Allow me to introduce you to my MS a.k.a. MuSh #myMuSh

Let me start by saying, writing this particular blog has turned into a bit of a re-branding exercise for me. I'm not too sure my sarcasm was always understood (this condition has never actually been fun) then again, so much both mentally and physically has changed for me. MuSh is how I think about this illness and what it has done to my brain, quite literally. Anyway, it wasn't what I intended at the outset, so please bear with...

I've discovered so many terms online when it comes to MS, or the MonSter as it's often called. In many community groups on social media, we call ourselves warriors, troopers, etc. There's a whole raft of MS memes and phrases like “I might have MS but MS does not have me” and they're banded around frequently. One of my favourite support groups on Facebook is called “MSed Up” which is so apt. Thankfully, having some like-minded online friends and their support are a godsend.

The one about MS being a thief, is the one that shouts to me the loudest, as yes, MS has stolen so very much. I've also heard MS called a “snowflake disease” and this is so very true, our lesions can be anywhere on the brain and spinal cord. This simply means that whilst we may have some broad similarities, we all have our very own, individual version of MS.

MuSh came to mind when I saw my first brain MRI, I was given a 'likely' diagnosis on the basis of a spinal MRI, so I had started looking online at what I might expect from a brain MRI. I remember seeing it and correctly identifying “Dawsons Fingers” (google it if you wish to see, it kind of looks like someone has dipped their fingers into the very top part of the brain, leaving visible traces behind). When my Neurologist commented there was some inflammation to my sinuses, I just giggled because I've had sinus problems for years. My husband on the other hand said aloud “they're just wiggly lines”, as he came to the stark realisation that I will always snore! Moving on to the lesions (because Multiple Sclerosis literally translates as multiple scars) the main one on my brain stem was so much larger than any of the lesions I'd seen in my research. So I guess at that point, I was just so relieved I was still able to function at all.

MuSh seemed to apply not just to the evident scars but the nature of the complete confusion MS causes. I only really understood this when I read about neurological pain. Neuro pain isn't the 'ouch!' you get from stubbing your toe, that's normal pain. Neuropathic pain is the weird stuff, like the electric shocks that sometimes run down my spine when I tilt my head forwards (l'hermittes). There's far more odd sensations we can feel, like temperature, numbness, tingling, burning, sharp pain... because it is literally the confused messages, as our nerves try to send messages through effectively, uninsulated wires. I was irritated by a small trickle I'd feel on my lower back (near my left kidney), whilst drying off to get out of the shower... one day I actually touched the area with my hand and realised it was in fact quite dry. Yet I felt that trickle for so long, I just assumed my towel skills were somehow failing me. When it feels that real, it really can trick you.

The physical weirdness isn't all in my MuShy head either. My right foot really is cold for about 95% of the time, not a little cold but freezing. If ignored, my toes will turn purple, obviously I'm not likely to get frostbite but all the same, it still freaks me out! So it's frequently massaged and usually wrapped in an over the ankle fluffy slipper most of the time. I'm not joking either, in the August heat, I was wandering around in a long linen-blend t-shirt... with my Christmas slippers on! Oh, and the other 5% of the time it burns and that's horrid, way worse than the cold as I don't often feel like I have a cold foot but the burn feels pretty nasty.

Mobility aside, my most obvious symptom is nystagmus. I understand that this is quite literally due to the muscle weakness in my eyes. One eye jiggles up and down, the other eye from side to side. It can look a bit grim when my eyes look in different directions, I'm not quite as crazy looking as Marty Feldman (I just see his Young Frankenstein character Igor in the mirror, when I'm trying to take off my eye make-up) but I often wear an eye-patch. OK, not often enough and I must try harder.

And then there's my cognition (or lack thereof) and this is where it gets even messier. My husband now understands not to hurry me for an answer, to any question. If asked a question my immediate response usually won't be correct, or what I actually meant to say, or even make any sense. It's tough to admit this because I used to be reasonably intelligent. Now I cringe at those cute little Facebook reminders because, I get to see all of my spelling mistakes and grammatical errors. I suppose spotting them now at least means there's still something going on upstairs, but all the same, it's annoying. I'm often unable to find the right words and I do understand that it is probably partially an age thing. However, being unable to locate names (in a timely fashion) is no doubt going to be really embarrassing one day. I'm not talking about vague acquaintances here, it can happen with my siblings. Yes, I know I have quite a lot of them, but all the same, they're very individual to me. At least for the time being it's mostly my Mum or husband having to guess who/what I'm talking about. I will try to hang on to what I can and for as long as I can but I clearly can't make any promises.

In the MuSh that is my brain now, I need to focus a little so I'm going to try to make a post a day – nothing too serious but a blog, tweet, an Instagram pic, music link or little hints/tips for coping with MuSh. The storage part of my brain seems to be sparking up all kinds of random stuff right now. Again this is probably largely due to age but when I wake in the morning with a tune in my head, I can still be surprised. I think my brain needs to overspill and that was my original intention for starting to write a blog, I think that's a solid enough intro to my MuSh for now. x

#myMuSh