Last reply 1 year ago
✨top 3 since diag

What are your top three magic and sparkles moments, post diagnosis?

5 weeks post diagnosis

I walked on stage to pick up my degree…this really was a miracle, because I couldn’t walk and had spent the previous three years staggering out of clubs…

5 years post diagnosis
…. I had a beautiful baby girl, who made my mother is dying years a joy….. she is Titian and you know what Irish mammiesngrannies are like…

So I had another one three years later. He arrived early on the bathroom floor one quiet morning. It took 40 minutes and it was over before anyone realised.
He was £9.10. I didn’t so much as have a paracetamol.

10 years diagnosis – I blagged my way onto the Pepsi Max (v high, our finest coaster) in Blackpool
(it’s like Coney Island for poor people, just so the Americans understand)

. It was a windy evening and no one else would go on with me, my ataxia and my vertigo. I crawled to the entrance and pretended I was just dizzy from the last ride… They nearly didn’t let me on, but i used a bit of magic and sparkle LOL

Life is not all about me and my children needed to experience Blackpool and leave feeling proud of their mother, more than I needed to rest.

15 years diagnosis – I had a wild love affair with a rockstar…

Stumbler will be telling us he jumped out of a plane next…

What have you had the balls to do since your diagnosis?

Respect and points will be given for things like getting out of bed and having a shower LOL

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potter
1 year ago

It has been ten year for me also. Number 1 I just got back from a trip to Arizona, looked at the Grand Canyon, climbed many ramps and stairs at Indian Ruins with the help of my husband. Number 2 I have completed five large art projects since I was diagnosed. A large 5×9 foot outdoor fountain with three spills and big basin. A four foot bubbler fountain and a 5×6 foot bas relief mural. I did the cement and plaster work on a beehive fireplace and made all of the decorative tile for it. My last project was a new big mailbox, it is a column type with a tile roof. I research tile roof parts and pieces and made molds and forms to make the tiles in the right proportions of the column. I have to give a lot of credit to my husband, I make the tile murals he helps me install them. Right now I am making southwestern/Indian pottery that I am eventually going to sell on-line. Number 3 I still work in the yard and my garden. Most of this work causes me pain and is very tiring, I just keep doing, I’m afraid if I stop I won’t ever do it again. Potter


red-suzuki
1 year ago

Gosh, thats a loaded question…..OK here goes….

No 1:-on Dx… 2011, Kind of carried on with things….. Like you kind off, was on stage, but Am Dram in local group, did panto, the Dame, comedies, Painted sets, walked in the french ‘pyrenees” still, rode & still drove to south of France on bike & in car, 4-5 times a year, loads of other stuff, which I’m having problems remembering at the mo.🤗

No 2. 2013, Still on stage, though they were adapting scripts to make it easier for me by now, Still riding, Climbed up Mont, St. Victoire (South of France)….Took over 1/2 a day, but got to the summit.

No.3 2015, Went to see Peter Gabriel at O2 & other group & venue’s, NickelBack, Metallica, Pink, etc & theatre trips on bus, Train & tube….Moved 86 Plant pots & transferd them to present location myself…..tiring, fatigued, but did it…

Don’t know if this cuts it, but I guess its the best things I can find & remember, for now.

Red


merfield
1 year ago

2015: Wasn’t yet diagnosed but awaiting the news, guessing it was MS. I was very wobbly/unsteady. Went to Lanzarote, met a newly arrived Japanese girl, there to learn Spanish. She had no transport so we took her in our hire car to the Cuevas Verdes, this involved going down a long flight of uneven winding steps where I caused a human tourist traffic jamb of 30 or more all backing up and probably wondering why I’d even tried to get down. Very embarrassing, but I made it, saw the blind crabs, then up another 40 or more equally winding steps at the far end of the underground lake without a problem. Down is always worse than Up!! It had been easy when I’d gone about 3 years earlier. BTW I see you were a Graphic Designer, Red. So was my partner, he now paints when he’s not doing things for me. Which is a lot of the time. And potter, we have a friend who is a potter. She is not an MSer.
2016: Going to hydrotherapy..walking in warm water.
2017: Keeping going…and NOT falling. Getting in and out of the shower.
Not much to talk about – sorry.


doubleo7hud
1 year ago

Well fuck a duck in its eyes, twice over 🦆👀🍆 talk about a unfair advantage iv only been official for over a week 😝 You got 20 years on me.

Iv changed a car tyre, fixed a broken washing machine, walked half a mile up hills and in a fecking bumpy dog Shite infested mine field I was very determined not to fall over in there I tell thee I did it without walking sticks too and without crawling for a change. I drove a manual car for the first time in 6 months to pick up my percription from docs. Not had a single sick day during the whole diagnosis process no matter how fecked Iv been. Carried my baby’s up to bed every night for the last two months. All simple things you’d take for granted before diagnosis, but for me now all victories in my little game of “fuck you MS I’m the fecking boss, eat shit” at last count up it was 21-0 to me can’t remember anymore tho ms fog 😂

All small things but amazing to me oh i just remembered another one playing fart tig with my two eldest boys in the garden fuck yeah ” *pwerppp!!!* pooped yer daddy” says my two year old as he giggles and tigs his Paps.


doubleo7hud
1 year ago

And another one managed a shopping trip without needing a piss or nearly pissing me keks


doubleo7hud
1 year ago

Nowts stopping me now I’m a disabled, clumsy, very off balance bull who has a bladder that’s as much use as A plate-steel trampoline, hobbling in a posh antique China shop and I don’t give two flying fecks what gets smashed or pissed on bu ha ha har *evil laugh*


julijules
1 year ago

I am new here and find you to be very inspiring.


mermaidia11
1 year ago

Well done to everyone for their stories!

I feel like cat vomit, so thought I would post something positive – we are all legends!
I’m so proud of us all , Great stories, I’m sorry, but a lot of people who aren’t sick never achieve what you guys have.
( You would never get me jumping out of a plane, not ever… LOL )

Having some idea how you all feel, makes me understand how much tenacity, bravery and courage you have…I reckon
Only special people get this, we all one day become grateful… )even if it’s just for five minutes)… andwhen it all gets a bit much….
I get all spiritual and chant that everything happens for a reason/ this too will pass/ if it rains, look for rainbows …🌈✨💕☮️👏💎✨Etc
Welcome to the special peoples club, lovely- you will find lots of supportive, kind, courageous, funny, compassionate, inspiring people here, eg as above… ….And Stumblr ( Who is too humble to mention his aerial acrobatics ) is The cornerstone of this site, always has a kind and sensitive stoical word…

You are not alone
Love and light from Liverpool to everyone ✨🌈💕☮️✨


cameron
1 year ago

This is a difficult one! There have been a lot of feel-good moments. Among the best have been leaning out on a top deck coming into Sydney Harbour, sun and wind in my face, steel band playing, thinking that even if I were never to travel again, at least I’d done this – on my own, with no help . Another was the joy of having my house full of visitors, knowing that after pulling out all the stops I had a week’s quite ambitious home-cooked meals in the freezer. Then last year I did an adventure cruise to the Hebrides, hopping in and out of tiny boats. Each day was a challenge but when I managed (using my walking poles) to walk two miles on Rum, I really felt the sky was the limit! xx


Anonymous
1 year ago

What a great post #mermaidia11. 👍🏻


doubleo7hud
1 year ago

Iv got a list of good excuses not to jump out of a plane, one is I’m too pretty if my parachute fails it will spoil me good lucks (thanks mummy 😂) two I wear glasses and would need to take them off and I can’t see for shit so there’s no point doing it if I can’t see, three they don’t make crutchs for skywalking, four they do not make posh looking flying goggles to go over spectacles. Five if I was ment to fly I’d grow fecking wings this would be handy tho and there’s a few places I’d poo on my first port of call would be Leeds united football ground (bellend road).


red-suzuki
1 year ago

Teehee…Dartho07 🤓…….use the force skywalking……..was a Leeds united fan in the Jackie Carlton, Billy Bremner era…..not sure now, some poo might be useful & help them grow more😆.

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