Last reply 2 years ago
Reality is mere perception

I wrote this after reading a post about being really frustrated at being misunderstood by family, friends, strangers.. I can’t actually find that post now, and the website was down, so it’s probably out of date now anyway, but I still wanted to get my tuppence worth in!

So I have started a new thread – despite it being probably out of date now – but here goes!

“Reality is mere perception”
Seems appropriate to quote here.

Glad we are united on this one! And thank you for posting such supportive and kind knowledge. I appreciate this and you.

The place to be understood is here. To be entirely understood by someone who has not walked in our shoes is a tall order at the best of times.

You really can’t win.
If you are brave and look fabulous, and it is assumed that you feel okay too.
If you are having a bad day, but you have still managed to clean the kitchen floor or stagger to the garage for a loaf, then it would be nice to hear “well done you! – how brave are you to carry on going and get that floor mopped when you feel so rotten”

Dream on.

We are living in reality.
A reality where there are judgemental, ignorant people everywhere, including your family…
( A relative of mine still has not forgiven me for not attending a New Year celebration – last words were “well I am keeping your Christmas present, I hope you get well soon”

I spend new year in a dizzy, sickly fug with noodle legs, Blind in one eye, shivering and tingling in bed. (They live two hours away)

I replied “thank you. I have just found out that I have cerebellum ataxia – which explains a lot.
( clearly, secondary progressive MS isn’t enough, or you are just too lazy to google it/care) I don’t really want to talk about it…. see you soon, lots of love” blah di blah di blah…
And a link for Cerebellum ataxia)

Another reality I have learnt is that having someone understand, does not necessarily make easier.
The pitying look and the murmurings of “you poor thing/you’re so brave
/I couldn’t do it/how do you cope” – actually don’t assist much either.
Having someone feel sorry for you is marginally worse than someone misunderstanding you.

You also run the risk of being spoken to like an ejit – You know when they talk really slowly and use words like they are talking to a six-year-old…

Like everyone here, I know I am fiercely brave and fiercely independent – I don’t need anyone else to tell me this.

In fact, none of us need the permission to feel the way we feel.

Only we, other people with neurological conditions (and hopefully our medical team) only really know how we feel.

To expect otherwise, is a disappointment that dawns at some point.

What are we actually hoping for anyway? Sympathy, compassion, help?

Now, if I need help;I ask for it directly and without preamble, I don’t apologise now either ( or repeat “thank you” like a buddist)

If I’m feeling shite, then I give myself sympathy and compassion.
If that doesn’t work,
I ramble on to my closest friend, if she notices or asks where I am at (or Anonymous helpline if I’m really wretched) , safe in the knowledge that she/helpline person doesn’t entirely listen to it (because I warn her I’m about to have a rant/off load) and safe in the knowledge that she will still treat me as a normal human being at the end, give a hug down the phone and remind me that tomorrow is a new day.

And, there is this wonderful site and the people on it.

Btw…Respect to the Yorkshire man for making us all laugh, despite travailing a horrible journey; he still succeeded in putting a smile on all of our faces. Thank you Yorkshire man. You have the right attitude.
Stand up mate. (hi E I think that you should do stand-up comedy – Yorkshire man are naturally funny and you sound like you have it in spades …. Id go and see the gigantically tall magic and sparkle man at a comedy club; double ironically being in a wheelchair, perhaps?)

Laughter really is one of the best tonic’s after all.

And “Understanding” really is not all it’s cracked up to be, when it comes from someone who does not have an MS.

The friends and acquaintances who do try to truly understand, make me feel just as hopeless frankly.
I hate seeing myself through their eyes. Hiding is preferable frankly.

The pity, stupid articles about eating yak stuff/cutting out enjoyable foods/miracle cures/People who have “beat MS” etc let’s be honest, make us feel like we aren’t doing enough to make ourselves better.

And the reality is, there is only ever now going to be shades of “better”

As for the rest of the world, well; even if I didn’t have MS – I still wouldn’t give a flying fcuk what they think. It’s insiduous game that does us no favours, MS or not.

Those who know, know.

(I even counsel my children regularly to give up worrying about what other people think, It’s a waste of time frankly and doesn’t add to anyone’s quality of life.)

Ironically, actually being misunderstood, can sometimes help you to feel normal…., when The reality is you feel like your body isn’t your own, your mind is jelly, and you feel totally out of control. “At least I’m winging it successfully”, can be a blessing – trust me.

So “chuck it in the fcuk it bucket” and don’t let others peoples judgements get you down.

Be grateful for the – “you look so well” comments. They can very quickly turn to
“You Poor thing!”

Sending love and light to you all ✨☮️???✨

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2 years ago

bleedin’ marvelous !
I want you to have my babies! (not litterally they’re teenagers & …. well they’re teenagers)

posts like these are the very reason why I came out of my shell recently & now live much happier with understanding & support,
blessings to you FFFF


2 years ago

Wow! I am so glad that you are feelin my vibe !
and I have to say your response has made grinning like….. well just grinning is a bonus!

This understanding malarkey is really essential, as we realise that it it’s rare to be understood anywhere else. And as humans, understanding is quite crucial on this whole life path sitch

I’ve felt much better for crashing and burning , and then getting my shit together and reading the posts here and having the courage to reply.

Cheers lovely man and
Hoorah for shift !
I will be smiling regularly for the rest of the day !

2 years ago

Love this! ??

2 years ago

Classic! We are on the same page.! Love it! Xxx

2 years ago

Too right,just how it is
Things like this are why I joined in and I have found some very similar sentiments from others which mirror my own so feel relieved it’s not just me who feels this way!! That’s so good to know

2 years ago

@mermaidia11…wish I’d read what you wrote a decade ago…really. Take care and here is a terrible joke to add to the laughs raised by @tog1

Two cannibals are eating a clown; one cannibal turns to the other and says: does this taste funny to you?

Have a great weekend guys 🙂 best, lucyh xx

2 years ago

where’s the like or lol button when you need one?

nice one @lucyh

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