Reality check - the outside world

[supermum_ms]

Hey Guys and Dolls

I think some of you may not understand what its like for me just leaving the 'house' but many of your will totally get what happens leaving home. You know that place where you do your thing, sitting when you have to, resting when you need to, chatting with your online friends when your brains tracking, when talking online seems to be the better way for you to communicate. House, home or maybe a better name for it is my protective bubble, that place that acts as an insolator to the outside world, that place where your reality doesn't seem such a big deal because you never need to explain your self.

Venturing beyond the walls of my protective bubble (to the outside world), brings on 'reality', that little annoying thing that makes some of us have to recognise just how incredibly 'different' we've become. Different doesn't bother me, infact i like people who are different but when its you thats different, its when you realise there's no blending in, no anonimity (ha try saying that when your mouth can't shift though vowls lol) hmmm i think i'll die my hair bright pink and start kidding my self that its my new out there hair do that their thinking about. lol

Sooooo its an intoxicatingly beautiful day, I'm wanting a new collar for HoBo because he's already out grown his puppy collar and DH just wants to have me to him self for an hour or two, just being a normal couple, doing normal Sunday morning things. No big deal, i'm feeling fine, and getting out into that crisp Autum sunshine is pulling me out the door, ha i'd even go to a hardware store and still love the experience of just being out in the real world, so simple but really heady stuff. lol He takes me to this huge pet warehouse, I lasted maybe 10 minutes before i started wobbling, doing the listing over when i stopped, and yes the communication was interupted by the occational slurr/stutter but I was outside doing normal couple stuff and sooo didn't care that my legs etc were going out on me again.

DH takes me to another store because i dont want to go home yet, so by this time my legs are unpredictable, knee and or hip pop out like i'm made of rubber, standing doesn't help, they just pop and i'm already dragging the left leg like its ten tonne, whilst the right is doing its over stepping thing, did i mention the bouncing lol oh yeah and the bouncing, ahhhh so now i'm the puppet. The heavily pregnant sales assistant is trying to work out if i'm slipping on the floor or drunk at 11am in the morning, so she asks if we need any help. Oh i'm required to do that talking thing, simple open mouth and words come out, err not so simple, ok lets all say Pandora with a few marbles in your mouth, hmmmm is that 'look' on her face because i didn't sound right or because i just did the slip and dip, whilst stuttering/slurring out one word? lol

I end up leaving him behind and wander outside, OMG my favorate linen store is open, I simply must drag my wobbly self in that direction, ha DH will find me, he has a build in radar when my credit card is itching to get abused lol. Took a bit of navigating, just getting down the ramp, which btw was a wonkie tiled slope, my brain doesn't know what to do with me in those kinds of situations, oh i'm almost giddy when i get to the bottom and i'm still on my feet. It must sound stupid but sheesh what a simple pleasure to get from a to b with out and @$$ plant. lol

I'm in seventh heaven, frozen on the spot yet still bouncing, taking it all in, the colour, the smells, the style just everywhere i look is flooding my senses, just everything making me feel so much joy, this must be what it feels like to be a kid in a candy store - sheer bliss! lol DH finds me, he's grinning, he knows, he so knows i'm enjoying my self just being in this store, with that twinkle in his eye he drawls out "I knew i'd find you here and i know its going to cost me loosing you for a minute!" lol I'm not silly, i know which areas to stear clear of, umm china ware, crystal, um anything breakable lol i want to look, touch, smell etc but i know if i try, i'll knock something over and i'm determined to endulge my senses, oh i've missed all this.

I find what i'm looking for, a peice of style that will bring sunshine and colour back to my world, my protective bubble that i'll soon be going back to. I've been out a couple of hours and i'm really struggling now, i need to go home, ready to go home so we head to the check out. Oh brother that talking thing is so not happening, we've joked and giggled like kids but that talking thing, ahhhhhh its just not coming out right, so i have to ask DH to do the talking for me, ooh crappola i have to sign my name, i look at DH and say 'caaghrrrnnn nnnt tt t' so he picks up the pen and signs it for me, like its a normal interchangable choice thing, it doesn't matter its just for their store records. ;D

I know i need to rest, to sleep it off so i can function again, but i dont want to, know i have to but still I dont want to, so we head home to our boys because need trumps want. DD calls so i pick up the phone, not thinking, just happy to chit chat with my beautiful girl. Um its oh so trippy trying to communicate with my Aspie girl but she clues in fast enough that i'm not traveling right and listens, listens hard and picks up most of what i'm saying, and fills in the blanks so its all good. I hang up still blissed out, wake 5 hours later and ummm that talking thing is still not happening yet, bugger!

That beautiful day was yesterday, still can't talk very well, tremors etc are still ruling the nest, but it was soooooo worth it to me. It got me thinking about reality of home vs the outside and what we'll deal with to get the experience, to feel, to smell, to touch lol i'm a sensory kind of girl and yesterday made me realise the little things that I need in my life and to get it what i'm willing to do, so whats yours, how far will you go to get what you need?

Cheers...........JJ

ps this may duplicate because of system hick up or just me being me whilst posting lol            

[supermum_ms]

GG - that lady sure was prepared, i bet she had a packed lunch stashed somewhere too. lol

ROFL what i really need is a giant baby walker, at least it would stop me going over in all directions, and when i'm pooped at least i could sit and chill for a spell lol

Chris - enjoy seeing your son graduate, and have fun at the party, twinkle toes!

Cheers..........JJ

[saucygrl]

My son graduates from high school tomorrow.  I know I'll be able to get in, but you have to go down a lot of stairs to be seated and up them to get back out.  I won't miss it for the world, but then his party is on Saturday.  I didn't have a choice about the date because we're having it with his girlfriend and her family.  I'm just hoping for enough recovery time between the two events that I can enjoy the party!

Chris

[Guitar_grrrl]

Ahh, JJ - a woman after my own heart!  Yes, we do things that we know we'll pay for a few days afterward, but to me, it's ssoooo worth it!  Sounds like you had a blast, yesterday!  

I'm wondering if a rollator might be a good tool for you.  It's great for keeping your balance together, and many of them have built in seats so you can rest when you need to. I saw a woman at Maker Faire with one, and she had attached a PVC pipe with an end cap at the bottom to hold her cane.  The pipe was held onto one side the rollator with hose clamps.  She had an identical pipe set-up on the other side that held her parasol (hot and sunny that day).  I tell you, this woman was prepared!

I'm still paying for Maker Faire, today.  After the breakfast dishes this morning, I had no choice but to lie down.  I need to go into town, today.  I hope I can muster some energy for this!

[supermum_ms]

Dennis, i'd love to hike in the bush too, lol DH still expects me to take photos but lol they are either to blurred or if its an action shot, by the time i've reacted theres nothing there anymore. I keep saying theres a delay between pressing the button and when the camera takes the shot, but apparently thats just me lol

Alex, I so agree we are unigue and we do matter!

Chirley, table service is kinda lacking now a days, hmmm i still miss the ease of meeting up with the girls at a cafe, cap and large slice of berry topped cheese cake to share along with a few giggles and groans. lol

I think at the end of the day, sometimes its more necessary to get out and smell the roses, than it is to think about how much its going to cost you to do it!

Cheers.........JJ

[teenyturner]

Has anyone noticed that hardly anyone provides table service any more?

I rarely go out because it's a production bigger than Ben Hur, but when I do I like to stop for coffee or a meal and feel normal for a while.  Alas, most places expect you to take your coffee, cake etc to the table yourself.  I simply can't do this.  I've had to get over my embarrassment and say straight out that I can't carry anything (how you carry it and wheel yourself too is beyond me) and they need to provide table service.. Most of the time the staff are really nice but I do get the occassional sigh and roll of the eyes.

Regards

Chirley

[tingletingle]

Seize the Carpe I say JJ!

Sometimes you just gotta do what you gotta do eh? The weather was magical yesterday and again today in the Southern Hemisphere. In our little corner of the world the trees have turned a delicious colour of bright orange and red. Simply stunning.

Inside our minds we are still the same I think, mostly but when I am having a turn boy do I get some crazy stares like you. We are unique and we matter. If you feel the need to shop till you drop lol then go for it.

Thanks for sharing your MS journey.

Blessings
Alex

[Sailorsong]

I so get what you were saying in your post and it did sound like a wonderful day for you. There would only a few changes in the story for me.

It would be hiking in nature instead of a store, wildlife instead of a piece of style, and shaky photos instead of stumbling speech. I try to make at least 2 such trips each year before it gets too hot or too cold for me. But it has been a year since my last trip out since the weather has not produced a spring or fall here of late. This is one of the main reasons I am hoping that the VA will give me those Walkaid foot drop systems. Between the heat/cold and how much work it takes me to walk it makes it impossible to take those trips any other time of year. With the Walkaid maybe I will have more opportunity for the trips if I only have to worry about the weather.

Dennis