My name is Nora and I'm new to the list (or the "thread" as I've
heard it called). I live in Chicago, am 49 years old, and have had TM
for one year, 18 days. I am sorry that anyone has to experience TM but
I am so thankful that we can communicate with each other. It has been a
long, lonely journey for me because I do not know anyone who has TM.
Everything I have learned about it, I have learned first hand. And now,
I consider myself an expert (only on what I have experienced) but there
are still so many unanswered questions.
In "My Story," I would like to talk to people about the
psychological side of this illness. Like - what was going on in your
life several years before and up to the onset of TM? What stresses -
what personal losses - deaths in family/friends - dreams you were
striving for suddenly becoming unreachable - being in situations you did
not want to be in - physical traumas happening to you like robbery,
rape, assaults, etc.
My physical story is the same as I have read in the TMA
newsletter and information provided on this network. On 1/31/97 at
1p.m., I tried to cross the street and my right leg went limp and would
not move. It stayed that way for a few minutes and then I could walk.
But I had a sharp pain in my back and I walked with a limp. I made it
through that day but by 6p.m. that night I needed help getting up 14
steps to the bedroom. I woke up Saturday and my entire right leg was
numb from the waist down. I went to the hospital because I thought I
had another slipped disk (I have had 2 surgeries). I was admitted and
by 2/5/97 I was paralyzed on the right side and numbness was starting
from the bottom of my foot traveling up the left leg. The doctors
thought I had MS and I had an MRI of the head which ruled that out.
Then they gave me an MRI of the lower spine - no slipped disk. Then
they did the middle spine and "MRI showed from T2-9 posterior column
lesion." I thought they could fix it with surgery or medicine like they
fixed my 2 slipped disks with surgery. Yea, right! Little did I know.
The tight band around my mid-section was traveling up towards my
breasts and I had difficulty breathing. I thought I was dying. I could
not feel the bottom half of my body and did not know what was happening
to me, where I was, what I had become. I had to constantly look under
the covers to confirm that I did have a lower body. It was hell as I'm
sure all of you know. For the first few days in the hospital, I
actually thought I had died and was in some waiting room to be processed
for another life or something. Everything was unreal and unlike anything
I had ever experienced and never imagined.
Doctors gave me Prednisone intravenously and my body started to
respond to it quickly. Minor changes were evident in the next week. I
could move a toe. I felt a tingle. Although I could barely turn over on
my side, couldn't feel my bladder when full, could not feel when my
bowels needed to move, and could not stand at all, the hospital started
me on PT and OT immediately (2/7/97). On 2/14/97 they transferred me
from the medical section to the hospitals rehab ward (same floor,
different wing). I thought the TM was bad enough but the therapists
were demons from hell who I soon realized were really angels from
heaven. They worked me to exhaustion, 2 hours per day (not all at
once), 7 days a week and one hour on Sunday. It turns out that I was
very lucky to have gone through such a regime so early in my diagnosis.
I was in the hospital 34 days. When I went into the hospital, I
felt disoriented for 2 weeks because I had been in my old world for 48
years and, BAM, all of a sudden I was stopped cold and thrown into this
strange world. Even though I was in a hospital, because I did not feel
one half of my body, I could not comprehend that I was just inside a
building in my old world. It really felt as if I were on an entirely
different planet where I did not know the rules of the game. Gradually,
I realized that the nurses, attendants, doctors, etc. were people who
did know the rules of the game and they were there to teach me. Teach
me to move, to stand, to balance, to move - teach me everything I had
learned as a child. I resisted their world when I first went into the
hospital but near the end of my stay, I dreaded leaving that safe haven
to come back into my old world - in a wheel chair. How vulnerable can
one be? How vulnerable can a female feel? But one has to move on,
doesn't one?!
Two of my friends had found me an apartment that was handicapped
accessible and on one of the bus routes that had busses with lifts.
They picked well for me because across the street was a Dominicks (large
supermarket) that also had a pharmacy inside. So, I had my wheel chair,
my walker, my empty apartment, my bus route and I was ready to live this
new life I have been living since 3/6/97. I could not walk at all
without the walker. I chose a small studio and my first goal was to
walk the distance of the room unaided. I moved in March and walked the
distance unaided in September.
Many bizarre things happened to me between March and September.
Like, when the doctor took me off steroids and the leg spasms began and
I was put on Baclofen. I had many bad side effects from the Baclofen
and one of them was gaining 30 pounds from being swollen, eating sweets
and increased appetite. (Plus, being sedentary in the wheel chair.).
Once I fell between my bed and the wall and could not figure out how to
get up for 20 minutes. For a while, my legs weakened and I could not
walk to the bathroom at night even on the walker so I had to have a
portable toilet installed by my bed. I lost control of my bladder and
missed the portable toilet on many occasions. That passed and other ups
and downs occurred which I'm sure all of you have experienced. The
worst experience of TM - worse than the paralysis itself - is the pain.
I have had pain since 2/5/97 for 24 hours per day, 7 days a week. It
does not stop. I have pain on the right torso from under the breast to
the waist. It hurt when I breathe in and out, it hurts when my clothes
touch my skin, it (and the parts I touch) hurt when I touch the front
right thigh, hip and buttock. I have a band that is so tight around my
midsection, it feels like a tourniquet. And the band moves up and down
from just over my navel to my hips. Both legs are numb with the right
side being the worse. My legs swell and the corner of the big right toe
feels as if I have an ingrown toenail but I don't. I have a pain in the
back (lower spine) that sometimes is sharp and sometimes burns. The
only medicine that has worked to subside the pain (in the back) -
nothing subsides the pain on my torso - is the combination of
Amitriptylin (25 mg tab) and Carbamazepine (200 mg, 3 x day). My
neurologist says the back pain is from another slipped disk and the
medicine works on that. He said the pain in my torso is from the TM -
damaged nerve endings. I can only describe it as tingling that has
crossed the threshold of pleasure to extreme pain.
Good news is, I went from the wheel chair to Canadian Crutches
to a cane. I started walking in public on crutches on 9/4/97. Believe
me folks, it hurt to walk but I was thankful to be mobile again. On
October 20th I started going out on one crutch. The next day, I gave up
the crutch and have walked with a cane ever since. I need the cane
outside because of the curbs, inclines, etc. of the street. Inside, I
do not use anything. I was discharged from PT on 9/29/97 and exercised
at home. I was really lazy after such rigorous PT and only exercised at
home maybe once a week. In January I started using a treadmill,
exercise bike, cross country ski machine, and other machines at the
health club I had been going to since 1986. I was 160 pounds when I
went into the hospital 2/1/97. In October, I weighed 205 lbs. Since
walking and exercising regularly, I'm down to 200.
Even though I am walking, my TM is not over. It is very
difficult walking and very painful. When it rains outside my entire
body hurts. My body also hurts more when it is extremely cold. My feet
are cold but other than that I have no coldness. My doctor told me not
to get into the steam/sauna room but last week I just could not resist
the steam room. He said MS patients have trouble with heat and TM is
similar. Well, the steam room actually decreased my pain (slightly) and
made my body feel so good. He said my muscles would become weak. I
won't get in every day - but Saturday & Sunday - steam room - here I
come. Regarding the mechanics of walking - people say I look almost
normal. I feel like I am waddling like a duck. My butt sticks out and
I cannot always tighten my lower stomach muscles because I cannot feel
them. It feels like I am walking on two logs. The numbness is really
tight during the day (I sit, 9 to 5). It is better at night when I lay
down. I am extremely stiff arising from sitting and have to pull myself
up with my arms. That's how I am physically. Oh yes, sometimes I do
get dizzy, I cannot turn without using my cane and I cannot run.
So folks, that's my story. It's a little bit longer than I
expected but once I start writing - I never stop. I would like to talk
about the psychological aspects. I experienced many losses just before
getting TM. I was in a situation being obligated to family members and
not able to live my life the way I wanted. I told my analyst when I was
in the hospital that I felt that "If I could not walk where I wanted to
walk, I would not walk at all." I somehow think that was a PART of my
paralysis. My immune system was lowered because of my emotions and
because of the physical condition of my body, of course, but I'm
convinced that my mind and feeling trapped had a lot to do with me
shutting down. How the heck my mind knew to pick TM, I'll never know.
I wish it had not.
Later -
Nora