Support Dog

http://www.dailymail.co.uk/health/article-2097649/Byron-dog-makes-bed-fetches-milk-gets-money-cash-machine-disabled-owner.html

well worth a look :)

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.

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

warning:bad spelling

Wow thats a good start. I use microsoft word to write my blog then copy and paste after spell checker has done its magic. Its crashed. So i am truely sorry for any typos/spelling/grammer problems.


Ok so update time. I have done no arty bits no cross stitch no crocheting. I am how ever thinking abouta new project im hoping to start in january. Quilting. I have never tried this and have been reading up on it. I souds very complicated and i think will take me the best part of a year to complete. I have different ideas on the style of it but havent completley made up my mind yet.

My health isnt great. Even more so now the colder weather has started to kick in. all i want to do is sleep and watch the world go by. I love winter none the less. There is something about the way the streets are empty at night. Watching snow fall, my street flood, and then theres xmas!!! I cant wait for xmas to get here. The look on connors face as he opens his presents is gonna make the highlight of the year for me.

I am pleased to report that my mind is less frazzled then it was on my last post. Connor has managed to total his glasses again. This time by headbutting the wall as he fell over. Another trip up town for me asap. He is enjoyng nursery and has grown in so many ways since started bearing in mind this is his secound week. His speech is amazing his using animal nioses, his even sleeping better.

I will be adding a poll to here as soon as i can work out how to do it. Keep a eye out as it could improve things around here for you lot instead of my ramblings i will be adding new topics to the top bar thingy. I was thinking along the lines of informatin into EDS, tips and tricks, backstory, helpful pages and groups for informatin or help. Let me know what you think. As alot of the time i dont know what to write about.



Sorry again about my spelling. :)

Freedom

Isn’t all it’s cracked up to be. Connors hopefully enjoying his first half day at nursery. I’ve put it off for months even though I needed help. Now I’m sat at home alone listening to the washing machine on a spin cycle. I am bored senseless. His been there almost 3 hours now and I already have my shoes on ready to limp out the door and go get him. Don’t get me wrong I am more than happy to have some time to myself I even managed to do some of the housework. But now the house is just too quite. I am sure that once I get used to being able to pee without a 2yr old trying to pull up my trousers ill settle down a bit and maybe even attempt to make some friends or be really daring and have a cheeky little nap.


The thing people don’t understand when I say about my friends or the lack of is that keeping friends when you have a child is hard enough. Your no longer fun you, pretty much always smell of sick, and instead of a night on the town all you want is to sleep for more than 3 hours without having to do an arse change. Needless to say most my friends disappeared as soon as my bump arrived. Having a child and having EDS makes friends almost as rare as an honest politician. On top of the fore-mentioned there is also the different “elements” of the condition. I’m not just talking about the unsightly supports, the crutches or embarrassing “problems” in public but also the mental and emotional aspects of EDS. If they can get over the physical problems the mental ones are normally the thing that makes them skip my name in the phone book. Depression, anxiety, fatigue, pain. Most people don’t understand how isolated being disabled or being a parent can make you feel. Especially if they don’t have any experience of it. I’m not bitter or angry or even that upset about it now. I have always liked my own company. I just wish that instead or someone thinking”oh no I won’t invite her, she can’t do it” I would rather they let me decide after all it’s my disability, my choice. And just because I have said no once don’t think that I’m always going to say no, maybe the last time you was kind enough to ask I was laid up in bed where as this time I’m ready to shake my booty till something pops!!

A new start

So i have decieded to start up a blog on my life with Ehlers-Danlos Syndrome. Somewhere i can be me , share my thoughts and feelings, and learn to deal with living with a condition i know is not going to get any better and may leave me in a wheelchair or bed bound before i am much older.

i will be changing the name as at the moment i cant for the life of me come up with a witty site name.