Well, I suppose my story starts in February 1989. That's when the words multiple sclerosis became a part of my life.
It started on a Monday when I went for a regular eye check up. I had just started using contact lenses so this was the reason behind the check up. The doctor had a look - asked me what I saw and then, told me he was making an appointment with the ophthalmologist the next day. Okay was all I thought, blissfully unaware of anything wrong. So, Tuesday I went off to the ophthalmologist and he had a look, did an ultrasound of my left eye and stuck me in front a vision fields machine. I thought it was broken as I didn't see any dots in my left eye and very few in my right. Wednesday, I returned for the results with my friend. Found out my mother, a nurse, had called them and said she was taking a flight out as well as I had either a brain tumour or multiple sclerosis. Well, that was dandy news.
My grandmother had just died from a brain tumour the previous summer and I hadn't a clue what MS was. So, off I left with an appointment with the neurologist the next day, butterflies in my stomach and wondering if MS was like MD. Thursday, I went to the neuro, a little Asian man, who, although he knew his stuff, scared me out of my wits. He did an exam and then told me I was to go off to the hospital right away for a CT and then spinal tap. I left with the papers and made it as far as a block before I started to shake and ended up calling my friend who came and picked me up and took me to the hospital. I did the CT and went home with my friend for supper.
Phoned my dad from there and told him I had to go for a spinal and when was mum arriving? She was arriving that night about an hour after my spinal appointment. I don't think I ate a thing and was whiter than usual as my friend's children asked me if I was okay. Poor things, sure didn't mean to scare them. Off I went, with friend, for the spinal. I chose to do it without anaesthetic as with it would mean I had to stay longer and I was on a time schedule with my mother arriving. Did it hurt? Well, yes, of course but it was manageable - with a pillow to hold onto and a nurse's hand to squeeze the life out of! What was the worst was when it was over and they had me move from foetal position to lying flat on my back. Felt like my back was broken. I lay there for a half an hour listening to my friend try to keep my spirits up. It was time to go get my mother from the station so off I hobbled and we met up with her.
She didn't recognise me at all and I saw tear stains on her face. She found out what I had just been through and hurried me off to my flat and bed. We talked for a bit and she said she had a feeling it was MS as she had been reading her books and piecing all the things together. Friday, back to the neuro and definite diagnosis of MS. He then told me that I was completely blind in my left and partially so in my right and wanted me to go on ACTH so try and help recover my sight. We left with promises to make a decision over the weekend after some research.
The next few weeks were slower than that week was, thank goodness! After a lot of discussions and phone calls, it was decided to go on ACTH, I talked with my uni profs and told them why I was missing some classes. One prof did me the favour of stepping back and covering his mouth when I told I had multiple sclerosis. Man, was I shocked at the reaction and from then on, thought he was a giant pansy. I had one friend decide I was lying about the whole thing as I wasn't suitably distressed for her liking. Well, excuse me! In the past eight months I had had two people from my family die and then this, I was entitled to a little shock, I think.
I had been on emotional overload and was dealing with this the best I could. Anyway, time past and my eyesight did get better but I didn't recover all of it and now had no depth perception and some permanent areas in my field of vision gone. But, the good news was I had met someone. It was love at first sight, well hearing as we met over the phone, and by April, we were engaged and living together. I had had a previous engagement go by the wayside so we set a wedding date for the next year so we had a year to make sure he could deal with me and the MS. Oh, and I graduated that May, too :)
Previous to my diagnosis, there had been tell-tale signs of the MS, had I known what to look for. Tingles in my extremities, fatigue that didn't seem to go away, spasms from hell in my back, stabbing pain in my head that reduced me to tears and moans... and so on. I had had tests before - I think my thyroid was tested a few million times - but there never seemed to be an answer and I was often told it was stress. I began to doubt myself - my body and what I felt - even began to wonder if I was just trying to seek out attention in some weird way and eventually, just began to ignore what was going on. Even when my eyes had gone wonky, I just put it done to being a very dim February. After the diagnosis, I looked back over these things that had shown up over the years and, with the doc, it was thought I had had it since age 18. I was now 24.
MS does not mean your life is over. We went on and married July 1990, had our first child in August 1991 and our second in August 1995 (yes, I know august is the hottest month and man, do you get uncomfortable when big and pregnant and sweating!). There were 2 pregnancies in between as well. Pregnancy and MS for me was wonderful. I felt so great and normal. The first was a vaginal delivery and the second was a c-section but I never had a big relapse after deliveries. It was so fantastic being a mum and I had a load of help both times - from my husband, my mother in law and my own mum.
When I was first diagnosed, it was as relapsing remitting and I went through lengths of time where I could almost forget completely about it. I worked, planned the wedding, then got ready for childbirth and generally, got on with life. I stopped driving as it was a little dangerous - nearly hit someone as I didn't see them - so that piece of independence was gone. I was sent for an MRI in 1993 and it showed up clean, no lesions/plaques. My distances for walking became shorter so my area of independence was lessened but manageable. I noticed things on and off through the years and towards the end of the nineties, began to wonder whether I was turning secondary progressive. 2000 came and I was sent for another MRI and evoked potentials as the neuro had questions. MRI came back with quite a few spots and a big one on my spinal cord. Evoked potentials were a long test - 4 hours I was in there - and weird things would happen to me. For example, when testing my left foot, my right arm started flapping around - felt like auditioning for chicken run!
Anyway, my suspicions were correct and I was now termed SPMS. Woohoo right? Actually, I wasn't so devastated by this as I already had the feeling this was going on. I also had cognitive testing done this year. Not great results. Interesting tests though - I knew some of them as I had used them in teaching but had never gone through them myself. They test memory - short term, speed of processing, speed of recall and so on. They also test your intelligence level and take a background information. This gives them the ability to compare your results to how others with your same education background, age and intelligence perform. My brain does not do what it once did but then again, I knew this as I had requested this testing be done. In some cases I performed better than less 1% of what my peers would do. I was not happy with this but then again it did explain some of the things that were going on at home. When the results were in, they wanted my husband to be there. We went over possible ways to work around my deficits and it was made clear to my husband that I couldn't help this so he shouldn't feel ignored if, for example, I kept asking him the same question 5 times when he had already answered it.
So, I have been tested three ways from Sunday - what does it all mean to me in real life? Not much - it had confirmed what I already knew but it hasn't really changed how I feel nor what I do or like. It is on paper but the paper results don't stop me from doing what I can and yes, there are times I overdo things just to spite the results and show that I am still boss of my body.
I am now on the hunt for a wheelchair or scooter. Researching the best thing for me as distances are getting harder and harder. I am trying to look at this as a good thing but I still have not got over this being my worst nightmare come true. I realise it will help to broaden my horizons and grant me some more independence but it will take some time. The same thing happened with the cane - I did not want to use but eventually, I realised it was a helper rather than a millstone.
Life with MS can be as bad or as good as you make it. If you spend all your time talking about it and focus on nothing else but, you could end up miserable. I don't do that. I have a wonderful husband who I thank god for every day (even when he makes me testy!) and 2 daughters who are growing up into wonderful citizens. They are beautiful inside and out. I am involved with their dance - I can't do the dance anymore but I still can help by phoning and doing the other jobs necessary for clubs to run smoothly. I still bake, cook, sew and am teaching them to do it as we go along. I spend a lot of my time trying my best to help others. I have two ears, two shoulders, a heart and plenty of time to give so why not use it to help? This is not to say that I am always upbeat and happy but I don't think there is much point in being a constant misery guts. It doesn't do me any good nor does it help my family or those around me. My body might not let me do all the things I want to do but there are ways to get around it and I can still enjoy life. And besides, if I hadn't had MS, I might not have met some wonderful people. I met Julie and her family as we both have MS and both have young families and were both on the Internet at an MS support group. This is truly is a great thing and I have MS to thank for it.
So, if you have MS, I wish you the best and hope that you can continue to enjoy life. If you know someone with MS, remember they are not just disabled, they are a person who still has a lot to offer.
© Judith Cooper, August 2001