After our interminable wait in MS Limboland, after our diagnosis, after our anguish of coming to terms with MS, just how do we show our MS to the world?
I’m only wondering as I’ve gone from one extreme to the other in the space of a month.
Four weeks ago I was catapulted back to square one, with the worst symptoms I’ve had since the very beginning of MS. I was rigid with panic, terrified as to what it could mean for me and The Teenager.
I was pretty much unable to function at all. In the last few days though, I’m suddenly on much more of an even keel.
It goes without saying , my despised eternal enemies – foot drop, heat-intolerance, fatigue, not-working hands are still here and no doubt always will be.
Who’s idea was it to buy the kitten two ‘fun play-tunnels’? She probably has more fun watching me trip over them than running through the pesky things and batting the tied-on plastic balls at each ends. She strategically shifts their locations around the room, so when I come back from work, she sits back and waits for the hilarity to begin before rushing to her food bowl and looking at me with huge, pleading eyes
So if I’m confused by this rapid turnaround of symptoms, how do we explain this to other people? And how do we come to terms with the fact that it might not last. Or maybe it might. For a while longer. Or maybe not.
I’m sure my friends and family are realising that I’m just not the same person they used to know. One day I’m fine. The next I’m not. Essentially, MS is always, always at the forefront, no matter how well it’s behaving itself. I try to shove it down, squash it into submission but it’s forever seeping through the seams of my life, colouring everything it touches.
I think it’s got to the point that whenever I meet up with someone, the first thing we have to do is establish where I am on the MS-Scale. After that, what should I do? Brush it under the carpet? Dismiss the hateful symptoms with a wry laugh? Or bore them rigid with dark fears?
There is no easy answer. I worry that ‘what’s she banging on about (again), she looks fine‘ is lingering in their minds; I run a house, I’m raising a Teenager single-handedly, I’m taking a Master’s, I work. I can’t be that bad?
I wish people could see the network of mechanisms behind the scenes – the forward-planning, the endless lists, the time-management. It’s exhausting. I’m like one of those ducks – calm on the surface, gliding along, but with little flappy feet frantically pedalling, unseen.
It one hell of a ride, isn’t it x
It surely is! Been a bonkers time recently and just about getting my head around it! x
It’s a bugger some days! Currently, with the spring weather (aka rain) I am loathe to let the dog out to do his business, as inevitably, he comes back in with mud soaked paws, which require me to get down on my knees to wipe and dry…and then attempt to try to get back up! One of these days I’m sure I’m going to tear off the handles of my pantry door! LOL
I (only) have a kitten. But she’s an absolute, well, nightmare. Awake all day and all night, meh.
only those that endure the symptoms know that every step we take, with canes or walker, requires a huge amount of brain activity that everyone else takes for granted. Right foot first but don’t follow through too far or knee will lock up. Drag left foot forward but try to lift to avoid foot drag. Shift hips forward to start right foot again, etc. exhausting!
So true. So much planning, so much forward thinking. It’s crap 🙁
I used to be based in our organisation’s FORWARD PLANNING UNIT…nowadays that name does take on a whole slant!
Head in the Sand…K sera seraaaa…………
That sounds like a life with MS!
My least favorite statement! “But you look so good” I know people really mean well, but no one that hasn’t been there will ever truly understand. I was never a procrastinator, & I still,don’t believe I am, it just takes so much energy to do the simplest tasks, the question becomes “is it that important to do today?” One day at a time is the only way to deal!
Very true! You just know when you wake up what kind of MS day it’s going to be. I try to plan ahead so much I never really know what day it is!
I UNINTENTIONALLY omitted the word NEW (before slant) and I chickened out and used K instead of Que…or…Ce….
What Ever Will Be, Will Be
Not a Duck sweetheart, a Swan! X
Aw, thank you!
Thank you for this- I have no MS friends and I always find it hard trying to explain what I experience and yes I make look fine, but right now at this moment I don’t feel fine. I too am working full time and trying to get my degree. It is hard and challenging- especially this past winter- everytime I ask for an extension- some weird voice in my head says I am faking. I am lucky I haven’t had a relapse in 2 years, but I have the symptoms that seem to always pop up in times of stress. Thank you for your blog.
I know exactly what you mean – I may have to ask tutor for an essay extension but I’m sure there’s a little thing in the back of his mind wondering if I’m faking it.
At the moment, my MS is under control but I still have symptoms and like yesterday, when my legs played up badly (so much so I went to bed mega-early), MS still has the ability to strike back viciously.
Essentially, we just never know from one day to the next what it’s going to be like!
MS is so,oo demanding when one has so,oo little energy to deal with it. I know that if I fall over I cannot get up unaided and even best friends get that “Oh no not again” look in their eye when you have to call them for help. I some times think its a bit like mountaineering, every step, every hand hold has to be thought through lest you should fall, OK not fatal, but those “oh no not again” looks sure are painful to see. All in all it is a bit of a bugger. But everyone tells me I look “so,oo well”. I’m practising my wry smile.
Know what you mean about the wry smile and for me a lot of my symptoms are invisible, so very hard to explain. Getting to the point I don’t explain any more!