I were going to write this yesterday but if I had their would've been a lot of swearing in it! I decided I needed to calm down before I wrote it.
On wednesday night the local Womens Institute (W.I) were meeting at a village hall not far from where I live & they had a lady coming to show them how to make a couple of christmas decorations. Yes I know it's a little late or very early for christmas decorations depending which christmas your thinking of but we did have 25 inches of snow when she was supposed to be there & the roads were either closed or pretty dangerous.
So Wednesday night came around & me & mum went to the village hall which surprisingly is wheelchair accessible once you've got over the path that almost shakes you to pieces! Thankfully the path really only bothered my legs which felt like they were vibrating, if my shoulder was feeling like that too I wouldn't have made it over the path as I'm being extremely careful with my shoulder.
Anyway we had a good evening, my mum stayed too & enjoyed it. I did get frustrated making the first decoration (the angel) because it was too fiddly, I kept dislocating fingers on my good hand and I still have my other arm in a sling which doesn't exactly help matters. I don't think I'll be trying to make another of those decorations as it would be too fiddly even with the use of both arms.
The second decoration was much easier to make & I'll certainly try doing more of those.

It was when we got back home that I had problems though. I got on the stairlift & set off upstairs & it stopped suddenly jarring my neck (which is still quite painful now) but much more worryingly jarring my shoulder, the shoulder I have to be very careful with & now over 5 weeks since surgery still aren't allowed to move, the shoulder that my surgeon told me if this operation doesn't work it's very unlikely he or anyone else will be able to improve it. So now I don't know whether my shoulder is ok or whether thats it the stairlift stopping has messed my shoulder up for the rest of my life.
It would be annoying enough if this was the first time the stairlift has done this but really I couldn't blame anyone then because you can't predict when somethings going to go wrong with a piece of equipment but this same problem has supposedly been fixed at least 6 times! The people meant to have fixed it have on at least 3 occasions shown their incompetence by saying they've checked it thoroughly but failed to notice a screw missing from quite an obvious place under the seat which even folds up to make it more obvious!
So on Thursday morning my mum phoned the stairlift company yet again & explained that until the stairlift is fixed I cannot use it because when it stops suddenly it jars my shoulder & could easily permanently damage it. The stairlift might not have this problem again for weeks or even months but I don't know when it will happen again so I can't risk using it. They sent someone out yesterday afternoon. Of course it worked fine then so he's going to request a new part but doesn't know if it will be authorised because he couldn't find a fault. So I will be stuck upstairs until at least monday. Thats 4 days that I probably have less freedom than a lot of prisoners who have done terrible things! I will miss a party, probably the only party I'll be invited to all year & I will miss cross stitch club unless they get here & fix the stairlift monday morning

I got rather behind in my blogging. So here's what's been happening:
- I enjoyed a couple of weeks of being able to walk better than I have in at least 7 years, all I needed was my leg in a cast! Waiting for orthotists appointment now in the hope I can get some sort of brace to help me walk
- I had my head shaved, roped my mum in too & we raised £2500 for charity. My mums hair wasn't long enough to donate to 'locks of love' to be made into a wig but I could just sit on the ends of my hair so I donated mine
- I had shoulder surgery just a few days before christmas, still have my arm in a sling & am under strict instructions not to move my shoulder yet
- I were given oramorph after shoulder surgery & got on with it so well I'll be asking at pain clinic whether I can have it just for when the pain gets really bad
- I can't get out of the house by myself & social services say theirs no funding for a temporary ramp until april
- the stairlift still isn't fixed! thankfully it seemed to hurt my neck more than my shoulder when it suddenly stopped last night

So thats whats been happening along with several other things that I forgot probably but hey it is 4.35am so my brain isn't working that well

Why does everything have to be so difficult? http://www.thesun.co.uk/sol/homepage/woman/parenting/someonespecial/2880621/Elvis-school-in-a-class-of-its-own.html

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!

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.

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

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

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