Help!!!!

I am applying for higher rate mobility I already receive the care component. I was looking through my medical letters for a doctor’s address and noticed that a lot of the medical reports contradict each other. One says I have begin hypermobilty another says I have severe EDS type 3. Another said I scored 3/9 on the beighton score and another says I scored 8/9.

One letter says I have POTS another says I get slightly flustered. One even says I have drug seeking behaviour (like it hasn’t been mentioned before lol) 

One letter says I have never dislocated (I wish) and another says I dislocate daily. One says I’m left handed while I’m actually right handed.

I was wondering is there a way that I can get a letter that is correct. No wonder I’m struggling to get any help let alone get my head round what’s going on. I would ask my specialist but I am not due to see him till god knows when. I phoned for appointment waiting time and was told I’m looking at 11 months for an emergency appointment. Do you think it would be a good idea to email him? I just need a definite letter to be able to claim right. With the letters at the moment the government are refusing to issue a bus pass because there’s so many contradictions, any ideas what I can do?

Hellooooo. It’s been ages I know. I have been mainly on my cross stitch blog. I’m a bad blogger.


In all honesty it’s been a shite few months but I’m not in the mood to go into all that now.



I’m still waiting for my tilt table and overnight tests. Most of the waiting has flown by so I’m expecting a letter any day now.

I have been keeping busy with Connor mainly doing arty things. We have made a paper mache pig. It’s been so much fun. Slow progress but fun. Hopefully tomorrow we will be able to start painting it! It’s been nice to have something I can sit down and do with my son. It makes the painful days pass quicker. So here is Mr Piggy. Connor named him, not bad for a 3 yr old. I wanted to call him pizza or chicken head but Connor wasn’t having any of it!



Mr Piggy

Connor glueing his hands

Mr Piggy ready for painting

We also did some hand painting in the garden. Which somehow turned into a paint fight? Soon there was paint everywhere. All over the garden all round the house. I stood there in the middle of it all and thought I really shouldn’t have worn my brand new white shorts!



Some of the paintings

We gave the shed a make over

The expression “when you hear hoof beats expect zebras”(( INFO)) is very well known in the EDS community. We even have our own ribbon which has zebra stripes!



The other week while we were food shopping I found these in Tesco’s. I fell in love with them. All three for roughly £5-6

Not all Drs are monsters!!!!

Well it’s been a month. I’m sorry.


Last week I had an appointment in London to see a professor in neurology. For once we were on time! He thinks I have secondary P.O.T.S and has asked me to come back before the end of the year for more overnight tests and a tilt table test. Information on P.O.T.S can be found HERE and information on the tilt table test can be found HERE. I’m sorry that they are taken from the internet but at the moment I’m having problems understanding it all and keep getting confused.

The professor was amazing. Funny, talkative, interested in everything not just my medical history but what I enjoy doing, what past jobs I’ve had, everything. I can’t wait to go back and see him. I would even go as far as to say he has restored my faith in doctors.

Dangerous Driving

My mother has one of those mobility scooters, amazing things but the owners should be made to take a driving test when they first get one. The reason why. My mother is a nightmare on it.


We were in a local shop and we decided to leave, instead of going the long way around she tries to reverse. Which wouldn’t be a problem if she could. She went zooming back into a display of dog food tins. Guess who was standing next to the damned thing. Yep me. I ended up on the floor with a couple of hundred tins of sodding dog food on me. You know what my mum did then, laughed! A shop assistant had to help me up and tidy up the mass of dog food. I managed to get up only to find mum reverse into a stack of kitchen role. So I have been on crutches since. Now I have pulled muscles in my side, stomach and neck I have a lot of bruising on my hands, I thought crutches was meant to be our friends.

EDS in the media

Does anyone watch Casualty? This week’s episode had a patient with EDS type 3!!!!

I’m afraid to say I was horrified by the portrayal that was used. The patient was a junkie who “purposely” dislocates his shoulder to receive morphine. It makes us look great doesn’t it? One doctor classed him as a frequent flyer and said that he had drug seeking behaviour. How many of us haven’t heard that line before!

So after the new clinical lead relocates his shoulder, with no pain relief, and no warning, she says “well he won’t try that again”

I have to say it’s quite an accurate portrayal of a doctor dealing with an EDS patient. It’s sickening.


I was hoping to make a short clip but it doesnt seem that its going to be ready any time soon. If i manage it i will upload it.
The patient I am on about is roughly 10 minutes in.

  (video from you tube. I do not own this)

In other news I have to go back to the dreaded dentist. I’ve lost two fillings in the last day L wish me and them luck.

Funkey-ness

It’s been awhile. I know bad me. I got into a kind of funk and it’s been pretty damned hard to try and shake it.


We have one hell of a busy day tomorrow. 3 hospital appointments all regarding different things. Connor has his check up with a specialist growth doctor. I have a long-awaited appointment with my rheumy ad my partner has to have a tooth out. 1 doctors appointment for me for minor surgery. So it’s going to be a busy busy day.

The little things.

Hugs and kisses and smiles are what keep me going. No matter how much pain I’m in just one little smile, one “arms around the neck hug” one snotty wet kiss. Gives me the strength to fight back. When I’m in so much pain I’m crying in the toilet just a peck on the cheek from Connor and for him to say its all better gives me the strength to carry on. If it wasn’t for those little moments I would have given up a long time ago. His my everything. He truly is. See it’s truly the little things that can make your day worthwhile. Make all the pain disappear for a second. I am truely grateful for such a wonderful caring son.

Well it’s been awhile. So quick update. Xmas was good so was new year. We all had fun and I got some really cute pics that I might upload later.


Connors had appointments for his eyes. We were pissed about by the doctors and eventually they have decided that in April he will have his right eye patched. We still haven’t been able to get his new glasses as apparently none of the opticians can make them. I told the doctor we went to see and she said that it was a load of rubbish.

My health has been up and down. Not so much dislocation and subluxes but more migraines at the moment. The latest one has latest over 5 days now. I’ve lost weight as I’m throwing up pretty much everything I eat. The tablets aren’t having enough time to work before they come back up. I’m trying to make an appointment with my doctor this week as he said about putting me on beta blockers to stop the migraines. It would be fantastic to not have them anymore as they render me completely incapable. It puts more stress on my family as my partner then has to look after me while looking after the house and Connor. Other then the migraines I keep getting colds soon as I recover from one I have caught another one. And this morning I managed to fall down the last 4 stairs. Woo go me! Only my wrist and ankle were dislocated so I was pretty lucky.

I can’t remember if I posted about my other blog. Mainly on needlecrafts. It’s called “Relentless stitching” and I think you can get to it through my profile page. I have updated there a lot more and you can see some of the projects that I have been working on.

Xmas Pics:

the kitten killed the xmas tree

So we dressed connor up as our new Xmas tree

playing

First time with santa

All hail my wonderful wrapping skills,i wonder what they could be