I managed to get a shower, though I had my doubts it was going to happen when the first challenge was to lift my leg over the edge of the tub. It was difficult, but the hot water felt great and I got it done. I actually feel somewhat human again.

But I've been in my chair for a few minutes, on the computer, checking e-mails and such, and I can feel the pain start again. I best get some breakfast while I can. Meals have not been a priority these last few days but I need to take my medication with food.

I have coped with the bad knee, the Multiple Sclerosis, but this back pain affects everything I do. It hampers my mobility more than the MS.

I wish I had taken better care of my back when I was younger, but then youth gives us a sense of invincibility, that we can do anything. Unfortunately, we pay for that 'anything' later in life.

Does Absence Make the Heart Fonder?

Funny, exactly a month today since I posted last. I'd like to say I was busy as anything, maybe off on vacation, but alas, not happening.

In the ongoing saga of the new meds, I was doing a very gradual increase and it wasn't working. Instead of increasing each week until I was on four pills. twice a day, I increased just the evening dose and stayed there for awhile.

I feel like I lost time, feeling so tired all the time, fuzzy headed and my balance was worse, giving me a few near falls.

I decided to cut back to one pill, twice a day. I also went back on the B vitamins and vitamin D. All that has given me a bit of more energy, cleared my thinking a bit.

The nerve pain that has plagued me at night is still in control.

So, all in all it's a win win for me. I need one of those as I struggle with the ongoing progression of my disease.

It is what it is, we take it one day at a time, just the way it's given to us.

Ain't No Twinkle Toes

Have you ever had those spasms in your toes where each toe is going in a different direction? I get them frequently, and was lying down, felt my toes tense and looked down.

On the right foot, the big toe was down and to the left, the other toes normal. On the left foot four toes were bending down, the big toe in a normal position.

Sometimes when I have these spasm they have been very painful. Not too long ago I had a bad episode, and had to press my foot flat on the cooler bathroom floor for some relief. Other times, I know it's happening, but there is little to no pain.

I wonder if the fact it's been less painful is due to the medication I've been on for nerve pain. Since I started I've had less pain in my feet at night, and in my lower legs. The stabbing pain in my fingers is gone, though it seems to have moved down to my foot, at the base of my big toe.

I haven't increased the medication as the doctor had ordered. And, yes, I know self medicating is not smart, but I can't afford to increase the dosage if it would increase my dizziness and balance issues.

Had that spasm again to my feet. You'd think it would be the same on both sides, in sync so to speak, but it makes me laugh to see my toes all going in different direction.

At least I can still laugh about it all. Today at least.

Garbage Day Get Up and GO

I felt like a train wreck this morning, after the day of vacuuming yesterday, barely made it to the bathroom and back to bed for a little more sleep.

But it's Monday, garbage day, so I had to get up. I gathered the bags of recycling, the 'wet' garbage, found my shoes and cane and opened the door. The first few steps were hesitant, but then it got easier, the further I went.

It's  a beautiful sunny day out there. I looked at my garden with the thriving Hostas, my pots not so healthy.

As busy as I've been the last couple of weeks, the watering has been hit and miss. I lost one, not from a lack of water, but from over watering. Apparently there was a piece of plastic in the bottom of the pot that would not let the water drain, and as this pot was in a position to get the rain, the roots were soaked and rotten.

I need to replace it, as I miss the color.

My neighbor just visited, a catch up from the weekend. It's one of the nicest things about living here, neighbors who visit and watch out for each other.

Maybe I'll be up for a little walk later, to the common room, to do my laundry. Now that is the one downfall here, especially in winter. But like life, you have to balance the good with the bad, and hope the good comes out ahead.

Hating Housework

We're a week and a day since my daughter's supposedly surprise party, and I had hoped to get back to a more normal and less stressful, less anxiety driven week.

It started out on Monday with an out of town trip to meet one of my oldest friends for lunch. This is something we'd hoped to do on a more regular basis but it just hasn't happened. I managed to get through a side trip to Michael's, the craft store, as it's been awhile and I needed the fix.

There was a dinner at the restaurant for family that night as it was her actual birthday, and I got through that, my energy draining quickly and knew I was going to crash once I got home.

The next day I drove out of town to pick up two of my grandchildren, as their parents were working. Thank goodness for the internet, though I really don't approve of that as a babysitter, any more than I liked using television in my day. We had lunch on our way back to my place, and a stop at the store, thinking ahead as I had slave labor to carry stuff.

I set my granddaughter up to do a craft, painting rocks, while my grandson played on his tablet.

The next day my daughter dropped over. By Thursday it was lock the doors, and pull the covers over my head as I needed some recovery time. I basically slept off and on for the whole day

Friday would have been the same but I'd promised a trip out to my son's to check on the kittens as they were away.

I had managed no housework over the past two weeks, to stressed and worn out with party preparations, so decided I would clean at least the bathroom before i went to check on the cats.

Saturday I was given a chance to spend time with another granddaughter and we did craft stuff all afternoon, and when she left I was done in, but had stuff now to pick up and cleaning to be done. I decided I would do it Sunday.

Finally, I have the vacuuming done, though not a perfect job, better than it was. I could only do a small section at a time, (I mean small as I have a studio type apartment), before I had to lie down because of back pain. Three applications of analgesic balm, two doses of Tylenol and about four short lie downs and it's done. And I am exhausted.

I see the dust on the shelves, but that will have to wait for another day, my body'd had all it can take. I wanted to nap, but as I skipped lunch I was afraid I'd sleep through dinner. It's in the oven and the timer had gone, so it's dinner and back to lying down.

Please can tomorrow be a quiet day.

No More Crazy

I had to put aside that episode on Wednesday and carry on, too many things to do.

It's my daughter's birthday today, but the big party was Saturday, and I was doing decorations, the ice cream cake and making a salad.

The long naps became a habit and left me with sleepless nights, which of course lead to fatigue filled days. But on a positive note, I stayed rooted in the here and now, and did not skip a day, though all day Friday I thought it was Saturday.

The party was fun, lots of visiting with friends, the kids running around being kids and good food to top it all off.

Happy Birthday to my first born, my daughter, here's wishing you all the best life has to offer.

What's Going On?

Let me say first off that it's been a very emotional and physically wearing few days. I've been out, and busy every day, in the hot weather and that doesn't help. As I got in the car the last time today I had difficulty lifting my leg up to get in the car and could feel a weakness in my legs. I knew I wouldn't be able to walk much farther.

I don't remember much of coming home, except I needed to lie down, which I obviously did, and really crashed.

When I woke up I was totally disoriented, saw the clock said 5:40 and thought, wow, did I ever sleep, thinking it was morning. I leaned over and grabbed my medication container and took the A.M. dose and got up to the bathroom.

I felt fairly awake, and the TV was on, so I decided to watch something and maybe fall back asleep. That was when I first realized that it was not morning. I guess the fact I was fully dressed, the drapes were open and the TV was on wasn't enough.

I wondered, as I went through the channel listings, when they'd changed their shows, as I was seeing shows not normally available at 5 in the morning. Noticed the time on the channel listings was 5-6 PM and finally got a clue.

Boy, those deep, hard sleeps that come from overdoing can be tough. I don't think I've ever woken from one quite as disoriented as today. The second dose of my daily meds shouldn't be a problem and I can laugh now at how silly I was.

Looking forward to tomorrow, and nothing to do.

First Week Completed

I made it through the first week of the new medication, the one for nerve pain. Has it helped? I'd say yes...except...I have some dizziness that means I have to move slow, no sudden changes, especially if turning or bending down.

I was to double the dose yesterday, but decided to take some caution. I doubled the evening dose, and kept the day time dose the same. That way, if I'm busy, going out, driving whatever, I'll not be risking things by having my balance off even more.

Had the eye teat for peripheral vision, have to repeat the right eye again, same as last year. Maybe it takes me that long to get the gist of it. I feel like I'm in an arcade shooting the ducks, except there's a brain delay between what I see and when my brain recognizes it. I always felt like I was a step behind.

Left eye was good. If I lose the peripheral is my driving license in jeopardy? Time will tell.

Six Days and Counting

I have been on the new medication for nerve pain now for six days, and need to assess, as the dosage is to be doubled on day eight.

I admit I start new meds with caution now after that bout of vertigo. This time, not vertigo, but the dizziness, blurred vision and fatigue, as the drug information sheet predicted. I've managed the increased dizziness, but then I was home and not walking far. The blurred vision was not so bad, I could still read.

Out yesterday for groceries, and it was my usual back pain that did me in, so I could barely walk. Being able to sit for a few minutes helps, but shopping with the walker when I need a cart doesn't work.

Do I feel better is the question. Can I say there has been a reduction in pain?

As this new drug also is prescribed for fibromyalgia, another of my ailments, I'm thinking there might be a lessening in the weird niggly pains that are constant and annoying. At night. I don't feel the pain in my feet the same, the odd sensation in my toes that are numb. And I do think that the late day pain that runs down my legs has changed, for the better.

I guess I will try the increase, but will wait until I have a few days at home in case I get vertigo or unmanageable dizziness.

Today it's a visit to the eye doctor, a special test for peripheral vision. Apparently a loss in peripheral vision can be a problem for MS patients. I'm glad my doctor is proactive on things like this.

Day by day, after all, that's how it come, one day at a time.

New Medication, Again

So, there were the two new drugs I was prescribed for my pain, one for the arthritic pain, and one for the nerve pain. The doctor wanted me to try the arthritic one for a week first, in case of side effects.

Smart doctor I have, I had a bad case of vertigo after three days and quit the drug,

I have balance issues related to my MS, but this vertigo was something very different. This left me reluctant to try again, but finally the doctor suggested we forget the arthritic med for now, but go with the nerve pain medication instead.

This may be because of new symptoms again. This pain I've experienced when I press my right foot on the break, to change gear. It's happened three times, and then there was the very, very painful cramp, charley horse, whatever I got in my right calf when I reached out with my leg. Wow, don't want that again.

Yesterday, I started the new med, twice a day dosing. So far, so good. About to start day two.

I can't say I feel good, been a long time since that happened, and the rain doesn't help my pain, so I guess it's wait and see.

I hate that new meds always have the same side effects...dizziness and fatigue. Like I don't battle with that every day.

I want the pill that does not constipate, does not make you gain weight, and does not increase the symptoms of MS I already experience. Not going to happen.

No More Sitting on the Fence

I have not been the most proactive person regarding my health. I have been indecisive about the new meds and have avoided making a decision. My bad.

At the same time, I am experiencing a new symptom. The first time it happened I thought it was a one time thing, but unfortunately not. Now I need to pay more attention. be aware of what might be a cause, or a trigger.

I was in the car, put it in gear, my foot on the brake and I experienced the worst pain, cramp, spasm? in my foot. I couldn't move, couldn't drive because I couldn't put any pressure on the brake. It passed after a few minutes, and I moved on.

Now, looking back, I'm trying to remember where I was, what I'd been doing.As that kind of movement to my foot only happens when I put the pressure on the brake, the only thing I'd done immediately before was walk.

Last night in bed, I reached out with  my right (same) foot to push the dehumidifier away and experienced the worst pain in my calf. I was overwhelmed with the pain, managed to get out of bed and, with some difficulty, able to press my foot flat on the floor until the pain eased.

The rest of the night I was afraid to move, afraid the pain would come back, but fortunately for me...it didn't.

Is this a nerve pain, if so, I better get my ass in gear, call my doctor tomorrow and make a decision on those new prescriptions. I had the bad side effect from the 1st one, a NSAID, and never started the 2nd for neuropathic pain.

Seems I'm going to have to take charge, finally.

Making Decisions

I'm in a quandry, do I give that new medication another try, and risk another episode of vertigo. or go to a similar drug that I've used before?

I felt so good for those few days, I was tempted to try again, but have now decided not to take the chance.

I had lunch with my daughter today, and realize I need to be proactive in my health care. Apparently my one granddaughter said something to her sister about my falling (during my vertigo episode), and they were both upset and worried. That led to the discussion at lunch as to the fact that they have never seen me well. As long as they have been born I have been gradually deteriorating.

I've consistently put the effort out to give them things to remember me by, the crocheted items, scrapbooks and their cookbooks. But the one thing they need from me now is time.

If I start to take better care of myself, I'll have more quality time with them.

I know the feelings I have for my grandmother, and if they feel the least bit like that, I need to be strong. Lord knows I love them all.

Update

Well, it's been four days off the new medication, and no more vertigo, thank goodness. My pain has been manageable, but I miss those three days when it was better, when I felt an uplifting of my mood, and was looking forward to more activity.

I think the weeks I spent in the Pain Management Workshop last year is worth a repeat. Maybe I'll not feel like such a failure and will try the other one, Living with a Chronic Illness.

It's easy to give in to the pain, when everything is a struggle. My neighbor and I commiserate with each other, but it is still depressing that she has just had her 90th birthday and walks all over town. Some days I find walking to the bathroom too painful.

It doesn't help that I'm losing upper body strength, and find holding my head up extremely fatiguing. I push through the standing, walking, sitting with no support, enough to get the groceries and family events. But pushing through has a cost.

I was on a different NSAID for over fifteen years, been off it for years, but will contact my doctor and see if I can try it again. I'm leery of giving the new prescription another try, even at a lower dosage.

Whatever works.

Vertigo

First off, I'd like to apologize to anyone who has suffered from vertigo, because I may not have been as understanding or empathetic as I could have been. I have balance issues with my MS, have to be touching something to stay steady, can't look up, can't be in the dark, but none of that compares to the vertigo I suffered when I woke up this morning.

I woke up and stood at the side of the bed to judge the pain, which has been much better since the new med. When I took my first step I was all over the place, slammed into the door frame of the bathroom, hit the wall and basically fell onto the toilet. What the hell was that, I wondered.

Didn't get any better so I spent most of the morning in bed, finally getting up so I could get something to eat to take my medication. Wondering if this could be the new pill, as opposed to a new MS symptom, I called the pharmacist. It is a possible side effect of the new med, so I didn't take it today to see if the vertigo goes away.

I feel somewhat better, though that's not saying much considering where I started the day. Not wanting to spend the day in bed I've been trying to sit up for awhile, and so far so good, until I stand and move.

It's been like standing on the deck of a ship in a storm, with rolling waves. At times I feel a little seasick.

My ankle still hurts from this morning, so maybe I gave it a bad landing in addition to hitting the door. And my elbow aches, so maybe I hit it too. I guess I'm feeling more pain, because I've not taken any pain relievers.

Tomorrow should be interesting. Will this be gone and I can say it's the medication, or an I being given another challenge with this miserable disease? Only time will tell.

Dem Bones, Dem Bones

Yesterday was day 2 on the new medication. I felt I had a bit more energy, and was moving around better.

I even managed to get the fairy lights attached to my black metal plant stand, with a lot of bending and reaching. I hate when I can hear the bones in my knee rub, and worried about the pain I would feel as a result, but there was none.

Today, I'm still moving better than usual, and pain is mild, a change for me.

My wrist aches, and is bothersome, but that may be my own fault for not sleeping with a brace on, to keep it straight.

I've taken today's pill, and am sitting here, upright, as directed. I'm not to lie down for at least a half hour after, in case of reflux I guess.

The sun is shining, the skies are blue, and my pain is being managed. Seems like it's a good day.

New Meds

I've been feeling down, the pain getting to me, along with the rain and miserable chilly damp weather.

I saw my doctor yesterday, and have two new prescriptions. One is a NSAID, a non-steroidal anti-inflammatory drug, a new one for me as I spent more than 10 years on Naprosyn, for the joint pain that has plagued me since my twenties.

Between the usual, my usual, MS symptoms, and the pain, it's been a rough year so far. My fatigue is so bad, I'm the Queen of Naps, an expert at the afternoon snooze. Does the pain make the fatigue worse, I'd say yes, as activity is a struggle.

The second medication I'm going to try is for nerve pain. That's very definitely related to the MS. I have pain running down the outside of my legs, numbness in my feet and stabbing pins and needles in my right thigh. Then there's the sharp stabbing pain in my fingertips...all nerve related.

So, I've taken the one new medication this morning, and am awaiting the results though the paper explaining the drug says it needs two weeks for full effect.

Today should have been a crash day, after driving out of town to the doctor, waiting for the prescriptions, shopping for a few groceries, but I feel surprisingly good. I've been on my computer, have walked out to water my plants and have the dishes done, almost as the last pan is still soaking.

We'll just have to wait and see. Here's hoping.

In my Garden

My daughter and her husband took me to Canadian Tire today to get the mulch for my garden and the last of the plants I needed. I do so love the slave labor.

As I was not up to walking too far today I used the walker so I could sit when needed. Back home I sat on the grass and watched my son-in-law spread the mulch while my daughter planted the last of the plants. It was great to have the help to get a few things done that would tax my energy and cause me pain.

 I was sitting in the walker on the grass and streaming out the fairy lights as my son-in-law attached them to the trio of trellises against the wall. I pushed the walker back a bit, and suddenly felt myself falling backward. Luckily for me I was able to stand, if I had fallen back I would have smashed my head on the concrete sidewalk behind me.

The bruise I have on my shin from earlier moving the patio chair is all the injury I need for today. I had a close call, but a beautiful garden.

Annual MS Walk

This is the 4th year that my wonderful family gathered to make the MS Walk. It was a dull and dreary day, rainy and wet but that didn't dampen our spirits.

I picked the little ones up at the half way point, and took them to the school, the meeting point. There we listened to music as we waited for the gang to arrive. We had lunch and took part in the usual festivities...the silent auction, the awards. We won the award for most spirited team, which we can add to our awards from previous years, team name and team costume.

We wear neon green T-shirts as of year 2. The next year we added baseball type caps, in black with a neon green brim. I also made name tags, the ones in plastic covers you can hang around your neck, in, of course, neon. I did each person's name in a different font and added the team name on the back. I figured we could add the years as we went along.

I found some neon green mitts for the kids, which were a welcome item this year as it was cold and damp.

Not sure what to add next year, shoe laces maybe, or scarves.

I don't know if the family realizes how important this day is for me. It is like Christmas, only I get the big gift. I love seeing the team picture every year, and find it amazing to see the changes in the grandkids.

This year I saw a woman in an electric wheelchair, totally dependent. She was there with her helper, and for the first time, it bothered me. I felt a sense of fear and dread, could that be me, and how soon? I guess it hit me worse this year because I struggle more every day, can feel this downward spiral I've been on the last few years.

I have given up more and more, so I want to hold on tight to what I can do. I fear the day when I can no longer be creative, and am not sure what I will do when that day comes.

Didn't want to put a damper on the good mood, but I need to be honest with myself. "It is what it is".

Pain, the Cost of Doing

I was out on Sunday, had a great dinner (barbecued steak) and a visit with friends and family. Before I left home I did a quick cleanup with my new vacuum, did the dishes and put stuff away. Then I had a little nap before I had the energy to shower and get dressed.

My granddaughter called later, asking when I was coming, and it was a good thing because I was resting and would probably have gone deep asleep and been late for dinner.

It was a good day and I drove home, tired but happy. It was a bit of a struggle walking from the car to my place, but I made it and immediately got ready for bed so I could lie down and put my feet up.

Anytime I have to sit with no back support I feel the fatigue, and the potential for increased pain in my neck and back. So I need to lie down, rest my head. That night I napped in the evening, and was asleep much earlier than usual.

The next day I was in such pain with my back I had trouble walking, so back to bed. I was up long enough to get the garbage out, but that was all I could manage.

I was up and about for short periods only, napped off and on all day, through the evening and slept until 4 A.M. the next morning. I was coming out of the resulting pain and fatigue cycle and read for a while, slept, then was ready to face the day.

It was actually a productive day, in that I had a visit with my friend, and finished a craft project. But the use of tools put a strain on my neck so it was early to bed. I crocheted and read, and all was well.

This is the way my life goes, for every day of activity, there's a cost paid in increased pain and fatigue, lost time. But, in the long run, it's worth the price as I got to spend time with family and am still mobile, able to do that.

I know the day will come when I'm not able to walk, won't be driving, and may lose my independence, but that day is not today.

Friendship

Friendship is a strange and wonderful thing. The one friend I spend the most time with turns 90 this year, and she is fit and very active. She goes to a bid euchre group three times a week, attends an exercise class and has dinner at the church each week.

Our friendship came about when I moved in across from her, and she happened to quit driving and gave up her car. I got her prime parking spot, and as I was struggling to walk, had the walker, life became so much easier for me when I could park closer. In appreciation, I started taking her with me when I went shopping, and made those trips to the grocery store, Dollarama and Walmart. That stretched out to casual get togethers.

She replaced, in a way, the neighbor I had at my other place. She was also in her eighties, and we often got together, her place or mine, made out of town shopping trips and such. Sometimes, when you live alone, it's just nice to have a few minutes of conversation.

My daughter laughs at me and jokes about my 'old lady' friends. But here's the thing, they are more at my level of activity. One night, a few years ago, my friend and I were leaving the restaurant after having dinner. I was walking with a cane and struggling with pain and fatigue after sitting. She was walking with ease. I asked her what was wrong with this picture, as she's older, gray haired, and having no problem, and I was younger and having much difficulty.

I had other friends more my age, but they've fallen by the wayside. They don't call, they don't write. That comment was a bit smart ass, couldn't resist.

I had one friend, and we enjoyed day trips, checking out the countryside, stopping for lunch, shopping in some of those unique little shops we'd find along our way. The first summer we missed doing this, it was because it was so hot, and hot weather is not my friend. We continued to have hot summers and have never made a trip since. There are other seasons, but people move on.

I know friendship is a two way street, you have to be a friend, to keep a friend. But, I have a problem with my increasing issues of limited mobility, increasing pain and fatigue, that I not be a burden. I need those friends to want to spend time with me, even if it's just an hour over coffee at my place because I'm too tired to get dressed to go out.

I hate when someone says 'call me', because my calendar is open and free, they are one's who are busy. I think they should call me when they have some free time. I know that sounds a little 'woe is me' but I hate when I do call and they are busy and it's a 'call me next week' kind of thing.

I recently cancelled on lunch out of town with my brother because I didn't feel up to the out of town drive, sitting for hours and driving home. He didn't let me cancel, but drove all the extra miles to take me out for lunch here. That's a good brother and a true friend. I don't know if he really understands how much that meant to me.

Those are the friends who matter, who recognize that even though I've changed physically, I'm still me. Those are the friends worth their weight in gold.

Lost and Found

I lost something yesterday, something that was ridiculous for me to have lost, and yet...I couldn't find it.

I keep my pills in a seven day container. Each day of the week has four compartments, for each meal and bedtime. I fill the compartments with daily doses, to be taken whenever. The section for each day can be lifted out of the whole, and I set it by my chair as a reminder to take them. When it's empty, I put it back in its daily slot, and refill the whole thing once a week.

Yesterday, I went to take out the designated day, and there was no empty container for the previous day. I looked by my chair, on the kitchen counter, on the microwave where I keep the container, even under it in case it had been pushed aside and out of sight.

I could not find it anywhere. Strange, as where could I possibly have put it? I wondered if, when picking up, I had inadvertently dropped it in the recycling with the papers, but it wasn't on the top and I didn't feel like looking further.

I hate when something like this happens, when I can't find something that should be easily located. It is so easy for me to doubt myself when something stupid, maybe silly, like this happens.

I found it later, in the last place I would have looked.

I have a second seven day pill container, that has just one slot for each day. Those pills have to be taken early on an empty stomach, so I keep it in the drawer by my bed. I saw the container on the top of the bedside table and when I went to put it in the drawer, found my empty daily dispenser.

What was lost is found, and I'm not losing my mind, well, not entirely. A simple mistake I guess, but I feel better about knowing where things are. Mystery solved.

Activity VS Fatigue

I just realized how long it's been since I posted. I have created many posts in my head, as I lay in my bed, and like so many other things I want and hope to do, they never get done.

The fatigue that is a common complaint with MS has been particularly bad for me in the past few months. The other day I swear I was up and active for only six hours of the day. I had a late nap that lasted hours and left me feeling dopey and dragging for the evening.

Today I got up with good intentions. After a look in the mirror, my hair standing out all over the place, I knew I a shower was first on my 'to do' list.

The thing is, my back was aching, and I was having trouble walking and standing. I pushed on and got in the shower, finished and stepped out and right to the toilet to sit, tired out and in pain. I toweled off, applied the cream as my skin is so dry and it was back to bed. I was played out, so tired, worn out, and it was just after nine in the morning.

An hour or so later I was up, as I needed to get something to eat so I could take my medication that has to be taken with food. As I ate I checked my E-mail, Facebook and decided to write this blog post.

My head feels fuzzy, and I need to lie down again as I feel too tired and can't hold my head up any longer. But I have opened my curtains to the sun, let my neighbors know I'm still alive in here, so that's progress.

But, I feel a nap coming on and it's not even noon. I may not sleep this time, might read or crochet, but sitting is just to tiring and the position puts pressure on my knee so increases my pain. I need to lie down, straighten out my knee, support my head and upper body.

Maybe later I'll find the energy to go out and enjoy this spring day, which will result in another nap and a recovery day tomorrow. Such is my life, but what other choice do I have? And those times I get out and see friends and family, they make the crash days all worth it.

On Being a Hermit

I have been accused of being a hermit, because I like to stay home and don't go out unless I have to, or it's some family thing. I like the weekly soccer games for my granddaughter, because we have a visit first, and I get driven to and from the game. It makes my life so much easier.

I get to the store when I need groceries or a prescription filled, and think next winter I may make use of delivery services offered in town.

I realized just of late, why I like being home. Okay, some of that is that being creative is a solitary process, but the other is that I feel better at home.

I use the cane when I'm out, but after a short walking distance, am in such pain that walking is a struggle. I get tired, need to sit and there isn't always a spot to sit, so I lean on counters, whatever is handy. I look ungainly, and feel awkward. I should use the walker when I'm out, but it doesn't work when you use a cart in a store.

At home I walk about without the cane, and manage quite well, because I can sit when I need to, or even lie down for a short period. I do things in steps, with rest periods. Small chores take me days, like dusting or vacuuming, even dishes, and I can accept that as I have no one to answer to but myself.

So, I guess I am a bit of a hermit, but now I understand that at home is where I feel the most like me, and not that person struggling with a chronic illness. And isn't it fortunate for me that I have plenty of things I like to do...painting, reading, writing, crochet...to fill my day.

I have always been a bit of a loner, but people didn't notice as much when I lived a regular life of work and family, and now that look at that as a negative, when I think it's a positive. If I didn't have my hobbies, the pain and struggle of MS would defeat me.

It is what it is.

Winter Blahs, Spring is Near

I can't believe it's been more than a month since I posted. The winter is always a rough time for me, but then, when isn't it when you have a chronic illness.

I haven't felt as well of late, the fatigue at times overwhelming that I spend the majority of my time in bed. Deal with it, I tell myself and try to get the things done I need to do, but that eliminates so many other things.

Last week I was to have lunch with my brother, which meant a long drive, followed by a long lunch. As much as I love these trips into the city, the time with my brother, the opportunity to shop, sometimes I can't face even the walk across the parking lot to my car.

My brother, the best brother ever, came to me instead, and we had a visit, and lunch out. I so appreciate his effort, and the gifts.

It was a busy week, (my birthday), so I had another dinner out and some company. By Friday I was done and slept, off and on, for like eighteen hours. Felt like I'd lost a day and couldn't keep my calendar straight.

Apparently my favorite saying is "It is what it is" and I have a beautiful plaque to prove it. I think that sums up things for me, this is my life and I have to make the best of it, keeping fighting through the pain and the fatigue, or risk missing out on the good life has to offer.

And, it doesn't hurt to have some help along the way.

Sleeping Patterns

I rarely sleep more than a few hours at a time, and frequently suffer from insomnia. It was suggested at one time that I might have sleep apnea, and I had to laugh.

I have a friend who went through the sleep study and does indeed have sleep apnea. They told her the number of times she moved during the night, and the number of times she quit breathing, and I was astounded. She now wears a machine at night to regulate her breathing, and sleeps much better.

When I go to sleep, I settle in on one side, and when I wake a few hours later, I'm in the exact same position. I turn over and go back to sleep, and again, don't move at all until I wake again.

Is it any wonder I wake up with aches and pains?

Today, it's my left elbow that just aches and throbs. I assume it's because of the position it was in for the last few hours, as I haven't done any lifting or such to irritate the joint.

This is just the way it goes, one morning it might be the elbow, another my back, or a hip or shoulder. I never know, but the one thing that's a guarantee, is I will wake with pain, of a varying degree of severity.

It's no wonder I am not a morning person.It takes a few hours to get me moving to where I can consider going out, or getting anything accomplished.

Add on the worsening MS fatigue and it's frustrating. My mind has all these ideas, but the body is too tired to consider it or to make the effort.

Little by little, I'll get things done...'cause my mind never quits.

Memory Glitches

The cognitive issues with MS are very complicated, as is anything related to the brain.

I can see something I know I should know, and be totally confused. Like this week, I was typing in my grandson's name, and knew as I looked at it that something was wrong. It seemed off to me, but how could I have made a mistake with his name, I've been writing it for 11 years.

So, I left it the way I'd written it and then today, saw the way someone else wrote it and yes, I did spell it wrong. I added a letter, sounded the same, but not spelled the same.

There are other times I have looked at something and can't understand what it means. Like the day I was driving and had a green light, and was momentarily confused as to what green meant. Lucky for me, I've never been confused with the red or yellow.

I know we ca all have moments of forgetfulness...like where are the keys, what is my postal code, you get the idea. The kind of lapses I experience are different, and I think more like what an Alzheimer's patient feels when he/she no longer recognizes what was once familiar.

Lucky for me, I have a family who understand these lapses and don't make a big deal of it. But for me, I have a hard time with these brain issues. It's hard to know and accept that you are not the same person you once were, in smarts and personality, and the real scary part, who you might become in the future.

One day at a time.

Cold Feet

https://www.verywell.com/cold-feet-and-multiple-sclerosis-2440826

I found this article about cold feet and MS.

My feet feel cold all the time, in spite of wearing heavy socks. As evening approaches my feet will be numb, and painful.

I go to bed early and lie under my electric blanket, something I got for Christmas and have only used for these weeks since the holiday. I feel it helps, but the pain I feel each night makes me constantly move my legs, and wiggle my toes.

My feet appear very white. When I could get into the tub I would have a bath before bed to warm up my feet, but the warm water actually made them hurt more.

I apply my analgesic ointment from the knees down the outside of my leg, and that seems to help, along with what I call my 'magic' blanket.

The thing is, you have to find what works for you and stick with it. Anything you can do to not let this disease suck anymore of the joy out of your life than it has to.

Sorry, that sounded pretty 'woe is me' but it's one of those pain filled days and I know I won't get any of the things I hoped to do done today.

But, hey, the sun is shining, the sky is blue, my drapes are open to enjoy the view of my neighborhood. I'm thinking spring, and avoiding any glance at the thermometer.

MS- The Subject of a Speech

How many people really like public speaking? I hear my grandchildren's dread and fear when speech time comes around at school.

This year, my 11 year old grandson did his speech on Multiple Sclerosis. I was touched that he felt an interest in my disease, enough to share with his classmates. He did his research, for the usual, cause, symptoms and treatments.

But then he talked about how the family joins together for the annual spring MS Walk. He talked about how the kids ride their bikes and I pick them up at the half way point.

This young man has learned how to help me, in all the simple ways, an arm when I go up or down a step, holding a door open. I am very proud of him, that at his age he can be this sensitive to the needs of another.

There is an element of fun to the walk that he mentioned in his speech. The first year we did this as a family, we won best team name "Debby Does MS". (Not that his classmates would get the reference, I hope). The second year we all wore neon green T-shirts. Then we added hats and name tags.

I love that after the very informative beginning to his speech, he lightened the mood talking about the fun of doing the walk. And he ended it in the best possible way, that we might meet at the walk.

Thank you, Kiddo, it means the world to me that you made MS the topic of your speech.

Love you to the moon and back.

Motion Medicine

Don't we all wish there was some magic potion that would keep us hale and hearty, mobile and independent. Alas, there is no such miracle cure or fixer-upper.

My son gave me a jar of analgesic ointment called Motion Medicine. I have come to depend on its pain relieving qualities, and as a side benefit, the smell that seems to clear the sinuses.

I have a great deal of pain in my lower legs, usually at night and worse when I have been out, walking more than usual. Some of my night pain is the numbness in my feet. After sitting with my feet down, the outer part of my foot, my toes feel like  something solid and foreign, like part of me, but not. When I lie down I have to keep wiggling my toes, to stop these weird sensations. Just like I shake my hands when they go numb.

The pain in my legs runs from my knee down the outer portion of my leg, and it keeps me from settling.

That's where the Motion Medicine comes in. I rub it down the outside of my lower leg, on my left knee if it aches, and sometimes on my shoulder. There must be something magic in that stuff because I always sleep better when I've used it.

The smell is strong, and I've learned to wash my hands with soap after (even though I'd like the pain relief for my hands) because it's a mistake to put this stuff anywhere that might touch near your eyes.

So, a big thanks to my son, for the gift that keeps on giving.

What Was I Thinking?

I went grocery shopping yesterday at 'No Frills'...a bag your own grocery store for those who are not familiar. I usually go with my daughter as, first, I hate the parking, and second, she bags my groceries and does all the heavy lifting.

I ventured out this time with my neighbor, and all went well until I was packing my groceries. I always feel such pressure to be fast, and the bags never cooperate so I end up tossing everything in with no order.

Yesterday, as I reached for the button to move the belt along, I twisted or did something to my 'bad' left knee. The pain was horrible and I needed to take the weight off of it and ended up leaning on the counter...an immediate attention getter.

I was still in pain, but able to walk home and get my groceries away in the fridge, freezer and cupboards. Then I covered my knee in this great pain relief ointment and laid down.

I'm a multi-tasker, so while I rested my knee I started a new crochet project. And here's where I went from resting to stupid.

My pattern fell between the bed and the wall. I tried to reach it and got my 'bad' left wrist wedged and had to tug to get it free. I decided to move the foot of the bed away from the wall, and managed this but still couldn't reach the pattern.

Now, I was determined, and the only solution was to move the head of the bed out from the wall. I eased the bedside table out of my way, and pulled on the bed. I felt a rip of pain immediately down my right side.

I spent an uncomfortable night, took some Tylenol, used lots of the analgesic ointment and rested under my heated blanket.

A couple of time during the night I barely made it to standing, and believe me it was a struggle to get to the bathroom. By morning I was still stiff and sore, slept in and finally forced myself to get up and moving.

A little activity goes a long way and I soon needed to rest. Now, dinner done and out of the way, I'm ready for my bed.

Downside to it all, I played with that pattern and decided I didn't like it. Should have left it behind the bed and saved myself a lot of pain and aggravation. Lesson learned.