July Issue 2013

How did you react when you first learned you had MS? Were you ever in denial?

I just had to deal with it. I knew I was eventually going to be in this state [of being physically immobile]. But there was denial in the sense that I kept thinking maybe it won’t happen to me. Maybe I’ll be the lucky one. Still, I knew what the eventuality was and the whole idea is that you have to be positive about it. I could sit here and scream the entire house down and cry and complain, but I’d be
left with no friends. In order to survive and carry on, you have to deal with it.

MS is an unpredictable disease. How do you deal with that?

The worst thing with MS is to get depressed because then you bring an attack on the body. I know when I’m having an attack as I can sense problems with my speech. I wake up very early in the morning, feeling I can climb a mountain. But after 9 am, because of the heat perhaps, my energy wanes. Living with it is a struggle and you have to keep up.

How do you spend your days?

I go to the garden and kitchen — I try to do everything. I go out in the sun but then come back inside, feeling like a rag. I got an iPad so for the past year or so that keeps me busy as well.
You mentioned being in the sun wears you down.

Heat is a huge problem when living with MS. I love gardening and in my old house I won first prize three years in a row. But now in this new house, every time I go into the garden, I have to come back inside after half an hour because I can’t grip my scooter properly — my hands just don’t work. I then need to sit in an air-conditioned room but I personally don’t take to the cold very well either. So the heat can really limit my mobility. I was also reading research online — even though my doctor told me I need to stop doing that— about how many people in Florida have MS as do a lot of people in Sweden and Norway. If people living in extreme cold and extreme heat tend to have the disease, the climate may be an important factor with MS.

It’s amusing that your doctor wants you to stop doing research. Do you find yourself compulsively looking up cures and treatments for MS?

Yes, I do a lot of research but I’ve come to a point where I know it’s not going to tell me anything new. I’ve been there, done that. And as my doctor in England told me, if there’s any breakthrough it will hit the headlines all over the world. So many people are affected by it that it’s cure would not go unnoticed.

Have you tried different treatments as well?

Yes, one time we heard about an Italian doctor who proposed MS could be treated by inserting a tube into an artery to clear a blockage. We thought it was worth a shot and I went to a local radiology department to get my X-rays done. But when I told the doctors that I was planning on getting a stent, he said ‘Bibi, think about it. Once your artery is opened you could also have a stroke.’

[Sumayra’s husband: We had our visas lined up but then we decided not to go. And you must alert your readers that these doctors, especially in America and China, are very good at giving slick presentations. The medicines are packaged and marketed in a way to make them appear very attractive and promising. But if you read the fine print, they cannot guarantee anything. Patients should be wary of doctors suggesting new cures when there is little evidence to support them.]

“I even tried acupuncture. I went to India with a friend and they poked needles in my leg and we laughed our way through it. And with a disease like multiple sclerosis, you have to laugh your way through life.”

I even tried acupuncture. I went to India with a friend and they poked needles in my leg and we laughed our way through it. And with a disease like MS, you have to laugh your way through life. When I came back from India I was walking. But MS is the kind of disease where I can be totally normal one day and totally inert the next day.

In general, has diagnosis of the disease improved since you were first diagnosed?
Yes. You have good neurologists now and if the doctors are unsure they are willing to admit it and recommend you go to a different doctor. Before, it was ‘I’m treating you whether you like it or not.’
How do people react to hearing you have MS? Do they know what it is?

I did try to explain the disease in many ways to people and in the end the doctor told me the best way is to use the metaphor of telephone wire and how, when the wire is broken, you hear disturbance. The same way, when the nerves in your central nervous system are attacked, it also causes problems. So now when people ask my what’s wrong, I just tell them there’s a short circuit in my nervous system.
Have you met other people with MS? Are there any support groups in Pakistan?

There are support groups here. I did attend but they are so depressing about it that I stopped going. My whole fight is to be positive about it. I have to deal with it happily. There is no point in being morose.