Odd question...

How do people make friends?
Yesterday I had a bad day. I suddenly realised that the only friends I have are people I've met online that I've never met in person and probably never will.

Yes thats right if I don't include the friends in my computer I don't have even one friend, not a single one!

Which was a rather upsetting thing to think about. Had me crying on and off for the rest of the day and I usually don't cry easily.

Then today I've been thinking about how people make friends. I've come to the conclusion that theirs 3 main times in a persons life that they make friends and these are school, college and work.

I did of course go to school but never made many friends. Out of the few friends I did have I tried to keep in contact with most of them, sent birthday and christmas cards with a letter but I only ever got replys from one friend.

I went to see that friend it must be about 3 or 4 years ago now and she had a kid which was born when she was 18 and I thought maybe motherhood would've made her grow up and be more responsible. It had but only slightly, most of my life other people my age have seemed immature to me and she still did. I haven't been to see her since and don't want to.

So I have no friends left that I'm in contact with from school and I never went to college. I want to work but it seems no ones invented a job I can do yet so I have no chance at the moment of meeting people and making friends at work.

I had a conversation with my mum last night. Well actually what happened is I started crying and asked if she could take me out more because I'm bored and lonely. Her reaction was to look awkward at my crying, she gets really weird about me crying the strangest thing being I've seen her hugging other people who're upset but she never hugs me. She then said she would take me out as much as she could I'd just have to let her know where i wanted to go.

So I spent the next few hours looking online for places I'd really like to go and then went and told mum that I'd found a website that gives details on accessibility of some places so I'd make a list of places I would like to go and then she could decide which ones we go to because I don't want her taking me places where she'l die of boredom.

I'm even thinking going to the supermarket food shopping wold be an exciting day ut for me, thats how bored and lonely I am!

My mum though might not stick to her word about helping me get out more. She said she can't get me out often because she works which is fair enough I'm not asking her to take me out every day. When I suggested we go shopping in the nearest city she said that it'd be the same as the nearest large town their'd be hardly any shops we could get the wheelchair into. This I'm giving her the benefit of doubt over for now and will just keep nagging her to take me to this city that according to her only has 1 or 2 accessible shops. I suspect though that she just doesn't want the hassle of pushing me around.

Whether or not I manage to nag my mum enough for her to take me out more often I still don't know how I'm supposed to make friends. Thats what I really need, a friend. Being able to get out more often would be good but if I had to choose between having a friend who would come round once a week for a cup of tea and a chat or going out once a week I'd choose having a friend.

For now I'll just carry on living my lonely life and hoping that some day I'll have a friend

Yesterday the workmen were knocking the fireplace out or making in bigger, not really sure which. Anyway they were having to cut through bricks which created a LOT of dust. You wouldn't believe how much dust unless you saw it.

Everything downstairs was covered in dust. Not just in the living room but in the front porch and even in the kitchen their was a layer of dust.

Of course I HAD to have my cup of tea. Can't survive long without a cup of tea. So when they stopped for dinner (where I live dinner is the meal between noon and 1pm and the meal anytime between 4 and 6pm is tea) me and the dogs went downstairs. I knew they'd need to be out by that time so let them out and as usual Naughty took ages to find just the right place to go so by the time I were getting the dogs in the workmen were coming back in to create more dust and I hadn't made my cup of tea.

Now I suppose any sensible person with asthma would forget the cup of tea and get back upstairs quick and shut the door because being able to breathe is a little more important than a cup of tea but then I'm not sensible. To me a cup of tea is more important than a little thing like being able to breathe.

I HAD to have my cup of tea so just went into the kitchen and made it. The kettle seemed to take forever and I were soon coughing. I had however been sensible enough to bring my inhaler downstairs with me so it was unlikely I were actually going to die for this cup of tea.

I got my cup of tea but ended up awake most of the night coughing and wheezing and having to use my inhaler almost constantly just to be able to breathe well enough that I wouldn't kill off too many more brain cells from oxygen deprivation.

Thankfully the workmen aren't here today so no more dust today. Hopefully if they're here tomorrow my breathing will have settled down by then otherwise I could have to risk my life for a cup of tea again!

We have workmen in at the moment. I'm not sure exactly what they're doing because as usual I haven't been told much. What I do know is that they're putting a wood burning stove in and they will need the floorboards in my bedroom up at some point to get to some pipes.

So in the day when they're here I go into the spare bedroom. I take my laptop and a book and cross stitch to keep me busy and have my meds in there because my mum and stepdad only know one of these workmen and although leaving boxes of morphine around where he can get to them would apparently be ok they aren't sure about the others so it's best to move all my meds into my bedroom. I'm not that suspicious of people, I'd have put them a bit more out of the way than on top of the drawers right through the door but would never have even thought about people taking them but my mums rather suspicious and was annoyed with my stepdad when she found out that some of the workmen would be people neither of them would know, she doesn't really like anyone in the house never mind people she doesn't know.

Sounds a bit bad that I couldn't manage to carry all of my meds from my room into the spare room all at once!

Theirs 2 matresses on top of each as a bed for me in the spare room because I can't sit for very long particularly now after messing up my pelvis and I usually don't make it through the day without a nap. I need to sleep when I get really tired no matter what time it is because if I try to stay awake my body falls apart more than usual.

Once the workmen have gone for the day I go back to my bedroom because the beds comfier and I have a tv in my room. Also until the wood burning stove is put in we have no heating which means the usually cold draughty house is freezing especially on a night when the temperature drops but it's warmer in my bedroom than it is in the spare room.

I woke at 1.30am and when I were still wide awake at 4am thought it woud be a good idea to take my book and cross stitch and whatever else I thought I'd want or need into the spare bedroom and then go to sleep in there because I figured I'd probably be tired by about 5am and exhausted by 6am so when the workmen turned up at 8am I could well be out for the count and it would be virtually impossible to wake me for a couple of hours and of course if that happened it would be typical that they'd want to be in my bedroom taking the floorboards up to get at the pipes so I'd be in the way.

So I started moving stuff from my room into the spare bedroom because they won't need to be in there so I could sleep as long as I wanted. The first thng I took was a clock that also tells the temperature. I knew it was colder in the spare bedroom but didn't realise quite how cold until I went into the room with some more stuff and saw the clock said it wwas 9 celsius! I then changed my mind and went back to my bedroom until 7.30am where it was still too cold for my liking at 14 celsius

When I were about 13 years old I had a flu like virus and after that I got tired very easily and my joints ached. The most pain was in my knees, the left one being worse and my knees got worse until I struggled to walk. I weren't given any pain relief and I were apparently attention seeking.

I missed alot of school that year because I had to move from one classroom to another for each lesson and if I were downstairs and the next lesson was upstairs I wouldn't get there until 10 or 15 minutes into the lesson. The teachers didn't punish me for being late but most of them wouldn't tell me what work I were meant to be doing and if I were caught talking to a classmate to find out what I were meant to be doing I would get into trouble. Other kids who couldn't manage the stairs because of a disability had their classes organised downstairs or they would work alone in the library with the teacher coming downstairs to explain what they were meant to be doing. It wasn't ideal but at least the shool did try to help them. I thought then as I still do now that it was thought by the teachers that I were attention seeking.

After about a year my knees started improving and my right knee almost got completely better. My left knee I still had problems with but it was much better than before.

The doctors encouraged me to exercise more telling me swimming and cycling are particularly good exercise. Well I never have been able to swim so it had to be cycling.

I took up cycling and my left knee gradually got worse. My foot had been turning in when I walked for some time but whenever me or my mum mentioned this to the doctors and asked whether this could be the cause of my knee pain they said no tat wouldn't cause any problems and I just needed more exercise




So I kept cycling and knew the doctors didn't believe me and started to think that seen as every doctor I saw didn't believe me maybe it was all in my head. Thats when I made my big mistake. I started fighting the pain. If I intended on cycling 10 miles and myknee hurt quite alot after 5 miles I would cycle 20 miles to punish my knee and to punish myself for imagining this pain. You would think I'd have realised it wasn't all in my head when my knee was screaming at me but I'd had too many people not belive me by then

Over a couple of years I destroyed my knee. I kept seeing different doctors and kept being told theirs nothing wrong and that my foot turning in wouldn't cause any problems.

My knee got worse. It got to the point it would sublux or dislocate everytime I put weight on it. Finally last year I asked my rheumatologist about a hinged knee brace. She referred me to a nice guy who had never seen a knee quite like mine. After me telling him my knee dislocated sideways he told me that was impossible. So I showed him! He went a bit white and then was lost for words finall getting out 'umm...erm...uhh...its not meant to do that' yes that would be why I'm here wouldn't it because my knee is doing something it's not meant to. He then gave me my new knee, well ok it's not an actual knee it's a knee holder togetherer.It doesn't always work but it does a pretty good job. Felt really strange when I first walked with it on, I hadn't walked without my knee at least subluxing wth every step for years. Unfotunately it also removes skin and then my skin takes ages to heal so I can't wear it all the time.

Apparently my foot turning inwards has stretched a ligament on the outisde of my knee and that's why it's so much wobblier than my other knee.



I'm seriously starting to wonder if me and my mum should be doctors. We seem to know more than a lot that I've met! Although thankfully their are some good doctors out there. I have just registered with a new GP and she has actually heard of ehlers danlos syndrome!! And whats more she wasn't afraid to ask me questions about my condition, she was asking the difference between hypermobility type ehlers danlos syndrome and hypermobility syndrome. I've recently heard that a paper has been done about EDS3 and HMS and apparently the specialists have agreed they are the same thing but I haven't got my hands on the paper yet.

Wow....

I've just looked on home choice plus and theirs a house I'm not ony eligible for but is on the ground floor AND allows dogs! Ok so I am currently 124th on the list so it's very unlikely that I'll get asked to go and look at it but at least their are some properties out there possibly suitable for me.

So this week their were in the city I'm looking at moving to 18 properties.

Of these there were 13 I weren't elegibile for because I don't have kids or aren't old enough.

So 5 left and of those 5 their were 2 of those that were ground floor but for over 55's

So I were down to 3 and one of those was 2nd floor and I'm guessing there was no lift so that wouldn't be much good for me

2 left and one was on the 3rd floor so again no good to me

Then I got to a ground floor flat which allows pets and has a garden AND it says nothing about minimum age. The only problems being I have been told it's in an area where theirs alot of asbo familys and theirs not much public transport but theirs got to be more public transport than their is here. I may need to get a faster power chair though so I can just speed off as soon as I get out the front door until I'm well clear of the area!

2nd Beagle Cross stitch

This is another cross stitch of a beagle I did which was auctioned to raise funds for my power chair

The war on ignorance

It is shocking how many people park their cars on dropped kerbs. I really just cannot believe how many times I've seen cars parked on dropped kerbs but I think many people just don't think about the problems they could cause which is why I have found and bought some stickers that say:

'Please next time keep to the road and think of us leave the pavement and dropped kerbs clear! you could be fined up to £400'

This is where they can be found for anyone else who is sick of people doing this and thinks many just need to be reminded why it's a problem http://www.disabledstickers.co.uk/index.asp

I also got a sticker to put on our front door because I spend most of my time in my bedroom and if someone comes to the door I used to try to get downstairs to answer the door but by the time I got down there on the snail speed stairlift whoever was at the door would be long gone. So I gave up even trying to get to the door along time ago, their was no point because I couldn't get there in time so I'd just ignore it. I now have a sign on the door from the same website that says:

'Please allow me time to answer the door' with the disabled picture, you know the one with a person sat in whats supposedly a wheelchair (funniest looking wheelchair I've ever seen!)

And then again from the same website theirs some specials stickers just for those people who really are ignorant, arrogant, selfish ********, and a whole load more ****** words I shouldn't say. Yes I am of course talking about those who park in a disabled parking space and don't have a blue badge. Ok so a sticker probably won't make them change their ways but it may embarass them a bit and it will make me feel alot better. Heres the stickers just for those really selfish people:

'G' Thanks you've had my parking space do you want my disability too?'

So next time I go anywhere I will be armed with my stickers! I just got my own blue badge a few days ago. Even though I've been unable to walk far for years I have NEVER used a disabled parking space and would never have even thought of using one because I didn't have a blue badge so weren't entitled to park there (or rather have my mum park there when I were with her) There is no excuse to use a disabled parking space without a blue badge.

Apologies if anyone reading this feels like they just got a lecture it's just something I feel very strongly about and get rather annoyed when I see all the disabled spaces taken up with cars not displaying a blue badge and the worst thing is how many get away with doing it time and time again.

Anyone like a cup of tea?

I were banned by my mum from doing most housework years ago. It was getting expensive for her replacing everything I dropped when I were doing the washing up. The hoovering made my shoulder dislocate back when it was nowhere near as bad as it is now. Nowadays I don't have to do anything for my shoulder to dislocate, it just falls out of it's socket.
Cooking would be unbelievably dangerous for me so my mum or stepdad cook every evening. To give an idea of what would happen if I tried to cook I'll tell you what happened today when I made a cup of tea and although sometimes I don't manage as many injuries most times I do and I have managed more injuries doing the seemingly simple task of making a cup of tea:

First I lift the kettle and realise their isn't enough water in it for a cup of tea so I get a jug to fill the kettle with enogh water. I have to use a jug to fill the kettle because I can't get the lid off the kettle. I dislocate 2 fingers and my shoulder whilst holding the jug with both hands and pouring the water into the kettle. I turn the kettle on and put myself back together

Next I need to open the tin the teabags are kept in. I dislocate another finger but am impressed that I manage to get the sugar with no dislocations. I put myself back together

I then need to get the milk out of the fridge. Only the fridge is too strong for me and I dislocate a wrist and 3 fingers. I put myself back together

Then I need to get the top of the bottle. The plastic lid comes off easily on this bottle but I soon give up on the foil and get a knife to cut my way in. I'm in and without any injuries, this is a great achievement!

The kettle has boiled. Seen as I hurt my good wrist yesterday (doing such a dangerous activity as flushing the toilet) I need the help of my left hand which quite possibly saves it from being scalded when I spill boiling water all over.
I dislocate my knee whilst I'm stood pouring boiling water seemingly everywhere but into the cup. I also dislocate my shoulder and wrist. I put mself back together

I add the milk then dislocate a finger stirring the tea. I put myself back together

I wrestle the fridge door open again dislocating my wrist and shoulder and subluxing my hip. I put the milk away then put myself back together

Introducing the dogs

Today I hurt my good wrist doing a very dangerous activity.... flushing the toilet! Luckily I didn't do this until after I'd exercised my youngest dog who thinks her name is 'Naughty'
I have 2 dogs who to avoid embarrassment for them I'll call 'Naughty' she's 3 years old and 'Terror' she is 7 years old.

At the moment my pelvis is falling apart far too often, it's too cold and too wet for me to go out on the power chair to take the dogs for their walks. So I've had to find another way to exercie Naughty. Terror is quite happy if she gets to play with Naughty teasing her with toys and stealing toys off her for a few hours during the day but if Naughty isn't entertained when poor Terror is having a nap she often gets up to all sorts of naughtiness.

The way to exercise a bored dog when you can't take it for a walk is:
-Take one bouncy toy such as a ball or even better a kong
-Sit down at the top of the stairs
-Call dog to you and show the dog the toy
-Throw toy down the stairs remembering to be very careful doing this if you may dislocate or otherwise injure yourself doing something so dangerous
-Watch dog go racing down the stairs trying to catch the toy as it bounces all over
-Hold your breath as the toy bounces up almost hitting the window near the front door
-Laugh at dog as she skids on the mat near the front door and runs into or almost runs into the front door
-Laugh at dog as she's running up the stairs with the toy because she's stumbling up the stairs yet managed to run down much quicker without falling
-Take yucky slobbery dog toy off dog and repeat above until the dog is tired and goes and lays on your bed chewing the toy until she falls asleep

The man

Yesterday I realised I couldn't travel the 4 hours on a train to see my boyfriend anymore. Almost everytime I travel I end up being ill usually just with a cold but having a cold makes my joints hurt more and makes them dislocate more because I don't have as much energy so fail big time with trying to keep everything in joint. Also my hips have got a bit worse everytime I've travelled which I've stubbornly being ignoring because I want to see my boyfriend. My pelvis is now punishing me, it's falling apart often and sitting hurts far too much for me to manage to sit on a train for 4 hours.

So today I'm angry because my EDS may well destroy my relationship. I can't travel there until my pelvis settles down. I'm contacting the shoulder specialist tomorrow in the hope he'll put me back on the waiting list now that the weird stuff with my heart has stopped and so I won't be visiting my boyfriend again until after I've had the shoulder operation and recovered enough to travel.

I'm hoping he will come and visit me but he hasn't done so far and is very anxious about travelling. He also has a mental illness and is worried that he'll be ill whilst he's here. So I'm not sure whether he will manage to come and stay here or not.

If he doesn't then I think it will depend how long it is until I can travel again and visit him as to whether things will be ok with us or whether we'll just drift apart

Just thought I'd show off some of my cross stitch. This is a beagle which was later framed and auctioned to raise funds for my powerchair

Family...again...

No not my dad this time. He's gone back to Ireland so no more insensitive comments from him or tickling my feet making me dislocate for probably another few years.

On Thursday it was my stepdads birthday and we went out for a meal. He didn't know that my mum organised a surprise party for last night. So after going out on Thursday night my pelvis was rather annoyed but I thought I'd just stay in bed as much as I possibly could on Friday so I could go to the party. The party was at the same pub that we went to for the meal. My joints particularly my pelvis still weren't good on friday night but I were intending on going to the party anyway because I knew it would be fun and I won't be going anywhere for the next few days so would have time to recover. I didn't get to go to the party though, I weren't invited. Why weren't I invited? Because my mum would have to drive if I went instead of them walking home and she wanted to drink. I weren't all that surprised this time because something similar happened at christmas.

It looked like my mum would be alone at christmas because I were planning on going to stay with my boyfriend and my stepdad was told he would be away working for a few weeks. So I felt guilty that she'd be alone and decided to stay at home and go to stay with my boyfriend just after christmas. As it turned out my stepdad was home at christmas and his son came and stayed for a coupe of days too. On christmas eve the went down to the pub without me but I were ok with that I thought I'd get to go the next day.

Christmas day morning we had a glass of champagne each (it goes well with morphine) then opened our presents. Or rather everyone opened their own presents except for me, my dogs opened my presents! I were then looking forward to going to the pub and were going to have a baileys when I got there. I don't usually drink because morphine and alcohol together isn't really a good idea but I feel ok after drinking the champagne so figured one baileys wouldn't kill me. I were rather annoyed when they all decided to go to the pub without me just because they all wanted to drink. So being able to have alcoholic drinks at the pub was more important than spending time with me on christmas day. You would have thought that my mum would've been happy to drive so I didn't miss out and then she could've drunk as much as she wanted once we were home but no they thought it better to just leave me at home all alone for hours whilst they went out and had a good time. I may get my revenge though, if it looks like my stepdad will be away next christmas I'll go and stay with my boyfriend and leave her all alone for christmas and be able to not feel the slightest bit guilty!

how does the government...

intend on getting almost all of those on disability benefits back to work? I were pondering this question in the early hours of the morning whilst I were trying to distract myself from the searing pain from my pelvis. The reason I were thinking about this was mainly that yesterday it was my stepdads 6oth birthday so we went to the pub for a meal. It's a pub I used to be a regular at when I could walk much further and cycle and my mum and stepdad still go to often it's a great pub it does brilliant food and the landlord and landlady are very friendly and look after their regulars.
But their is the problem of accessibility. Theirs steps up to the door into the pub, they aren't steep steps so I guess they could be worse but still steps are a problem. Theirs also not much room to manouvere a wheelchair once in the pub and of course their is no disabled loo. They have tried to make it easier though for those with mobility problems that do manage to get into the pub. In the ladies toilet their is a hand rail, their isn't much room in there and to be honest I can't really see what more they could do except get a ramp for outside so wheelchairs could be got into the pub easier but then if they did that their'd still be the problem of no disabled toilet.

So with the amount of places that have steps up to them or don't have a disabled toilet or worse still have a disabled toilet but not enough room for a wheelchair to go next to the toilet so someone who cant stand can transfer from wheelchair to toilet where do the government expect all those who can't manage steps and need a disabled toilet that does actually fit the requirements for a disabled person to work??

I have come up with 2 theories and they're both rather depressing but worryingly I wouldnt be that surprised if they are what the government are planning:

Theory 1: when the issue of disabled toilets in the work place and the lack of them is raised all the disabled who require the use of a disabled toilet will be told to go out and buy adult nappies!

Theory 2: almost all peole claiming disability benefits will be moved onto jobseekers allowance and have to apply for lots of jobs they can't do or can't get access to the work place to be able to do and if they don't find a job within a certain time their benefit will be cut and in a few more weeks after they've been desperately trying to find a job they can do and that the work place is also accesible and likely failing their benefit will be cut further and this will go on until they can't afford to pay their bills, buy food or pay their rent. they will then become homeless and soon die which will save the government money. the general public won't care because they're all being brainwashed into thinking we're all faking our disabilties

On a happier note I had a good night out last night although my pelvis is still punishing me for it it was worth it. You never leave that pub hungry, they serve big portions at good prices and whats more they brought a birthday cake out for my mum and stepdad because it was my mums birthday not long ago too! Cost me £80 for meals for the 3 of us and and that included the bottle of wine my stepdad had, a couple of beers for him after that and 2 or 3 soft drinks each for me and my mum and my stepdad did go for the most expensive wine their was so I had been expecting the bill to be more than that. This is the website for the pub I went to: http://www.blacksmithslastingham.co.uk/index.html and no I'm not getting paid by the landlord to advertise it! I just think it's a brilliant pub except for the disabled access.

My mum has organised a suprise party for my stepdad down there tonight so I'm getting rested up ready for that although I'm not certain as to whether I'm invited. My mum told me about it but has never actually asked if I want to go. I hope I am invited because even though I know I shouldnt go out again and will suffer for it if I do I don't get out often when I'm staying at my mums house so I hate to miss any opportunity to get out of the house

An easter to remember

My neck has just done it's most bizzare and slightly worrying thing again. First it clunks then I can't move my head and my arms and hands are going tingly and rapidly losing strength. The first time this happened it was rather alarming, now it's just something else I've got used to and which I haven't even tried to tell my doctor because I'd just get that 'this person is obviously in need of a psychologist for her imaginary problems' look. The first time it happened I suppose i should've used what strength I had left in my arms and hands to phone an ambulance but that of course would be sensible and I am not sensible. So what I did was with great effort move my arms to get a hand one each side of my head pull up a bit then move my head about until my neck clunked again. It worked, strength returned to my arms and hands and the tingling soon disappeared but why is my neck doing this? Well it's all down to a car accident.

Almost 4 years ago my grandad had drove to my mums house where I live and was driving me to his house for my Sunday dinner. My grandparents are great I almost always used to go to them for Sunday dinner. It was easter and as a special treat we were having duck which I hadn't had for years so were really looking forward to. Back then I didn't have a diagnosis and although my knees were hurting more I had few problems apart from a subluxing/dislocating jaw and my left shouder dislocating more and more frequently but still only about once a month.

The car in front of us went round a corner and theirs a petrol station just round that corner, you can't see it until it's almost too late. So the car in front braked quite hard when it saw the petrol station obviously deciding to go and get some fuel. This wasn't a problem as my grandad was far enough behind him to brake in time but the car behind us didn't brake and ploughed straight into us.

Now my grandad used to be known for fighting so when he got out of the car whilst I were still trying to figure out whether i'd hurt anthing apart from my shouder which had dislocated I thought I'd better get out before he started thumping people! I did manage to calm him down quite quickly and then saw that the passenger in the car that hit us was sat holding her neck and looking as though she was in a fair amount of pain so I tried to get the traffic speeding along the busy road to slow so I could dash across to the petrol station and get someone to call an ambulance, running with a dislocated shoulder is not a good idea! So after getting a member of staff in the petrol station to call an ambulance I thought I'd better go back over the road to keep an eye on my grandad. Just as I were walking out of the petrol station i thought 'ouch my neck hurts a bit too oh well it can't be anything much or I'd have felt it sooner'

So I got back over the road and waited for the ambulance and they were amazed when they came to me to start with cos I were holding my arm and I just calmly said 'oh I'm ok it's only a dislocated shoulder it's the lady in that car needs your help more' after my experiences with other medical people I were expecting to be told I hadn't dislocated my shoulder because I'd be in alot more pain if I had but no I were asked if I wanted to sit down. I didn't because I knew my knees would get stiff so I just kept wandering around.

Once they'd seen to the passenger in the other car they got to me and after a quick look at my shoulder agreed that it was dislocated then asked if I had any pain elsewhere. By this time my neck was getting rather painful but I didn't want to make a fuss about something that was probably nothing really so I said my neck was aching a little bit. All of a sudden it was 'stand still! Don't move! How much have you been moving around?'
me: well I ran across the road to call you guys for that lady and then ran back across and I've been wandering around since then so that my knees don't get stiff'
'You did WHAT??!?!'
So some people may have panicked then espcially when the neck brace and spinal board were brought out but they assured me it was just a precaution and I did actually feel like I could trust them which with how much I've been messed about by medical people they must've been pretty damn good to be able to put me at ease! Had a nice chat in the ambulance too on the way to the hospital and I seemed to be actually being listened to which for me seemed quite a novelty!

However once I got to the hospital I were waiting hours for x rays and when my mum got there a few hours later (she took awhile because she went to my grandparents house to eat the dinner that I missed out on) I found out why a machine kept bleeping at me. Apparently my heart rate kept going from the 70's up to 150 but no one had bothered to come and see if their was something wrong and when a nurse finally turned up and my mum asked her about it the nurse simply turned it off!
I put my shouder back in joint myself long before I were told the results of my x rays. Apparently my neck was fine but my shoulder was dislocated so they would sort that out for me soon. The doctor then got rather annoyed with me when I said no need to do anything to my shoulder I put it back in joint myself over an hour ago. I were then allowed to go home and were told my neck should be fine in a few weeks.

I had no problems at all with my neck before that accident but since then it's crunched, cracked and most worryingly clunked. So I'm beginning to wonder whether whoever looked at the x rays of my neck was wrong and actually it was more than whiplash but it's something I'll probably never find out so for now I just keep my mobile phone with me at all times incase one day when I try to clunk my neck back it doesn't work

Properties available for under 60 disabled with pets...

There are none! Not a single one, not in 9 months have I found a single one

I really should've learnt by now now to get excited when new properties go up on Home Choice Plus but I still got excited when I woke this morning and after putting my body back together (quite literally!) I saw what day it was and knew there would be new properties.

At the moment I live in a little village that boasts about 25 houses a post box that isn't big enough to post parcels and an old telephone box that probably doesn't have a working phone in it. I loved living here when I could cycle and walk miles but now...well it's a miracle I haven't died of boredom!

I met my boyfriend online in a disability chat room we were both just looking for friends and that's how it started out with us but a few months down the line we realised we felt more than friendship for each other so decided to meet up and things went from there. Almost 2 years later and I spend 3 or 4 weeks at home with my Mum and Stepdad and then travel an hour in a car and 3 hours on 2 trains to stay with my boyfriend for 1 or 2 weeks. All this travelling isn't good for me though, I think I've been ill more often with colds and flu since I met my boyfriend than I have in the rest of my life! It would be difficult for him to travel to visit me because he gets very anxious about travelling and has a mental illness so would be worried that he would get too stressed about meeting my family and end up being ill.

So I've been on the housing register since the end of May 2009 to get my own place nearer where he lives. How it works is I log in every week to Home Choice and I can 'bid' on 3 properties the bidding part is just registering your interest really. I could of course make things a little easier by myself by finding my 2 dogs new homes but my dogs are my only friends and have kept me from going (completely) insane whilst I were stuck in the house for days, weeks sometimes months on end. I can't repay them by getting rid of them just because it could make finding somewhere to live easier.

So this is what we have this week: 16 properties in the city I'm looking at. I'll weed out the ones I'm not eligible for first.
Theirs 9 I'm not eligible for and why am I not eligible? because I don't have children or because I'm not old enough.
So that leaves 7 of which their are 5 which aren't on the ground floor so aren't suitable for me because I can't manage the stairs anymore.
So we're down to 2 both of which don't allow dogs.

I'm going to have to try to find out how much housing benefit I would be entitled to and then see whether theirs any chance I can afford to rent privately because most places that are suitable for me that are ground floor are for people over 60, why?? I've had many people mostly elderly people telling me I'm too young to be disabled and no housing for the young disabled just encourages this idea. Of course because I'm under 25 I may only be able to get shared room rate on housing benefit and I seriously doubt I'd make a good flat mate. Many people my age wil go out drinking until 3 or 4am whch I don't really have a problem with, it's great they can go out drinking and dancing all night and then be up to doing it all again the next night but some are rather inconsiderate and I'd get woken up at 3am by them staggering in probably with a few more mates to carry on the party. I need my sleep! I know I sound like a grumpy old woman but if I'm kept awake too long I get too tired to have the energy to keep eveything in joint. Ok so I fail anyway at keeping everything in joint but what I mean is I dislocate a lot more if I'm tired. Plus I won't be able to pull my weight with the housework.
So I just have to hope that whichever monkey will decide whether I'm severely disabled and so should get more on housing benefit so I can (hopefully) just about afford a place by myself is in a good mood that day

Goodbye

when my dad moved to Ireland 5 or 6 years ago he didn't take his mountain bike, he said for the time being I could use it when I wanted. I were struggling with cycling by then but after years of various doctors, nurses, consultants, paediatricians, physiotherapists and any other medical professionals I've forgotten about telling me their was nothing wrong and just to get more exercise I thought they must be right and so if I intended on going for a 15 mile cycle ride but my knee started hurting after a couple of miles I would punish myself for imagining this pain and cycle 30 miles pushing myself hard so my knee was screaming at me to stop, I wouldn't stop though I would only push harder. It sounds so stupid now that I did that but when as a child and teen your constantly told that theirs nothing wrong with you your just looking for attention or just being lazy you start to wonder if maybe you are particularly when it's mostly those in the medical profession telling you this because surely they would know if their really was something wrong. Of course a few years ago I got a diagnosis but by then the damage had been done, I can't blame it completely on all those people who didn't believe me who said I were attention seeking or it was just growing pains or tried to send me to a psychologist because I were so obviously in need of one! I can't blame it just on them because it's my fault too, I were stupid enough to listen to them and not listen to my body.

I used to be addicted to cycling, seriously. I would get up at 5am in the summer just so I had more time to cycle and that was when I were a teenager. Cycling always caused pain but then so did everything else and at least cycling was fun. I loved it, I sometimes managed to cycle 40 or 50 miles I were always pulling muscles but rarely managed to rest for more than a day to recover from injury. Even after I had a little accident that landed me in a&e I were cycling just a few days later. I'd been going down a hill (typically on the quietest road in the area you know the kind of road that has grass growing up the middle) and went round a corner but my shoulder decided not to go round the corner and dislocated which sort of distracted me and next thing I knew I were flying through the air and thinking 'hmmm guess this is why I should wear a helmet' I were then found sprawled in the road unconcious by the next person to drive along the road, never did have much idea of how long I were there before I were found. But a few days later still suffering from a slight concussion I ventured out on the bike again still without a helmet. Hey I never said I'm sensible!

So yesterday I said goodbye to that part of my life. Since I got my power chair last year everytime I hobble down to the garage to get it out I see my bike just stood there dusty now and it always hurt everytime I saw it especially if my eyes happened upon one of the many scratches and I'd then remember how that scratch happened and most of my crashes being my fault I wonder how I'm still alive I laugh at my stupidity back then but then almost cry as I remember flying down hills as fast as possible only using the brakes enough to get round corners, the wind in my hair, the sense of freedom and not a care in the world. It's all gone now and yesterday my dad took his bike and mine too. It's a relief to get rid of the bike because it's always been a constant reminder of how life used to be but at the same time I'm saddened. I suppose I'm doing something I need to do, mourning for the loss of what my life could've been. I won't say should've been because I know theirs many good things in my life now that I wouldn't have if it hadn't been for my stupid body falling apart. Plus I were so bloody stupid when i were cycling I likely would've gotten myself killed by now if I could've kept cycling!

Family aren't they great

Today my dad might be visiting. I don't see him often because he lives in Ireland, actually hadn't seen him for over 2 years until he visited last Wednesday. We used to be very close and whilst my mum seemed unsure as to whether their was anything wrong with me when I were a kid my dad always seemed to believe me. Then the wicked witch of the west came along. I have a diagnosis now so you would think that would mean I would be believed by everyone but no she seems to have brainwashed my dad into thinking theirs nothing wrong with me. I don't really know how he can believe that I'd give up cycling which I loved just to fake being disabled and some days only crawl out of bed to go the toilet making sure I keep myself well dehydrated so I don't need to go to the toilet as much because moving hurts too much. How he can think I'd spend the money I've been saving up for years which I were saving up to buy a good road bike but have now had to spend it on a power chair, does he really think my life's fun and easy??

Last time I went to Ireland to visit him I checked and double checked that a wheelchair was arranged for me to borrow at both airports flying both ways. I then explained I could (can't now but could then) walk up the steps onto the plane but couldn't walk down steps and asked whether that would be a problem and could they carry me off. I suspected it may be a problem because of health and safety but were told no it wasn't a problem they could carry me off. So I went on the day and were impressed that their was a wheelchair there waiting for me. They did almost forget to put me on the flight! The assistant said he'd be back when it was time to board and then dissappeared and then apparently completetly forgot about me! I had to have a 'praise the lord I'm cured' moment, thats what I call it when I get out of a wheelchair and walk a little way, some people really do seem to think it's a miracle others just glare at me like I'm faking it. Anyway after hobbling over to the nearest member of staff who seemed not to have notice me sat in the wheelchair in plain sight I were hurriedly put on the plane. The flight was fine and when I got to Ireland their was a nice hunk there with a wheelchair right at the bottom of the steps for me and as soon as the other passengers had got off I were carried off.
All was fine on the way back too until I got to Teeside airport where I were told they couldn't carry me off because of health and safety! Now remember I had arranged this, had checked and double checked that me being carried off wasn't a problem. It wasn't until the (Irish) pilot came through and said he'd carry me off that they decided they were being a bit silly and would carry me off afterall. So that put me off flying and with not driving it would be difficut for me to go over there on the ferry and would mean hours in a car then being seasick on the ferry and then hours more in an old rattly landrover because my dad lives on the west coast of Ireland

Introducing me bendy rebel

Ok this is my first attempt at a blog and my life isn't very interesting but even if no one other than me ever reads this blog hopefully in a year or two I'll be able to look back on what my life was like and think "wow my life was rubbish then, it's much better now!" For the sake of anyone who does read this blog I'll tell you a bit about myself. So here goes:

I'm a 23 year old woman, no not a lady, most definately NOT a lady just a woman

I have 2 dogs which for the sake of anonimity (incase I say anthing against any relatives and they come across this hopefully they won't realise it's me lol) I will call the oldest Terror as she is a terror and the youngest Naughty because she seems to think thats her name anyway!

I am disabled and am on incapacity benefit and disability living allowance and no I am not one of the thousands of fraudsters that the government would have you believe their is claiming such benefits

I have ehlers danlos syndrome hypermobility type which is a connective tissue disorder. I am in pain all the time and have been for many years and most of my joints sublux or dislocate quite regularly and I am now taking morphine to keep the pain at a bearable level

I am addicted to cross stitching and quite possibly morphine! Oh and chocolate too of course

Well their'll be more later today or tomorrow I'm not sure yet what about. Possibly how many dislocations I've had and what stupid ways I did them. Or maybe about the 'wonderful' benefits system. I also have alot to say about the 'wonderful' NHS

The aim of this blog if anyone reads it is to bring more awareness of ehlers danlos syndrome (EDS) and hypermobility syndrome (HMS), hypermobility syndrome is at least very similar to the hypermobility type of EDS and might be the same thing. Many people go undiagnosed for years. I also would like to make people more aware of what life with a disability is like, how difficult things that seem so simple to others can be for those with a disability and also just how many inaccessible places there are even now in 2010 but most of all it's just going to be my story, my experiences, my life which is at the moment rather boring