Must try harder!

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Come on, let’s not beat about the bush, we have all, at some time had to put up with people making, what we perceive to be shitty comments about our illness or maybe they just do something that really pisses us off when we are talking about our MS… My bug bear is that they ask how we are doing, but the way they ask means they either can’t or don’t want to understand the answers we give.

I know they mean well and are trying to make me feel good when they say “but you look so well” but in my head, they’re saying “maybe you’re not as ill as you make out”  – it’s a vicious circle… I’m living my own version of Groundhog Day… Arghhh!!

Maybe they think we talk about MS more than we should, well I’m sorry but on any given day I actually don’t have much else to talk about – I have a chronic illness – get over it!

Since my diagnosis I have had to bite my lip and awful lot, in fact, it’s a wonder I am not sitting here, lipless from all the chewing.

As I chew, I find I’ve also added the “up yours’ head nod into the mix – you know the one where you tip your head to one side and nod rather than go to the constant effort of trying to explain what you’re going through. I’ve turned into that bloody annoying nodding dog in the back of car windows -pfft!

Obviously, I have been through a hell of a lot, how could I not talk about it? I appreciate that they may not understand but, I just wish that, for the sake of my sanity, they find a way to construct a sentence about MS that isn’t going to make me want to punch them in the face. In a bid to avoid internal combustion, I find It’s just so much easier to say “I’m fine” to any questions about my health. Been there, done that – move on!

So, in an effort not to be charged with culpable homicide on a regular basis, I’ve made a list of things we multiple sclerosis warriors would like to hear. I’m not looking for a quick fix or “make it better” solution but I just want – no need, people to show a little empathy by trying to listen and learn.

Here we go…

Do’s

I don’t have MS, so I can’t even begin to imagine what you’re going through every day…

I REALLY want to do something for you, so please let me know what I can do…

I know you are at the end of your tether

I’m here if you want a good cry

I’m here if you need to vent – you speak, I listen

I know that how you look hides how you’re really feeling.

We’d love you to pop over for supper but if you aren’t able to on the day, we will understand.

I’m really struggling with the MS thing, so be patient with me, I’m learning as we go

I’m feeling really tired today but I know that your tired is on a whole different level

So sorry that you are feeling crappy today. I hope you feel BRIGHTER tomorrow.

Me:  That’s so sweet, thank you (FINALLY!)

Do Not’s (don’t poke momma bear!)

But you looked so well the other day… ME: it’s called makeup and a shit load of effort,

You slept ALL night, how can you be so tired? ME: FFS!

 I know of someone’s uncles’ sister’s friend who has MS but has been symptom-free for 15 years… ME: Simple answer -lucky bastard

That person on the telly with MS seems ok, why aren’t you? ME: Perhaps because they have shit loads of money and can try all these new fan-dangled treatments and travel the world searching for THE answer!

You can’t feel that way ALL the time… Me: Let’s do “Freaky Friday” and change places for a day, see how you fare!

Maybe you just need to try a little harder. Me: WTF – It’s like a hoover has sucked all the energy out of me. I feel like a deflating bouncy castle most the time

You always seem to be away with the fairies in the middle of a conversation… ME: It’s the damn brain fog, a real pea souper most of the … er, what were you saying!

I know exactly how you feel! ME: I’m sorry I can’t hear what you’re saying for all the steam spurting from my ears!!

Once people accept that invisible symptoms are very real, life will be a lot better for all of us and I won’t have to be a lipless wonder for much longer!

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2 thoughts on “Must try harder!

  1. After a particularly difficult period where I was fitting and waiting to see the neurologist (turned out I have epilepsy) my sister came out with this lovely sentence… “I get you’re ill, but I know people worse off and they don’t go on about it all the time. I know someone who’s been diagnosed with a brain tumour so your problems are irrelevant”
    My other sister was diagnosed as celiac and when I told her I’d fallen during a fit and fractured my cheekbone and eye socket she said “At least you can still eat bread!”
    They’re a rather unsympathetic bunch in my family!

    Like

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