Being diagnosed with MS was a funny old thing. All hell broke loose because I’d lost the sight in my eye. I had test after test and appointment after appointment. Waiting and more waiting. As I chose to be open about my diagnosis, every question of “how are you?” was accompanied by a sympathetic, concerned head tilt.
I was on a roller coaster of emotions. Some days I found the whole thing really surreal, whilst on others I’d be cracking every possible non PC joke at my own expense. One day I felt particularly indignant whilst I was out for breakfast and overheard some older boys whinging about all the seemingly able-bodied people parked in a disabled bay outside of Sainsbury’s. Not all disability is visible you know (oh God, the sense of entitlement!) Fortunately it was rare, but I also had days where the tears wouldn’t stop and I’d find myself in quite a dark place.
I wrapped myself up in cotton wool a bit. I stopped going to the gym. I tried to explain every personality trait or ailment as MS, as I struggled to work out the difference between Jo, and Jo with MS. I read far too much into it. But I also felt like I needed to live up to the “label”. Because quite frankly, it felt ridiculous that I was now technically disabled. Sure, I’m in pretty much permanent state of exhaustion, but people are always tired. A few simple “adjustments” to my life, like taking the lift instead of the stairs because my legs weren’t working properly today became a huge deal to me. I became the opposite of suffering in silence, as I had done prior to my diagnosis. Suffering feels like a strong word, I just dealt with it. I’m not sure what stopped me just getting on with it like I had done before. I guess I felt I had a licence to be honest about how I was feeling, but also all these things that I’d made insignificant before were suddenly something I should be taking far more seriously. The pendulum swang way too far though! I felt like I was making a huge noise about the changes.
Somewhere along the line, people stopped asking me how I was doing. They had realised that physically, I was more or less ok. The world hadn’t ended. I didn’t have the “bad type” and I’ll probably be lucky and not end up in a wheelchair.
I wish I could have caught on as quickly as them!
I’m almost in that place now. Where it’s just part of who Jo is. Not something that I have to get my head around co-existing with every single day. I’m having a lot fewer bad days, and they have reduced to fleeting moments. I’m back in the gym and I’m making fewer jokes in bad taste. Some days I don’t even think about the fact that I have MS, although my impending treatment is kinda making that tough for the time being. But I can see that I can get there.
I can see that life just goes on.