Late Nights

Some people seem to think that because I operate best at night, I must not need that much rest.  The thing is... I rest all day.  I don't get up, usually, until at least noon, and although it is almost midnight, my adrenaline has kicked in just enough for me to operate in a semi-drunk-like state... which means although I feel more clear-headed, I am really late getting to bed!  Does anyone out there have this problem?  I guess it is just me, trying to squeeze every last moment I can out of a day already passed.  


My long term disability insurance has asked once again for proof that I am still disabled.  They want my last two years' tax returns.  I didn't send in a tax return for 2011 because I didn't pay any taxes on my disability income.  I finally got a letter in the mail from the IRS saying that I am telling the truth when I say I didn't file!  Now all I have to do is find the 2010 taxes... Ugh.  Not tonight.  Tonight, I need to brush my teeth and go to bed.  Yay!  It is not a shot night!  (I inject myself Mondays, Wednesdays, and Fridays... and not just for the fun of it!)

Too tired to be tired!

Ok, so I have paused from my story for a little bit.  Today was my last day of a three-day book sale / garage sale, and I am beat.  My housemate / caretaker did much of the running around, and my mom and my aunt were here for two days of the sale.  My dad was here today and was here to help clean up.  


Still, the excitement of the sale itself, as well as the preceding months when I worked to get ready for the sale, have completely worn me out.  I am looking forward to the next week because except for going out to dinner for my mother's 69th birthday and my father's big 70th birthday, I have absolutely nothing I must do.  Sleep will be a major factor in whatever I might decide to do!  I will get a good 12-14 hours tonight, waking up only for the bathroom, or if I am told I need to wake up long enough to eat a little, or drink something. Sleep during the day tomorrow will also be significant, with intermittent pauses for sitting in my recliner and watching a show or two.  


Fatigue hits people in many ways.  My fatigue can rob me not only of the daytime when I am sleeping, but also my ability to think clearly, to talk coherently, to remember even the simplest things (like what show I am watching), to my ability to walk, to hold things, and on and on.  


It is now way past my bedtime, and like I said, I will be asleep most of tomorrow as well, so I will continue this a dew days from now..... G'nite!

Break from Life Story with MS

Tonight, I thought I would share with you the fact that over this week, I will be spending all my spare time and energy working on getting ready for a huge book sale./ garage sale to raise money and awareness for Multiple Sclerosis.  You may not see a blog from me for at least a week due to the busy days.  Fatigue, a huge part of my life, will not let me work as long as I need to to get this all ready, so I will plug away at it, hoping I have the sense enough to take breaks or whatever when I need to do just that!

Well, wish me luck, and I will be back in a few weeks to tell you how it all went.

Multiple Sclerosis Symptoms and My Story: Part 5

After the MRI, I made my way to the hospital and was directed to the floor where I was to get the Solumedral.  It turned out that the IV was put in the back of my hand (another nerve-wracking experience for someone who hates needles) and would take an hour each day.  They had chairs for me to sit in, and I think I brought my own water bottle and a book.  I tried not to look at the IV sticking into my hand, and when the first hour was up, the nurse came in to give me a choice. I could keep the IV in my hand all three days (they had some nice, soft, gauze-like stuff to cover it), in which case I would not have to go through having them to insert it each day, or I could have them take it out, then put it in again each day.  I chose to keep it, but my stomach was turning so much having that darn thing in my hand that I turned around at the elevators and asked them to take it out.  I wanted my hand back!

It was hard to believe all that had happened, and it was only Tuesday.  I had gone to the emergency room just the Friday before.  I was shaking with stress, and felt I needed comfort and sleep.

As far as the MRI, I waited for the next appointment back at the neurologist's office, which I think was about a week later.  My mother and I were told that it showed three lesions (patches of scarred tissue, typical of MS).  The neurologist also said that optic neuritis was only one single incident of one clear symptom, and that some people never develop a second clear incident of a different symptom, so he was going to wait until a second symptom actually appeared, and until then, as far as he was concerned, I did not have Multiple Sclerosis.  

Multiple Sclerosis Symptoms and My Story: Part 4

My Introduction to a Disease Called Multiple Sclerosis

Once Monday came, I went to see my new ophthalmologist.  She did a bunch of eye things and said I had optic neuritis, and told me that is a first sign of a disease called Multiple Sclerosis.  She arranged for me to see a neurologist later that day.  (I didn't like the idea of "having something," and getting in to all these specialists meant that "something" was pretty serious.)

After seeing the neurologist, I was scheduled for a bunch of tests early the next day, including a Visual Evoked Response (VER) test.  This VER had me looking at a small tv screen with a red and white checkered background that changed, the black squares became white when the white squares became black, back and forth.  I was supposed to be staring at the little red dot in the middle.  My right eye was boring.  My left eye was fun! The black and white colors zigged and zagged across the screen, and up and down.

When I saw the neurologist after these tests, he had already scheduled me for an MRI (magnetic resonance imaging) of my head - at 3 pm that day, and for the first of three steroid (Solumedral drip) treatments - one hour each day for three days - to hopefully help me regain my sight.  More flags going up that this was serious.  And although I am not great with closed-in spaces, I told them I would be ok with a closed MRI because it would be like being in a tube, with both ends open, and just my head inside.  I was still a bit worried.  I canceled all the plans I had had that day (including going to watch a football game with a friend who was counting on me to be there), and began a journey of surprises.

The MRI, which was actually two, one without a shot of stuff that would show up as "contrast" in my brain, and one without, was nerve-wracking for someone who had no idea what to expect.  It was full of loud, pulsating whumps that changed now and then.  I was further in the tube than I thought I would be, and my head was encased in this contraption to keep it totally still.  I have always hated for my head to be held in any way, so I am not sure which was worse:  the tube,my head being held like that, or the shot of "contrast."  All contributed to unsettling my nerves, and all I really wanted after two whirlwind days, was to go home and curl up, but I knew I still had to go to the hospital for the Solumedral.  (I still didn't know what all that entailed).

Multiple Sclerosis Symptoms and My Story: Part 3

There were more, less notable instances when MS showed up in my life, and my legs have never been "my legs" since 1980, but it wasn't until 2002 that MS was considered a possibility by doctors.  I was working as a bindery and delivery person for a locally owned printing company.  I woke up one morning, and my left eye was a little foggy, and felt kind of "gummy."  That happens to a lot of people, and had happened to me before, so I was not worried.  I knew that as I woke up, and blinked a bit to clear my sight, things would return to normal.  They didn't.  I called, at the insistence of a friend, and made an appointment for that Friday with my doctor.  Over that week, the sight in that eye deteriorated until it was like I had stuffed a wad of cotton in my eye.  It still felt weird, and I couldn't really see.

Friday came around and I was glad I had my appointment, but still not overly concerned.  That morning I got a call from my doctor's office.  He refused to see me, and had cancelled my appointment.  Instead, he told me to go to the emergency room.  I was more angry than anything.  Why should I pay to go to an emergency room when I had had a perfectly good appointment scheduled with him all week?  Seriously.  And why now, if he was so "concerned," instead of calling sometime earlier in the week?  A "real doctor" who had concern for a patient would have made time for that patient as early as possible, not send the patient so some unknown doctor.  At least that was my thought.  (Anyone living in the Olympia, Washington area who wants to know this doctor's name, please comment and I will share.)

I waited until the end of my workday instead of becoming alarmed after a week of waiting for my doctor appointment.  Once I was able to be seen by one of the emergency room doctors, he told me he couldn't see anything wrong with my eye, but thought I should go in to see an ophthalmologist.  I was okay with that, but as it was Friday evening, around 6:30-7:00 pm, I was very surprised when he came in with a business card, and on the back of it was the name of the ophthalmologist I was to see, and the appointment already made for 9 am on Monday morning.  Ok, so this guy did see something, and was concerned.  I had all weekend to wonder what, but I still figured I would find out in time, and that was that.

Multiple Sclerosis Symptoms and My Story: Part 2

In the 1994 or 1995, I suffered a bout with extreme dizziness and vertigo.  I was driving a tour bus at the time, and according to my eyes, the road lifted up and began to swerve back and forth as it rolled up and down.  I felt I would fall out of my seat, and each motion I made to turn my head to the side mirrors, or to speak to the few passengers on board, left me feeling worse.  Fortunately, I had another motorcoach following me, and I radioed back to that driver. I told her what was happening, and that if I were to start weaving or showed any signs of dangerous driving, she needed to radio to me and have me stop.  Meanwhile, if I kept my eyes on the road, and did some deep breathing, I felt well enough to get these passengers safely to their destination, just a mile or two away.

I didn't realize how upset I was until I got back to the bus yard and yelled at the dispatcher.  I thought I had just been not feeling well, and accused her of sending me out when she knew better.  (Later, I apologized to her, because almost as soon as the accusations came out, I knew it wasn't her fault.  I was just too spent from the trip, and emotionally, I had to blame someone at the time.)  Once again, the doctors could not find anything wrong with me, and in the end, called it "unknown allergies."  I was put on Meclizine, which has the caution of not driving heavy machinery.  I was put on bus-washing duty for a few weeks, while I took the medication that helped me be "normal."

Again, because of my extensive research on the topic, I know now that this was another flare-up of my MS.

Multiple Sclerosis Symptoms and My Story: Part 1

I have been writing long enough now, I thought a bit of my story is in order.  This will come in several little "chapters, so this is chapter 1.


I look at my life with Multiple Sclerosis and before.  Ok, before I was diagnosed (dx) not necessarily before MS became a part of my life.  There are some thoughts that strike me regarding Multiple Sclerosis Symptoms.

First, that wonderful phrase almost everyone hears at one time or another:  "But you look so good!"

Ok, so much of MS is invisible.  The pain.  The muscle spasms.  Forgetting words, or at times, whole conversations, or even where you are or where you are going.  I read a lot, and if it doesn't seem very pertinent, I forget that, too. Bladder and bowl issues.  (Those of us who have yet to experience such issues breath a sigh of cautious relief here.)  Strange sensations such as a burning sensation, tingling, pins and needles, and more.  Facial pain.  Numbness.  Muscle weakness.  And the list goes on.

My first symptom, the one we can trace back to sometime in 1980 (I have a little finger dyslexia, whereas I used to be a pretty good typist - I typed here we would trace back to 1080, and I am certain I am not THAT old!)  Anyway, that was when my legs started feeling a little wooden, like they were not mine.  I think it was a year or so later, I actually asked a friend of mine, who was the track coach, to watch me run.  She said I didn't bend my knees the way I should when I run.  I practiced high-stepping and jogging while concentrating on lifting my knees, but it just wore me out.  I figured there was something "not right," but left it at that.  Doctors could not find anything wrong, and when my knees (first one, then years later) began to be so painful I could not walk, I went to several doctors and specialists, all of whom diagnosed something different.  The last one put me in a leg brace and on crutches (one knee was acting up at this time), and gave me some exercises I dutifully practiced.  After six weeks and another set of x-rays, he said to me, "Well, it doesn't look any different.  Does it feel any different?"  I told him yes.  It was stiff and weak.

Well, after extensive research on the topic, now I know better.  This was the true beginning of my MS.

Summer Is Coming! Ups and Downs...

Ok, so today we saw a warm day.  The thermometer here at our house hit 77 degrees.  Too hot for me, but encouraging all the same.  I am so excited about the garden!  Garlic I planted last year or the year before is up and enthusiastic.  In fact, it has been up for months, and I am just waiting for it to be ready to pull.  The beans, carrots, and onions are just showing, and I am hoping the weather will turn nice enough to encourage the little plants to grow.  Our strawberries are in their third season.  The plants themselves are overflowing the garden they are in (all of my gardens are raised-bed gardens).  I haven't seen many blossoms, but am hopeful!

We also have a beautiful (unplanned) bunch of blackberry vines growing along and onto our front porch. I figure, why wrestle with it now, when we could enjoy fresh blackberries, practically delivered to our front door!  Besides, we don't use the front door often anyway.  LOL

So, what does all this have to do with my life with Multiple Sclerosis?  We have to look for positives wherever we can, especially when we have days that are frustrating, when we are struggling with depression.  Summer is, of course, a time when life seems brighter as the days get longer, the flowers are blooming, and we feel more energetic.  It is also a time when I am more affected by heat, unable to go outside, even on my "good days" when I have more energy.  I want so much to feel the sun on my skin... maybe collect a little vitamin D naturally, while perhaps getting a little "color" (I don't tan, I just get enough color to fade my "glow-in-the-dark" skin!).

The heat makes me more tired, and I find myself needing to sleep extra hours, while not wanting to "waste" all the sunshine.  So, my excitement about summer is kind of a double-edged sword.  It won't be cold, wet, and gray out, which tends to help bring my mood down when things are not going well for me.  At the same time, even though the sun is out and everything is so beautiful that it is harder for my mood to be brought down, it may also get too warm for me to do the things I want, like water my plants, many of which are in pots.  (Usually, I have to go out at dusk to start watering, and that takes hours!  It wouldn't be so bad if it weren't for the fact that the mosquitoes LOVE me!)  It is frustrating to sleep one's sunny days away!

One coping mechanism I have found that tends to do me worlds of good is, believe it or not, when I am out and getting overheated, water my head down with water from our hose that is hooked directly to our well.  Boy is that water cold!  The first time we did this to me, I was in Portland with my caretaker/friend, and we were walking around some sort of celebration where they had booths for food and drink, as well as booths selling other items.  As we walked, she noticed I was getting more and more tired, and could hardly drag my feet along.  She bought water for us both, and although that helped, she figured I was getting overheated.  She went to get a big cup of ice water.  I was sitting on a bench when she came back, told me she was going to cool me off, and told me to take off my baseball cap and lean forward.  She actually poured that ice water, ice and all, over the back of my head!  Darned if it didn't do the trick!  After gasping a little, I rubbed the water through my hair a bit (I have short hair), and got up from the bench, re-energized.  Ever since then when I begin to feel a bit sluggish due to heat, I go put my head in a sink under cold water, or use the cold water from a hose.  It doesn't matter where I am, and when people look at me quizzically, as people will do, I just explain that with my MS, I have to do this to continue functioning in warm weather.  I get more smiles than anything.

So, for those of you with problems with heat, try dipping your head in cold water.  Sure, short hair is easier, but not an absolute must.  Don't be shy.  Don't be vain.  Instead, just remind yourself you are being PROACTIVE!

DOING BATTLE WITH FATIGUE...

Doing battle with fatigue is not really what it is about.  It is doing battle with myself.  I am a doer.  I see a nice day, I want to go out and work in the yard.  But no.  If I do go out, I will be bedridden for a couple more days.  If I sit and be good for a few more days. I can do more later.  I hate fatigue!!  But tonight, I am too tired to complain about it any more.  ;-)

Instead, I will ask, does your pain get worse when you are fatigued, or does you fatigue get worse when you are in pain?  No, this is not a "chicken or the egg" question.  For some, the answer is yes for both.  For others, it is yes for one and no for the other.  I am curious.

Late night leading to an early morning...

Just a quick one here.  I learned, a few days ago, that a friend of mine passed away.  It may sound kind of funny, but he was my pharmacist.  He was a really big man.  In so many ways.  But physically, he was about 6'3", with such a big bone structure that his hands made my hands look like a child's hands.  He filled the pharmacy in a way that made everyone a friend.  He welcomed people by name.  When I would go get my prescriptions filled, he always came out to hold my hand.  Once, he saw what I had been prescribed and took the time to look up all the information in the evening, at home, because he knew what else I was taking and this was an oddball prescription to be thrown in the mix.  He was truly one of a kind, in this day and age, especially.

Tomorrow, I am going to his funeral.  They are calling it a Celebration of his Life, but really, it is for us to say goodbye.  I am not really looking forward to it, but I am toying with the idea of getting up to speak for all of us who were under his care before he lost his battle with cancer.  Wish me well, and know the world lost a gentle, kind, comforting soul.