un-hinged!

mary_hinge

liltdiddylilt wrote: »

Lmao at Lucky. For me it is definitely the chocolate. And the half a pack of dead fly biscuits. And the giant piece of chocolate cake. And half a yorkie I found in my bedside table. And... the list carries on. Still waste not want not. I am writing my Xmas food shop list now whilst I still have in my mind all the stuff I struggled to find a home for, or eat before it went off might save myself about £60 next year

Mrs H - rubbish news about the house. I still have my fingers crossed though hun!!

As for the physio... My new Consultant at the hospital who deals in excessive pain and the management of it through whatever means WORKS.... told me not to undertake any physio until I was not in pain. Whilst in pain, physio does not work. And I agree with him. I couldn't effectively do the rigorous strengthening and testing routine my physio gave me. Nor could I even do the most basic exercises. Nor could I even do the tension exercises which were her last resort. She ended up shrugging and saying "I can't help you". And it is true. Until my pain is under control, nothing she tried would help. Leaves Missy H in a tricky position...

Hugs all round! xx

crisps are my down fall and huge plateful sized portions! I haven't been to fat club since october but aim to get back on track and drop this lard.

The problem with Missy H is her pain is caused by her joints moving and dislocating. Her muscles need to be strong to keep them in place and they are too weak so it is a vicious circle as physio is painful but for her pain to get better her muscles need to be stronger!

liltdiddylilt

Is she hyper-mobile? My sister and I have that. Her far worse than I. She dislocates things on a regular basis. For me it is just my wrist every few weeks.

Poor Missy H it cannot be nice but I know what you mean about it being a vicious cycle. She really doesn't catch a break poor little mite!

mary_hinge

liltdiddylilt wrote: »

Is she hyper-mobile? My sister and I have that. Her far worse than I. She dislocates things on a regular basis. For me it is just my wrist every few weeks.

Poor Missy H it cannot be nice but I know what you mean about it being a vicious cycle. She really doesn't catch a break poor little mite!

Missy Hinge has Ehler-danlos syndrome hypermobility type Lilt, she dislocates her wrists, thumbs, hips, knees, ankles and toes although every joint including her neck and spine are hypermobile. Her Kness are by far the worse and her hips and ankles are not much better. She has Eds related PoTS so gets dizzy and has fainting episodes with heart palps, Gastro problems including intolerances and chronic constipation caused by dysmotility in her digestive system. Not forgetting her epilepsy and asthma.

Yes she deserves a break :(The EDSUK support group are offering scholarships for a 3 day break at a activity centre adapted for children with disabilities. I have applied for a place for Missy Hinge and will hear in March so keep your fingers crossed.

liltdiddylilt

Holy mother. Ehlers Danlos is precisely what my little sister is diagnosed with. Me, I skipped that. Just a wonky wrist and ankle.

Sister also has gastroparesis and is tube fed. Fibro, PoTS & CFS. Sounds like she and Missy H are in similar situations. Myself & sis also had epilepsy & asthma, but she grew out of asthma & epilepsy and I grew out of epilepsy - both around about 14 when we were all-cleared, so I hope Missy H has similar luck there...

Fingers way crossed for her getting the break. She deserves it... and it would be so good for her!

I sometimes wonder about the universe and why it gives certain people such rotten luck. Big hugs to all of you. There is a lot to deal with in your house and you are such lovely people to have to deal with it unfair...

mary_hinge

The Rhuemy we saw doesn't diagnoise Fibro and CFS in EDS as he says it is already included in the EDS symptoms and distracts from the main diagnosis. The fatigue is the hardest for MIssy Hinge after the pain. She's now on a part time timetable for school to try and help her function better.

Missy Hinge has epilepsy following scarring to her brain caused by encephalitis when she was 4 months old. She had a virus that had similar affects as meningitis.

:rotfl: and the delightful folk at DWP say she has not needs greater than a average 10 year old :eek: we have yet another night time needs diary to fill in for them for the next week. It is starting to feel like we are begging for it :mad:

Bubblesmum

Sending even more hugs. So tired tonight but so sympathise with you all especially Missu H pain and fatigue the unseen and often I feel unappreciated side of disability that drags you down. Xxxxxxxxx

liltdiddylilt

You are joking me? Poor Missy H.... Still, at least the diary will be nice and full I suppose..

To be honest most of sisters diagnosis came from London after she had cut herself off from the whole family. What I discover about her these days is mainly via other twitter uses tweeting things about her as she has us blocked. Sad but she prefers it that way and doesn't even know Jelly exists. That is probably the hardest thing for me.

I am still convinced you need to make a song and dance with your local MP and newspaper.. funny how that gets local councils shifting at warp speed and falling over themselves... xx

mary_hinge

liltdiddylilt wrote: »

You are joking me? Poor Missy H.... Still, at least the diary will be nice and full I suppose..

To be honest most of sisters diagnosis came from London after she had cut herself off from the whole family. What I discover about her these days is mainly via other twitter uses tweeting things about her as she has us blocked. Sad but she prefers it that way and doesn't even know Jelly exists. That is probably the hardest thing for me.

I am still convinced you need to make a song and dance with your local MP and newspaper.. funny how that gets local councils shifting at warp speed and falling over themselves... xx

She was awarded the lowest they could to stop us going to tribunal after a 9month battle, when it came to renewal and her circumstances changed (got worse) they disagreed, when I asked for them to reconsider the Decision maker called me on new years eve and again a few days later to ask questions. Not satisfied with my answers they want a weeks night time diaries and are writing to school to clarify the "help" she gets there.

I can imagine it is very hard for you Lilt however I did something very similar 10 years ago and cut myself off completely from my whole family, I had very good reasons and I am under no doubt it was the best thing I ever did but I am sure my family think otherwise. They have never met my boys and Missy Hinge was tiny when I moved. a few years later I was hunted down by my big sister and later my dad, having spent 3 days with my family at my sisters bedside I finally feel more settled about being around them as in the sense they don't bother me any more. I am no longer living my life looking over my shoulder hoping not to bump in to them. Harsh as it sounds I could now walk straight past them and not bat a eyelid.

London is the place to go when you have EDS, Stanmore and UCHL are amazing, GOSH also have services but I have heard alot of negative things about them and their "boot camp" approach to rehab.

please-let-me-be-lucky

Mrs H I am so angry on yours and Missy H's behalf. So annoying that you are having to jump through so many hoops when she quite clearly deserves the award Xx

mary_hinge

please-let-me-be-lucky wrote: »

Mrs H I am so angry on yours and Missy H's behalf. So annoying that you are having to jump through so many hoops when she quite clearly deserves the award Xx

It seems very common that parents with children with EDS have to fight for DLA, it is the most under-diagnosed and under estimated condition going. when we went to the conference in October the leading EDS specialist Professor Graham commented how it is "a poor state of affairs when the patients know more about EDS than the Health professionals supposedly treating them!"

They should come and look after her for a week and they would see how hard it is, not just her medication (15 lots) or her mobility issues(inability to manage stairs), her physio 2-3times daily, help with changing, constant supervision, scouring every packet before cooking for her, massages and constant reassurance when she's in agony to name just a few.......