I read this thing on FB yesterday, and while the first line was something I could sort of relate to, the majority of the rest of it was not.
The opening line had something to do with there being certain moments in your life you would never forget – when you realized your husband was about to propose, the birth of your child, and being told you had MS.
Now…I don’t know about those first two moments, per se, but I imagine they are fairly unforgettable. And I agree that I probably won’t forget receiving a diagnosis any time soon.
But the whole rest of the post was so different from my experience that it’s almost funny.
Optic neuritis was the writer’s flare up which led to her diagnosis, same as mine.
She received a phone call; I was sitting in my neurologist’s office.
She’d waited a whole four days to find out why she couldn’t quite see out of one eye. I waited the better part of a year, which was still obscenely quick for an MS diagnosis. I lucked out in that all of the specialists had an idea of where my path was leading, and knew what to look for.
She collapsed to the floor sobbing and picturing wheelchairs; I went to work for the rest of the day.
Her husband held her like he’d never held her before; I dealt with it on my own, alone.
Mind you, I’d also done a ton of research. As soon as the possibility of MS came up, I went online and started reading about all of the horrifying things the disease can do to your body, but I also started looking into the 3 first line medications my neurologist told me he’d be considering if MS turned out to be what we were dealing with. I went into various forums and learned first hand what other people experienced with each one, and how they dealt with the side effects.
I even watched a video of someone giving herself an injection, but I was pretty sure I would be going the pre-mixed Pen route instead.
Anyway, there was one appointment when I thought the neurologist was going to call it, and I took the day off work, just so I’d have time to process. He didn’t, though, so I had a decent enough day off from there. The day he DID call it, I actually wasn’t expecting it, so still felt a glimmer of shock roll through me at hearing the actual words.
Then all my research brain stuff kicked in, and I told him which medication I’d decided to try first. He was super impressed that I already knew so much, and we filled out the application form right then, which he faxed in from his office. I was learning to do my first injection within a couple of weeks, I believe.
I asked a friend to come over for the injection training session, in part to help keep the kittens out of the way, and in part to help me remember the steps for when I would do the next one on my own. Probably also just so I wouldn’t be alone. Nurse Billy wasn’t the most comforting presence ever, to be honest. I dealt with the side effects alone, however. And they sucked. But I got better at it once I knew exactly what I was dealing with.
I remember Tim went ahead and set up a brunch/interview/chat with some filmmaker friends for the next morning. I was so mad – I had no idea how my body was going to react to the injection, let alone how I’d feel in the morning. I made it out, but hadn’t slept much and was still feeling many of the flu-like effects the whole time. I got better at managing the immediate and next day side effects, but man. A little consideration after that first injection would have been nice!
Anyway. Mostly I am glad that I can do these things alone, and don’t feel the need to have other people around me all the time. If I ask someone to go to an appointment with me, for example, or any of the tests I have to get done, I tend to focus on them more than on myself. I feel like I have to talk to them, entertain them, do something to make sure they’re not too sorry they came with me. But sometimes I don’t really want to talk. Sometimes I just want to wait until it’s my turn to get it over with and move on with my day.
Sometimes – most times – I’d rather just stay inside my own head for awhile, and not feel like I have to interact and be “on” all the time.
Do I think that makes me better than the lady who wrote the post about being a mess and having a large support system? Yes, yes I do.
Not really; it’s just different. Part of me is mortified at the thought of not having the time and space to process things on my own. But part of me is jealous of that level of support and help from other people.
Above all, however, is the understanding that I chose my own path, each and every time, for better or for worse.
The fact that I am mostly successful in making it work for me is what makes me awesome. Well…one of the things, at least!