The (not so old) Crocks Cafe -Part 2

SingleSue

Phew, been a while since I updated this thread.....

Well, in the interim, my eldest son celebrated his 18th birthday...lots of fun had by all but I am still trying to get over his party which was held last Saturday, not from alcohol (I didn't touch a drop) but by the sheer amount of time I was on my feet and my attempt to think I was perfectly fine and could walk about for a little while without my crutches.

Bad move...very bad move. I only did it for a short while but it was enough (ok, it wasn't helped by thinking I could dance to one song - albeit with my crutches). By the middle of the party, I could barely move and was in agony, by the end I was virtually in tears. We (as in me and my parents) had decided to have the party fully catered to save our health and it did work...dread to think what I would have been like if we hadn't.

My doctor for some reason has decided to check me out for goodness knows what just recently, so had to have a fasting blood test to check for diabetes (result was low side of normal, just as I expected) and tonight, I am having to don all manner of weird and wonderful gadgets to test if I have sleep apnea (sp?), going to be fun putting the stuff on as my right shoulder is not particularly wonderful, so one of the boys is going to have to help with me partially dressed and then I will have to try to wiggle my bra off once they have gone...this could be fun!

Tomorrow is middle son's 15th birthday, I can't believe it, they are all growing up so fast....and all bar youngest are towering above me now (youngest will take a while to catch up due to a growth problem - he still looks like a primary school child yet he is in 3rd year high school)

Dad has not been too good, both he and mum went on holiday a couple of weeks back (no where exotic, they stayed in a caravan in Sussex) and he had a funny turn while they were out one day...it turns out they think he has had a small heart attack (he had a double bypass about 4 years ago) and probably a further small stroke too (had two major strokes in April last year). All very worrying and scary, the change in him from just a couple of years ago is very marked, he seems to have become an old man overnight...and he is only 70.

Hope everyone else is doing ok.

Trialia

I didn't post here, but a good friend of mine, Alexa, passed away a little over a week ago. She also had EDS (classical type, in her case, with Chiari). She was only 22 years old. I'm so tired of losing people to collagen-defect illnesses. Why is there so little research for us, when the studies all say that hypermobility EDS and HMS are dramatically under-diagnosed?

mcculloch29

I am so sorry for your loss, 22, that's heartbreakingly young. ... Years younger than my own children.

I'm sure that the lack of funding links with lack of awareness. Until I started posting on BBC's late Ouch! forum (I now post on Ouch Too) I didn't have a scooby doo about EDS. Considering I'm disabled and also worked for a health promotion charity for three years, you'd think it would have hit my radar at some point... but no.

SingleSue

Trialia wrote: »

I didn't post here, but a good friend of mine, Alexa, passed away a little over a week ago. She also had EDS (classical type, in her case, with Chiari). She was only 22 years old. I'm so tired of losing people to collagen-defect illnesses. Why is there so little research for us, when the studies all say that hypermobility EDS and HMS are dramatically under-diagnosed?

I must admit, even with eldest having confirmed EDS, that I didn't know it could be so dangerous either.

We did have a bit of a moment during his party when he looked close to collapse and was struggling to get his breath a little but we put it down to the fact he had had a cold the week before and was still trying to get over it....oh and the POTS/heart murmur playing a part too, the silly begger has lost his beta blockers (and didn't tell me - I found out that night)

We knew it wasn't alcohol either, he felt so under par that he only had a pint and was giving his drinks away to others or just saying no when people were trying to buy him a drink. He refused the suggestion of the calling of an ambulance, preferring to see if the worse passed with a little rest.

LameWolf

(((Trialia))) I am so very sorry to hear about Alexa.

LadyMorticia

Sorry for your loss Trialia.:(

LadyMorticia

DH and I had some good news a couple of days ago...

...the new Housing Association properties that have been built in the village...and that we "bid" for...well...

...we were top of the list...so...

WE ARE GOING TO HAVE OUR OWN PLACE!

I'm really sorry if that hurt anyone's eyes.:o

juno

Yesterday at work I was kneeling down and wanted to get up. My leg didn't go where I wanted it to, and I tripped over my own feet. And a bunch of kids laughed at me

LM, that's great news! When's the housewarming party, and are we invited?

LameWolf

LadyM Great news - congratulations!:T

Juno I hope it was only your pride that was hurt; I wish I had a £ for every time I've done something like that!:cool:

LadyMorticia

juno wrote: »

Yesterday at work I was kneeling down and wanted to get up. My leg didn't go where I wanted it to, and I tripped over my own feet. And a bunch of kids laughed at me

LM, that's great news! When's the housewarming party, and are we invited?

Thank you.

No idea when we're moving in yet but of course you are.

LameWolf wrote: »

LadyM Great news - congratulations!:T

Juno I hope it was only your pride that was hurt; I wish I had a £ for every time I've done something like that!:cool:

Thank you.