THE GOLD STAR LIST: people and things that enable us

[everhopeful]

1. My Son (aged 10) and my amazing husband who works 4 hours away and after a long commute on a friday does tonnes round the house and garden before commuting back on sundays. (My Son does everything from hanging up the washing to cleaning the loo....he's also a jolly good cub scout!)
2. My new automatic car!
3. My electric gadgets and stools (which take some of the pressure off)
4. Having the forum to get involved in and learn so much from all you guys on here.
5. A fantastic team of Cub scout leaders that understand my difficulties and take the pressure off me.
6. Medication..........

[Lindsly]

1. my mother for all her love and help, putting up with limitations and problems, getting dr.'s to pay attention to my pains, being her motherly self
2. Prof Grahame - to think where many like us might be without him!
3. My rheumatologist - most thorough and friendly doctor i've had, welcomes questions (this July, when he asked what other questions i had and i said i was trying to be brief for once, he then asked what i wanted to do that i couldn't...spent 30+ minutes with me), gives a lot more help than just painkillers (but still offers better meds than many docs would), gives lots of advice, grasps the (physical and mental) life implications of problems suprisingly well (much better than my mother in lots of ways), likes to hear about things that help me and thus possibly help other patients more, admits he forgets or doesn't know things, borrowed my books on JHS/EDS... yep, he's my favorite doctor ever!
4. this board and the people here as others recently said
5. a friend with similar problems
6. my silky and sweet little dog who lessens stress and gloom, happily exercises with me or lays around while i work, sometimes tries awfully hard to get me to bed at a decent time , motivates me to exercise because i know she needs to move
7. my motherly (older) friend at work
8. the super friendly IT man at work who has given his break time and (on his own initiative) increased his work load to help me

[sanguine_emma]

This amazing chair I can work at my desk in comfort, I can go out to the lab, raise the seat, work at the bench, move around to lab, go to meetings, go to lunch - in short, I can function like an average human being!

em4_258_low_sideview_b_w240.jpg (73.63 KiB) Viewed 936 times

[Stone]

Wow, that looks like a totally awesome chair I would think you're the envy of the office!

Stone

[Lindsly]

Wow indeed! That's the most versatile chair I've ever even heard of. Very neat!

[lil_miffy]

That chair looks amazing!!

2 people deserve big gold stars from me.

Number 1 my gp. he is amazing. hes so understanding and compassionate. He's had a play around with my pain meds and hopefully got me on a good combo now. he has perscribed the irrigation system I need to manage the GI issues which is very expensive but he even offered today on my follow up appointment to perscribe me double the amount of catherters so that I don't run short. he also is still perscribing the movical laxative which is also expensive. the point of the irrigation was to get me off the movical but my bowel is so affected that i still need the movical as well. i thought that becuase of the cost of both i would have to pick one or the other but he is letting me have both. he also reffered me to the new bendy dr in newcastle/gateshead without me even asking having read it in prof birds notes that if i wanted to be refffered that would be the best place to go.

Number 2, and an extra big fat gold star to Richard, my bf. We have only been together for 2 weeks but he instantly seemed to understand and sympathise with how the eds/hms affects me. he doenst question when we have to change plans or have to just go with the flow. he sat and massaged my legs all night while we watched tv tonight becuase the nerve pain was really bad. He comes in and does my waashing up, goes to the shop without me asking to get milk when im running low and buys me chocolate and asks me every hour 'how are you feeling now, are you tired, hows the pain at the moment?' He keeps offering to do the huge pile of ironing thats stacked up from 2 months of my mum not being able to do it but i can't bring myself to let him do it.
Not only is he amazingly understanding and supportive but he is mega strong (landed myself quite a buff hunk ) and can push me in my wheelchair up and down really steep hills without geting out of breath. He took me to Durham city last week shopping. its the first time iv been in over a year becuase it was impossible for me to get around on my sticks or in my chair. He will carry me up the steps and steep hills to get to our beach which again i havent been able to get to in over a year. We've been 3 times in just 2 weeks! If i get tired when we go for a walk on the beach or in the woods he will just sit me down and let me rest as long as i need and even carries me for a while. Last sunday i had a really bad day and would have stayed in bed sleeping but got myself up becuase he came over. but he sent me back to bed and layed on the bed with me just chatting while i dozed on and off, made me tea and was very strict at not letting me get up unless it was essential.
And to just show off a little, last week we went to tesco shopping and on the way home he carried 3 of the big tesco 'bag for life' bags full of shopping in one hand and pushed me in my chair with his other hand all the way home!!
To all the single ladies...bag yourself a super hunk and it will do more for your eds/hms than any social worker lol.

Anyway theres my gold stars. tow amazing people who have made a huge difference in my life the past few weeks.

[everhopeful]

Hi Miffy
It sounds like you've got a true hero there. So glad that you have been able to get out more over the last couple of weeks. Your Doctor sounds amazing too. I have a very good doctor who really seems to understand but I get so sad sometimes on here when I read about the struggles that people are having with being "heard" and being diagnosed or assessed for help. I was luckily with a swift diagnosis after things started to go wrong but it's such a postcode lottery as usual for so many. Keep having fun with your new fella. Liz x

[shen]

I nominate 2 People.

The disability advisor at plymouth university. She has been e-mailing me all summer finding out as much as possible about my needs and working hard to put together a support package for when I arrive. She has also arranged for someone to meet me on Sunday 19th to show me around uni and the easiest routes! She has really bent over backwards to accommodate me.

My Physio. It's the last time I see her today and she was lovely as ever. She totally understood when I told her about my physio going slowly because I hurt my shoulder badly a few times and now its just back to the start and gave me suggestions on how to start building it back up again. She understood that with EDS you often end up back at the beginning easily. I'm being referred to Derriford hospital in plymouth for physio, but she was concerned that I may just get lumped with any old one so she phoned up the physio department there to ask if anyone had a rheumatology background with an interest in HMS/EDS/Fibro and explained that I have a complex history with certain needs. Thankfully there is! She faxed them all my details and contact numbers and arranged for them to send me an appointment as soon as I phone them with a GPs address. All this within 20 minutes of me leaving the hospital! (she phoned to tell me that it's all been put in place) I'm kind of thinking about stealing her and keeping her in my closet in plymouth!

[WinonaLemonade]

hope you get on well the physio in plymouth i've found it a bit of a mixed bag but had some really good ones. if you have any problems the department owns a copy of the hms for physios book so you can always prod them to go and have a look.

[everhopeful]

MY UPDATE
Last week my old Cub Scout Leader responded to my plea on Facebook for help with my shopping. She did all the shopping, followed me home and unpacked all of my bags. Thanks Maria. xx
Today, my sister met me to do my shopping and did the same, unpacking it and putting it all into my cupboards (and stock rotated too). Thanks Dawn. xx

[BendyBoff]

My GP - he listens, doesn't make you feel like a fraud and always takes a bit of time to chat about general stuff.

My colleagues - they don't moan when I can't do stuff, they don't look at me weird when I come in with crutches one day and none the next, they are understanding when I'm late either do to needing to see the dr at the last minute or because I overslept/struggled with getting to work on time, they help me pace and they are just lovely people!

xxxx

[sheppeyescapee]

Gold star of the day goes to:
My good friend who went out of her way to come sit with me through my ESA medical, took me to bath to my rheumy appointment and sat in on that appointment. Drove me home and generally kept me company through my stressing, dizzy spells, the whole lot. Big big star, I feel truly blessed to have such a great friend

[Blaadyblah]

Gold Star of the day goes to Super Lady from my Care Agency who explained everything really gently and paused to let me focus again when I got overwhelmed by too much info. LOVE people who get it.

[barkingmad]

She does deserve a gold star and i am glad you have gone down that route.

My gold star goes to a very special friend who has had some terrible news. He doesnt deserve it and shouldnt have to face this decision but I guess no one deserves to have to make this choice. I love you very much and you are extremely special, you put me on the path I am on now and without you behind me quietly I wouldnt do half the things I can now... I just wish I could be with you to see you through this. You are much more braver than me and you deserve to be on top of the pedestal.

[meggy.nut]

Gold star goes to my hubby who has been carrying me around the house the last two days since I had a splint put on my ankle (I'm not supposed to walk on it). And he takes care of the house and puppies too!!

I got new wrist braces from my OT yesterday - they're called Wrist Widgets- and they work wonderfully! My wrists don't sublux or hyper-extend any more, but I still have 'normal' (for non-bendy peoples) range of motion and pick up stuff!!