Dianne's Story
A personal MS journey
It's been a wonderful family holiday in Ontario, and now I’m
winging my way back to B.C. This flight is a trip in itself.
Here I am dreading the fact that I’ll be spending all my
time at home alone—with Bruce in a brand new career, he’s
working day and night—and the young woman sitting next
to me is afraid to fly. So I’m holding her hand, telling
her that everything is going to be all right. She is really scared,
shaking even, and keeps crying and wiping her face. I’m
missing my parents and don’t know where I belong, and I’m
comforting a stranger. Strange.
* * *
At home now and I'm feeling down in the dumps and a little
flu-like. Just not right. Maybe I caught something on the plane.
I took a little shopping trip, although I really must be coming
down with something, my arms feel so weak; shopping wasn’t
the greatest.
I like writing in this journal—Bruce's mom got it for
me for Christmas—I look forward to it, and it doesn't have
to be all the time, just when I want to. It’s been a couple
of days now since I got home and I’m still feeling funny,
really weak. I've got to start back to work tomorrow so I hope
I'm feeling better.
* * *
I go to work but I'm getting worried—I'm not just weak,
I feel like I'm going to fall over. I explain to Bill I must
be coming down with something, but I'm never sick. I mention
to Jane that maybe I should go home, but she suggests that I
just relax on my lunch break, that I'll feel better. So I go
next door to the lunchroom, have something to eat and put my
head down for a while.
The rest did nothing for me. I'm feeling worse. I'm never sick!
I run into Dr. A. and ask him about my symptoms. Could it be
an inner ear infection making me feel so weird? Maybe, but he
can't see anything when he takes a quick look. It's probably
a virus that will have to run its course. Or is it MS? Why did
that pop into my mind? I don’t even know what MS is. I
ask him and he just laughs and says I'll feel better tomorrow.
I just scared the hell out of myself. What is MS? What are the
symptoms?
But I do know where that thought came from. Last November I
put my back out playing ball with the dog—I bent down and
couldn't get up. Bruce had to help me stand and I was really
worried that my boss was going to be angry if I didn't make it
to work. Standing is what I do all day behind that counter, filling
prescriptions. But that night I was still lying on the couch.
It was almost bedtime and I took a couple more muscle relaxers
in the hope of getting a good night's sleep, but I must have
been leaning on my arm because it had gone to sleep.
I woke up the next morning and my back was feeling better but
my whole left side was pins and needles. It was a very weird
feeling. I figured a hot shower would get my blood flowing, but
it didn't. I wondered if I should go to my doctor, so I called
his office but was told he was away on holidays. I then called
the staff at a local medical center and they got me in to see
Dr. B. later that day. He poked me with toothpicks but he had
no answers. He told me to make an appointment with my regular
doctor who was due back in a few days and said to take a couple
of headache pills and a muscle relaxer and do just that, relax.
I got home and did as I was told and became a little frustrated.
It wasn't like me to just sit there. I only have satellite TV
and when the weather is bad, which it was, I don’t get
any reception, so most of my time was spent watching Shirley
Temple videos, which I love, and reading.
A few days later I got in to see my own doctor, Dr. C., and
by then my back was doing much better, but my left side was still
numb. The doctor had me walk up and down his hallway and then
said he'd send me to Dr. D., a neurologist. I had dealt with
him before, for a serious brain injury I’d received from
a car accident about nine years ago. So I went to see him, he
did a few tests, then told me that my symptoms were probably
from my brain injury; a bit of stress can trigger such things
since I do have scarring on my brain. It'll just go away he said,
so go home.
Then I made an appointment to see Dr. C. to discuss the discoveries,
and to tell him my really good news, that the numbness was gone;
thank God for that! He said he was glad to hear I was doing better
because he’d been afraid it might have been MS. What? He
has a few patients with MS and just thought the numbness could
be an indicator, but Dr. D.’s report said ‘no’,
so, thank God! Dr. C. was really relieved, which scared me in
a way. I thought, what the heck is MS? Could it be? Were they
wrong? And I guess that thought just lodged in the back of my
mind.
* * *
So now all these thoughts are flooding back. Could I have MS?
My mind starts racing and by the end of the day I'm pretty
stressed and feeling even worse. The staff at the doctor’s
office next door get me in to talk to Dr. E. I tell him about
my episode in November and how Dr. C. thought it could be MS.
He didn't believe so, but maybe my mind/body connection was
doing just that. By now I’m thinking all of them are
wrong and it must be MS—I'm usually so healthy; I'm never
sick. I've just gotten myself into the fitness thing! Low-fat
everything and doing a run/walk most days when I get home;
I’ve even been working out at the gym every other day.
Dr. E. writes me a prescription for some amitriptyline and
tells me to take them before I go to bed, that they’ll “calm
the waters.”
So I go back to work and tell everyone I need to go home and
rest. They all know I have the MS fear in my head because I told
them when I just kept feeling lousier and lousier. You'll be
okay, everyone assures me. Just go home and relax. So when I
get home I tell Bruce of my fear and he says, "You'll be
alright, it's just a bug."
He's probably right. I'll just take those pills and have a good
night's sleep. Everything will be better in the morning.
But I wake up and everything is not better, and the blood tests
that Dr. E. told me to have are my first order of business. I
get dressed for work knowing that I won't be going in feeling
like this. I ask Bruce for a ride because I’m not sure
I’ll make it if I drive myself. We get to the lab for my
tests and he drops me off rather than come in because he has
to go to his new job. So I go in and have my blood taken, explaining
to the nurse that I feel worse than ever. The amitriptyline really
must have done something to my system because I'm weak and jittery.
What on earth is going on? She takes me to a back room, sits
me in a recliner, and brings me a glass of orange juice. Just
relax, she says. But I'm getting tired of hearing that! I've
got to get out of here, so I thank her and make my way down the
street, back to work. I feel like I'm drunk. That's got to look
good walking like a drunk in my pharmacy uniform.
The store's not open but Bill is there. He lets me in and I
tell him about my predicament, and that it must have been the
pills. He says some people do have a bad reaction to it and that
I should just go home. I think it best that I see a doctor before
I go home. The staff at the clinic next door doesn’t think
I look very good so they put me in a room where I can lie down,
but I still feel like I'm falling over. Dr. B. comes in looking
puzzled. He has no idea how to tell me he has no answers. He
had talked with Dr. E. the day before but it's his day off today.
Dr. B. calls my regular doctor and tells him he is sending me
over, so have a room ready. One of my co-workers called Bruce
who came to take me to the clinic.
I’m taken straight away to a room when we arrive. "I've
got to lie down before I fall over," I tell Bruce. He helps
me onto the examining table and I lie down. I feel so strange.
What's wrong with me? This is really starting to scare me. Because
I'm so rarely sick I almost feel as though I'm overreacting.
But I can't shake this feeling of losing control. I’m so
weak.
We’ve been in the clinic for hours. I'm not really sure
what was said when Dr. C. came in. I think he spent the time
trying to get me an MRI appointment, and he was successful—I
had an appointment for the next morning, a Saturday. I’ve
never heard of getting such an appointment so quickly.
* * *
I don't recall that evening. Bruce drove me down for the appointment
in the morning. I remember pulling into the emergency parking
lot and asking Bruce to get me a wheelchair. He said, "You
don't need one, it's not that far." He had no idea how
poorly I felt. I saw one when we were close to the emergency
room so I sat in it and asked Bruce to push. I understood his
hesitation—he just didn't know how sick I was. He probably
thought it was all in my head, that I just had a virus and
was making too much of it.
So we checked in and were sent to the waiting room. Bruce grabbed
a magazine and I put my head on his lap. We waited for what seemed
forever, and then finally an orderly showed up with a wheelchair
to take me down for the MRI. We left Bruce in the waiting area
and as I was being wheeled down I had the weirdest feeling like
I was falling over and being pushed while sitting up! I felt
so spaced out.
I changed into a gown and had to make sure I had no metal on
my body to have the MRI. I lay down on a stretcher and was asked
what kind of music I would like to listen to. The nurse suggested
I wear a set of blinders to help me stay relaxed because I was
going to end up in a small cylindrical space, not much bigger
than myself. They explained everything beforehand. The music
is to help keep the patient relaxed as well as to help drown
out the loud clicking noise that takes place when the machine
is operating. If at any time during the procedure I needed assistance,
I was to raise my hand.
* * *
They push me in the cylinder and turn on the music. I can just
barely see out of the bottom of the mask they put over my eyes.
They tell me again the importance of staying as still as I
can and tell me that the procedure will take approximately
twenty minutes. As I lay there I hear loud grinding and clicking
noises from the little machine taking pictures on the other
side of the cylinder walls. All I can think of is that I hope
they don't find anything. Let this please just be a virus on
its way out.
About fifteen to twenty minutes go by and they pull me out,
saying everything went well. Now they wheel me back to emergency
and to Bruce who I miss so much right now. I am terrified that
the MRI is going to show something. I'm only thirty-six years
old. I’m too young to have some terrible disease. They
set me up on a bed in the emergency room and Bruce and I wait
patiently for a doctor. Bruce is hungry so he goes to the cafeteria
and brings back some Chinese food. I'm feeling a little hungry
so I have a few bites. I must be feeling better already.
A nurse comes in and tells me they need a urine sample, so Bruce
helps me to the bathroom. All of a sudden I'm not feeling so
well again. My balance is bad and I feel so weak that I can barely
make it to the bathroom. Bruce is practically carrying me, then
I have a hard time trying to pee in the bottle without spilling
it all over the floor. I call to Bruce who helps me back to the
stretcher and explain that I can’t put the lid back on.
A nurse comes in just as I'm getting back on the stretcher and
Bruce relays my problem. She puts the lid back on, bless her!
I'm feeling so weak. I just wish I could go to sleep and wake
up feeling better, but I'm not even sleeping well because my
mind won't stop spinning. It feels as if my world is coming to
an end. Do I ever have a case of "poor me." A young
woman walks from around the curtain and introduces herself as
Dr. F., a neurologist. She has looked at my scans and tells us
there are spots on my brain but when she compared this scan to
the one I had years ago from my brain injury, they look pretty
much the same. So that's good news, nothing wrong with my brain!
She gets me to follow her instruction and conducts some tests:
I follow her finger with my eyes and touch my nose as she checks
my eye movements; I run the heel of one foot up the other shin
to test balance. I manage to do a pretty good job, just a little
sloppy, but she's still concerned that something is not right.
She suggests a spinal tap right away. Bruce asks about the possibility
of MS and she says that's one reason for the tap. They would
be looking for protein in my spinal fluid, which is one sign
of the disease, but she's confused that there's nothing on the
scan. I’m really starting to panic, so it’s a good
thing I’m given a sedative to take to help me relax, and
then they take more blood. Bruce and I can see the doctor in
the little room at the foot of my bed looking at the scans again.
A few other people are there with her, looking at them as well.
She comes in and explains the procedure to us and says that it
doesn't hurt much but is pretty uncomfortable. I guess so, with
a needle that goes in between your vertebrae. I’ll need
to keep as relaxed and still as possible. I'm a little concerned
about having such a gigantic needle put in my back. So is Bruce
who is sitting directly in front of me as I lie on my side, very
still. Bruce is holding my hand, trying to keep me relaxed. I
wish there was something I could do to relax him.
As the doctor inserts the needle there is a stinging sensation
followed by pressure. She's having a problem finding any fluid
and is wiggling the needle around. She pulls it out and tries
again, explaining that it is a tricky procedure but she's got
it working now. She tells me again that she had a few other doctors
looking at my scan but that not much change was seen from the
previous scan. This is such a relief to me. I'm so glad
that there's nothing there. My brain is fine! Thank God…
But Dr. F. is still not sure what my problem is. They will have
to wait and run my tests on Monday since it's now Saturday. If
I want to stay in the hospital I can have a room but she's not
sure there's any point as I would be much more comfortable at
home. Bruce asks if there is medication to take
if it turns out to be MS. There is, but it's a long process with
IV drugs and she's hesitant to discuss it because the MRI looks
fine. She's quite sure it's just a virus and we have to let it
run its course.
Everyone wants me to go home and relax but they don’t
understand I can't relax as my body feels like it is vibrating
like crazy, and even when I'm lying down I feel like I'm going
to fall over, I'm so weak. My legs are so spastic I can't sit
still. What is going on? I'm really losing my nerve. Not knowing
is scary.
We come home and Bruce rents a movie, but I don't recall it,
all I remember is sitting on the couch and my legs won't stay
still. I remember going to bed and feeling like my body was going
to vibrate right out of bed. Bruce could even feel the
vibrating.
* * *
The next morning Bruce dropped me off at my sister Suzanne's
so I wouldn't have to be alone. We stuck to this routine for
over a week, although I didn't really feel like company, I
just didn't want to be alone. Sue was wonderful. She set me
up on her couch with blankets and pillows and stayed with me
the whole time. She helped me walk to the bathroom and set
me up in her bed to try and sleep, though I never did. Sue’s
dog, Benji, didn't want to leave my side. He would sit beside
me on the couch and wait outside the bathroom door for me.
Every once in a while I would glance at him and he would be
looking at me. Spike, the other dog, would lie on the floor
at my feet. Animals sense when something is not right! At home,
my German Shepherd, Indy, never left my side either, and the
cats were always there as well.
Sue would make me lunch every day although I didn't always eat
it. It's not that I wasn't hungry; I was starting to have a problem
swallowing. It was a very strange sensation because it felt as
though my tongue was starting to swell up. My speech was really
on a downslide as well. Sue would call our parents in Ontario
for me, hoping it would lift my spirits, but in a way it made
me feel bad. I would talk to them but I sounded like I was drunk.
They were supposed to be on their way to Florida for the remaining
winter months but my dad said he would wait until I was feeling
better. I told him to go, as there was nothing they could do;
I just had some virus thing that would have to run its course
and I would be fine. I could actually tell that my dad was quite
concerned. I don’t think he had a good feeling about this.
The days would go by, Bruce would drop me off at Sue's where
I would just sit on the couch, and then he would pick me up and
take me home to sit on our couch. I wished this would all just
hurry up, I was so sick of being sick.
* * *
Dr. C. calls Bruce's cell phone and tells him I have an appointment
the following day with an ear, nose and throat specialist.
I’m so pleased that it’s this soon. I just wish
this buzzing in my head would stop, I don't want to feel like
I’m going to fall over all the time, and I want the body
tremors to cease. I'm really starting to lose it. Maybe I have
something new. Maybe they won't figure it out. I hope it's
not catching! I just want to go to sleep and wake up better.
Please!
Bruce takes me to the specialist and I'm actually hoping like
crazy that the doctor will see something. He gets me to do the
test where you walk one foot close in front of the other for
balance but he's afraid he has no answers. If I do have an inner
ear infection, we'll have to wait and see because he can't find
anything. He suggests that I try some pills for my vertigo. He
gives me a few and a prescription so we stop and have it filled
at the pharmacy and I start the pills right away.
Within a few days I'm actually starting to feel better. My head
is still buzzing, I still feel like I'm drunk, and my speech
is choppy, but I’m better somehow. I decide I want to take
advantage of this and suggest a boat ride to the pub for lunch.
Bruce is excited I'm feeling better and suggests asking his mom
and dad to meet us because they too have been quite concerned. He
has to help me down the dock and onto the boat but, thank God,
I'm actually outside in the fresh air. Living by the ocean like
I do, and being out in all the natural beauty is medicine in
itself.
Bruce's parents are there and we have lunch; I even have a beer.
I walk to the bathroom alone, which is a great feat that I am
proud of. We don't stay too long though because I don't want
to start getting sick again. It must really be a virus though,
and now on it's way out. I'm so pleased.
I've been so wrapped up with being sick I forget that Bruce
has to leave town for some courses. I wish he didn't have to
go but at least I'm getting better. I decide to go for a walk
that afternoon, I'm so happy. I'm still feeling wonky, but better.
Bruce leaves for his trip and I decide I can stay home alone
with Indy, my great friend who never leaves my side. I'm so glad
he's here, I don't even feel alone. Sue phones to make sure I'm
okay and to see if there's anything I need. I tell her I'm doing
much better and will call if I do. She's a good sister and a
great friend.
* * *
Bruce's mom and dad stop by and Bruce's mom hands me a card
and says, "Happy Anniversary!" I totally forgot. It's
been ten years for Bruce and me today. I thank her for the
reminder. I tell them I'm going to drive into town to pick
up a couple of TV dinners just to make life easier. Bruce's
mom insists on getting them for me but I tell her I need to
do this, so they leave and I get ready for my big adventure.
I drive into town and I'm doing just fine. Walking through the
store is a bit much though, with all the lights, people and sounds.
I get what I need and stand in line, but the standing isn't going
over so well. I'm feeling weak and I want to fall over. Damn,
I thought I was feeling better than this! It's my turn now; I
pay and leave. The clerk comments that I don't look so good.
I explain I have a bit of the flu but I'm better than before.
Isn't it funny how someone's words can mean so much. I'm feeling
like I need to get home. I'm not doing well again! I run into
a friend outside who agrees I look terrible; she's a little concerned
and asks me to stay at her place until Bruce comes home. I don’t
want to because of the dog and cats but I think if they hadn’t
been at home waiting for me I just might have. I'll be fine I
tell her, I just need to lie down.
I make it home but I'm a little frustrated—I thought I
was getting better. I pop another pill and have a sleep. I wish
Bruce were here. He phones and I tell him I'm feeling better.
Little white lies! There's no sense in worrying him, he can't
do anything, he's too far away. He tells me he'll see me tomorrow
night. That makes me feel better somehow.
I spend my time on the couch waiting for Bruce to come home.
I'm not doing so well again. He finally gets back, exhausted
from his trip. He's shocked that I look so bad because he thought
I was getting better. So did I!
* * *
The next day Bruce drops me off at sister Sue's. This time
he has to help me up the stairs—not a good sign! I'm thinking
it's because I ran out of the pills for the vertigo. I'll get
Sue to call for more. I'm feeling pretty tired so Sue helps
me to her room. I lie there but I can't sleep then I have to
go to the bathroom. I'm determined to make it on my own so
I get up, hold onto the bed and head for the door. Dammit,
I actually wet my pants. I call for Sue but it’s not
easy, as my speech has really become slurred. She opens the
door and I tell her I peed my pants so she helps me to the
bathroom and gets me a clean pair of pants, reassuring me that
everything will be okay.
I tell her that I want to go to the hospital, not the doctor's
office. I really don't know if she's strong enough to help me
down the stairs. I can barely stand up. But she is strong, and
practically carries me down the stairs and puts me in the car.
She just keeps telling me that I’ll be okay, it's just
a stupid virus and they'll help me in the hospital.
We get there and after what seems like forever, they help me
onto a gurney. Sue helps me explain my symptoms: that I've lost
bladder control, my speech is slurred, I have a terribly ringing
in my ears, and am so weak that I can now barely lift my arm.
I try to explain that I need a catheter but the nurse says they’ll
just give me a bedpan to sit on when I need it. Sue helps me
to explain that I have no control at all, so they decide to lay
me on a pad. I am so frustrated! I know what I need, just do
it!
The nurse gives me some pills to swallow but I'm choking on
water at this point and she's trying to give me the pills with
water. She's not taking the time to listen to me. Sue is listening
though and tells her I can't swallow. She apologizes and tries
to scoop the half-dissolved pills out of my mouth with her fingers.
Thank God for Sue. Even though my words are no more than a mumble,
she takes the time to try and understand. She stays with me.
A doctor comes to check me out and Sue explains my predicament.
He orders some blood tests and a catheter, which is a relief
to me, and I can’t feel it anyway. I just don't want to
lie in my own urine. As time goes by my speech is almost nil.
I am so scared I can hardly breathe. What is going on? A few
days ago the tests showed nothing, but my body is shutting down.
Am I having a stroke? Do I have brain cancer? Am I going to get
better or is this going to get worse? Bruce shows up and he looks
really scared.
* * *
During my stay in Emergency, time slowed right down. I'm lying
on a gurney with a mattress an inch thick and am really sore.
I couldn't move any part of me but my eyes and because my mind
was spinning so fast my memory of nearly everything was wiped
out. I could feel everything though.
I do remember Dr. C. coming in, standing at the end of the stretcher
and patting my leg. But he never said anything, just looked at
me, smiling. He looked confused, which didn't help me at all.
It was the most frustrating thing I have ever experienced, lying
there, and not being able to communicate. I just wanted to scream.
Sue was there all the time though, and that was one thing I could
count on. She was doing anything she could think of to try and
make me comfortable.
My first night, I recall just lying there listening to life
in the emergency ward—people crying, ringers going off,
people getting sick. I had been stuck in the corner bed with
the curtains pulled and I felt so alone. There was a haze of
people coming and going. A friend showed up and had a hard time
smiling at me, which wasn't a good sign because she always smiles.
She knew I was sick, but not that sick. She didn’t know
I was paralyzed.
The doctor sent in a young physiotherapist because he was concerned
that my body wasn't moving and I guess he didn't want to see
me seize up. He was bending my legs all around and it felt
so good. I didn’t want him to stop. My friend was watching
the expressions on my face and commented that I had a bit of
a smile on my face. But my rear end was painfully sore. The frustration
of wanting to move but not being able to was nearly unbearable.
I lay there all night wishing someone would turn me on my side,
but it didn't happen.
Sue was a blessing! She straightened my sheets and petted my
head for comfort. She did a lot of talking and I’m grateful
because it kept me from thinking. She got quite concerned at
one point because my neck had swelled up so she found a nurse
and insisted I be looked at. I'm so glad she was there. She also
put up a fuss because I was stuck in the corner with the curtains
drawn and was being ignored. She voiced my concerns because I
couldn’t. I was then moved in front of the nurses' station
and the curtain was opened, which at least made me feel that
my situation was of some importance. Dr. C. was contacted and
I was started on Methylprednisalone, which is used for inflammation
in people with spinal cord injuries and MS. And the nurses kept
on taking blood samples.
I was informed that the doctor was looking into having me sent
to the neurological ward in the city where they might have some
idea what was going on. I was quite excited about the prospect
of being moved and put at the top of the list. The thought that
they would actively be looking into what was wrong with me made
me feel better. Bruce's dad stopped by to see how I was doing
and I felt bad because I could only lie there. Strange feeling.
* * *
I hear the staff at the desk discussing my transfer. There
is no opening so I have to stay put. I’m losing it! I start
crying uncontrollably. I can't stop. I am actually making howling
noises. I can't believe I have to stay here in emergency not
knowing what's wrong with me until they have an opening. HELP!
I now have everyone's attention. A nurse comes over to explain
the hold-up but she knows I overheard them talking. Bruce's dad
decides to leave, he's not quite sure what he’s just walked
into.
I can't spend another night lying on this mattress—I'm
too sore! I don't want to listen to all the sounds in Emergency.
The noise never stops! I need to find out what's wrong with me.
My mind is on overload! I can't believe this is happening to
me. I am literally trapped inside my own body. I can feel, hear
and see two of everything, but can't say boo! I wouldn't wish
this on anyone.
They decide that I would do better out of the emergency ward,
thank God, and up in ICU where it's quieter and there’s
more room. Everyone goes on about how quiet and nice it'll be.
Anywhere away from here will be great, so up I go, and the best
thing is being placed onto a real mattress! They put me in my
own glass room, hook me up to all kinds of monitors. It’s
like being in a fishbowl but at least I’m now on the top
of the list. The nurses up here come in and turn me, trying to
make me comfortable.
* * *
While I was in ICU Bruce would play with all the monitors.
I had one that was attached to my finger, so Bruce would put
it on his finger, then Sue's finger, then on anyone that came
in. It was funny.
I'm so glad that only a handful of people came to see me. I
really wasn't into having company since all I could do was be
there, not participating. Bruce and I developed a way for me
to partially communicate. He printed letters on a piece of paper,
and I would point at them with my right hand, spelling out words.
Thank God my one hand was still moving at the time and I finally
had a voice again.
Bruce wrote down some simple requests, such as ‘Turn me
to the left’, ‘Turn me to the right’, ‘Put
a pillow under my knees’, or ‘Put a pillow between
my knees’. I'm not sure if anyone realized I could feel
everything. When I had an itch I would just lie there and suffer.
I couldn’t think of anything really, except for it all
to be over. Not knowing what was going on was a living hell.
Would I ever move and talk again, or was I actually on my way
out with a brain tumor or cancer? I needed an answer! Everyone
around me needed an answer. It was tough lying there watching
the ones I love in tears from fear.
I laid in ICU for four or five days before the big move. I was
extremely happy about going to the city to the neuro ward where
they would hopefully deal with whatever was wrong with me. I
had been on IV for nearly a week and had lost a lot of weight.
My vision was by then affected as well. I spelled out “patch” so
that with one covered eye, I'd only see one of whatever I was
looking at. My strength was declining too.
A couple of attendants came in to take me to the ambulance.
They were so nice, trying to make me comfortable. They put me
in the back of the emerg-on-wheels and we were set. One attendant
stayed in the back with me and would tell me where we were, and
he held my hand. My mouth was dry, so he found a glycerin swab.
There was a nurse with us too. I just wanted to get where I’d
be helped. I was terrified of not knowing. We got to the hospital
and had to wait our turn. My mouth was so dry! Bruce and Sue
were on their way down to be with me and I was so thankful that
I wasn’t alone during the whole ordeal.
They finally got me onto a stretcher and the ambulance attendant
told the nurse that I couldn’t talk, swallow or move, and
I have double vision. He squeezed my hand and told me that they’d
take good care of me.
Bruce and Sue show up just as the ambulance was leaving, and
they continue to tell the nurse my story. Everyone shakes their
heads and looks sorry for me. Where was the doctor? I wanted
someone who could help me. I felt like I was in a nightmare and
wished my mom were there to hold my hand. My mom always fills
me with hope, and I really needed some right then.
Mom and Dad were supposed to be in Florida but my illness put
a stop to that. My dad said that once they knew I was all right
they would leave on their journey, but since I wasn’t getting
any better they felt that my mom's place was with me. She was
to arrive the next morning. I knew it was going to be hard on
her to see me lying there not able to move, but she is a rock!
* * *
Bruce and Sue leave me to get something to eat. The nurse is
rearranging my bed around me, checking the monitors, looking
after me. She decides that I am sliding down the bed and asks
the nurse behind the counter to please help her lift me up
the bed. The nurse replies, "Can't she do it herself?"
My nurse barks back, "She's paralyzed, just help me!"
Shortly after, a Dr. G. a neurologist, comes in. She asks me
questions that she knows I can't answer but she answers them
herself. I guess this is her way of involving me with this visit.
Bruce and Sue show up. The doctor continues the questions with
them. She looks very concerned, which scares me. She then explains
she will go up to the neuro ward and help prepare a room for
me.
After what seemed like ages, they call down to say a room's
ready. They wheel me up with Bruce and Sue in tow and explain
that they will put me in a room at the end of the hall. That's
not good enough for Sue. She tells them that my breathing is
very shallow and she is very concerned. She also explains how
I was left in the corner in the emergency back home and not looked
after, so they decide to put me in the empty room right across
from the nurses' station. I'm so thankful for Sue. I feel better
already.
They set me up in the room, and I'm by myself. It’s a
private room but if needed, I will have to move to a regular
room. Sue reminds me that Mom will be here in the morning. Mom
will help me get better; I know it.
It's time for Bruce and Sue to go home. Sue said she would stay
if I want her to, but I spell out, “thanks, go home.” They
say their goodbyes and Bruce tells me he loves me and will see
me in the morning with my Mom. I spell out, "prepare her." I'm
afraid of her reaction. I don't want her to be too shocked.
* * *
After they left, a couple of nurses came in, introduced themselves,
and explained that they’d be in every two hours to check
on me. They propped me up with pillows and told me to try and
sleep. My mind was spinning though. All I could think of, over
and over, was, "What's wrong with me?" I would have
to wait until the morning because they had an MRI set up for
me first thing. I was terrified that they’d find something
that would end life as I once knew it.
It was a long night. The nurses would come in, check my blood
pressure, shine a flashlight in my eyes, and have me try to push
against their hands with my own hands and feet. It broke my heart
every time because I couldn’t do it. I gave it my all and,
nothing. I could feel their hands but couldn’t respond.
HELP ME!
I couldn’t stop thinking that I was literally trapped
in my own body, especially when I had an itch and could do nothing
but suffer through it. My bottom hurt so much. My mind went crazy
all night thinking about the morning when I would hopefully have
an answer.
I was so glad my mom would be with me but very afraid of her
reaction when she’d see me lying there, paralyzed.
* * *
So they wheel me down for the MRI. Someone asks me what kind
of music I want. Don't they know I can't talk? I try grunting
something out and the guy realizes that I can't communicate.
He explains that the procedure will involve injecting dye into
my IV to give a better picture. He calls in more people to
help lift me onto the machine. I feel like I’m lying
here forever. Finally I’m pulled out and told it went
well. But is that good or bad? I'm not sure. I'm so confused!
They wheel me upstairs and into my room and there's my mom.
She smiles at me and kisses my forehead. “We're not going
to cry,” she says.
I can't believe I just spent Christmas with her a couple of
weeks ago, having fun, and now here she is, to look after me.
I can see concern on Mom’s face. What a horrible shock
to see someone you love suddenly incapacitated when merely days
before I had been walking and talking.
They get me back on the bed and mom pets my head like she used
to when I was a little girl. She keeps reassuring me that I'm
on the road to recovery, she’s here now and I don’t
have to worry. I totally believe her. Bruce and Sue agree.
Dr. F. comes in to let us know what the MRI has shown. She tells
us that she has good and bad news, but mostly good news. My heart
is beating like crazy and Bruce is really squeezing my hand.
The good news is that it's not a brain tumor and I haven't had
a stroke. The bad news is that I have MS, but back to some good
news. It's the relapsing / remitting kind and I had a very acute
attack, which is good, because it prompted a very quick diagnosis.
It didn’t seem quick to me, but they’re looking at
it from a different angle. She said that now we can treat it
and I can work on getting better.
My head is spinning. I am so relieved that I'm not dying and
at last we know what's happening. She tells me that with some
hard work I'll get back to being my old self. It might take a
while but it can be done. That’s what I need to hear! I
will walk and talk again! (What a relief to everyone.) But I
have MS—which is what exactly? I don't know anything about
this disease that shut my body off. It's hard to think that I
will get better because right now I can't do anything. I want
to know everything about this disease. What can I do so that
this never happens again? They tell me that the odd thing
about this is that they really can't tell me anything. They can't
predict how sick I'll get or when I'll get sick again. What?!
Dr. F. tells me she will send over some information and in a
few days will have someone come and talk to us about it.
WHY ME? I see Bruce, Mom and Sue looking at me and I’ll
bet they’re thinking the same thing. This makes no sense
to me. I've been doing all the right things: exercising, eating
right, really taking care of myself and look at me now. What
good did all that do?
My mom is sitting beside me telling me everything will be okay.
She's going to stay with me until I'm better and she knows that
I have some hard work ahead of me but she'll help as much as
she can. She just can't believe how my body has shut down like
it has. She is so sorry I’m this sick, and I'm so glad
she's here with me now, I really need her.
Bruce has gone out into the hall with the doctor. He comes back
in and tries to explain some of what he heard. It all sounds
so confusing. I can't stop thinking that this is a nightmare.
What have I done to deserve this? I’m beginning to grieve
for what my life used to be like. This disease is so full of
the unknown—they can't tell you anything, and the unknown
is scaring me senseless!
They decide that I have lost enough weight after having not
eaten in over a week. The IV is just not cutting it. I have to
have a feeding tube, which is put through your nose and goes
directly to the stomach. It sounds extremely uncomfortable and
it is! This tube contains a wire as thick and stiff as a brake
wire on a bicycle that helps guide the tube and allows an x-ray
to see where it is.
So they tell me to relax, it doesn't hurt too much. But it does!
It feels foreign, not quite right, but I guess I have to eat.
They add some pain medication to the liquid, which is loaded
with nutrients and calories so I can put some weight on.
* * *
There's so much that I don't recall of my stay in the hospital.
My thoughts were just spinning out of control the whole time.
Whenever a nurse would walk into my room, I'd think, "Why
me, and not her?" Life seemed so unfair.
* * *
Since I haven't been able to swallow, my throat is incredibly
raw. Now I have this damn tube running down the back of my
throat making it worse. Sooner or later life has got to get
better. I'm at a major low right now. Along with the pain come
bouts of extreme frustration. I have itches I can't scratch,
I'd love to lie on my side, and if only I could have a teaspoon
of ice water!
Time is going by but it feels like everything takes forever.
My mom ensures me that I'm doing great. I'm moving my toe, which
I wasn't doing yesterday, but I think, big deal! I want to move
my whole body! Baby steps, they tell me, just be patient! At
this point I've run out of patience, I'm looking for patience,
and I have nothing but time.
The nurses are truly amazing. They try so hard to read my mind
and help me in every way they can. They have invited my mom to
stay with me. If I could, I would thank them from the depths
of my heart. My mom is excited about staying. They bring her
a cot, some sheets and blankets, a couple of pillows and tell
her to call if there's anything else she needs. They tell her
they know it's not the Hilton, but they'll do their best. They
show her the kitchen and tell her to help herself. I'm so thankful
to them for trying to make this nightmare more bearable for us
both. Just the thought of her staying with me is a huge dose
of medicine!!
One day runs into the next. I sleep no longer than about two
hours at a time but feel like I haven't slept in weeks! Lying
here awake at night, I look forward to them coming in to take
my vitals every few hours. Over and over I think, "Why me?" and
it is always in my mind that I wouldn't wish this experience
on anyone. When I get better, I'm going to do everything I can
to find some answers about this terrible disease.
Having food pumped into my belly is giving me energy. I can't
really tell, but they assure me it is and I believe them. A few
days after my arrival, I do start moving my limbs, slowly. They
are dead weights, gone to sleep. They decide it's time to sit
me up. Maybe I'll get my bearings and be walking by tonight!
A physical therapist comes in to assess me first. They figure
it will take three of them to sit me up. What?! I thought that
a few days of feeling better and I would just sit up, swing my
legs over the edge of the bed and walk myself to the bathroom.
Apparently not!
Since I've been lying here, my muscles have gone into a deep
sleep. The doctors and nurses reassure me that I'll walk and
talk again but I have a long, hard road ahead of me. I keep hearing
about a place where they send people that have had head injuries
or strokes to recoup their losses and learn basic life skills
again: walking, talking, dressing and feeding themselves.
All I know is that I'm not going there. I'm walking out of this
place. The nurses are great. They tell me things like, "If
you work hard, we'll have you walking in no time." That's
all I need to hear!
* * *
There was one nurse who came to check my vitals, tripped over
a cord and "wiped out." I knew she hadn’t fallen
hard enough to hurt herself so I laughed. It was the first
time I’d laughed in weeks and, boy, did it feel good.
It sounded more like a howl though! But it felt great.
So it took three people to sit me up that morning. They told
me that my muscles needed to relearn their strength and purpose.
It felt so good to be off my back but I couldn't believe that
I wasn’t able to hold myself up in a sitting position!
It was very strange. That was all for the day, just 5 to 10 minutes
of sitting up—I felt like I could use a snooze. But I couldn't
sleep. Again, my head would not quit spinning. "Why Me?!"
The days went by in some kind of fog. I had a speech therapist
who was amazingly patient. She told me that the tongue is one
of the largest muscles in the human body and I had to retrain
it so that instead of just grunting and groaning, I would actually
say a real word again. Never could I have imagined needing to
do such a thing! We take so much for granted. The things that
seem so simple can be, in reality, very difficult. As soon as
you have to think about each step of an automatic action, you
don't take it for granted anymore. You realize how lucky it is
to be able to do it with ease.
The walking was even more difficult. I was sat up on the side
of the bed with my feet on the floor, and my legs would go into
spasms. That in itself was one session. Because I couldn't stand
up like that, they made sure while I was lying there that something
was against my feet for pressure. My muscles needed to wake up.
When it was time again to try, it took three people as before,
but I was finally standing after two weeks. My mom was crying
and clapping and I'm thinking, "I just want to walk." Patience,
patience!
Every chance I got, I pushed myself to do a bit more than the
previous time. They would walk me in the halls and all I could
think was that I must have looked ridiculous—they must
have been used to it, but I wasn’t! I would walk a few
steps then sit in the wheelchair that my mom followed along with.
I would look at her and she beamed with pride and joy! She told
me all the time how proud she was of me, which was the best medicine
of all, because it pushed me to work hard.
I would pull myself up by the bed rails to strengthen my arms
and back, and any time I had two people in my room, I would ask
them to help me get up and sit in the wheelchair. The nurses
told me that someone would be coming to fit me for a wheelchair
in readiness for going home. Again, I thought, not me!
The positive support I received from family, friends and nurses
was amazing. Without that support I'm sure I would have stayed
sick for a long, long time. It was a lot of hard work and there
were many days I could have just stayed in bed but I was helped
through. I missed my four-legged friends and I know they missed
me too because Bruce told me that our dog, Indy, just moped around
the house. The cats looked lost as well. The medical profession
knows how much animal contact can do for a patient’s health
and they now allow pets up for short visits. I was really excited
that Indy could come and see me, and when Bruce walked into the
room with my big German Shepherd I swear everything changed for
me—a wonderful bit of home. He walked in on his leash,
was very excited to see my mom, then came over to the bed and
sniffed me but was not making a fuss; then I spoke to him. He
looked at me and it must have sunk in because the excitement
came all of a sudden. I was so glad to see him! He lay beside
my bed until I was helped into a wheelchair, wrapped up and taken
for a walk outside. It was such a good feeling to be in the fresh
air with family, watching the dog. I was definitely on the road
to recovery.
I had my feeding tube taken out but had to promise to drink
some stuff that was the same consistency as mud, and only after
I went through a battery of tests with the speech therapist.
We practiced swallowing little drinks of water, bread and crackers.
Learning to pronounce words was helping because I needed my tongue
working in order to swallow correctly. It was too easy to choke—I
had to think myself through each step. We usually just propel
food into our mouths and the rest happens automatically, but
I had to break it down into steps and take my time. I remember
eating some pea soup while Mom and Sue were there and I started
choking. The nurse ran in and told me to relax. How do you relax
when you can't breathe? That scared all of us. The crisis passed
but it took a lot out of me.
Because of that episode, they put me back on the mud. I had
to drink eight glasses of the stuff a day, which wasn't easy.
It tasted like chalk and was thick and pasty. It was the same
thing day after day, the same routine, and I lost track. They
would get me ready for breakfast, it would take what seemed like
forever to eat, the physio people would come in and get me up
for my morning walk which got better and better every time and
I was feeling proud of myself, then it was lunchtime, followed
by speech therapy, which was very frustrating.
Mom, Sue and I would watch TV or the two of them would take
turns reading to me. Sue would make up words and get us laughing,
which was good medicine. The nurses would come in and ask everyone
to leave so I could have a nap, but I never slept. I couldn't
shut my brain off. The questions would start: Why me? How sick
will I get next time? How sick will I remain this time? What
does Bruce think about all this? Over and over in my head, and
I didn't know the answers. The obsessive questioning was just
fuelling my fear. I think that in the beginning, that is the
worst part of having the disease, the unknown.
After my quiet time, the physio people would take me for a walk
again. Then usually Mom and Sue would help me into a wheelchair
and we would go outside and they would smoke. Just getting out
of that hospital room was a relief! Then it would be time for
supper. It took ages for me to eat a meal because I had to make
sure that every bit of food was chewed really well. Evening was
the highlight of each day because Bruce would come to see me
and would always make me laugh. I love him so much for that. He
would always lift my spirits! Between Bruce, Mom and Sue, the
medicine of laughter and positive thinking was working on me
in a powerful way. Thank God for special people in our lives.
* * *
Every day in every way, my health got better and better. If
I had only known at the onset of the illness what I know now,
I think I would have gotten better quicker. The physio department
staff asked questions about my house layout and about the help
that I would receive at home. They had talked about sending
me to the rehabilitation facility, but the nurses felt that
I was doing extremely well and as long as my room was available,
I should stay put until I was well enough to go home. It turns
out that home was the best place of all for me to recuperate.
Our house is all on one floor—an open concept with a central
island that could be used if I needed support getting from one
place to another and my mom would be staying with me as long
as I needed her, the best nurse in the world. I was, by then,
longing for my dog and cats and the calming view of ocean and
arbutus trees from my windows.
They fit me for a wheelchair because they thought I’d need
it—not as far as I was concerned though. I had a long row
to hoe, but I was going to hoe it! The neurologist came in one
morning and when I asked to go home she said I could go the next
morning, but I needed to take baby steps. I wanted to run my
way to recovery but I wasn't moving very fast.
The night before I left, one of the nurses came in and mentioned
that I might want to take something to keep my nerves and emotions
on an even keel. A lot of the MS patients she knew used medicine
to keep from becoming depressed. It's such a big life change,
that many find it hard to cope.
At that point, I was feeling overwhelmed so they had a prescription
ready for me the next morning. All the nurses came in to wish
me the best and to express the importance of taking things slow.
Bruce came to pick Mom and me up at 7 a.m. He couldn’t
have arrived early enough for me; I’d been waiting all
night.
In the car on our way home Mom commented that she stayed in
the hospital for two weeks and wasn't even sick! Thank God for
mothers.
Heading up our steep driveway felt very strange because I was
still so off-kilter but when we got to the top I felt that we
had arrived in heaven. My house is in the most beautiful spot
in the world. I had always appreciated the beauty of it all,
but now I see beauty in everything, even the weeds in the garden.
I’ve heard it said that out of every bad experience something
good will come, and I'm living proof. I’ve learned to appreciate
the really important things, the small things.
So I was finally home, and my animals were waiting! I had missed
them so much. I got settled on the couch with one cat lying by
my head, my dog at my feet and my other cat beside me. I think
they’d missed me, too. And it was so good to look at something
besides that hospital room wall. I could see trees and the ocean!
I felt content.
Bruce picked up the prescription for the antidepressant because
that was supposed to help me, but it did the opposite. Within
an hour of taking it, I thought my whole world was falling apart
again. My body was so jittery I couldn't see straight. I was
having a relapse and I just got home. Was I going to be spending
the rest of my life in a hospital room? I was so afraid! After
a few hours of crawling out of my skin, I asked Bruce to look
in my drug dictionary and find out the possible side effects.
It turned out I had them all. We called a pharmacist friend,
and she asked why I was taking it. I said because they told me
I would need it for depression. "Are you really that depressed?" she
asked. The answer was, no. "So stop taking it!" she
said. So I did but had to wait 36 hours for it to leave my system.
What a long night! I couldn't sleep because the body jitters
never stopped. What a terrible feeling. I felt like I did when
this all started. But the next day I was better and drug free.
Every day in every way I got better and better. I took a lot
of baby steps which was very frustrating but that's what I had
to do. Mom stayed for about a month, until she thought I could
handle life on my own again!
* * *
Just after I got out of the hospital I noticed a pamphlet for
the Super Cities WALK for MS event. I called my friends and
co-workers to see if they were interested. I ended up with
a team of 11 or 12 and together we raised over $5,000 for MS.
I was so proud of everyone and even though it rained that day,
I totally enjoyed it. The support meant so much. This is now
a yearly thing that my friends and I, along with so many other
MS supporters, do all across Canada. Raising awareness about
this disease is so important.
I keep putting on different events to raise money for MS research
and will continue to do so for the rest of my life. They get
closer to a cure every day. And with my help we will find one,
I guarantee it!
* * *
I believe from every bad experience, something good will come.
Maybe not right away, but it will. My good thing was a whole
new perspective on life and what's really important. I take
time for the little things that mean so much. That is so important,
to take the time. Live in the here and now. Yesterday is history,
tomorrow a mystery. Today is a gift. That's why it's called
the present.
I read that somewhere recently and thought, how true.
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