The (not so old) Crocks Cafe

SingleSue

Trialia wrote: »

Good luck, Sue! I'm severely hypermobile with Marfanoid traits, too, except I don't have Marfan's syndrome (I'm short in most ways, not like the traditional tall&thin Marfan's sufferers): I have hypermobility-type Ehlers-Danlos. Pretty sure I know what rib thing your kid is talking about, too. *g* I can subluxate mine...

Ahhh the doctor originally said he was referring for possible EDS, so it was a surprise when we got to the hospital to be told they were investigating possible Marfans.

He loves shocking the physio with all the things he can do with his joints....and everyone else, so he keeps being told off....if only I had listened when I was younger, I may not be so 'crocked' now!

jazabelle

SingleSue wrote: »

He loves shocking the physio with all the things he can do with his joints....and everyone else, so he keeps being told off....if only I had listened when I was younger, I may not be so 'crocked' now!

To be fair - that might not be the case. I can barely move my joints in interesting ways - my fingers go a little more back than usual, and my knees move forward a bit - but I'm still a complete and utter wreck. So don't beat yourself up - it might have happened anyway!

jazabelle

Invasion wrote: »

Jaz, just received this... "Your package from kane shoes of america is on its way. You can track it online using this tracking number." so they've posted it out for $6!

Yay! Excellent. Hope you get it okay! Let me know how you get on with it please, and if it's good I may take the plunge. Sorry for using you as my guinea pig

jazabelle

I'm so nervous about today. I finally have my psychatrist appointment. I was referred to one by my pain consultant as he believes that the pain is all in my head, despite me having Hypermobile joints, bulging discs on my MRI and hard painful muscles anyone can feel! To be honest, I'm scared she will say it's in my head - even though I know it's not.

My GP assured me she will do nothing of the sort, but will talk me through the emotional process of being in pain all the time. I just hope she's right!

Has anyone else seen a Psychatrist this way before? What kind of things did they ask you?

SingleSue

jazabelle wrote: »

To be fair - that might not be the case. I can barely move my joints in interesting ways - my fingers go a little more back than usual, and my knees move forward a bit - but I'm still a complete and utter wreck. So don't beat yourself up - it might have happened anyway!

I used to do telephone with my feet, the splits to show off, spoons with my hands, fingers at complete right angles and wrapped around each other, squeeze my shoulders in at almost right angles to get in a tighter space and the one which I think has done the damage....click my spine to music.

Eldest can do all the above except the clicking spine but his joints also pop out at a moments notice which mine never did, he also has incredibly stretchy skin and finds it difficult to gain weight..in fact, to keep weight on!

Trialia

Wow, this weather! 8 inches and a blizzard out in south Manchester right now! @_@

pipkin71

jazabelle wrote: »

When it's wet, my walking stick slips on the ground and gives no help what-so-ever. I assume there are things you can put on that can help grip - has anyone had any luck with them?

Have the same problem jazabelle - more so on the smooth paving slabs, tiles in shopping centres, ect.

It's easier to stay at home some days!

pipkin71

SingleSue wrote: »

Do you mind if I join you from time to time? I'm not officially a 'crock' (lower spinal arthritis plus arthritis in other joints, hypermobile and just about recovered from a breakdown but claim no disability benefits and hardly trouble the doctor with it...even when I should!)

Sometimes it would be nice to discuss with others who may understand the frustration of not being able to carry a shopping basket without then not being able to walk back to the car unless it is in a somewhat weird shuffle!

I'm currently trying to build up the confidence to trouble the doctor as my back is becoming very troublesome and restricting but I suppose I am scared the doctor is going to tell me I have to stop doing something or take something (I hate tablets! Silly? Yep!) or even tell me I can no longer provide the care for my children.

Am I being completely silly? I know I probably am but at the moment it is stopping me from visiting the doctor.

Hi Sue.

How are you today?

Still haven't been to the doc, then :mad::p:D

Aww, hunny. ((((HUGS))))

I know how you feel.

A big thing for me was getting social services help, because I was worried they would decide I could no longer look after the girls, but things were becoming soooo difficult at home, and they were wonderful. Really helpful and supportive.

The hardest part is the initial visit, but your GP is there for you and there's no reason why you can no onger look after the children.

As you say, you've adapted. You've got the walk down to a tee [and manage to give the kids a smile if it's anything like my walk :rotfl:] and everyone pitches in at home.

Although you don't like the painkillers, think of the relief they could bring.

I do hope you can pluck up the courage to see your GP pet, before you get to a stage when actually, you can't physically take care of your children for a short time, due to the pain.

((((HUGS)))) again

SingleSue

Hi Pipkin....nope still not been.

I'm actually having a pretty good day today, although tired. My back (touch wood and any other lucky surface) is feeling a lot more comfortable than of late...but then I haven't started the housework yet!

I don't know what it is really with the doctor, when I have my intelligent brain on, I know it can only help rather than hinder my ability to care for the children but then I get all silly and back out.

I suppose in a way, I also don't want to admit to myself that I am not getting any better (or younger!) and I am not quite as indestructable as I thought I was...it's almost like admitting a weakness, so I find ways around it to manage.

It will be 10 years this year since the arthritis was diagnosed in my spine (more than 20 since it was diagnosed in my hands and right wrist) after years of being told that it couldn't be arthritis as only athletes get it under 30.....tried to point out the many years of 6+ hours a day dance training I did from the age of 5 to almost 16 but got nowhere. The doctor finally agreed to get the tests done shortly after my 30th birthday...and hey presto, guess what was found..yep the arthritis that wasn't supposed to be there.

Since then, I have taken ibuprofen to deal with any pain (although as an asthmatic, I am not supposed to take it but I am allergic to paracetomol) and have an amazing line in heat pads, hot water bottles and pillows to position myself comfortably. I also have to wear a splint a lot of the time as my right wrist is now incredibly unstable...new party trick is to have one of the bones pop out of sync with the rest :rotfl:looks a bit gross and weird (and very painful) but at least it gives me something else to think about than my back

Gawd, this growing old lark isn't all it's cracked up to be is it? :rotfl:

black_paw

hot chocplate all round and hope some one is making home made soup with fresh bread....been waiting since 8 for plumber could have stayed in bed ! drats !