I was eventually diagnosed with Transverse Myelitis in 2012. The neurologist said there is a possibility it can develop into Multiple Sclerosis. But because I had never been as bad as I was in 2007, he was confident that if I did get MS, it wouldn’t be a terribly aggressive or progressive form.
These days, the TM symptoms are always there, it’s migrated over to my left side. It doesn’t have the same power as my right side and it always feels numb and heavy. And the symptoms play up from time to time like dexterity and mobility problems, pins and needles, and numbness. They will turn up full volume if I have a bad migraine.
I’m always in pain from both TM and Fibromyalgia. The chronic fatigue is extremely life limiting as are the migraines. To the outside world I look and seem absolutely fine, not many people know how my life really is except those closest to me. I have to spend a lot of it at home and my life revolves around ensuring I’m well enough to work. During the week, all I have in my battery power is for work. I need to use my phone Reminders to run my life because of the brain fog and cognitive problems. I can’t just go about my business and do this, that and the next thing like most take for granted. I have to manage my illnesses and think “right if I go to A, then that means I can’t go to B, otherwise I’d be too ill to do C.”
But this is my life and I try to get on with it as best I can. I’m happy at home, I’m happy to see my friends for lunch dates, I’m happy taking it easy, my social life is limited to ensure I’m well enough to work and that’s fine, I love my job. I live in a lovely flat, I have great friends and family. And I now have an amazing boyfriend I am moving in with very soon!
Of course, I feel horrendous all the time and of course, life is difficult. But if I’m ever feeling sorry for myself, I just need to remember how far I’ve come since 2007. There are people in this world far worse off than I am. My aim is that my story can provide hope for others with Transverse Myelitis.