MS means never having to say you're soggy

I'm going to talk about MS. I'm going to speak in generalisations because MS issues are generally quite widespread, both in the type and frequency they affect their unwelcoming hosts on any random day. I'm doing it because I've had cause this week to attempt to itemise the reasons why I can't just go off and do stuff like everyone else can and somehow I need to get it together in my head to explain it properly to someone. So loosen the levers and let's roll.

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Multiple Sclerosis means never having to say you're soggy

People with MS don't often tell others what is bothering them. Fact. Why? Because on any day there can be a huge range of stupid little things mixed with big scary things going on the Person With MS (PWMS) might not want to tell the listener in specific terms.

PWMS don't talk about continence issues - "sorry I can't get up but I pissed my pants and I'd rather stay warm right now, thanks". PWMS don't talk about their erectile problems - "sorry, I can't get up".

PWMS don't talk about their cognitive issues - "sorry, I just can't see what you mean", nor will they always talk about their vision issues "sorry, I just can't see".

PWMS often don't talk about their fatigue - "sorry but I can't be bothered right now" and PWMS don't always want to talk about why they can't walk somewhere - "sorry but that ramp is too steep and there are too many steps".

PWMS seldom talk about the emotional issues that can accompany MS "I can't feel what you feel" or their lack of sensation "sorry, I can't feel".

PWMS don't talk to each other about symptoms because it often sounds like a symptom competition "my dysesthesias rises higher/further, burns/grips hotter/harder and lasts longer than yours does"; they don't talk to normal people about what they feel because that opens them up to being called self-pitying, moaning and hypochondriacs - "really, you've always got so much wrong with you, it's really boring, do you have to go on?".

PWMS don't always mention their pain. There isn't much point when it never stops anyway and a panadol or 10 won't make a difference.

And people with MS don't cry. Crying gets a (likely unvoiced) dose of "don't be such a drama queen, you just want me to feel guilty because I'm well and you aren't" eye-rolling and once started, a crying jag can take a hell of a lot of stopping. Crying makes other people feel helpless - helpless people turn off. It's easier not to feel in the first place.

PWMS live with a disease that's invisible, untouchable and inaudible and PWMS who mention their issues are often unsupported in their mission to simply be understood.

Sometimes feeling misunderstood is the hardest burden to bear.

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As for me? I live in the upper levels of consciousness and deal strictly with the 'now'; I generally avoid thinking about what I'm missing, what I've lost, what I can no longer do or have, the dreams that melted away. Looking any deeper is self-destructive. I don't look forward because on any given day, plans might not be viable. I don't look back, there is no going back. I don't talk about stuff much because not all facets of my disease are appropriate for all kinds of friends. I exist, watch the World go about their business and think "I wonder what it's like to be them" and I don't wish things were different any more.

I don't talk about my MS in any detail, I know that often it makes people feel guilty for their own good health, mobility, ABility even. I don't need sympathy; I don't need to be seen as self-pitying if I say my eyes can't focus, I can't process visual information, my legs won't hold me up and I burnt myself in the shower because today I have no heat/cold sensation anywhere; I don't need to hear that I'm a party pooper because I can't participate.

If you know someone with MS and they have any importance to you, the best thing you can do for them is to read the literature, accept their limitations, support them in both the good times and the bad and understand that "no" means just that for a very good reason, one that you probably can't understand. I don't turn stuff down to be difficult; I do it to protect myself from the stuff I can't necessarily explain to you. No doesn't necessarily mean I don't want to; it can simply mean that I can't. Wishing otherwise is pointless.

"If wishes were horses then beggars would ride" - and what a ride we would have, if only we could.

[/end MS crap]