THE GOLD STAR LIST: people and things that enable us

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Re: THE GOLD STAR LIST: people and things that enable us

Postby Amyy » Fri Feb 10, 2012 4:06 pm

I have no idea what i would do with out my boyfriend and friends!
I am only 19 and my boyfriend is only 17..18 in March.. But he happily helps me with everything..cooking and washing to helping me in and out the bath on my bad days :') He tries to stay awake with me at night when i can't sleep with a movie or two. Then there is my best friend who is also 19 and also has HMS! He isn't on the forums..yet. When im down and sick of feeling trapped and rubbish he will usually send me a pizza or randomly appear on my door step with my favourite drink and snacks with a few movies :') :3
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Re: THE GOLD STAR LIST: people and things that enable us

Postby sheppeyescapee » Fri Feb 10, 2012 8:44 pm

Many many gold stars this week!

- Dr Cohen
- Physio
- OT
- Nurses on the ward
- The other patients that got help when I blacked out at lunch yesterday
- The porters that have been pushing my chair up and down the hills at Stanmore! Poor fellas.
- The rest of the team at stanmore, I'm sure there are a lot more people!! They have all been fantastic :dance:
J - 28,student,married to the lovely Em and live with 2 cats Bilbo and Pippin. Diagnosed with Aspergers, Dyspraxia, Dyslexia, EDS-HM, Mild Asthma, Chronic Pain, Chronic Fatigue, POTS, Syncope
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Re: THE GOLD STAR LIST: people and things that enable us

Postby trekster » Fri Feb 10, 2012 9:06 pm

Pleased it is going well for you mate, going to ask my rhemy to refer me next time i see him.
Alexis

Aspergers, Fibro, OCD, C-PTSD, insomnia, dyslexia, raynauds, mild carpel tunnel, gluten and dairy intolerance
part time wheelchair user.

HMS diagnosis 27/9/11

Feel free to PM me about adult autism social groups in the Bristol and Bath area.
trekster
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Re: THE GOLD STAR LIST: people and things that enable us

Postby trekster » Fri Feb 24, 2012 2:07 pm

http://www.firstgreatwestern.co.uk/Your ... ty_app.pdf

Might enable someone to get a seat on the train. For those expecting you can get a temporary one as well.

http://www.firstgreatwestern.co.uk/Your ... ted-travel To book assisted travel on a FGW train.
Alexis

Aspergers, Fibro, OCD, C-PTSD, insomnia, dyslexia, raynauds, mild carpel tunnel, gluten and dairy intolerance
part time wheelchair user.

HMS diagnosis 27/9/11

Feel free to PM me about adult autism social groups in the Bristol and Bath area.
trekster
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Re: THE GOLD STAR LIST: people and things that enable us

Postby Chloe♥ » Sat Feb 25, 2012 12:01 am

I came home from uni this weekend. By the time I came to change from my second to final train, I was in so much pain I was just thinking, I need to get out of here, I need to move, ohmygod. Ohmygod. So the doors opened and I bolted. As a result, my bag was left behind. I had my handbag, but not my backpack.
I got to my home station, asked the lovely chap there, and he rang the train manager and spent quite a while talking with him. He told me that if they found the bag, he would be able to get it to a nearby town for me to collect tomorrow. I was beside myself - my pills were in there, if I got the bag back would my laptop still be present? etc.
Two or three hours later, I got a phonecall. Not only was my bag found, but it was THERE, in the station in my hometown. And completely intact.

So, things and people that enable us - brilliant East Midlands Train staff and wonderful station staff who went above and beyond the call of duty to get my things back to me. (And I didn't even have to tell them I had pills in the bag for them to do this for me.)
Twice as much ain't twice as good,
And it can't sustain like one half could,
It's wanting more that's going to send me to my knees.
Gravity, John Mayer.
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Re: THE GOLD STAR LIST: people and things that enable us

Postby nat05 » Mon Feb 27, 2012 11:44 pm

My fab bf has been great esp with a lot on his plate too. Are apart for week but just knowing he's there for me gives me so much comfort. Xx
Powered by fairy dust - could explain a few things now i think about it tho!
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Re: THE GOLD STAR LIST: people and things that enable us

Postby trekster » Tue Feb 28, 2012 2:55 am

really pleased you got your bag back.
Alexis

Aspergers, Fibro, OCD, C-PTSD, insomnia, dyslexia, raynauds, mild carpel tunnel, gluten and dairy intolerance
part time wheelchair user.

HMS diagnosis 27/9/11

Feel free to PM me about adult autism social groups in the Bristol and Bath area.
trekster
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Re: THE GOLD STAR LIST: people and things that enable us

Postby carolyn » Sat Mar 03, 2012 2:27 am

Oh thats great you got your bag back! What great people!
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Re: THE GOLD STAR LIST: people and things that enable us

Postby Fiona-Jane » Mon Mar 05, 2012 11:41 am

my 'new' doctor, Dr M {mod edit - medics name removed. Please read the site rules Fi} ... saw him as a kid and went back to him due to the errors and bad attitude of my old (feckless) doctor.... only saw the old once cos Dr M only worked twice a week and couldnt get an appointment within 3 weeks of needing it.. now he starts work at 7.30 am ish on the days he works so getting to see him is so much easier :dance:

had an appointment at silly o clock this morning with him and it was one of my best appointments. so nice to not have to defend myself in every appointment. and no need to fight to get my treatment that was prescribed by my tummy doctor (antibobos followed by vsl#3) which made a very nice change- he also offered to pop both the antibobo and vsl#3 onto my repeat prescription so i could get them whenever i needed them without having to make an appointment to see him. basically giving me full control of the treatments. :mrgreen: :dance: and when i asked for more anti-emetic pills to help my nausea in the evening and morning (basically when i have no domperidone in my system and cant take any more of it cos i've hit the upper dosage) he prescribed it without question and told me the full side effects there and then, never had a doctor who's done that before- usually i have to look that up myself when i get home. which i'm assuming is cos the other doctors just dont know as much as my 'new' doctor.

its soooo nice to be trusted by your doctor to self manage any treatments! and is gonna mean i dont have to make as many appointments to see him, which is fab as most appointments aren't that necessary and i could have managed the problem myself if i'd have had full access to my medications and be allowed to alter dosages. which i have now! woohoo! so from now on i'll only have to visit the practice twice in 2 months to drop off my prescription and pick it up once its processed. thats gonna make a huge difference! :dance:


usually having to get up that early in the morning would make me incredibly grumpy but thanks to my fab appointment i'm in a great mood! and tiger's appreciated the early morning sun that was coming through the windows- i came home to find her laid on her back and warming her belly in the sun! :lol:



fi
Ehlers-Danlos Syndrome (Hypermobile Type) finally diagnosed Feb '08, and a baffling array of other conditions just so my EDS wont get lonely ;^D

my blog : My EDS and its associated randomness.....
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Re: THE GOLD STAR LIST: people and things that enable us

Postby hannah » Sat Mar 10, 2012 3:25 pm

My telephone!!

Perfect for socialising with friends who live too far away to visit :D

My new flat: level access front door so can wheel straight in, and everything is on the ground floor :D
HMSA Patron for Kids and Teens. EDS III. POTS. For various cartoon descriptions of HMS&POTS and ways to help others understand HMS&POTS see http://www.stickmancommunications.co.uk
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Re: THE GOLD STAR LIST: people and things that enable us

Postby cracker » Sun Mar 25, 2012 9:20 pm

i love the bubble bars in Lush. i found the comforter its real good u break it in half it lasts for 2 baths it feels like a hug in the tub. and when u finished you still feel like u been hugged. :hug: it well worth £4.45.

My sensies in karate
sensie Ged
sensie Di
sensie Jon
Sensie Jaqui
are all great if my HMS flares up mid lesson i get a longer break and the make sure im ok. :dance:

my teacher at college Amanda and teaching assistant Bob are great if i cant write they let me look at a book.

my mum & dad help me at home & out & about if i in pain when on bus thet meet me at the bus stop when i going home.

my physios Uzo Pauline & Emma are great help Uzo diagnosed me. :dance:
Diagnosed with HMS July 2011. at age 31by my physio & HMS EDS3 & pots the 28 March 2013 age 32 by Prof Grahame.
i have a good sence of humer
dyslexia,asthma ,mild learning disabitys ,mild ibs,mild scoliosis and
part time cruches user x
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Re: THE GOLD STAR LIST: people and things that enable us

Postby trekster » Wed Mar 28, 2012 6:50 pm

m&S bra measuring service, fitted me in without having to make an appointment and were really patient with me.
Alexis

Aspergers, Fibro, OCD, C-PTSD, insomnia, dyslexia, raynauds, mild carpel tunnel, gluten and dairy intolerance
part time wheelchair user.

HMS diagnosis 27/9/11

Feel free to PM me about adult autism social groups in the Bristol and Bath area.
trekster
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Re: THE GOLD STAR LIST: people and things that enable us

Postby sheppeyescapee » Wed Mar 28, 2012 8:46 pm

Glad you managed to get seen mate. Hopefully having the right size will help :)
J - 28,student,married to the lovely Em and live with 2 cats Bilbo and Pippin. Diagnosed with Aspergers, Dyspraxia, Dyslexia, EDS-HM, Mild Asthma, Chronic Pain, Chronic Fatigue, POTS, Syncope
sheppeyescapee
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Re: THE GOLD STAR LIST: people and things that enable us

Postby trekster » Wed Mar 28, 2012 9:31 pm

Cheers mate. :bye: :bye:
Alexis

Aspergers, Fibro, OCD, C-PTSD, insomnia, dyslexia, raynauds, mild carpel tunnel, gluten and dairy intolerance
part time wheelchair user.

HMS diagnosis 27/9/11

Feel free to PM me about adult autism social groups in the Bristol and Bath area.
trekster
Carpal tunnel
 
Posts: 1425
Joined: Wed Aug 17, 2011 9:45 pm
Location: near Bristol

Re: THE GOLD STAR LIST: people and things that enable us

Postby sheppeyescapee » Wed Mar 28, 2012 11:00 pm

Cracker - I agree on the comforter bar it really is nice :) I can get 3 baths out of a bar :mrgreen: It is my favourite bar from lush :lol: Just got out of the bath with one in it :D
J - 28,student,married to the lovely Em and live with 2 cats Bilbo and Pippin. Diagnosed with Aspergers, Dyspraxia, Dyslexia, EDS-HM, Mild Asthma, Chronic Pain, Chronic Fatigue, POTS, Syncope
sheppeyescapee
Carpal tunnel
 
Posts: 1236
Joined: Fri Sep 18, 2009 2:43 pm
Location: Stoke Gifford, Bristol, UK

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