Friday, 3 December 2010

The cost of a life

Ok so the snow turned out not to be quite as pathetic as I thought it would be. In fact I have about had enough now. It’s turned in to a nightmare. A real nightmare, so far 2 people have frozen to death. That’s the only two we have heard about so far but I’m sure that once the roads are open proplery more will be found. The 2 that have died so far, a man and a woman, was in there garden and must of fell not been able to get help and froze. Meals on wheels have been struggling to get to the people that they help; it’s only a matter of time before we find out how many have starved to death. These lives could have been saved. They did not need to die in such a poor way. Alone, cold, hungery, scared. All it would have taken is for someone to bother. I’m not on about the government, councils, or people that work for organisations such as meals on wheels. As far as I’m concerned they are doing their best. No, all it needs is for people to get off their arses. Yes snow is fun. Yes snow is cold and wet. Yes it’s dangerous. But how much effort would it take for someone to walk next door, down the road, or even phone and see if anyone needed help. Why can’t Joe bloggs next door go and ask Mrs. 92 if she has enough food, if her boiler is working properly? If you’re going down the shop why not ask the little old man who can hardly walk if he wants some milk or bread? Why not ask the mother with a newborn baby if she needs anything? Why think that someone else is going to do it. Not everyone has a family that can look after them and those that do may not be able to help. How much time and effort is it going to take? How many lives could we save if we as a nation got off our arses and done something about it. Everyone is complaining that they can’t get to work but how many people have you seen out there with a shovel helping to clear the streets? I have not seen one person. It doesn’t always take money to save a life most of the time it’s just time. Plain and simple. 5 mins here, 10 mins there, half hour cooking a meal for the man down the street.

Put yourself in there position. You’re old, infirm, unwell, have a new baby. How would you feel? Someone that reads this might be one of those. The person that is writing this is. I am disabled. I have a young child. I went out and asked complete strangers if they needed help. I phoned around friends and family and asked if they needed anything. If I can manage to struggle down the shop in the snow, with a baby, on crutches to get my nana some food why can’t everyone pull together? Why is it we are either too scared, embarrassed, or damn right stubborn, to ask for help or to offer it? Yes everyone that I asked if they needed help barr my nana didn’t. But the point is help was offered. I’m not saying go and ask your neighbours if they want their drive cleared, and when they say no, wait up till there asleep and do it anyway. That would be pointless and cold. But offer.

It could save a life.

Enough of the rant now. I know everyone’s properly sick of them now but have some snow pics:

Monday, 29 November 2010


It’s been awhile since I last posted. So here’s the quick low down of what I have been up to in the time I have vanished.

I fell out of the bath. It’s easier said than done. Falling in the bath is easy falling out takes real talent, baby I have that talent!!! I managed to dislocate my knee in the process and have a few extra bruises to add the works.

We pulled up the carpet in the hall way which meant I have spent the last 2 nights out of my mind due to the chemical cleaner we had to use to get the sticky stuff up. I honestly can’t believe that stuff is


We have a new kitten... She’s roughly 9weeks old. So feisty, cute, and looks a damn sight better then when we got her. She was flea ridden had ticks under weight and couldn’t clean herself. In the 4 days we have had her she has learnt to clean herself, steadily putting on a little bit of weight. She is so clumsy as while trying to play with one of our other cats she fell off the table head first and busted her tooth so that now pointing the wrong way and is going to cost almost £200. To put right. We haven’t manage to find a name that suits her so please feel free to leave a comment or message me any name ideas or suggestions you have. If I choose a name from you then I will be giving you a little surprise, nothing big.

It’s nearly Xmas. He he are you as excited as me? I can’t wait. We got our first lot of snow today. It was pathetic and within 2 hours had pretty much melted, snowed. Hopefully the first lot of loads. I’m not normally a snow person I like to look at it, but when I spend most of my life on crutches it makes things that are already hard for me seem impossible. Instead of clambering down the shop for some bread, I’m out travelling frozen wastelands looking for the lost treasure of some long dead pirate. Braving freezing temperatures, hidden patches of ice that are intend on slipping me up. Pretty to look at but deadly.

Pathetic snow
I have an appointment due to come through sometime next year with a neurologist. Should be interesting. It’s in London again which is going to be a problem but hopefully we get lost again. I can’t afford another £50. Taxi fair just because we didn’t know where we parked.

Thursday, 18 November 2010

One of my biggest cosmetic problems is dealing with the endless bruising that is part and package of EDS. It’s an absolute nightmare. I woke up this morning with a bruise on my inner leg the size of an orange. How it got there, well your guess is as good as mine. It wouldn’t be such a problem but I have only just started to get rid of the bruising from falling down the stairs awhile ago. Which is the reason for my absence. My little trip has given a lot more time to work on crafty bits. I have major problems with my cross stitch at the moment as nothing seems to be right. I think I have used the wrong grey for one of the wolves, the sky don’t seem in the right position. The only thing that seems vaguely right is the tree which I have only got half way through. I’m considering starting all over again providing that I can unstitch it without damaging the Aida. I really want to get it finished before my next project arrives. A Xmas stocking for my son cross stitched with polar bears and presents. I think it will be a mad dash to get it finished ready for Santa to fill up.

I have had an eye test and pick up new glasses on Wednesday which will make things easier. The doctor said about putting me on beta blockers to try to stop my migraines, I’ll admit I’m a bit worried about taking them. Let’s just hope they will help.

Nap time project

Monday, 8 November 2010

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. :)

Thursday, 4 November 2010


Just a quick note to say will be updating soon when I can work out what I want to say and how to say it. The great thing about pain it feels like I have been stuck on a merry-go-round for years and not been able to get off, my mind is quite frazzled at the moment. There’s so much I want to say but not too sure how to make it make sense. Wish me luck!

Tuesday, 26 October 2010


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!!

Sunday, 17 October 2010

Making the effort makes all the difference

Yesterday was a good day. I got a lay in thanks to my lovely partner. Managed to get most the housework done, while my partner got the car cleaned ready for our road trip today. My mum is also disabled due to EDS tonight she will be going to her first concert in over 20 years. Why? Because someone outside the family actually asked her to go. People stopped making an effort not long after mum had to start using walking sticks almost 12 years ago. This lady who is taking my mum is a single parent struggling to raise a teenage boy alone, is struggling to put herself through college, yet she took the time out to think about my mum. She has phoned ahead and got disabled access. It’s amazing how thoughtful someone can be. One little act of kindness as made my mum’s month. The depression she was going through has lifted, even if its temporary it’s nice to see my “old” mum back just how she used to be. I and my partner will be taking them to London later today. Can’t wait to see her face when they come out.

I’m making good progress on my new project the stripy scarf for my sister. It’s looking goooood hehe .

Friday, 15 October 2010

:'( bad week :'(

It’s been a long terrible week. So many times I have ended up in tears wondering what’s the point of it all. I have been in amazing pain due to my EDS, and to top it off I’m still having problems with my teeth. Trapped nerves again this time in another tooth. The filling started to “bubble” and has started to fall out. That’s when the pain was at its worse. I also ended up with an abscess just above the tooth in question. I phoned my dentist surgery who done the work. Begged them for an appointment, explained the pain I was in was unbearable even with taking countless painkillers on a daily basis anyway. Eventually they agreed to give me an emergency appointment in mid December. That’s over a month and a half away thanks allot Gibraltar house. Starting to think it might be a better idea to have all my teeth removed and have false ones then I know I’m not going to get any more problems with them. But knowing my luck I would forget where I put them.

I have lost most faith in family and friends this week too. I don’t know if it’s because I was already depressed or it’s what’s causing the depression. I feel like I’m fighting all the time. Fighting to keep strong, keep the house reasonably tidy, to get people to understand that yes; yesterday I could walk to the shop but this moment in time I can’t get off the sofa, fighting to make my partner understand. We have fallen out many times this week over things that normally wouldn’t be worth sighing about. I am fed up of the countless number of times I have gone out my way to help my family giving up most of my childhood to look after my mum who became disabled due to EDS while I was still in school. Yet whenever I ask them for help I am made to feel guilty, like I’m taking advantage or I’m a bad mother. I am fed up of it all and I am fed up of being fed up.

That’s why tonight I have decided to crawl, yes literally, out of my pit of despair and have started yet another crochet project. This time it’s for my sister as a Xmas present. She is really into all the emo/ Goth stuff that’s going on at the moment. So I decided to crochet her a stripy “moody” scarf. I’m making good progress considering I only started 2 hours ago. So far I’m on my 6 row of colour. I hope she likes it, my dad was worried she might think it was old grannyish. If I can get it finished in time then I will make her some fingerless gloves or arm warmers as she’s mental over those too at the moment. Ill upload some pics when I can find the memory card for my camera. I know I had it last week as I uploaded pics here. Hmmmmm maybe its behind the fridge......

I’m excited and somewhat apprehensive about next week. Guess what were doing.....potty training. I gave it a trail today and Connor managed to pee in the potty twice. Admittedly he peed over other places but came and told me which is a good sign. I think it will go ok. His got the sensation most the time so I guess just see how things go. If anyone has any tips please feel free to leave a comment.

Thursday, 7 October 2010

Wow it’s been a busy 9 days. Been doing lots of cross stitch. Done half a tree and some of the sky the wolf has his back ridge....kind of. I’ve been trying enterlac again I think I’m getting the hang of it. Still not how I think it should be but it’s looking more even. My son has been trying too eventually he got bored and started using them as drumsticks.

Cross stitch so far

Connor crocheting....kinda

Had appointment with a specialist in London. Travel was a nightmare, my son was a nightmare, and the appointment was a nightmare. Not particularly happy so I’m making an appointment with my rheumy tomorrow morning. I was happy with the person I saw today asking for blood tests and x-rays which had all been completed with-in 2 hours. Normally I would have to make another appointment to have them done so was amazing to get them done in one go. We had MacDonald’s for lunch which we had to eat sat on the pavement as there was no seating; I ended up with a hell of a numb bum. I have a lovely bruise from the blood tests, 2nd time lucky she managed to get blood from me. First time in years anyone has managed it that easy.

Blood test bruise

Tuesday, 28 September 2010

Well I got my new cross stitches come through 2 days ago. I haven’t made as much progress as I thought I would due to it being more complicated then I thought. The instructions and graph thingy are harder to read then I am used to. I won’t bother putting a picture of it up yet as there’s not that much to see.

I have been working on enterlac, and can’t work out where I’m going wrong. The “wrong side” (part I’m working on) looks brilliant but the other side seems all messy and uneven, the colour changes don’t seem to be even, there’s uppy bits and downy bits. If anyone can tell me what I’m doing wrong please let me know, ill pay you in cookies :P. I also received my Tunisian crochet hook this week, now just waiting to find the perfect wool to test it out with.

"Wrong side"

The wrong side is kinda neat. 

The right side is messy and has some raised bits on it, as im sure you can see. Im not sure where im going wrong. If you think you might be able to help, please let me know, ill give you a cookie : P

Connors managed to total his glasses, glasses that are meant to be child proof. He was trying to get out the back door with a football in his hands. Normally he holds onto the doorframe, but this time he didn’t. Head first onto paving slabs. His ok just a couple of scratches and a lot of tears. The glasses took most of impact so he was bloody lucky. We have to take his glasses back on Thursday to have them mended. I can’t wait I didn’t realise how much he bumped into things without them.

My tooth seems fine a little tender but I can now eat “adult” food like mash potatoes, chocolate, bread again. No longer stuck with soup and mush. Yay thank you tooth for sorting yourself out. Damned dentists.

I seem to be waking up every couple of days with a headache from hell. Not quite a migraine but not far off it. I think it may be something to do with either stress or medication or possibly stress related to medication. It could be too much chocolate or not enough......personally I like the sound of that more then I should. It could be from the weather. I’m refusing to put the heating on yet. It could be from spending so much time on the computer. It could be due to trying to work out why I got a headache. It’s properly that one.

I also got a new laptop this week. It’s one that my partner used. Bigger screen, bigger keyboard, all-round better. I can now play the games I want to though I doubt it will improve my ability to play them. I play CSS a lot. I normally last about a minute and half. I am truly crap at shoot ‘em games.

I have an appointment with Professor Graham, who specialises in EDS, coming up next month. I’m looking forward to it. I have so many questions for him. As it’s almost 3 hours travel there I’m hoping to make a day of it and see some of the sights around London. We’ll properly go to see my partners mum as she lives on the outskirts. Is it a bad sign when you count an appointment at a hospital a day trip? Even better it’s a hospital I haven’t been to before, yay, only question is now, what supports do I wear and should I get the ones that match my undies?

And for all those who are having a bad day, I present to you this picture. I only turnt my back for a second. Imagine the fun I had clearing it up, bearing in mind I had only finished scrubbing the kitchen before dinner. Ta-dar

Dont you just love kids

Thursday, 23 September 2010

New cross stitch

I have ordered a new cross stitch. It’s a wolf one, bigger then I have done before. Just waiting for it to turn up is driving me mental. Can’t wait to start it. I do a lot of cross stitch in the winter, so I am stocking up. I have a few smaller projects turning up at some point. I tend to get bored so have a few on the go.

so excited , hurry Mr Postman

I have learnt how to Tunisian simple stitch and I have to say I’m addicted. I am waiting for a proper crochet hook for it to turn up. I went into my local sewing shop and they had never heard of it. Thank god for eBay!

I can’t work out how to change colour properly while doing enterlac. It’s been winding me up. I get so far and it looks right then I look again after a couple more rows and it looks like my two year old has tried. I am rubbish at reading patterns and haven’t found the video tutorials much help.

Saturday, 18 September 2010

Past Crocheted bits

These are a few examples of my past crochet.  :)

Also have made: 3 blankets,couple of scarfs,and a few other bits

Crap dentist

So after being in agnoy for the last month, i finally went back to the dentist about my fillings i had done. I thought at first i had got a infection, or needed another filling. The pain i was in was unbearable. I was sweating constantly,crying and felt sick. The dentist had a quick look and said it was a trapped nerve, from where the other dentist had put the fillings in wrong!! Grrr now i have to be sedated again to have the filling taken out and relieve the pressure. Fucking asshole

Hook case

Yay i finished a project. A crochet hook case in purples.The pic is ment to be purple but camera flash distorted colour. I got the idea from a pattern but did not follow it. Gonna do another one now i know what to expect.


Found a technique that i really want to try its called Enterlac.It looks fantastic.

Wednesday, 15 September 2010


Me and Connor made cakes and biccys today. Around four plates of the damned things. Some of them were slightley burnt but then everything i cook is normally burnt to a cinder. I dont have a timer on my cooker so i wait till the fire alarm goes off to tell me its done :D


I had one hell of a migraine yesterday. My partner made me go to bed before 9:30pm. I sure needed it though as i slept almost 12 hours. I had some very weird dreams though. I remeber bits about them. Something about a dragon i had to ask something,but it was drunk and kept chargrilling people. Something about a car crash in which we all survived but ended up in a wildness camp with a bunch of crazies. Who kept trying to dance with us. The only sane person there was dwayne johnson (a former pro wrestler) who every few minutes would give me a teddy and a blanket and tell me it was nap time. Not a clue what any of it ment but woke up very confused.

Connors getting on well with his glasses, other then the fact his bitten the plastic bits off that go on his nose. He can defiently see better now and has a tantrum if i dont give them to him first thing in the morning.

My teeth are really killing. Its been a month now, my gums wont stop bleeding, my teeth are more sensitive now then they were when the nerve was exposed. Im having to use the tooth paste for todlers as when i use adult ones even for sensitve teeth i end up crying where they hurt so much.

I have been crocheting like mad this week and have been thinking about starting a crocheting blog. I might just keep it all on here though as it makes it less stressful

Thursday, 9 September 2010

Connors MRI

Connor had his MRI today for the mole on his back. Bloody long day I was up at 430am to get everything ready. The sedation worked very well and this time we managed to get the scan done with no problems. Yay. Our nurse was amazing, a true star. Connor came round from the sedation pretty quickly. We were home by 3-4ish. His gone to bed early as his still shattered, and so am I lol.

Connor sedated

Connor still wobbly from sedation

Connors MRI Pre Assessment

Connor has an appointment with a sedation person today for a pre assessment for his MRI on Thursday. He has a hairy mole on the small of his back right near the base of his spine. The doctors are worried that some hairs could be growing on the inside and will interfere with spine. They tried to do an MRI before whilst he was mildly sedated, but a stupid nurse decieced to wake him and start talking to him while we was putting him on the MRI table. So the MRI couldn’t be done. 6hours up the hospital and he was sedated for nothing. This time no one will be holding or touching him other than me. I won’t let him be sedated for nothing again. If anyone does wake him up then I will be making an official complaint against that person.

*was ment to be posted 07/09/2010*

Tuesday, 7 September 2010


On Sunday we went out for a works day out with my partners work mates. We went to Chessington world of adventures. It was a great day, even though I spent the entire day in so much pain all I wanted to do was throw up. We didn’t go on any of the big rides, but did go on some of the smaller ones with my son. It was great to see him having so much fun. One of my favourite parts was the bird feeding part. You get to walk through where all the birds are and they eat out of your hands. They are so sweet. My son wasn’t too sure about them but my partner and I loved them. Sealife was good too. We have some amazing photos, which I will post at the end of this. Things to remember next time we go is to take my damned crutches as my partner forgot them and also Connors big pushchair as it can take my weight and I don’t have to use crutches with it. Oh yeah and don’t leave the radio on in the car when we park up as we ended up waiting for the RAC to come and rescue us.....Again.
Feeding the birdies
Me and Connor on the dragon boats

Name change

I finally decided on a name, with help from my mum. It’s a long standing joke between us that we both need to be wrapped in bubble wrap so we don’t hurt ourselves or other people. So the name just seemed to fit.

Thursday, 2 September 2010

busy busy busy

My Aunt had a birthday BBQ this weekend, which was great to be able to go to a party and know that I’m not the only one that’s going to be covered in bruises bandages and on crutches. As most of her friends were too. No one looked at me funny when I dislocated my wrist trying to swat a giant wasp. (I got it too, with a lighter)

We went on our first family camping trip. Wow I thought camping was meant to be relaxing. All we did was stress out at each other, got lost, couldn’t find what we needed, as it was his bright idea to buy everything we needed on the way tent included. Ended up taking nearly 6 hours to do a hour and a half drive *face palm*. Dinner was crap, my son wee’d on me and was up screaming half the night. On the plus side I got pretty drunk which helped with the not liking camping and creepy crawlies. Also got to know my partners family and friends a bit more. Looks like well be going again. This time I’ll be taking more painkillers as managed to dislocate my rib, not too sure how but I think it maybe something to do with our camp bed. Or my partner’s brother coming into the tent early in the morning and shouting “FIRE” at the top of his voice.

My son had his first eye test. Not good results he needs glasses and maybe an operation. Not good the eye lady said he had the eye sight of an 80yr old not good when his not long turnt 2 . We should be picking up some temporary glasses which is half the prescription he needs till we can see a specialist. Connor seems to like glasses which are a good thing just wondering if the novelty is going to wear off, then we have hell trying to keep them on him. Or if as he will be able to see better his going to be into everything and anything and drive me mental as his going to be getting into trouble. We chose Mr Tickle glasses they look sweet but it’s so strange seeing him in glasses.

Sunday, 22 August 2010

Dentist update

Its been a few days since i had the dreaded dentist. Im slowly starting to remember things that i had forgot,silly little things really. The car ride up there managing to smoke nearly 6 cigerates in half hour, i feel sorry for the dentist as i didnt have any mints with me,which will explain why my lungs feel like i have been in a fire. The look on the sedative persons face when she asked about my medical history, hehe classic “what???” then having to explain in lamemans terms what EDS is and how it effects me. My dad rolling his eyes when she asked me how to spell it. The dentist warning me that if i am violent or abusive again he wont treat me. Honestly it was only once or twice.

I could finally feel my nose nearly 2 days later. I can smile normally, or what i count as normally its been a long time since i had the confidence to smile. Thanks to a addiction to energy drinks most of my front teeth had started to rot. So i stopped smiling. It feels weird to start again. A nice weird though. My teeth are super sensitive, i must be the only person to carry a straw around with me so i can drink without pain. Its slowly getting better, i had ice cream today which killed but was so worth it.

My partner goes back to work tommro. His been at home for a week as he had to use holiday up. Its the longest we have ever spent together,gonna miss him when he leaves tommrow. But will be nice to have time to dance around in my undies without him thinking im mad.

Monday, 16 August 2010

Demon dentist

I had the dentist today which went better then i thouhgt. i had visions of it being more like this :

luckly the sedation went really well and within 3 hours i was on the way home. It took over 6 hours for the numbing stuff they used to wear off. 6 hours of not being able to feel my nose, why my nose in not sure but it was completly numb. Everytime i smiled i looked and felt like i had-had a stroke, my left side of my face wouldnt move.Parts of it was twitching.
well im off to watch a film. With candles i really am spoilt sometimes!

Sunday, 15 August 2010

You might have EDS if....

You might have EDS if...
You have ever been kicked out of a doctor's practice for being too high maintenance.

You don't drink, but you still have more "mystery bruises" than a perpetually drunk frat boy.

Your medical records contain any of the following terms: "hypocondriac" "drug-seeking behavior" "munchausen by proxy" or "psychosomatic"

Any of your funniest stories start with "when my doctor first gave me (insert medication here)..."

Your doctor has ever uttered the phrase "THAT'S a new one!"

You are convinced your doctor should be paying YOU for teaching him about EDS.

You envy college students for the amount of sleep they get.

You never understood why everyone kept complaining about that 'one spot' on their back they could never scratch.

Your number of (wrong) diagnoses outnumbers your age

Medical students flock in the room to OHH and AHH

Your doctor asks you to perform "tricks"

Your prized possesions are your wrist braces.

You have to remind yourself not to hyperextend your knees when you stand for any length of time.

The only gym test you ever excelled at was sit and reach.

Freezing cold hands and feet in the summer, not to mention seasons when it is actually cold.

"I can only deal with one issue per appointment".

You hate the days you've got to get up before 11 am.

"We can't link your pain with the fatigue" - two years later - "Yes, fatigue is very common with EDS"

You take joy in doing your "tricks" to scare people.

You sit in gym and wonder how in the world people can be running and not limping or crying.

The more time you spend around normal people, the more things you find "wrong" with you.

You've never had anyone complain that you're not flexible enough in bed!

You've seen more doctors than you can count on your hands or feet.
Your partner/spouse lays down in bed first, arms open. You rearrange around them. Then they ask, "Where can I touch you?"

Your rice crispies aren't the only thing that "snap, crackle, and pop" in the morning.

Your list of symptoms is longer than the monthly grocery shopping list..

You've heard your mom say too many times to you, "Don't sit that way, Just looking at you makes MY joints hurt." and she gets a blank stare in return.

if you keep you symptom list and medical history on your laptop, so you can print it out for the doctor of the week, since you can't remember what happened when.

If you have tried to wash off a bruise, 'cause you didn't process what it was, and then stood in the shower staring at it stupidly.

When you have a hard time losing weight because all 20 medications you are on, say to take with food.

I i realized it wasn't normal not to be able to put sun block on your back yourself?!??!?

When the doc says 'EDS, you can’t have that, that’s only seen in text books.'

When zebras bring on a whole new meaning...

When you write down all your meds on the forms in the doctors office and realize there is not enough room to fit them all...then that same doctor says "You are so young to be on so many different medicines."

When the first thing every doctor asks you is "do you have a good pain management doctor?"

And then the last thing they say to you is "you need a good pain management doctor."

You carry a printout from Wikipedia so you don't have to explain EDS yourself.

You've had more sprains than anyone you know.

You fine a new bruise everyday.

When you do a "cool trick" your classmates are either disgusted or think its cool.

You're older than you look, but younger than you feel.

You've ever had to research medical journals or websites to find out what the "normal" range of motion is supposed to be in a particular joint.

You've ever looked at a picture of someone with a broken or dislocated joint and had to ask what the problem is because it just looks "normal" to you.

You come out of the Dr.'s office feeling as if YOU'VE done something wrong.

Your doctor gives you a stare and then raises their eyebrows in surprise when you tell them about your disease!

When you barely hit a part of your body on an object and you have a bruise for 2 weeks.

"You can't have all this pain at your age. Do you want to be labeled with chronic pain at your age?”

Your body parts go out more than you do.

What about you see a picture of what someone with EDS can do and then go try it, only to discover you can!

When you KNOW you can't do something considered normal, but can do all kinds of things considered abnormal!

When you wake up at 6, still tired, aching all over and go ahead and get out of bed just because it hurts to lay there.

When you get up at 6 and don't get dressed until noon.

When all you appointment books have late afternoon appointments because mornings "just ain't happening."

When you read these statements, totally relate to them, and laugh when you feel like crying because they are all true....

You dislocate one ankle sitting on it and promptly dislocate the other couple hours later same way.

If you've ever heard, "Uh huh, well, *I've* never heard of that," in a disbelieving and condescending tone from a nurse; you might have just told them that you have Ehlers-Danlos. "Yeah, riiight, how do you spell it?"

Your pill box resembles a pharmacy.

People say they know what it feels like to be irregular occasionally but they don't know what its like to be regularly irregular

You have pills in your bag, next to your desk, on your bed side table, at your mothers house, and others sprinkled around for emergencies. (You never want to walk that far.)

Simultaneously amazing and sickening a yoga instructor at your first yoga class. She doesn't believe you when you say that you haven't taken yoga before.

You are confused when someone asks, "Don't you hate when you get that itch you just can't scratch?"

They mention Ehlers-Danlos Syndrome on "House" or "Bones" and you scream "YESSS! WAY TO REPRESENT!" and high-five your roommate.

The retirement home folks on the city bus find out about your physical maladies and inevitably tell you "Sweetie, I know just how you feel" and you're at least 60 years younger than them.

~taken from Facebook group Ehlers Danlos Syndrome

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.

Monday, 14 June 2010


'Cos im looking at you through the glass
Dont know how much time has past
All i know is that it feels like forever
No one ever tells you that forever
Feels like home, sitting all alone inside your head