Hi Deb,
Welcome to the group, although, it sounds like we all had a mental melt-down
when you first approached us. I'm glad you tried again. We need fresh faces,
ideas, reminders and medical news. Sometimes it is the newcomers who give us
oldies the push we need.
I am always impressed with those of you who go back to work. I always ask
myself, "How do they do it?" Wow!
One of the ways my family knows that I'm over doing it is that I start bumping
into doorways, chairs, tables and grabbing onto their arms as I walk by
insisting I'm o.k.. Those are the evenings I sit on the sofa in burning pain
and wish I could just pull my leg and thigh out of the socket like seperating a
whole chicken. Then I fear the phantom-pain would be just as bad.
Yes, the stamina got better for me. I used to take naps every day and fall
asleep watching TV every evening. I can make it through a day and maybe a week
without napping. It used to take three or four days to recover from a day away
from the house. Now I recover from everything overnight. I can push myself
knowing that I'll get over it. Yourstamina should increase over time.
I have a new answers to old friends who seem to insist that I wallow in some
kind of self-pity. When they ask if I miss working, or, "How are you REALLY
doing?" I tell them "I'm enjoying my life" or "I have a good life and I'm
enjoying it."
You're right TM changes things - everything. Someone on the list once said,
"TM is not who I am." and I quoated that to myself often in the first two
years.
Again, welcome to you and the others who have joined in the past months. I
wish we could have a new-comers pot-luck as our church does.
Patti - Michigan
(TM since Nov 2003. C4-C-6, walking wounded.)
---- Deb Monteleone <aiki...@optonline.net> wrote:
> Hi, my name is Deb.
>
> I am glad some of you are giving the history of your experience with TM. I
> am fairly new to it and I am still trying to deal with it and figure things
> out. I have been part of this group since about August 2008 but have not
> participated much. I am still hopeful of making a good recovery and I
> sensed that this group is mostly, if not all, comprised of people who have
> not recovered fully. When first joining I had asked the question, does
> anyone know what the stages of recovery are and no one answered.
>
> My episode started June 2008, five days after my 52nd birthday. I woke up
> one morning and noticed my feet were numb. I tried wiggling my toes but
> nothing happened, I jumped out of bed thinking my feet would be blue from
> lack of circulation. To my surprise, they looked fine. I walked around and
> nothing changed, so I went to work with numb feet. In the next five days,
> the numbness progressed up to my waist. I could still walk but I started
> using a cane.
>
>
>
> Within the 1st two weeks (can't remember exact times anymore) I woke up in
> the middle of the night with an excruciating pain on my side. I couldn't
> even move. My husband (my hero) called 911; I thought maybe my appendix
> burst. The emergency room ignored the fact that I was numb and had to walk
> with a cane, they were just focusing on the pain in my side. They found
> nothing, next day I went to my primary care doctor; they took one look at me
> and called a Neurologist, who saw me that day. The Neurologist took one
> look at me and told me I had TM and I would be having a lifestyle change
> (boy, I had no idea what he was really referring to). He said the pain in
> the side was a referred pain from the TM (it happened again the next
> weekend, off to the hospital for morphine). I went on IV steroids for three
> days, then oral ones for seven days. Three days after the end of the
> steroids I couldn't walk (left leg went limp), bladder shut down as did
> bowels. Went to hospital for 5 days of IV steroids, then off to Rehab for 2
> ½ weeks. Then home to deal with my new "lifestyle".
>
> It took me about a month to accept that my life was really changing and this
> was not something that would be better in a month or two. I had the support
> and help of my 75 year old mother (she moved in with us for two months) and
> my husband. At this time I was using a walker and trying to learn how to
> walk again and get balance back.
>
>
> I feel I am still making progress, although very slowly. I now walk with a
> cane, drive with hand controls and work full time which is tiring and hard
> to concentrate with the baclofen, neurontin, cymbalta and klonopen.
>
>
>
> I still have questions and am trying to learn how my body now reacts to
> things. I was always active and still do not really understand how you judge
> what 'overdoing' it is. One of the emails explained that paying for it
> means that the burning gets really bad. I do have bad days with the
> burning, stinging and spasticity but I didn't think I overdid anything; this
> is where I fall short of knowing my new limits. Also, is it possible to
> build up stamina or will that never happen?
>
> Any input on these questions would be appreciated.
>
> Deb
>
> Long Island, NY
>
