The (not so old) Crocks Cafe

TOBRUK

Careful_with_that_Axe wrote: »

No wonder I have been feeling so carp - turns out I have glandular fever *sigh*.

Oh NO! Cwta you poor thing. Did you have a blood test? I can sympathise and know exactly how you are feeling as I've had it 3 times, and it can go on for so long.

Well, you know you need plenty of rest - not that you can do much at all anyway! Are you sleeping a lot? Try not to push yourself, drink plenty and take care of yourself. Hugs to you.

SingleSue

Advice please...

Eldest's legs are giving him grief, his knees keep giving away (they partially dislocate at the drop of a hat) and whereas his hips used to lock on the way down stopping him falling completely, they are now not doing it!

Any advice on what he can do? I want to take him to the doctors tomorrow (today now!) but his day is completely full due to his exams starting next week, next week is pretty full too but I am concerned he could be making things worse by sticking his head in the sand.

His response was "I've been living this crap since October, I've got my exams starting next week and I just want to forget about seeing doctors and physios and specialists and bloody Ehlers Danlos"...but then 5 minutes later says "But what can I do about my legs, they ache, they give way and I hate it when they do it when I am in the middle of the road"

I don't have a magic wand, I can't take the aches, pains and dislocations away, I'm just mum....not a doctor. If he won't see anyone and won't mention it to his physios next week, what can I do?

He just wants to get off the merry go round....

Trialia

Could you maybe get him a stick, Sue? It's how I adapted when that started to happen to me - I actually tumbled head-over-heels right into a busy main road, and that's what shocked me into getting mine. You could probably find an adjustable one at a pound shop for less than £10, if you haven't time to take him to the doctors, that would suffice for now and it'll give him something to keep him upright when his legs won't...

SingleSue

I'll see what he says about that but I am not convinced he will go for it (think nigh on 6 foot of stroppy, proud, worried about what the girls will think 16 year old).

He accepts he has HEDS but doesn't accept it if you see what I mean. I think he is just sick of all the hospital visits and wants to be normal again..hence the raging about not talking to anyone about it, I think he thinks it will mean yet more appointments.

I can't imagine what it is like being 16 and finding your life is not going to be as you imagined it, heck, I'm 40 and won't give in to having sticks and things!

Trialia

I know what you mean. I was 19 when I wound up with fibro, on top of HEDS, and it did take that shock to make me realise that I had to put my pride away and just get something to support me. You could always tell him it could be worse - could be a zimmer frame! *g*

Seriously, if you explain it to him with the reasoning, it might not be so difficult. That and the fact that most girls that age seem to like to flirt with guys who can't/won't run away from them... Heh... But it'd be better to have a stick than to have what happened to me happen to him - nearly getting hit by a car is not a good thing. And it would make it much worse, if he were...

I understand the young-person's-pride thing. Very well, in fact. I only really started dislocating like crazy when I was 14 or so. So..yeah. You could always tell him that, if you like. Idk...

debbiedeboo

SingleSue, how would he feel about using a crutch? I know that sometimes walking sticks can be associated with older people so that might be difficult for a 16 year old to come to terms with but footballers etc use crutches when they have injuries.

SingleSue

Well, I had a small discussion with him about it this morning...the reply was a resounding No! to either a stick or crutches.

He said he is not going to give in to it, he is certainly not going to have any aids at all save for maybe some knee braces, which he is said he is going to try to make himself.

Invasion

I guess if you keep the option open for him, without pushing it, then he has got the chance to come back to you and say that maaaayybe he might need some kind of assistance. I was only just 16 when I had to start using my chair, and I was horrified.

The plus side of course for me was, without it I couldn't leave the house, with it, I could get out for little bits now and then. Once I'd been using it for a while it meant that my legs were saving some energy, and I could walk to a school classroom to pick up work to take home.

My friend with EDS had things like an adjustable bed and bath lift, as well as a chair. Would it be an option to ask him about home adjustments? They might be a little easier than sticks/crutches as they don't have to go out with him, yet his joints are still getting a break, and he could always claim they were yours

Is there an option of some intensive physio (inpatient..!)? Again, this was something my friend with EDS was offered, however I know that Lisey couldn't even wave without her shoulder falling out, or dress herself, so I don't know that it's an option for everyone

Invasion

Oh, and CWTA, hope you're feeling better soon, nasty! x

SingleSue

Invasion wrote: »

I guess if you keep the option open for him, without pushing it, then he has got the chance to come back to you and say that maaaayybe he might need some kind of assistance. I was only just 16 when I had to start using my chair, and I was horrified.

The plus side of course for me was, without it I couldn't leave the house, with it, I could get out for little bits now and then. Once I'd been using it for a while it meant that my legs were saving some energy, and I could walk to a school classroom to pick up work to take home.

My friend with EDS had things like an adjustable bed and bath lift, as well as a chair. Would it be an option to ask him about home adjustments? They might be a little easier than sticks/crutches as they don't have to go out with him, yet his joints are still getting a break, and he could always claim they were yours

Is there an option of some intensive physio (inpatient..!)? Again, this was something my friend with EDS was offered, however I know that Lisey couldn't even wave without her shoulder falling out, or dress herself, so I don't know that it's an option for everyone

Eldest has the thing with his shoulders too...except at the moment it is something he uses to gross his friends out! :rotfl:

My chat with him this morning has finally got him to agree to tell the general physio when we see her next week, which is more than he would agree to last night but he says he is not going to let this 'thing' beat him. I've also offered to speak to the school and see if they can do anything with regards to the walking between classrooms when his legs are very bad....I got a grunt in reply which I will take as an ok

He will come round to things eventually, I think it is all still new to him and he needs time to adjust mentally to a slightly different future to what he envisioned...I'm still trying to get my head around it!

The scary thing is that they believe middle son has it too, so the process could be repeated.....and possibly with younger son who also displays signs.