Have you ever seen someone with tremors (shakes) in their hands, head, tongue or legs for that matter?
I am sure you have even thought..."Shame, how embarrassing!" or "Shame, I hope that never happens to me!"
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| a spiral drawn by a person with hand tremors like me |
Well, yes to the person with the tremors, yes its embarrassing at times even humiliating and it even affects their self confidence which eventually causes depression and even a withdrawal to their social lives.
For the past 36 years I have been plagued with tremors in the hands, often jokingly responding to people by stating I have withdrawals from not having my tot for the day, but still it has made me very self concious. As time has progressed, so has the tremors. Going from doctor to doctor to find out cause and treatment has been to know avail, a million diagnosis has been made, lots of money spent on tests, scans, mri's etc.
My experiences are:
When I lay down, I shake, my bed shakes;
I cant hold a cup of coffee it shakes all over;
I eat with a spoon or the food shakes all over the place;
I drink with a straw in my cup of coffee if I go for coffee somewhere;
I order toasts or wraps so that I can use my hands, utensils are out;
I can no longer do my arts and crafts, i shake too much;
When I read I need to place to book or kindle on a hard surface and still my body quivers;
I cannot pour water from a kettle, or pot;
I try to do tapestry, but I shiver so much before the needle enters the area;
My water consumption is from a bottle not a glass;
I cannot fasten my tops with buttons, I now wear pull on pull off items.
I struggle to fasten my bra; (no im not going without my wonderbra)
I cannot write or sign my signature, my son has power of attorney;
My hair is now cut short, I cannot blow dry my hair.
I monitor my tremors with a lift pulse downloaded from essentialtremor.org/
and the list can go on and on.........
Over the past 6 years I have really declined in health, diagnosed with fibromyalgia, heart flutters, atrial fibrillation, nerve pinching, you name it its being diagnosed, even thyroid.
I even did self diagnosis and research on MS, CFS etc out of desperation. Things got so bad in 2012 that I thought I would never see December 2012 and got my will and papers finalised.
Finally in July 2012 I was referred to a Neurologist. He immediately ruled out Parkinsons and Wilson's Disease and told me what I have is Severe Essential Tremors,(www.essentialtremor.org read more about it here)
Again, lots of tests were done, medical costs spiralling and medical aid exhausted, medication called Lyrica 125mg tried out (not covered by med aid), which had a strange effect, I felt I was on a high (like helium in a balloon is how my head felt) like someone with ADHD but the negative was that I never thought rationally, I was forgetful short term memory problems and would make silly decisions, driving was a problem as I would blank out mentally while driving and when reaching my destination couldnt remember what happened between point a to point b. Then, on a day in July 2013 I slipped, breaking my leg in 3 places and displacing my ankle, and its still not 100% healed. My leg just gave way under me, apparently due to tremors.
During this period I underwent more tests, medication changed to Myocilin 125mg and Occupational Assessment done to assess my ability to work, where finally the Neurologist has declared me unfit for work and placed me on permanent disablement. Then, the depression decided to find place in my life. Again anxiety/depression medication has been adjusted to double dosage as I just felt I have no purpose to life any longer.
Not being able to sign ones signature or the ability to write has left me in a really poor mental state, it felt like a part of me has died. I'm mourning this part of me, i'm mourning the part where I cannot make a cup of coffee or even cook, i'm mourning that my independence has been ripped from me. All that works easy is my mouth and at times a sharp tongue(I say this honestly but with sadness and regret to those close to me I hurt). And now, I am now, If the word is correct, totally bereft of my life, and i'm only 52.
But all is not lost.
Despite my very dark days recently and still at times now, I have stilled grasped and held very firmly the hand of my Heavenly Father and have fought my soul fight together with Him. Psalm 62 says it....Our Hope is in YOU Lord, my Soul finds rest in you Lord.
In reflecting on my life forward I know I need to :
- Accept my chronic disease
- Redifine my life...where to from here in Now, 6 months, 12 months time
- Focus on the passion that has been driving me in my soul for the past 2 years and that being Coaching people with disabilities (is this why I have to walk this walk? To understand?
- Enforcing and reinforcing the myths and facts about people with and facing disabilities.
- Securing my own home to be more disability user friendly, eg bath out shower in
- Most importantly keep my life firmly grounded with knowledge that God is my Jehovah Jireh, the Light to my life
- Very importantly to still nurture, love, guide, support my son emotionally and spiritually
- Start a new life, leaving the old behind and starting afresh.
Today we are still planning the next 13 years to retirement, planning our 60th birthday celebration, saving to want to go on holiday, and suddenly in the blink of an eye its a case of....helloooo..."Change of Plan".
How aware I have become that life is lived now, here, this moment...hoping to fill it with Joy, Happiness, Laughter and the ability to cry without blaming or reproach.
May I encourage you...next time you see a person with the shakes/tremors, dont laugh, dont joke and call them names eg uncle / aunty shake shake as colleagues have done to me, rather show some empathy- showing understanding and caring of how they might be feeling.
You never know when you could find yourself in such an unfortunate situation.
If you too are facing some form of chronic disease/disability...please be encouraged by this thought...God is ALWAYS in control, He is the Captain of our ship, He will never let us become stranded..He directs our path. Psalm 37:24 says that though we stumble and fall, we will not be bruised/hurt/overwhelmed because He holds our hand.
I trust that thru this blog, you will understand and support people facing these
challenges in life. We no different, we have feelings and emotions too...just love us for who we are on the inside.
Greetings and blessings to you!
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