The (not so old) Crocks Cafe

Invasion

Hi all, we're slow moving in here at the moment aren't we?! I hope it's because people are out enjoying the nice weather... Single Sue, hope you're dad's getting on ok at home... Happy birthday to all those I missed...!

I went to see Peter Kay in Manchester last night, it was great, but it was a 2 hour journey there, P.K didn't come on till past 8.30 (doors opened at 6, we got there half 6, had to allow time for traffic etc!) and we didn't get home till 12, after leaving at 4:30. Was slurring words and beginning to get very dopey by 9ish, and falling over everywhere when we got home, even with both crutches.

Wheelchair seating at MEN was AWFUL. They had no idea where anyone was meant to be, people in the wrong place, one chair user had 6 people with them... I was sat behind parents in my chair, they tried to move me despite that being my seat on ticket, and the fact that I needed to be near them... the whole "carer" thing they don't really get! Had to get very serious before they left me alone! To top it all off P.K pulled a ricky gervais and called people with ME lazy bar... people annoyed me when in so much pain and feeling so ill before he'd even got on! It's really unnecessary, last night he took the mick out of.. bi polar, stroke, anyone with any mental disabilities, ME, "fashionable illnesses"- ME, bi polar and something else that I don't remember I think he's funny, but there's no need for that, there were definitely less laughs! Then he went on to say that calling in sick, by midday you're feeling ill from pretending, lying on the sofa with duvet etc... And I'M the lazy one?!

rant rant. Sorry! I wouldn't have been so bothered had I been watching it on dvd or something but I'd travelled 2 hours, accepted I'd probably have a week feeling even more cr*p than normal and we get that... Again, sorry! x

Trialia

Awww, Invasion. If you'd've asked me, you could've stayed over at mine. *hugs*

SingleSue

Phew, been a while since I have posted here.

Dad is home and doing well, he managed a walk to the top of the road today and back again but he is having to rely more on his right leg which is not going to be good news as that is his disabled leg and not really able to cope with weight bearing.

They have decided not to do the operation on his carotid artery just yet as the risk of even greater damage during surgery is far too high, this is due to the severity of the strokes he had and the large area of damage in the brain....they are hoping that things have healed enough to do it in 6-8 weeks though.

Both me and my brother agree that a bit is missing, that it's not the dad we knew before but mum can't see it..his thought processes are def slower and he is so impulsive now it is like having a 2 year old, you have to watch what he is up to...constantly!

Me and the boys are doing ok, situation normal with my back and finally identified where a crackling noise is coming from when going up the stairs, thought it was my hips but have discovered it's my knees and it is not only when going up the stairs but every time I bend them...I can also feel movement with the crackling (think rice Krispies when you put milk on them for the noise), so something else I should really be seeing the doctor about...and no, I haven't seen him about my back yet!

Maybe next week when there are some free hours....

Eldest is up to see the geneticist next Tuesday so we may finally have some answers and his paediatrician appointment is being brought forward because of his chest pains although we have had to do a last minute appointment for the GP to rule out a chest infection (would be the weirdest infection I know as no cough, no production and nothing to start one off in the first place!) or asthma (well he did have asthma as a small child)....palava to get that one organised as the cardiologist and the paediatrician only told me this morning to see the GP before our appointment next Tuesday and of course, Monday is a bank holiday!

Finally got my assignment submitted last night, bit of a nightmare as I threatening a migraine but such a relief when I pressed the button to submit...got the result tonight and despite expecting a low but pass mark, the mark was extremely good and I am still at the standard for a 1st.

Eeekkk, look at the time!

Indie_Kid

Sue - I hope your dad recovers well. You really need to go to the doctors. (says me who needs to go again; but hasn't made an appointment yet)

SingleSue

Well, we finally have eldest sons diagnosis.

It is not Marfans but it is Ehlers Danlos syndrome.....more scary, they want to see middle son because of his weird fingers and easy bruising but confusingly, not youngest who already has HMS!

LameWolf

SingleSue I Googled it, so as to see what you'll have to deal with. (((HUGS))) to you. At least now your eldest has a diagnosis. Once the problem is correctly labeled, you can start getting the exact treatment needed to at least make life easier. That's my feeling, anyway. I hope your Dad is continuing to improve, also.

:wave: to everyone else. I'd better get off my bum and do some more housework, cos I'll be asleep if I sit here much longer.

Jojo_the_Tightfisted

I am sooooooooooooooo cold today! I can hardly move!

Sue, I am seriously in awe of anyone who can post an 85%+ average on level 2 and above TMAs. Very humbling!

LW, am I mistaken or have you turned into a whirling dervish of domesticity recently? I'm seriously impressed by that too!

SingleSue

Oooppss, someone misinformed me or I was doing my usual and getting the wrong end of the stick!....my scores so far have been just a tiny bit under that, not by much but still a little less than that, so no first for me then.

Mind you, still proud of myself, maybe a little less proud than I was and ever so slightly gutted (oh and feeling slightly silly for getting it wrong!) but it's still worth it.

And it's only going to get harder from here....I am not looking forward to the exam this year, exams scare me.

suep

Hi all, Ive not been here for a few days as Ive had another bad flare. Im getting over it slowly now, although Im still very sleepy.
I have some good news at last. DS1 is in rehab and is doing really well so far. Once he's sober he will have a much better chance of getting access to his son, so hopefully things are on the turn at last.
Single sue I know a young girl who is very poorly with EDS, I met her on a fibro forum a couple of years ago , she'd been dx with Fibro but seemed much worse than the rest of us and was completely housebound at 15, she was eventually dx with EDS and is getting more help now, theres different levels/types of it isnt there ? I hope your son gets the help he needs now. Also really glad your Dads back home now.

SingleSue

Yes there is, eldest is more hypermobility type with some cross over to classic type...will know more when the geneticist has done his report. The geneticist was truly impressed with some of the things eldest could do, even after he said nothing you can do will impress me, he even took photos!

Now all we have to do is work out which side it has come from, it could be either myself or hubby as we were both very hypermobile (with me being the most hypermobile, I scored 9/9 on the Beighton scale) and had early onset osteoarthritis (fingers by age 20, lower spinal finally diagnosed at age 30 after years of trying to get them to look at it)..maybe that is what I have had all these years.

It was a sort of expected diagnosis, even if we had been slightly detoured in our thoughts by the mention of Marfans but it is still a bit of a body blow for me...why can't I produce normal children!

Makes me feel a bit of a failure to be honest, the whole body letting me down, crap genes sort of thing.

Eldest has taken it in his stride, at the moment he is only needed work from the physios of which he has many..he doesn't see it as a disability as he can partially dislocate various bits of his body to get into small spaces, reach things others can't etc. plus also gross people out by his incredibly stretchy skin!