‘My hands are pretty much dead’
Christelle has secondary progressive MS and has been left pretty much housebound by the disease.
I woke up one morning, unable to see out of one eye. It was a public holiday in South Africa, so I waited until the next day to see my optometrist, who referred me to an eye specialist, who in turn referred me to a neurologist. The neurologist would not give me a positive diagnosis, as I had only one lesion that showed up on the MRI. She said it was probably MS. That was in 2000.
Two years later, I had pins and needles in my hands. I went for another MRI. This time, about seven lesions showed up and the diagnosis of MS was confirmed.
For the first seven years, I had relapsing remitting MS, but now it is secondary progressive. I have great difficulty walking. I have no feeling, or the feeling of dead skin over most of my body. My hands are pretty much dead, and dealing with small objects is a battle. My bladder is totally screwed up.
Mobility is a major issue for me. Without people to take me out, I am pretty much housebound. Leaving the house requires very careful planning, it involves investigating the accessibility of the place I’m going to, including the toilet facilities, deciding what to wear, and so on. I use crutches most of the time, and take a wheelchair when I know there is going to be a lot of walking, like at airports, on holiday and in shopping malls.
I was on interferon for about five years, and last year I received infusions every three months. My last one was in December. I have very good private health insurance, which helps a lot, but I don’t think the medicines make much difference in my life.
I live with my partner of eight years, and he is very supportive. He has to do a lot more around the house than before, and he does a lot for me, as I can’t do the things I used to, like picking up medication, buying things I need, and so on. It must have an impact on him.
We cook together. I might come up with the recipe, and do the chopping, but he will stand in front of the stove and take heavy things out of the oven.
We have a cleaner who comes once a week, and also does my washing.
I am still working. Luckily, the company that I work for has been superb. I am allowed to work from home and the company contributes towards my mobile phone bills. If I need to go in, I can get a lift to and from the office.
MS has had a massive impact on my life. I used to love dancing, but can do that no longer. I do pilates once a week. I was quite ambitious and competitive, but now, at age 41, I have to focus on the here and now. Online shopping is the best.
I am a committee member of the Multiple Sclerosis Society of South Africa (Western Cape). I get involved in a lot of things, like fundraising, assisting new members, keeping up our resources database and participating on our fantastic Facebook group. It is great to be able to speak to like-minded people who are affected by the same challenges. It has also opened up the eyes of my family to become more involved and some have even come up with their own fundraising ideas.
For more on MS visit the Multiple Sclerosis International Federation.
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