The (not so old) Crocks Cafe -Part 2

Hi, can I join pretty pretty please? *smiles sweetly*

I've been a member of MSE for a shortwhile but have never posted on this thread. :eek:

I've just read back a few pages on the old (closed) thread & you all seem lovely & supportive. :A

ash4becks wrote: »

bcs this is the sane nice bunch lol, i swaer i may aswell post anything i want to talk about here dont have to put up with some members horrid antics,

iam fedup had a rotton day just wish this hospital appointment would come asap driving me mad not knowing whats going on headaches are bugging me and the swelling all over body is just sucks

iam looking at doing a diary for dla have high care and lower mob, but should the diary inculde about the condtions i already have or just be in realtion to the mobilty aspect, also what kind of info should i put or does anyone no of any templates or websites which advice on i could follow x

Im sorry to hear that you are having such a rotten time of it at the moment (hugs).

Ahh we doing proper introductions?

Ok here we go....I'm 40, recovered/recovering from severe depression which was on and off from 1993 until around 18 months ago, endometriosis diagnosed at age 21ish which I had a hysterectomy for at age 31, hypermobile with wrist and hand arthritis diagnosed in late teens, lower spinal arthritis finally diagnosed (after them refusing to check it for over 10 years) at age 30 and since then, arthritis in my hips, knees, feet and goodness knows where else....seems a new day brings a new joint being affected.

I have had asthma in the past, originally as background asthma which gave no problems but which then turned into quite bad asthma after pneumonia at age 23..this was also the time my kidneys decided they weren't too happy and were starting to fail (long story, pregnancy and endometriosis related). They didn't completely fail in the end but it has left me with the legacy of my right kidney being damaged and the resultant frequent kidney infections, the asthma nows seems to have gone back to very mild background type again.

I am also a little OCD.

But, I am not disabled, I may now have to walk with a stick at times but I prefer to think as my body being a little tired rather than having a disability. I have never claimed any disability benefits for myself etc, I don't think I am bad enough.

My primary reason for coming to this section was as a carer to what was originally two of my sons who have various problems (youngest - severe asthma, complex autism, gross food intolerances, multiple food allergies, hypermobility syndrome, bowel disorder, possible Ehlers Danlos syndrome. Middle son - Aspergers, partial deafness, brain damage affecting aggression and memory, bowel disorder and possible Ehlers Danlos Syndrome) and also because we were going through the diagnostic procedure for eldest son who was finally diagnosed with HMS and then Ehlers Danlos.

I'm generally a get on and deal with it kind of person and will adapt quite quickly to different circumstances...I see it as a challenge to beat and accepting my limitations as a failure or giving in to it (something my physio tells me off about, apparently I should now accept the limitations because my actions are apparently making things worse), I however, refuse to be beaten.

I'm also divorced after being with my ex hubby for almost 20 years, he was a rather unstable diabetic with addisons disease and in my time with him, learnt virtually every ward and corridor in the big hospital up the road from our town...I'm now doing something similar with the childrens wards with the boys.

So there you have it, a condensed version of my hang ups over admitting my body is letting me down and why I can be pretty complex at times but even though I may not see myself as being disabled, it doesn't mean I will judge people with similar problems to myself negatively..I'm just a stubborn begger who doesn't like to give in!

It is the overdoing it and then paying for it that is becoming the major problem right now, it used to be that I could bounce back much quicker but now, overdoing it for one afternoon and I pay for the rest of the week and am barely able to move without pain.

The early onset arthritis I have only learnt about since eldest sons diagnostic procedure, before that, I (and the doctor 10 years ago) put it down to all the dancing I did in my childhood and teen years (I used to train a minimum of 6 hours a day) and it is why I keep telling eldest to take it easier now or end up like me...only sooner than me as his problems are that slight bit worse than what mine were at his age.

I'm still at the stubborn, not accepting stage of my limitations though although I have taken on board the physio's advice to use the stick before things get really bad, so I do but then do more than I should do because I can a bit easier for a short while before I have to stop as it has got too painful!

It will get into my thick skull eventually though....it will just take time, a lot of time.

Careful_with_that_Axe wrote: »

Overdoing it. Hmmmmm.
I've never learned the art of pacing myself.

I haven't either. My current flare-up started about 2 months ago when I went to a gig. It started off as my neck becoming sore and stiff again (because I can't hold my head straight) and now I've pulled the muscles in both shoulders.:(

Someone give me a kick up the bum please - I really must get this sorted.