adam
Forum Replies Created
-
“I used to have a somewhat negative view of life with SMA and a disability. But I’ve been able to see that life truly is beautiful, especially with SMA. It makes those sweet moments that much sweeter.”
Does it? How’s someone whose always had SMA make that call without having experienced an alternative?
Sorry to be cynical but if she woke up tomorrow fit, healthy & able I don’t believe things would be less “sweet”.
-
Great question. I’ve been wrestling with the same thoughts but around cooking. I have cooked and loved cooking since I was a little kid. All my mum, grandparents, aunties, uncles etc. could cook but by about 17 I was better and that became my thing; family gathering? What’s Adam got on the menu?
It took me ages but I loved preparing everything. Chopping it all just right, all that meticulous boring stuff most hate, I loved, was like meditation.
Now I can’t do any of it. I’ve still got all the ideas, techniques and everything else to make good food in my head.I can direct someone else how to do most that stuff pretty well (frustratingly never to my liking lol) but no matter how good the dish turns out I never get the same satisfaction as I did being hands-on.
Basically it’s always a “we made this” approach from me. Unless they really didn’t listen and stuffed it all up, then it’s all on them haha
-
Simple fact is there is no vay-cay from this. In fact going on “vacation” is more stressful than just staying in the holding pattern of everyday life.
I try make everyday a holiday; sleep late, drink too much, eat what I want, whatever – I aint getting any healthier anyway & life isn’t gonna improve as I age. Eating is difficult now & booze is ruined through a straw so what’s to lose?
-
Always driving or at least in my chair in a vehicle. Whenever in a vehicle almost always the driver is the cab driver who drover me to school & back for 7yrs. He killed himself nearly 20yrs ago.
When just in my chair I’m either really skilful (usually back playing sport) or my battery is dying and I’m traveling uphill and I can’t do something I gotta do quickly enough.
On the rare occasion I have the floaty 3rd person dreams I’m usually out on the open ocean filled with anxiety what’s beneath me or behind me.
That’s not even the half of it but I love sleeping & dreaming. Sometimes an old dog or loved one shows up & it feels real & awesome. Waking up is the sucky part.
-
Never heard of it. A whole month hey? Everyday here seems devoted to a cause with its own colour ribbon so I tune out.
I used to hate International Day of People with Disabilities (or whatever it is) when I worked. Became like a mascot and it felt like people went out of their way to engage in pointless conversation with me.
Personally I think its like a company putting a rainbow in their logo for LGBT – its just an advertising/virtue signalling cash grab that does little to nothing for the cause.
-
F Is For Family on Netflix.
Cartoon by Bill Burr set in 70’s. If you like his comedy you’ll like this.
-
Guys with MD I played sport with 15+ years ago used gel like pouches they’d snap to release heat & you could boil them or something to re-use.
I found a chemist a couple years ago that had these little tea bag like things you rub in your hands & they get hot for 50cents each. I brought em all. They helped warm my right hand to help my left hand but I’d prefer some constant heated environment around my driving hand.
-
Yep totally get you.
Especially “It hasn’t clicked that if they put the cup in a specific spot now it means they won’t have to get me something to drink down the road.”
Take an extra minute now to get it right & you won’t have me complaining later. Simples!
As Blake says they’re being paid too. Sometimes its hard not to raise your voice & say “well thanks for your input but I’d like this done that way & since I’m paying could you kindly do your F-ing job!” I’m a very easy going bloke who doesn’t like to make things difficult but when it comes to my needs its not a democracy, I’m supreme leader & whether you agree or not means bugger all to me.
-
I told my needle giver “I’m gonna look over here & continue rambling & you just stick me without any warn-” and she says “all done!”
I have an irrational phobia of needles. Anyone describing how far its going in etc. would have to chase me down the street! I had 3 beers, some weed & meditated before they got here to calm the nerves lol
-
I’m in a whole different country so I have zero knowledge in regards to your particular situation.
Personally I’d take the place and tackle the other BS if/when that crops up. You’ve already done a lot of working & waiting to get this far, I wouldn’t flush all that too easily. Right now you got no unit & a potential problem – you could have that potential problem as well as the unit.
As long as you’re not opening yourself up to any legal blowback the worst that’ll happen is you wind up where you are now. With a bit of luck you move in, live your life your way without whatever issues they think you’ll have and no one bothers you. It could be more hassle for them to push this nonsense if you’ve already got the place. If your bureaucracies are anything like our’s they’ll usually take the path of least resistance, so if they are gonna push it make their lives as difficult as possible – it’s only fair to return the favour 😉
-
I figure I’m toast if I get C19, that’s almost certain to happen without the vax. The vax like anything has risks too but the odds are much better. I’m more likely to die in a road accident on my way home than vax complications.
I’m interested to know what “I did my own research” involves for people who say that. Like, you been slaving away in the laboratory utilizing all your years of medical expertise to come up with some stuff 1000s of scientists & docs across the globe might’ve overlooked?
Speak with your trusted professionals.
-
Ketchup every day – 3 times daily even is preferred over hitting dog crap once! Ketchup doesn’t smoosh into the tread of your tires and need to be picked out with a stick. Ketchup will rinse away under the hose. The smell might linger but I’ll happily sniff & even eat ketchup, I’m not going near dog poo.
Run over a full tube of toothpaste once, that was messy, got smooshed in but smelled minty fresh.
-
Bit like Alyssa, never been stung so dunno if I’m allergic. My grandfather was highly allergic to bees.
Neither a bee or spider will hurt you if you do nothing but while both would make me squeal I’d prefer the bee.
Spider will look for somewhere dark & warm & can only run. It’ll likely crawl into my shirt. If a bee lands on me its taking a rest, not looking for a long stay so it’ll fly off eventually as its got a job to do & can simply fly away. Spider gotta scoot all over me to realise I’m not home.
Yuck all round but. I don’t kill em anymore but not a creepy crawly fan at all. Snuck watched Arachnophobia as a kid & ruined myself.
-
My room is a sauna. Rest of the house do whatever temp ya want just don’t expect me there.
I’d rather be warm & alone than cold & social.
-
People asking my mum what I thought or how I felt when I was sitting right there drove her up the wall.
-
I got a pretty sharp tongue & quick with a joke so I’d back myself to make the baby talker look like the dickhead they were.
Probably nothing angers me more than being ignored. Or seeing people ignored.
I hate conflict but I’d rather the opportunity to engage & argue/fight than be ignored altogether.
-
Absolutely bad mood right off the bat! As if being hungry doesn’t make you grouchy already you just wanna hop outta bed & go cook/order something & devour it. But by the time I’m up & ready for any of that I’m over it.
-
Yeah, I think I always dream but only remember maybe two or three every few months. They are very vivid while others just seem to fade away in my memory no matter how much I try and recall them when I wake up.
Dreams fascinate me. Like your brain is powering along while you’re out cold, with almost no control over any of it, your brain is taking you to places, times and people you can’t access any other way.
I feel now I “dream backwards”. As in, I used to dream about doing things in the future. Now my dreams involve me doing stuff I can’t do anymore. The other night I dreamt I was eating a hamburger, I could hold it up to my face with both hands and take a decent bite. I wake up hungry and remember it would take someone to cut up the burger and me 45 minutes to eat it.
-
Very well put, Susana.
-
I despise the wasteful commercial aspect of xmas & refused the trading of meaningless crap with others for a while now.
The festive season is also peak drought & fire season in Oz so I make donations to places that help the injured wildlife or deliver water to farmers.
The best way to let people know would be to tell them you’ll be making a donation instead & if they wanna do something for you they too should make a donation. How easy that’ll go depends how materialistic your people are lol some people I found can get incredibly childishly sensitive about xmas gifts.
-
They showed up 2hrs early because the vax was gonna reach it’s “too long outta deep freeze” or something. I was in bed still.
2nd shot knocked me round a bit for 24hrs. Worth it but, now I get awesome 5G and Bill Gates talks to me in my sleep.
-
I headbutted my family doctor when I was like 8 in an attempt to stop him taking a blood test while my mum & grandfather held me down. My veins have always been hard to hit too so never was a quick or easy process. They’d make me push my manual chair around the car park for ages beforehand to try get the veins pumped up & easier to find.
Jab in the flesh of my arm doesn’t bother me like the idea of a needle piercing into my veins though.
Only about 10 days left to psych myself out for the 2nd shot lol
-
This sounds like an absolute clusterfu … umm, schamozzle. Like no one who should know knows anything or are just passing the buck hoping you shut up & go away.
In situations like this I hit the phones & break balls until I get answers. If I don’t like the answer I become a pain in their bosses arse. Threaten things like going to the media, litigation if their incompetence leads to dangerous outcomes for you etc. Government departments here piss themselves over that stuff.
You’re from New Jersey? If all else fails invite them to Satriale’s & make em an offer they can’t refuse lol (sorry, just finished a Sopranos re-watch).
Seriously though this garbage makes me see red & I hope you can find some answers. If you’ve got some links to the relevant stuff I’d be happy to have a look see if I can make some sense of it. Again different country but I used to work on government BS red tape stuff so maybe its similar.
-
Absolutely. Like I’m good for a chat, argue a point whatever but I’m at a distinct disadvantage having just woken up & you’re discussing something that happened while I slept. I realised these people aren’t interested in conversation, just like having their opinion heard.
1 dude was awesome at his job but couldn’t stop with US politics. It’s mandatory to vote here & I don’t so imagine how interested I am in foreign politics.
The other fella wasn’t interested in dialogue. Once tried to explain why he always drives 15km/h above the speed limit & how that basically makes him the smartest & safest driver. Mind numbing stuff. Also talked down about other clients & shared details he shouldn’t so if he’s saying it to me about others whats he saying about me to others?