It’s the year 1978. I’ve just finished matric, 18 years of age and my whole life lays infront of me. Busy with a course in computer technology, and after a hectic day at college, I am ready for a nice long hot bath. Fill the bathtub and get ready to get in. First my left leg, water feels a little bit cold, but that’s okay, I’ll put more hot water in once I’m in the bath. But o boy, when my right leg hits the water I nearly jump through the roof and the wall behind me so hot is the frikking water. Looked at my left leg and see that it is red from the hot water, and then it started to pain. Only then I realized that I couldn’t feel the difference between the hot and cold water. Bummer. What now. Go to the doctor? He will think I’m, mad, stupid? How can you not feel the water’s temperature?
So I did nothing, and went on with my life. It got better anyway, so let it be.
And life goes on.
Got married in 1981. Move to Pretoria and one Sunday went to watch the first liftoff to the moon at family, since we didn’t have a TV. Couldn’t really see what was going on on the TV. Wiped my eyes and realize my left eye was just a blurr. Went to the eye doctor, sent me to a specialist and he sent me to a neurologist, and after numerous test couldn’t tell me what was wrong. Well since I wasn’t sick I went my day to day way all the same.
1984 fell pregnant with my son and a beautiful little boy was born in Jan 1985. Had the Privilege to become a stay at home Mom. In March or April I went “blind” (optic neuritis) again. Went to the Neurologist and lo and behold he told me that he read of my symptoms in an American medical Journal and I have MS. Okay, I can’t die of it, not in the near future, but he doesn’t really know what it was.
Move away to Komatipoort. There I fell pregnant with my second child. My lovely daughter was born in 1988. Symptoms or relapses were not a problem.
In 1989 we moved to King William’s Town. Here my symptoms come and go, and the first time with my optic neuritis, the dr put me on oral cortisones. It made me as sick as a dog and I refuse to drink it again. My hands went numb, and the dr operate on it for Carpal tunnel syndrome. Should have been, ‘cause my hands felt better afterwards. For a while anyway, and then the numbness return, to stay, this time. Could live with it and life was a bliss. Busy with my kids, runnig them, and their friends, around, work wherever I was needed. No problems at all, and the monster behave himself.
2005 My daughter and I were looking for her for shoes in the Mall. Sudddenly my left ankle just gave way. Nearly fell but hold my posture, and battle to walk.
Trip to home was a 45 min drive, and when we got home my ankle was fine and we forgot about it.
2006, we went to Potch to visit the Aardklop festival. There my ankle did it again. Came back home and was sent to a Neurologist in PE. Sent for a MRI and formally diagnosed with MS. Started on Betaferon and still on it.
From thereon things just went haywire. Vertigo worsen, left leg started to drag, and fatigue kicks in more than enough. I fell, broke my left arm, and suddenly the community start to take notice.
Since we are a very small community, my friends are superb, and help wherever they can.
I am thankful every day that I can still walk, with minimum support, shower myself, dress myself, and go about the day to day things fairly okay.
The Lord is good for me so why complain.
Losing my independance to go where I will when I will, on my own was a big thing for me. I now , need someone to take me to the doctor, dentist to buy clothes, cut my hair, go to church and visit someone.
Special plans have to be made when we go on holiday. If it is wheelchair friendly, a shower in the unit, just to come there and find out there are steps everywhere, the shower is over the bath, and there are no handrails anywhere in sight. Cross it off your list not to go there ever again.
Other than that there are some advantages.
When you get to an airport, you and your family is quickly helped to go where you are supposed to be. No standing in long queues and normally people is friendly and very helpful
BUT wheelchair parking is a free for all for anyone. First come first serve and boy o boy don’t try to tell them that they cannot park there. Laziness is mos the main disability in SA.
Okay, that is my story this far. Pretty picture, but not the worse. After 36 years I am very fortunate and thankful. It could have been worse.
What I picked up from my husband, who is my only carer on this stage.
He is not sure, when to help, when to let it go.
He waits for me to ask, and while I am clinging to the little bit of independence, I seldom ask, which just goes to frustration on both our side.
What he further think, I don’t really know.
My kids grew up knowing that I have MS. I was okay while they were in the house and since they move out to their workplaces and only visit once a year, they help with everything whenever they see I battle. What they think I really don’t know. They just take it for what it is. Mom needs help, and they will do what they can while they are here. For the rest, they can’t really do anything. They are building their careers and that is all this Mom wants.