Alright, alright, I hold my hands up. I’ve been a bit of a fraud on this blogging front the past few months, neglecting my habit of writing incessant amounts of waffle, documenting my Bridget Jones style brushes with injuries/accidents and disasters, and importantly keeping the narrative flowing about my little ol’ journey with Multiple Sclerosis going. Needless to say, this by no means the Bridget stuff hasn’t been happening… *insert face plant emoji here*.
So, here I am, sitting in bed, laptop on knee, doing what I do best when my MS rears its ugly head, sneaks up behind me and knocks me off the imaginary 6 inch stilettos that I still can’t wear, but for some reason have no trouble still buying (go figure eh?!). It has a funny way of doing that you see, just when you’re in the flow of forgetting you have one of those incurable brain diseases, it likes to just remind you that “heyyyyy Rachy, I’m still here, don’t you be forgetting about me!”.
Now before I go full into full on waffle mode, I just thought I’d do a little refresh about MS. You see, it’s a difficult one to explain, and if you haven’t had much experience with it, it’s a hard one to get your head around. So, in my “I’m just a patient” amateur description, here goes….
Everyone goes on about our immune systems, how to improve them, what we can do to boost them etc. they even get vilified for that nasty cold sore that pops up just before a big night out. Well, my immune system is now a bit different. You see, it still fights off those pesky germs and viruses but you could say it’s gone a bit rogue. Because, now it attacks my brain and my spinal cord (todays bombshell).
So, off it goes into my brain…finds a nice big juicy part of my nervous system (your bodies wiring system) and has a good old chomp. Yup, my immune system eats away at the coating on my nervous system, aka the Myelin Sheath. Now wherever my immune system decides to attack/have lunch – determines where I’m going to feel the damage, because each bit of our brain controls a different bit of our body …you still with me?
So when it attacks, also known as a “relapse”, it leaves things called lesions behind…which means when you have a brain scan you have these white little matters show up…I like to refer to them as glow worms, but each to their own eh 😉 Now these lesions basically means I end up with bit of a short circuit issue going on…like one of those dodgy iphone cables we’ve all got…so the signal/charge can’t get though and I can lose mobility / my sight / use of organs / numbness / paralysis / pain / fatigue…the list goes on and on and on….but hopefully you get the jist. For the proper grown up medical descriptions, the MS Society website or MS Trust do it much better than me.
So, back to today, basically I found out that my MS has started attacking my spinal cord, meaning my right arm feels like one of those ones on a Barbie doll that you could pop in and out and twist all around (Yup closest similarity Im ever getting to Barbie, can’t blame a girl for trying eh)….it’s numb in places, weak and hurts. In the Walton Centre today, they confirmed it’s a relapse on a particular section of my spine, and now I have to take super strength drugs to try and reduce the inflammation. All of which is a bummer, because the treatment I’ve been having the past 6 months isn’t doing what it should. Grrrrrrrrreat.
Now apart from today being the first time I have had an attack on my spinal cord, it was also a first for another reason. Today, I wasn’t sat on my own as the neurologist broke the news Today I had my lovely boyfriend sat next to me, who wasn’t expecting the kind of news that we got, who looked a little bit shell shocked and who still kept a smile on his face, bought me a hot chocolate and told me “everything was going to be ok”. So, because of him, even in a moment where on paper I should be feeling angry at life, annoyed at my rebel immune system & moping like a sad sack…. I actually felt really really lucky to have such caring, thoughtful and genuinely good man by my side. Always looking on the bright side of life really does the job.
So, there we have it, I’m in a relapse period, with a dodgy arm, a brain that’s taking a bit of a battering, new glow worms on my spine and a boyfriend who has just brought me a sausage butty in bed, waited on me hand and foot and has promised me a nice G&T on ice at the weekend. It could be a lot worse couldn’t it.
So, no they can’t cure MS, no I will never get better and no, I don’t know what the future holds for my arms, legs, eyes, brain or spine, BUT what I do know is, and what I stand by when talking to any of my fellow MS warriors is this, don’t worry about tomorrow and the things that haven’t happened, or what you haven’t got…keep them eyes firmly affixed on what you HAVE got, and appreciate it ALL, paying special attention to the small things, because they are by farrrrr the most important and quite simply, all that matters in the end.
Anyhow, I think that’s enough waffle for my first post in months. Thank you so much for taking the time to read and help me, in this very small way, of raising awareness of my little journey with MS.