I'm going slightly mad

“I’m so sorry - I was sure that it wasn’t MS”, said the ophthalmologist after my MRI scan results. He assured me beforehand it wouldn’t be MS, even though I had said to him my dad and my brother had the condition. But it didn’t matter. His words where whirling through my head. While he talked about referral to a neurologist, I was too busy thinking about what this meant for me. I was happy to know what I had, but my immediate thoughts were: “I’m going to be in a wheelchair. My life is over. How can I keep working? How bad is this going to get? How do I tell my family and friends?” It turned out that all my thoughts and questions would be answered in time.

Who I am and what MS means for me

My name is Monica and I have MS. However, this isn’t the only thing about me. My favourite band is Queen (hence the title of this blog). I love making up quizzes and going to karaoke - whether I can sing or not. I work in a pathology lab in Glasgow, which I love. And if I could only eat cake for the rest of my days I’d be ecstatic.

But this condition has turned up and has become something that I’ve had to incorporate into my days. Some days are harder than others – like when my fatigue is so crippling that I can’t even get off the couch to eat or wash. Other days are easier but are by no means ‘good days’, as people call them. I don’t have good days - I just have days that I can manage.

Early signs of MS

I was diagnosed 4 years ago when I noticed I was having problems with my vision. I went to get my eyes tested where I was told: “there’s nothing wrong with your eyesight”. I assured them that there was, so they referred me to my GP. Once again, I was told that it probably wouldn’t be MS, but he didn’t know what it was. So it was off to the ophthalmologist for a scan, where I was finally diagnosed.

Like the time a few years before my diagnosis when my vision became a bit fuzzy. I got that checked out but was told it was a viral infection. Or the time I had pins and needles in my leg, which went away before I could even begin to worry about it. So, I shrugged it all off and carried on until these ‘strange things’ started rearing their ugly head more often and not going away. I guess I wasn’t going crazy after all.

Learning to live with MS

After my diagnosis, what followed was neurology appointments, MS nurse appointments and a treatment plan for my ‘aggressive’ MS. I was so thankful that my condition was being taken seriously. I was, and continue to be, given the best possible care.

However, as much as I appreciated all of this, I felt like I’d been thrown into a world I didn’t know how to live in. I’d been given a map that I couldn’t understand how to follow, or what my

destination was supposed to be. I was overwhelmed, confused and shellshocked - but I knew I had to carry on with the directions I was given.

And so this is where my story began, but what I did not know was just how challenging and unexpected (good and bad) it would turn out to be.