I’m not ashamed to admit that one of my biggest faults is putting things I don’t want to deal with in an imaginary box, putting the imaginary lid on it and forgetting about it. I’ve had a great few months, holidays, good times with lovely people and most importantly no relapses. I’ve actually felt the best I have felt since this nightmare began last Jan. Which is great, but I think I can say today I’ve realised it’s definitely lulled me into a false sense of security…
I made a promise to myself that I’d be honest on here, even though I find it so hard to write what is going on in this crazy mind of mine, but if even just one person can relate or can take comfort in the fact that someone else feels the same way as them, then I’ve got to just get over my fear and get on with it… yes that’s me having a stern word with myself.
So this brings me onto today, I was invited to a session held by the Walton Neurology Centre and the MS Society for people who are newly diagnosed with MS. I’ve not really thought about my MS or spoke about it for a while, so walking into that room was like a whirlwind 80mph ride into the world I forget I am actually a part of.
So anyway, one of the presentations was from a neurologist from the Walton Centre. It was so useful being able to ask questions, as you can imagine, I was quite vocal. But there was something he said which actually chocked me, actually made me get a lump in my throat and sit there trying to hide the fact my eyes filled with tears feeling like a right divvy. And it was in reply to a question I asked, which in hindsight I wished I hadn’t.
MS had 3 different types. I have Relapse Remitting MS, which is the most common for initial diagnosis. This means I can have relapses (inflammation on brain / attacks ) and then periods of stability where the majority of symptoms subside. The other type which you can be initially diagnosed with is Primary Progressive MS, this is where relapses dont remit, and the degeneration of the disease is continuous and there are no treatments to help or slow disease down. And finally the third type, is where RMMS ( what I’ve got) develops into Secondary Progressive, which is the same as the Primary progressive in the fact there is no periods of “no relapses”, there is no remitting of attacks…so if I lose my sight – it wont come back, my legs stop working – they won’t start again… get the jist?
So anyway, the neurologist was explaining all of the different types and this is when I should have just stuck a bloody hob nob in my gob and been one of those people who “just listens and doesn’t ask questions” but ohhhhhh noooooo…I couldn’t help myself could I!
“So what is the likelihood of my type of MS progressing to Secondary MS (the even more horrible one)?”
As I was asking it I wanted to press the rewind button but I suddenly had a room full of people watching me, all probably wishing I hadn’t asked too (sorry!)
“90% of people with Your type (RRMS) will go on to develop Secondary Progressive in 10 – 15 years.”
I smiled, nodded and sat there thinking I’d heard wrong. But I hadn’t. Of course I’ve heard and read this before, but for some reason today, it has hit me like a ton of actual bricks, not even normal bricks, the strongest hardest ugliest bricks in the world! Maybe it’s because I forgot I actually have a stupid incurable brain disease. Maybe it’s because I’m 99% of the time positive and don’t think any of these facts or percentages will ever catch me out. Maybe, it’s because sometimes I need to stop persecuting myself to be so strong and sometimes accept, that despite me being so positive (or trying to be”) the situation is pretty shit (apologies, only word that really suffices for this rant) and accept that I am allowed to feel a bit scared.
You see I was sat there counting, and then recounting… if my doctor thinks I could have had MS since I was 25ish, then does this mean there is a 90% chance I’m gonna be blind and in a wheelchair by the time I’m 40?!? Yes. Yes. I’m being slightly pessimistic here and I should be focusing on the 10% that won’t. But you could literally knock me down with a feather at this very minute.
Here’s me thinking I was all “ok” with my diagnosis and I come out and got in the car and cried like a 16yr old girl listening to Mariah Carey after her first breakup. Yup, mascara running down my face, them big sobs you see on the movies, all I needed was some really sad depressing theme tune to suddenly start playing and I’d have ticked every box for the “miserable whimpering mess” award.
Driving towards the hairdressers (because even miserable whimpering messes, need a good blow dry) thinking I just want to cancel going away to my friends wedding later, go home, climb under the covers, turn my phone off and hide from the world (anyone who knows my ADHD tendencies will know this is THE opposite of a Rachel normal day)….so instead I sat in the car park for a bit and give myself the 15 mins I had before my appointment to feel sorry for myself. What’s so strange about this scenario, is that I am NEVER early for anything (if you are my friend and you are reading this thinking I’ve suddenly developed an ability to be on time for things, dont. My watch was fast) and secondly I always refuse to feel sorry for myself. But today I just needed that 15 mins.
Anyway, makeup fixed, smile in place I’m sat here getting my hair done and I’m going to my friends wedding and steering clear of a depressing duvet day. It’s gonna be a tough one today but I know tomorrow I will be absolutely fine. And that’s the thing, us MS’ers never know when days like this are going to hit us, even to the most strongest ones…but the important thing for me, is to get on with it, no ones knows what’s round the corner…one life live it they say, dance while you can and all that…and that my lovely readers is exactly what I intend to do (starting with a very large G&T in about 4 hours 13 minutes and 23 seconds).
Thanks for reading as always,