Support Dog

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

well worth a look :)

Help!!!!

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

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

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

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

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


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



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

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



Mr Piggy

Connor glueing his hands

Mr Piggy ready for painting

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



Some of the paintings

We gave the shed a make over

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



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

Not all Drs are monsters!!!!

Well it’s been a month. I’m sorry.


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

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

Dangerous Driving

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


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

EDS in the media

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

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

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

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


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

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

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

Funkey-ness

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


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

The little things.

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

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


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

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

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

Xmas Pics:

the kitten killed the xmas tree

So we dressed connor up as our new Xmas tree

playing

First time with santa

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

Benefit Scrounging Scum: The Broken Of Britian Response To DLA Reform Consultation

Benefit Scrounging Scum: The Broken Of Britian Response To DLA Reform Consultation

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:

update

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 legal....wow



Hallway



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.

Kitten

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, but.....it 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.

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



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. :)

Muddled

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!

Freedom

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


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

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 .

:'( 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.

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

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

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.