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Life-limiting illness

Hypermobile friend - how to make her feel better?!

1 reply

LazyFaire · 23/08/2013 09:55

My best friend, ever, who I have known since I was 13 or so, has been struggling with Hypermobility for about a year now.

I just spoke to her on the phone last night (having not done so for far too long, a few months!) and she is having a really horrible time! She was signed off for 9 months and went back to work but it isn't working out, her bosses are being very good and she has a month more to do some sort of 'probation' after which she probably won't have a job but they are trying to make it work out for everyone, it doesn't sound like it will though.

She is at the doctors loads, at least once a week, has dislocated more joints in the last year than seems physically possible (and is suffering acutely after each one!) can't walk far, can't swim, can hardly drive. Is just tired and sore all the time by the sound of it. And they don't know yet whether it will get better or worse, can fluctuate over time I hate to think of her being so debilitated for the rest of her life. She will be 25 soon!

Apparently she isn't even eligible for DLA although her work have kindly said they will write a recommendation if she loses her job after probation, to explain how her working is not feasible in her current condition. She can't seem to access mobility assist vehicles etc. Her mum has to lift her into the bath FFS!

To add to all that physical and mental turmoil, she has also had a cyst and half her cervix removed recently after a pre-cancer scare! I had no idea about this until last night she said she didn't want to worry people, and i said I am always here to worry for you! I want to know whats going on and help if I can! She has to go back in 6 months for re-evaluation on the cancer/not cancer, That plus the hypermobility means she can probably never have children of her own, which must be such a massive thought to deal with at 25 (she's not even in a relationship, but God, she should have 15+ years to play with still!)

I just feel absolutely awful for her, she is having such a rough time and as she live at the other end of the country - literally, I'm on the Scotland/England border and she is in Norwich - I can't just pop round and do her dishes or make her a cuppa, give her mum a break, give her a hug. Sad I miss her so much and I want to be able to help.

Please help me figure out what I can do for her - I have promised a visit but that would likely have to wait till Christmastime! On the phone it sounded like her spark had totally gone I want to give her some of it back. Sad

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Stom91 · 07/11/2013 20:16

I'm sorry I've only just seen this post.
I really feel for her. I'm hyper mobile too - not as bad as your friend but it's a daily struggle with no one understanding and the 'you don't look ill' comments.

There really isn't a lot you can do as you are so far away but just her knowing you're thinking of her will make all the difference.
I hope you can see her soon. Maybe send her some
Flowers to let her know you're thinking of her?

I'm currently 33 weeks pregnant. And it has been Anthony and tiring and I can't wait until my lol one is here.
I really hope that one day she will be able to have a child.

I'm really glad her work are being so nice about it. Mine are awful and don't believe I have anything wrong with me.

As it's been a few months since this was posted I hope things worked out with her job and I hope she is feeling a little better.
It's really hard to have something people don't understand.
I'm glad she has you to confind in

Best wishes to you both x

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