One Monday in mid October 2004, I developed a bad
cramp in my left calf muscle while going to my car to drive to work. I stretched the leg, gave it a quick massage, and continued
on my way. By the time I arrived at work, the muscle was still sore, and I was limping. It continued throughout the day, although
I tried to rest my leg as much as possible (not an easy task in my workplace). This continued for several days, but me being
me, didn't give it much thought. Over the week, I also found I wasnt sleeping well, and had another one of my head-aches.
By Friday, I was very tired, and my left leg still seemed sore and weak, I also noticed that my left arm was aching, although
I didnt pay much attention to it, I was too busy to worry about me. I tried to rest over the weekend; but there were always
things to do. (Im not very good at saying 'no').
On Monday, I was feeling really 'down' and very tired, but I dragged
myself off to work. When I arrived, a workmate said I should go home. Eventually she got me to make a Doctor's appointment
for the next afternoon, and at about lunchtime I went home. When I arrived home, I laid on the couch to rest, and slept for
4 hours. I woke still feeling tired, my leg was weak and unsteady, and my arm seemed weak too. I ate dinner and went to bed,
sleeping most of the night. This was very unusual for me, as I normally function well on 4 -6 hours sleep a night. By this
time I realised there was something definitely wrong, and I was glad I was seeing the Doctor.
The Doctor also noticed
that my speech was slight slurred, and the left side of my mouth was slightly dropped. By this stage, we were all thinking
'stroke'. I was sent off for a CAT scan - clear. Next came blood tests, a full chest x-ray and an ECG - clear. I was finding
out that I was healthy in all these areas, but my symptoms were getting worse, it was an effort just to shower and dress now.
Finally a MRI was ordered, this showed 4 small lesions - so now it was suggested that it maybe MS. I was booked into the Neuro
Unit of a local hospital for assessment, and possible treatment.
My ex-hubby offered to take our youngest child - Andrew
- to live with him, to help take some of the stress off me. This was a great help, as Andrew was going through 'teenager stuff'
and it was a handful.
I was given an IV course of Methylprednisolone over 3 days, and I was much improved, although
I wouldnt say 'back to normal'. Back home, I took things easy, but after a few days, I noticed that my symptoms were returning.
By the time I had been home for a week, things were worse than ever, so I went back into hospital. After another IV treatment,
there was some improvement but not as dramatic as before. I had a Lumber Puncture and vision tests done, both came back as
normal, and the Neuro said that this was unusual in MS cases, but not unheard of during the early stages. After being told
that yes, I probably have MS (early stages and mild at this stage), I was given some physiotherapy exercises and sent home.
It was arranged for me to have weekly visits at home from a physiotherapist and an occupational therapist, as I was unable
to drive to appointments etc.
At this stage, I was still unsteady on my feet, but didnt need any aids to walk; I needed
a shower stool to shower, had trouble dressing, and couldnt walk very far and was very slow. I also couldnt use my left arm/hand
for much because of the weakness. I also had co-ordination problems with my left arm/hand/fingers which made many tasks difficult.
(thankfully Im right handed).
At the start of January 2005, and through the physio exercises I had slowly regained
some of my strength and co-ordination, however, I was unable to resume driving and work, and there were still many tasks
I had some problems with. As yet I didt know what type of MS I have, they tell me to wait and see if I have another 'episode'.
The Doctors at the Neuro Unit were undecided as to
if I had 1 episode that improved then declined, or if I had 2 separate episodes close together. I suppose time while tell.
At this stage I wasnt taking drugs, tried to change my eating habits to a healthier diet, was trying to keep a positive
attitude most of the time. I was also very thankful for my family and friends who were being very supportive, and helped keep
me smiling.
The things that I was finding hardest to cope with were the fatigue and the itchiness. I could be tired
when I go to bed, start to relax and doze, then the itchiness starts, and sometimes 'jumping' or 'twitching' in the arm or
leg.... ARGGGHHHHHH... Im wide awake again, and cant get comfortable to sleep.
I was learning to say 'no', or 'now/today'
is not a good time for me', and I was gradually learning to ask for help when not coping with something.
In mid- February
2005, my physiotherapist and O/T had both said that they were pleased with my progress, and they didnt think I needed their
services now. I'm able to continue the exercise program that we have jointly planned, and contact my GP if I have any other
concerns. I'm able to contact my Physiotherapist or O/T, if needed.
I met with my Manager from work, and we have identified
several workplace tasks that I'm able to cope with, and depending on several factors, I hope to be back at work soon. The
plan was to start 2 days a week, and hopefully build on that. I personally doubted that I would be able go back to work fulltime,in
the same job, but never say never.
I was still finding the fatigue during the day my hardest thing to accept and deal
with. This was not helped by the restless nights due to the 'itches' and 'twitches'.
In June 2005, I experienced a
weird 'numbness' around the lips. This gradually spread up and over the right side of my face and into the scalp area. I went
and saw my GP, who thought it best to report in to the Causality Dept of the hospital - after some examinations and answering
many questions the Drs at the hospital agreed that I was having a second attack - too mild to warrant drugs. At this stage
I still hadnt had a formal diagnosis of MS - just probable MS.
About 2 weeks later I saw my Neurologist, and yes,
he now confirmed I have MS - ordered another MRI, which I had done about 3 weeks later.
I went back and saw my Neuro
early August, he confirmed that one legion had grown, and another 3 small ones had appeared.
He suggested that I start
one of the ABCR drugs very soon.
I was given some leaflets to read, and sent off to do some more research of my own, and
made another appt. to see him and make a decision on the drugs in 4 weeks.
As time went by; it was start to become
clear that the Head Office at work didnt really see me being able to cope with the job, but kept dragging things out. Legally
they had to keep my job open for me for 12 months, so they kept playing the 'stalling' game, then the week the 12 months was
up, I received a letter giving me a termination date! That hit me hard, but I was also semi expecting it.
In Nov.
2005, all hell broke out. We moved house, sharing with my son and his girlfriend - Rob and Stacey. Megan was finishing her
year12 at school, and my mum died. This all happened in 2 week period. Needless to say - I was a stumbling, blabbering mess.
All my MS symptoms showed up again, and had a real party with me. I thought I mayve been having another attack, but couldnt
bring myself to go to the hospital! Thankfully everything seemed to settle down by Christmas, but it was clear the living
arrangements were not working out, so Dave, Megan and I started house hunting again.
We finally moved into our own
rental early March 2006, and have settled in very nicely. I had another appt with my Neuro at the end of March, and after
going through everything with him, he decided that I did have another attack back in Nov. and has suggested I go back into
physiotherapy for awhile.
Over all this time, there have been many tears, endless fears, doubts, confusion and many
'lows', but with the love and support of Dave, Megan and other family members, I manage to get through each day. Dave did
finish his IT course - but has now got a job removed from the IT field.... but at least he is working. Megan is now doing
a Cert4 in Youth Working and hopes to further her studies in that area.
Andrew is still living with his dad, but has dropped
out of school - only completing (just passing) year 9, and isnt working or studying at all. Rob and Stacey are still together,
and expecting a baby early October 2006. So life is still coasting along - just not along the path we had planned for our
future.
I still have very 'down' times, and am always cursing this MS Monster - but gradually Im learning to adjust and
accept that this dreaded thing is with me for the rest of my days!
One of the hardest things for me to accept is the loss
of friends - slowly but surely most of my friends - and social life - have drifted off into the sunset without me. (Their
loss really!)
