Bye Christmas!

Hey everyone,

Thought I'd pop in with a quick post considering I have yet again deserted you for way too long.

I hope everyone enjoyed their Christmas, I spent mine with the kids and as much fun as it was I am now suffering a great deal! lol

I am off to Leeds for New Years Eve on Sunday too, myself and Joe have done all the rounds to visit the family this year.  We've been Chingford, Crawley, Braintree, Basildon, Woolwich and next stop is Leeds.  Travelling is making my aches and pains so, so bad but I thought I would try it this year as I don't get out much anymore and what better time than Christmas!

I am typing this on my new laptop, how exciting is that ;)

Anyway it is nearly 12 so I am going to get comfy in bed and read my new Kindle :)

Super happy Christmas is over for another year, not sure if I am ready for New Years Eve yet though!

much love L.Ux

The S word

It's 21/12/12 and I'm still alive, are you? ;-)

I can't sleep tonight Helico bacter Pylori's fury is keeping me awake and I'm getting more and more anxious at the thought of my hospital appointment tomorrow morning. All I need is to be pulled about when I'm ratty due to lack of sleep!

Why am I so scared of not being able to sleep. Someone hypnotise me please?

Anyway. This hospital appointment I'm fluffing my blog up with by moaning about is completely unrelated to my HPB, this appointments for my other wonderful body defect that also happens to begin with H. Is there any disease or condition that I don't have? - That begins with H anyway... ;-)

My life is so boring at the moment I literally have NOTHING to write home about. Even that saying has depressed me as, there is no need to write home regardless of the lack of rainbows and unicorns in my life as I am stuck there 24/7 feeling sorry for myself anyway, Yay ;-)

2013 is coming soon and I'll be 23 early February. I keep thinking I only have one life and I want to make it count but I do not see a light at the end of this dark, dismal tunnel I've found my self in for what seems like forever. I've forgotten what the sun shine looks like. My emotions are on a constant yo-yo and that's no surprise really as I'm not sleeping or eating much at all.

I love my food and I certainly love my sleep so I'm not functioning as I'd like to at all! Damn you body why do you have to be so un cooperative?

Blogging is my only way to vent all my frustrations about my life at the moment and even that is proving difficult for me. Who wants to read my crazy, self pity rambles?! - I think I just have the biggest desire to let people know what I'm going through. It's so easy to judge people these days and to assume you know what goes on behind closed doors. I know by far my life isn't half as bad as others, as selfish as it sounds that thought alone is what keeps me going.

It's almost 3 o clock in the morning now so actually the 22nd and I'm tap, tap, tapping away on my phone. Someone shoot me with a tranquilliser? P L E A S E?

And the panic has trickled in again. The hospital tomorrow is going to just top the cherry on my tired state of ice cream mind IF... I don't get some sleep soon.

How do you get over phobia's? I literally feel sick at the thought of not being able to sleep. I'm so weird!
I ask myself what will make me feel better... 1) Sleep, 2) Sleep, 3) SLEEP! Ahh!

Well, my stomach has settled ever so slightly so here's attempt 352 of sleep. (Please say I didn't speak to soon, sleep needs to hurry!)

Yet again, the S word! SLEEP!!!

Good night and if you managed to read all of this without falling asleep I think we could be great friends! Lol X

L.Ux

Sent using BlackBerry® from Orange

What drives me mad about social networking and the internet

Writing Like This It's Annoying And Pointless Why Do You Do It? You Don't Talk Like This Do You? It Also Makes You Look Really D U M B, it's ok for a status I guess but not in a text, mate stop it!

#Hash #tagging #on #facebook, oh my god. Acceptable on instagram, JUST. Please leave it for Twitter!

'Add me on Twitter' erm, no! Lol

Pop ups

'Like this/RT this is you love your Nan and don't want her to die' oh quick, oh my lord, do it!!!

'Can you find the number 8 in this line of 3's?
333333333833333333333333333333333333333333333333333333333333333333333
Well done you are amazing now email this to 10 friends or a little girl with no eyes and a sharp stick will appear at the end of your bed at 12 o' clock whispering "I want your eyes and if you struggle I'll take your toe nails too" ... oh my God my internet suddenly went down, I'm totally sleeping with the light on tonight! ... Oh heck, I'm going the internet cafe!

Up loading pictures of your food. Okay so I am totally guilty of this! Food is my life and I want to make people jealous of what I'm about to gobble up... and lets face it, it's a much more healthier hobby than only ever going on Facebook/twitter to let everyone know you're thinking of your dog in heaven that died 4 years and 32 days ago at that precise hour, minute and second! 'RIP Bingo, hope God gives you lots of bones!' you're dog can't read it because it's a dog.  A DEAD DOG.

'Hey, someone's been saying nasty things about you...'

Celebrity impersonators

*logs into Facebook, puts status* ... 'It's raining!' Thanks for that, I must put a window on my Christmas list next year to save you the trouble in the future

User name squatters. You think of the most amazing name ever but someone else with 1 tweet from 6 years ago has it! Why?!!!! I feel so violated!

WrItInG In A MiXtUrE Of UpPEr CaSe AnD LoWeR CaSe, almost as annoying as Writing Like This, at least WhEn YoU wRiTe LiKe ThIs It LoOKs like you're trying to do something arty I guess...

'HBD!' Omg it's Happy Birthday lol!

L.Ux

Sent using BlackBerry® from Orange

Francesca Pina Jewellery

I really wanted to share with you a post about an old school friend of mine.  We were in the same form in secondary school and she has been one of the very few people I have bothered to keep in touch with since leaving.

I wanted to share with you her phenomenal and inspiring business, Francesca Pina Hand Crafted Jewellery.

From what I remember Fran was always one of the most creative in our year group.  I remember in our Design and Technology classes everyone used to beg her to draw their title on their work in her unique bubble font.

I also remember her for her persistent and undisturbed focus whilst in Art class, resulting in her consistently producing work that out shone the rest of ours.

I am glad she kept aflame this creative sparkle she carried so well as some of her designs and creations are breathtakingly beautiful and unique in their own little way.

I am ashamed to say I haven't yet had the pleasure of buying any of her fantastic work but I intend to add a few bits to my Christmas and Birthday list in the hope someone buys me them!

I have included below a few of my  favourite pieces from her Luxury bracelet collection;

The Luxe White

The Carolina as featured in Vogue magazine!

The Clover (Sterling Silver)

Luxe Candy Pink

 all of these along with many, many others can be found on her website.

Francesca has been highly successful with her business before even hitting it's first year.  Celebrities and magazines alike have already been spotted with or featuring her beautiful pieces.

Why don't you check out her website and see if any of her designs tickle your fancy?

I can't wait to get my hands on some myself!

To keep up to date with Francesca Pina's latest news, trends, competitions and exclusive discount codes, follow her on Twitter today! [Follow Francesca Pina]

Swimming with dolphins

Back in 2010 on September the 1st I got granted one of my wishes, to swim with Dolphins!

I was in the Canary Islands and was picked out of the audience of a dolphin show, it was the most amazing experience ever and I want to do it again.  I don't think anyone could ever be so lucky as to experience it like I did though and for free too!

I see you could have your picture taken with them before the show started and begged my boyfriend to let me get a photo, he let me and also got one himself :) The woman said the dolphin was really calm with me and I was a natural with them and asked if I wanted to be in the show, erm YES!

Joey didn't get a very good picture of me whilst I was swimming with them but I have included the pictures we had with them before hand and some of the best of the worst :)

It would be so much better to swim with them in the wild but the ones I swam with where well looked after and all having the time of their lives where they lived so I didn't feel awful for them being in captivity.

Don't get me started on poor old Free Willy and his untimely death, I will blubber...

Excuse how skinny I look this is when I had a METABOLISM lol. I couldn't find the copy of Joey and the dolphin :( this is a snap taken of the printed photo! 

I was made to hold on to a body board for This bit and the dolphin pushed us around the tank, it was amazing how strong it was!

Here is me looking frantically into the audience hoping Joey was taking pictures lol! 

Two of the dolphins came to say hello :)

Such a great show, I wasn't really watching I was full of beans and buzzing with happiness about what I had just experienced!

I have also included some photos of the wild dolphins I see in the Red Sea in Egypt this year, It really made my holiday!

Me and my friend Jasmine snorkeling!

Just about caught these 2 with the camera!

This is myself and Joey #raybans

Left to right; Joey, Myself, Shaun and Jasmine

In a row just like in the Little Mermaid, I am singing 'Part of your world' as I type

and the last ok-ish shot!

what an amazing animal dolphins are :)

x

A month in photos

I have seen a few people doing 'A week in photo' posts but as many pictures as I take in my boring old life I don't think a week of photos in the life of Lulu would have the same effect as the interesting people ;)

So here is my small collection of October photos!

I am currently in Crawley looking after my niece and nephew as seen in the photos above, they are calling it a 'sleepover' it's so cute :-)

I have scheduled a few posts while I am away, so keep checking!

take care!

x

Dear Diary...

I haven't done a pain post for some while now.  I have been trying to steer away from the depressing posts!  Very hard as to be honest there isn't much happiness in my life right now lol.

I try to put a positive spin on things, add a 'lol' or a joke but it is really hard!

At the moment I don't do much else with my week other than hospital visits and my course work for my web design course.

I thought I would write you an update as to what has been happening at the hospital lately.  I will start from July, this is when I was diagnosed.  I won't bother to go into what, how, when as if you wanted to know the ins and outs you'd have read previous posts.

So yeah, I was diagnosed in July with Joint Hyper Mobility Syndrome after months and months of pain and numerous tests, I was then referred for an ultra sound on my hip and shoulder as these seem to be the worst effected of my joints, or they were at that point.  Now I am in a great deal of pain with my back too.

I had my scan at Whipps Cross on the 11th of September, so it was quite a wait from July! - at the Ultra sound he asked me when my last joint injection was etc etc etc, I hadn't had one so was a bit confused... He then asked me when my next appointment with the Dr who had diagnosed me was as he'd get all my paper work in before then in reference to some further injections... I hadn't had any injections and there was no following appointment of course so the guy who did the scan put me straight  back on the system (or so he said he had) as he could see from my scan that I was in need of pain relief.

It got to October and I hadn't heard anything back from the guy who did my scan or the Dr who diagnosed me.... Went back to my GP and they referred me to Physio Therapy as this is a possible way of helping me with the pain too.

As of today which is... 12th of November I have only had 2 physio sessions so I can't really comment on whether it is working or not.

In my last session I ended up crying for 75% of the time.  Considering I only get 20 minutes this didn't help lol.  I produced the letter I got  from the Dr who had diagnosed me that was supposed to follow after my scan.  (I finally had some sort of acknowledgement of my existence from Whipps Cross) HOWEVER, in between the September Scan and my 2nd physio appointment Whipps Cross had 'lost my results' turns out that by error I was signed off of their books on the same day I was referred for my ultra sound scan.... (makes sense) This resulted in a letter from the Dr who had diagnosed me, without my results.  They hadn't even been looked at after all that chasing and due to their error all that was said during my scan was lost and never considered... It never happened according to them! good old NHS!

As the waiting time to get onto the books took almost 6 months in the first place I have decided to try and give physio it's best shot.  I feel the scans route has been exhausted for now.

The therapist is OK, but I don't think she understands the condition very well.  She is asking me to do all kinds of ridiculous things and without any pain relief this is very difficult.  My back goes into a huge spasm and cramps up nearly every time I try, add my shoulder and hip and everything else on my list of sh*t joints and this is why I just burst into tears in my last session.  Frustration doesn't cut how I am feeling.

I am not getting my physio appointments frequently enough either.  They are more than a month apart each time.  I really don't have faith in the NHS any more...

As for me and my boyfriend at the moment.  What can I say.  my HMS has really had an impact on us.  Obviously while I am still in so much pain I am unable to work and I am not receiving any type of benefit as I am not entitled.  This p*sses me off too as I worked hard for 3 years full time paying taxes before it all got too much.  Oh well, government for you.  But as I was saying it has put a great deal of pressure on us as a couple.  I haven't seen him for almost a month now.  We do speak every day and I know I am not all to blame for our troubles as he has admitted where he has gone wrong but I can't help but think if I just had a little more support from the NHS or even a little bit of money our problems wouldn't have happened in the first place.

We lost our flat and a lot of things we enjoyed in life over the last year.  I wish with every thing possible that we could get our life back to a fragment of how it was.

Money is defo the root of all evil.

I will keep you updated as un-depressingly possible!

L.Ux

Random time

1. Grab the book nearest to you, turn to page 18, and find line 4.
   'El Capricho was one of the few Gaudi buildings where he did not...'
2. Stretch your left arm out as far as you can, What can you touch?
   Oxygen lol
3. Before you started this survey, what were you doing?
   Listening to my Mum moan about the shed they are building in the garden opposite ours
4. What is the last thing you watched on TV?
   Rita Ora is singing to me as I type on the tele
5. Without looking, guess what time it is
   6 o clock?
6. Now look at the clock. What is the actual time?
   17:53
7. With the exception of the computer, what can you hear?
   Rita Ora
8. When did you last step outside? What were you doing?
   Yesterday, I was coming home from Tesco
9. Did you dream last night?
   Yeah, I don't remember what though :s
10. Do you remember your dreams?
    Most of the time yes
11. When did you last laugh?
    Earlier
12. Do you remember why / at what?
    At my nephew, I just keep thinking of him lol
13. What is on the walls of the room you are in?
    Paint
14. Seen anything weird lately?
    Well the 9 year old kid that shoved my 3 year old nephew at the park the other day was weird, what a pussy! 9 years old and starting on 3 year olds
15. What do you think of this quiz?
    It is keeping me amused for now, however, not so sure if it makes an interesting read!
16. What is the last film you saw?
    Mary Poppins lol. I wanted to watch it because of the 'Let's go Fly a kite' Sainsburys advert :)
17. If you could live anywhere in the world, where would you live?
    America, cliche but everyone just seems so much more happy over there
18. If you became a multi-millionaire overnight, what would you buy?
    I'd go buy a house, kit it out then set up a charity with the rest of the money!
19. Tell me something about you that most people don't know.
    I am left handed 
20. If you could change one thing about the world, regardless of guilt or politics, what would you do?
    Nuke all the bullies, make sure the government treat people as individuals not just putting people in categories because Mr A gets 6 ticks in this survey and Mr B gets 5.  I would also make rapists, pedophiles and murderers be tortured instead of being fed 3 times a day as well as given an x box in prison.
21. Do you like to dance?
    I miss it so much :(
22. Would you ever consider living abroad?
    YES! I would do anything, if someone said to me, hey you, I am moving to Spain come and open a bar with me or something, I would totally do it
23. Does your name make any interesting anagrams?
    'IS LAZY, HUMANE RAT' just come up as I googled it...
24. Who made the last incoming call on your phone?
    Joey
25. What is the last thing you downloaded onto your computer?
    Skype
26. Last time you swam in a pool?
    Saturday with my cheeky niece and nephew
27. Type of music you like most?
    Anything you can dance to
28. Type of music you dislike most?
    Screamo
29. Are you listening to music right now?
    Not now
30. What color is your bedroom carpet?
    My bedroom floor is wooden :)
31. If you could change something about your home, without worry about expense or mess, what would you do?
    Add a Jacuzzi and wet room 
32. What was the last thing you bought?
    Disney Tattoo's for my niece and nephew
33. Have you ever ridden on a motorbike?
    Yes I have
34. Would you go bungee jumping or sky diving?
    I have bungee jumped but I haven't sky dived and wouldn't
35. Do you have a garden?
    I do
36. Do you really know all the words to your national anthem?
    I really don't lol
37. What is the first thing you think of when you wake up in the morning?
    Needing a wee
38. If you could eat lunch with one famous person, who would it be?
    Christina Aguilera I love her so, so, so much
39. Who sent the last text message you received?
    Kelsea and Kelly text me at the same time :p I haven't replied yet though...
40. Which store would you choose to max out your credit card?
    Depends what I wanted to buy, if it was clothes, like the whole of Westfields :D
41. What time is bed time?
    About 10 o clock, I know it is early but I have trouble sleeping because of the pain I am in all the time
42. Have you ever been in a beauty pageant?
    No, I wouldn't make it anyway lol
43. How many tattoos do you have?
    Zero!
44. If you don't have any, have you ever thought of getting one?
    Yea, I want two swallows or swifts on my lower back
45. What did you do for your last birthday?
    A chinese takeaway, depressing I know but I was poor!
46. Do you carry a donor card?
    No
47. Who was the last person you ate dinner with?
    My Mum and boyfriend
48. Is the glass half empty or half full?
    Half empty
49. What's the farthest-away place you've been?
    America I think
50. When's the last time you ate a homegrown tomato?
    All the time lol
51. Have you ever won a trophy?
    Yea for dancing, I miss it :( I would do anything to get back in to it
52. Are you a good cook?
    Not bad, I love cooking
53. Do you know how to pump your own gas?
    No, I have never had to
54. If you could meet any one person (from history or currently alive), who would it be?
    Christina Aguilera
55. Have you ever had to wear a uniform to school?
    Yea, when I was in secondary school lol
56. Do you touch-type?
    I do :)
57. What's under your bed?
    Mess galore
58. Do you believe in love at first sight?
    No, I don't
59. Think fast, what do you like right now?
    Food and sleep makes me day perfect at the moment
60. Where were you on Valentine's day?
    In mine and my boyfriends flat, I was sick so my Mum came over and ate my dinner with Joe lol
61. What time do you get up?
    About 10, first lay in since forever, even though I was wide awake from 5
62. What was the name of your first pet?
    Binge the cat
63. Who is the second to last person to call you?
    A number I do not recognize
64. Is there anything going on this weekend?
    I am going to enjoy myself at the spa
65. How are you feeling right now?
    Like shit! got soar throat on top of everything else
66. What do you think about the most?
    My future
67. What time do you get up in the morning?
    Since I have been off sick, 9 or 10ish
68. If you had A Big Win in the Lottery, how long would you wait to tell people?
    I don't think I would tell people
69. Who would you tell first?
    I'd tell my Mum and that's it
70. What is the last movie that you saw at the cinema?
    Keith Lemon movie, it was RUBBISH!
71. Do you sing in the shower?
    I used too.  God this shows how depressed I am!
72. Which store would you choose to max out your credit card?
    You've already asked this question...
73. What do you do most when you are bored?
    Boring quizzes like this!
74. What do you do for a living?
    I used to work in Human Resources since getting sick I have had to rethink what it is I can actually do
75. Do you love your job?
    Not really, being sick is no fun especially when you're not entitled to anything because the doctors keep losing your results!
76. What did you want to be when you grew up?
    An Actress
77. If you could have any job, what would you want to do/be?
    Something fun!
78. Which came first the chicken or the egg?
    The Chicken
79. How many keys on your key ring?
    Do you really want me to go count?
80. Where would you retire to?
    Somewhere hot and relaxing
81. What kind of car do you drive?
    Automatic....
82. What are your best physical features?
    I guess my eyes are quite blue
83. What are your best characteristics?
    I would like to say my ability to see the good in people all the time but it gets me in a proper pickle when arse holes mug me off
84. If you could go anywhere in the world on vacation where would you go?
    Anywhere hot would be nice!
85. What kind of books do you like to read?
    Jackie Collins :D
86. Where would you want to retire to?
    DUDE YOU ASKED THIS ALREADY
87. What is your favorite time of the day?
    Dinner time :)
88. Where did you grow up?
    East London until I was 8 then I moved to Essex and not moved since
89. How far away from your birthplace do you live now?
    Like 10 minutes?!
90. What are you reading now?
    I am not reading anything, I am waiting for my Kindle :D
91. Are you a morning person or a night owl?
    Afternoon, early evening lol
92. Can you touch your nose with your tongue?
    No :(
93. Can you close your eyes and raise your eyebrows?
    Yes, no botox for me
94. Do you have pets?
    A fish called Goldzilla
95. How many rings before you answer the phone?
    My phone is always on silent
96. What is your best childhood memory?
    Going South End with my Nan and Grandad
97. What are some of the different jobs that you have had in your life?
    I worked in Human Resources for 2 years then at a film production company
98. Any new and exciting things that you would like to share?
    I am getting MARRIED! Oh no wait not me...
99. What is most important in life?
    Happiness 
100. What Inspires You?
     Arse holes, I always come off better than the arse holes that upset me and it makes me feel great after all the heart ache has gone :)

I know, I know...

I have been a bad blogger again :-(

My last 10 or so posts have been proper depressing too!

I  am sorry, so, so, so, so sorry! I have no excuses apart from what with all my hospital appointments and other UNWANTED drama created by inanimate objects, people and what ever else life wants to throw at me and I haven't really felt like blogging... who wants to read about me being depressed?! only the people that have something nasty to say!

MUST BE POSITIVE...

So I just come back from Camber Sands with my step family and it was actually really good apart from the FREEEEEEEZING weather.  I was laying in bed with Joe and we were breathing steam lol.

I would upload a few pictures but I will have to wait for my cousin to upload them on facebook as I only got pictures of the kids myself.

I am off to Butlins next weekend with Joe, I'm going ROCK CLIMBING, RUNNING A MARATHON AND ALSO POLE DANCING while I am there... NOT.

WHILE I AM THERE I intend to take advantage of the Jacuzzi to blast my back and shoulders, will also do a bit of my physio exercises in the water for my hip.  Strengthening my hip is top of my list of things to do at the moment.  I would go into why but I was really upset by some arse hole the other day, in fact he doesn't even deserve to be named arse hole, more like ignoranus of the century.

My FAQ page came in use way before I thought it ever would.  To such an extreme too.  So as much as me talking on here about what I am going through helps me get it off my chest the hate and malicious comments I have received this month have knocked my self confidence yet again.  It always hurts but when it's from someone who is supposed to support you it does knock you for six.

But oh well all I have to tell myself is, is that I am the better person, if standing my ground for someone being out of line makes me a bad person then so be it.  I have done nothing wrong so the smile is still on my face.  If I have to distance myself from some people to be happy then I will, intelligence and humanity doesn't run in everyone's brains.

Got some good news too, I'm all good to go ahead with my driving lessons, I have had the go ahead, although I am petrified of it, it has to be done.  I will only be using the car for short journeys as I can't sit in a car for a long time but it's a start into getting some sort of life back!

Anyway... I may write another post in a month or two, or three, or four...

L.Ux

Joint Hyper Mobility Syndrome FAQ

Joint Hyper Mobility Syndrome (JHMS) - FAQ

I decided to make this page as I am a sufferer of JHMS and there isn’t a lot of awareness of this condition out there.  Some suffers of HMS even joke around about it, I guess being super bendy can be quite an advantage in some cases, however I want to raise awareness of the not so great side of  this condition, also just wanted to make a FAQ page because I am totally fed up of people asking me why? What? How? And EH, you WHAT? – It is a very lonely condition if the people around you don’t understand.  So yes, this is for everyone who has ever been ignorant towards me, whether they meant it or are just a bit dippy! – I have tried to answer the questions to the best of my knowledge as a sufferer, if you think you have it or want professional information on it, please, please, please go to your GP or Google it on the NHS websites, although the information is vague it’s by the actual NHS not just a whiney sufferer ;)

WHAT IS JOINT HYPER MOBILITY SYNDROME?

If you are diagnosed with ‘Hyper mobility’ it means that you can move some or all of your joints more than most people can.  A lot of people with hyper mobility are double-jointed.

Hyper mobile joints are very common, lots of people have them, and most people can live a long and happy life without even knowing or having any problems with hyper mobility.

A minority of people with hyper mobile joints experience pain or other symptoms, and this is when it is called joint hyper mobility syndrome.

Despite the obvious joint problems and pains, which are:

·         Muscle strain/pain

·         Joint stiffness

·         Backache

·         Easy dislocation of joints

·         Weak collagen

It can also cause problems in regards to your internal organs, giving you health problems such as:

·         Asthma

·         Irritable bowel syndrome (IBS)

·         Weak bladder

WHO GETS JOINT HYPER MOBILITY SYNDROME?

Anyone who has hyper mobile joints can get JHMS.  Women are however more likely to be diagnosed with it.

WHAT CAUSES JOINT HYPER MOBILITY SYNDROME?

There are many reasons behind why somebody could get JHMS, it could be because of the shape of the bones, for example if you have shallow hip or shoulder sockets, weak or overly stretched ligaments, the stiffness of your muscles could also affect it and some people even inherit the condition from their parents.

IS IT A SERIOUS ILLNESS/CONDITION?

As mentioned in the definition of JHMS it depends on the person.  Some people can go about a normal daily life with no pain at all.  Some suffers even use HMS as an advantage such as, Gymnasts.  There is however some people that are unfortunate enough to experience some or all of the symptoms mentioned in the above definition.

CAN YOU END UP IN A WHEEL CHAIR?

Yes you can.  A lot of the cases I have heard of have been after child birth, falling one too many times, dislocations, arthritis.  However I am not the best person to ask this question! – I haven’t had the pleasure of child birth yet, I have been lucky at all the times my hip has given away on me leaving me flat on the floor and my shoulder and elbows are the only things that have dislocated or moved out of a normal/comfortable place so far.

HOW DOES JOINT HYPER MOBILITY SYNDROME AFFECT ME?

To begin to answer this question about my personal experiences as a JHMS sufferer I will take you through my history.  From birth my hip has always been an issue.  When my mum would change my nappy and I would wave my legs around (great picture I am sure you have now) my hip would click.  My Mum describes it as a ‘bang!’ maybe a bit dramatic, more like a clicky clap, it is loud though.  People to this day look at me and say ‘what was that?!’ (Ironic, I just moved in this seat and it did it, CLAP!)

As I grew up I was always really conscious of my hip, all I can describe it as is a dull ache and the feeling that it may pop out at any moment, only way I can try to create a picture of this is a Barbie doll, everyone’s had a little brother or someone pull of their Barbie’s arms and legs… That’s how fragile it feels!  I remember at school in a P.E lesson when we were doing hurdles, I always went and hid or asked to sit out with a Migraine if my secret hiding place wasn’t accessible.

Anyway, time moved on and I just lived with the pain but I got to 21 and couldn’t cope with the pain any more.  I was also experiencing pain in other joints and they were unexplainable.  I wasn’t a secret cage fighter, why all these pains?

So just after my 21st birthday (2011) I went to the doctors.  After months and months of going back and forth to them I was finally referred to the Rheumatology department at hospital where I was diagnosed.

HALLELUJAH!

Zoom forward to October 2012 and regardless of the diagnosis I am still no better, the pain is the worst it has ever been, so much so I had to leave work.  I cannot commute, imagine standing on a packed tube with people knocking and pushing you in all your hurting bits, imagine feeling like your joints are on fire, this is what I get, and this is how I feel! The other commuters don’t know this though; I haven’t got a flashing sign above my head.  Even car journeys are a pain, (no pun intended) I cannot sit still for very long.  Walking is something of a mission too.  My hip regularly gives way; I love randomly laying on the pavement in all kinds of weather and pretending to passers by that I just fancied a nap… I am petrified of going out on my own.  What if next time I fall it isn't so near home? I can walk for about 5 minutes before I need support or just a seat.  It’s a horrible circle of pain and sleepless nights!

I have not been able to work since January this year and am not entitled to anything.  It does make me mad as before the pain got too much I did full time work since I left VI form so it is not as if I haven’t contributed to society ever... As have all of my family!

I need to visit a disability employment adviser for my next step, I just hope they understand and don’t fob me off like the doctors first did.  It took over a year for diagnoses that the doctor diagnosed in all of 10 minutes!

I do keep a diary of my pain and day to day doings, I may upload it on here, may not. 

WHY ARE YOU ALWAYS IN PAIN/ YOU’RE IN PAIN STILL, ARE YOU LYING?

Yes, I am always in pain but some days it is worse than previous day’s visa versa.

No I am not a liar.  This is a reoccurring problem for sufferers because the pain and symptoms can differentiate between days a lot of people, friends, family and colleagues only see you on good days and rather wrongly just assume you're a drama queen. 

Yes I am still in pain since the last time you bothered to ask/care/be nosey unfortunately there is no cure of JHMS and pain relief hardly works.  Most sufferers only ever get pain ‘relief’ that is more manageable rather than gone completely.  Trust me I have tried a combination of everything it’s always there throbbing away!

If you have any more questions just ask, I’ll reply asap!

L.Ux

Prince Harry gets naked!

Who actually cares?!

He is a soldier the boy is allowed to let off some steam!

To be fair, I wouldn't play strip games myself but what ever floats his boat.

Totally agree he was a silly boy and he has an image to keep up but in his defence it's not like he was in the street he was in a hotel room and his privacy has well and truly been violated! - Be grateful it wasn't a Tulisa like video!

I blame today's technology.  Things are so easy to capture in pictures and share with the world what with digital cameras, smart phones, Facebook and Twitter.

Just think of how many things have been missed before all of these were invented...

Imagine if Christian Grey was real and his story got out, oh my!

What happens behind closed doors should stay behind closed doors, I am sure the photographer of this photo has done some pretty wild things too, what goes around comes around dearest!

I still love you Harry :)

L.Ux

GCSE Results

It's that time of year again, GCSE results are in and the news has said the amount of A's to C's have dropped.

I am so miffed at this, the government are constantly saying they are getting easier etc., but I don't think half of the government could even get C's!

I did my GCSE's in 2006 and got 1 A in English, 1 B in Drama, 6 C's in Maths, Science, Sociology, RE, Biology, Chemistry and Physics, another in English and 1 D in History (oops).

I was so happy with my grade, I am dyslexic so was really, really happy with these grades!

I got a new job in 2011 and I had to go to college for it, I already have A Levels in Business Studies but I had an opportunity to get a  higher qualification so thought why not.

I was shocked when I found out that because I had completed my GCSE's 5 years ago I would have to re take my Maths and English GCSE? what? re take? but I got an A and a C? Who cares if it was 5 years ago, what is the point of them if they suddenly become void?! I was so insulted! They put me in a class with people that hadn't got the grades and the tutor we had to refresh our memory wasn't even an English or Maths teacher...What a waste of my time!

I am still so shocked by this.  I complained to the college and was told it was something to do with government funding.  What will they think of next?!

So there you go, that is my reason as to maybe why people haven't bothered so hard this time round...  As if you do fail you can just re take them and if you do pass you have to take them again after 5 years as in the governments eyes they become void lol.

Being Bendy

I came across a blog post and it pretty much sums everything about what I am going through up.

Obviously it doesn't all apply to me, you'll understand that if you read it all.

I cannot express how happy I am to actually find this blog post, I feel a huge weight off of my shoulders it explains the condition so well and has made me feel so much better about myself.  Sometimes I wake up and feel like a complete hypercondriac and when people ask me to explain it to them I panic because I think omg you are a hypercondriac... but I am not and people that think I am just  don't understand it.

A link to the blog I found is here (Living Bendy)

below I have drag quoted sections I would like to highlight myself in my own blog post.

'A lot of people have never heard of hms/eds and those who have, often don't understand what exactly it is, after all it’s a very complex condition that even most Dr's don't even understand...

...Hms/Eds is pretty much the same condition... (With Ehlersdanlos being more severe)...

...people with either 'diagnosis' need treating exactly the same...it is not something you suddenly get, although some people (like myself) have very few problems until they reach their 20s...

...Because of the bendiness of the joints, a person with hms/eds will use their joints over a 1000 times more in one day than a regular person...

....The lack of collagen in a sufferers body is the main reason for the symptoms of this condition because collagen is present in organ tissue as well as the joints, people with the condition can also have problems with their organs, in particular, organs that are designed to move... in particular problems such as ibs, slow transit, incontinence and other similar problems. The same goes for the bladder too.

In women with hms/eds, the womb has to contract much harder during her period in order to shed the unused lining...It also makes it difficult to maintain a pregnancy and many women with hms/eds experience more miscarriages and problems conceiving...

...Some people may have very few problems and lead normal lives, able to do the same as people without the condition. At the other end of the scale, some people are seriously affected by the condition resulting in severe disability...

...Pain is a major symptom so becomes the main focus for treatment. Pain in hms/eds is difficult to control because it can fluctuate easily. But in a lot of cases, medications such as tramadol, codeine and even morphine are used to help manage the pain. It often does not take the pain away but only brings it down to a more mangeble level...

....Because the joints of a person with hms/eds are so unstable and dislocate so easily, a lot of the time they go back into the right position very easily so people with the condition often learn fix to dislocated joints themselves...

...One of the biggest problems people with hms/eds face is the lack of understanding from friends, family and collegues. A person with hms/eds may appear to be fine, especially if they can walk. Often a person with hms/eds may be able to do something one day but not the next such as pouring a kettle or walking up the stairs. So it becomes difficult for others to understand just how difficult the condition can be...'

I hope even if you haven't read the original blog post by my blogger hero that what I have highlighted gives you a little bit of insight in to what it is.  As it mentioned, it is a very hard condition to describe and yet again I cannot express my gratitude to the person who wrote it and for laying it out for people to learn, I would not have had the patience!  

I am not writing this blog post for attention, or for your sympathy.

I am writing it to help spread the awareness.  The last paragraph from the quote is most probably what gets to me the most.  Having friends, family and colleagues not understand or turn a blind eye hurts.

 As it is such a difficult thing to explain I don't really bother to  I can go on like normal, I really can.  This however does get awkward when friends are like 'oh you're in pain again,' I could so easily scream and shout my frustrations to them but I don't.  It is like I am not allowed to ache, or let people know I am in pain.

My Dad is the WORST! he'll say to me, 'Last week it was your hip now it's your shoulder?' some people will never understand and I would like to say I don't mind but deep down I do... none the less, I am not going to judge someone for not understanding, as it clearly says in what I quoted above, one day someone with it can be fine, the next day not so much.  I do get really embarrassed when I am in pain though because I think my friends are going to talk about me behind my back etc... Maybe I am just paranoid but I know some of them do.  Do you really think I want to be like this?

I am still active, I try to go to the gym and I would love to get back in to rock climbing and all the crazy activities I used to do. I MISS IT SO MUCH.

I would also like to get back in to work, I left this January.  My dream is to work with children so I am looking into ways to get my foot in the door for that at the moment.

I did 3 years full time in an office so before the judgemental do judge me, I have worked and I do not currently receive any benefits.  I am in and out of hospital at the moment as I am having my ovaries tested as well as scans for the pains.  Embarrassingly I even get IBS because of it... 

So before you judge me for currently not working remember that I do appreciate how hard a job is to maintain, especially when you're in a lot of pain for various reasons with everyone throwing the 'hypercondriac word around.'  It is spiteful and does hurt but now I know what is going on I can shrug it off.  I can begin to get myself sorted out, It is taking a while but I am doing something.  My Mum would never let me sit on my arse all day.  It annoys me when people pretend they can see through closed doors.

I have trouble with my shoulders, back, hips and my right hand -  in regards to my hand, mainly my thumb. Sometimes I can't even open a packet of crisp, how pathetic do I feel? the pain just to use my thumb with pressure is a joke.

I am blessed as I don't have this condition nearly as bad as some other sufferers and my heart goes out to them.  You don't think about the simple things like flushing a toilet or walking up a flight of stairs effecting people in life do you?

So here it is, this is me.  At first I was scared to put this all out there but I have and think what you like about it.

For everyone that has been there for me so far thank you.  I know my problems aren't the worst in the world but a problem share is a problem halved and I am glad I have built up the courage to tell you all about it.

Update from the world of Lulu Says!

Hi! - yet again I have been a terrible blogger... I am sorry! what can I say apart from a load of excuses! I actually cannot remember what I last posted, I think it may have been a sorry for not posting lol.

So June, what have I done so far... Well two or three events stand out, I went to Egypt which was amazing and after a tough year and a half it was well appreciated! I will defo post some pictures and do it's very own blog post one day (I hope)

Omg I also read the 50 Shades Trilogy, FANBLOODYTASTIC! Cannot wait for E L James to bring out a new book! Mr Grey or not I am 100% sure anything she writes will be a page turner!

I also got a diagnosis at the hospital which is a huge relief yet a shock as well! plodding on great now and now I have more of an idea of what is going on I am happier in myself.  Just waiting on some scans now and then I will have more idea.

Also managed to find myself a suitable training course/job that starts September if I say yes so woop woop!

My Nan that broke her back is now in a Bupa home, I have visited her and she seems very happy, she has made lots of friends and sleeps in a room next door to 'Eric!' bless her!

Not much else to say really, I will try and blog again soon.

L.Ux

My beautiful niece and nephews

Last week I was God Mother to my youngest Nephew for the very first time it was a lovely day and I got some really nice pictures of my Nice and Nephews words cannot describe how much I love them! cannot wait to have kids of my own and if they are as half as cute as these 3 kids I will be one lucky Mummy!

L.Ux

hey...

I am so sorry I have not blogged for AGES

I have been super busy in the University of Life, few weeks ago my Nan broke her back and is still in hospital so adding that to normal life and I just haven't had the time!

The only thing keeping me going at the moment is knowing I am in Egypt next week, actually cannot wait! I have been deprived of the sun for far too long for my liking and with my medical problems the doctor did recommend sun bathing and relaxing so I am not going to argue with medical experts :)

In and out of my own hospital appointments and visiting my Nan I have just about managed to complete my holiday shopping, think I now just need to buy a cheap Phones4u pay as you go handset, so not going to get stung by taking my blackberry abroad again! also need to take copies of my paper work and passport, buy some vest tops to go with my crazy patterned shorts, buy travel sickness tablets, Plug adaptors and I am sure more will come up when I am out there!

So what else have I been up to since my last post, went to Faces Essex for my 'little sisters' 20th Birthday, we got a table, the same one as in the TOWIE music video, me and Hayley were overly excited about that lol also tried out The Villa Essex, for Shaun's birthday very expensive but a great night!

not much else to report...

Nan is getting on ok now, she is kind of losing her marbles too, we think it has been going on for a while but now she is confined to the hospital it is becoming more obvious, she's not going to be ok on her own when she is eventually allowed out, this is really sad as she is and always has been such an independent person but what with her mind and broken back we will need to give her help, not sure of a leaving date yet as it is not something you can recover from quickly at a young age especially when your in your 70s!

be back asap!

L.Ux

Super stressed!

Ahh I need a bit of a rant so excuse me lol

I need access to an email account I used to use on my old Orange Blackberry because it's for my Pay Pal and TV License and since upgrading I haven't had access to it as Orange have to authorize it.

I gave in and called Orange today about it (I hate calling them as no matter how polite and patient I am, I never get anywhere...)

Here is a print screen of my status on Facebook as it sums up my stressed mood right now lol (I blurred out my full name for the purpose of blogger in case you're wondering)

So yea, after a very difficult phone conversation I have got no where

:(

She didn't even listen to my problem, every time I try to access the account through my new hand set, it tells me Orange need to authorize it and to call them, She suggested I just set up a new email several times and after the 456th explanation of the actual problem and the fact I need access to the old email, I was blown away by my patience, I had yet to lose my rag until she said to me 'Oh you can get access yourself if you set it up as you would a new email through options  > email options > set up access'.

*puts down phone*

anyone know anything about this? Help please?

soooo tempted to just get a Nokia on Tesco mobile and be done with Blackberry and Orange forever!!!!!

ELF holiday collection!

Hey, It's been a busy week again!

I have a few things to blog about but so little time...

I got my ELF holiday haul yesterday woop and I did take some pics but have had no time to review or test them all as of yet, will write a bit about what I have used though!

above is a picture of my elf freebies, I took advantage of the spring bundle deal and am so pleased I did, with my particular spring bundle I got:

a) Fire Coral #D19 Nail varnish (Link to ELF nail varnishes)

b) Grassy Green 7606 Shimmer Eye liner pencil (Link to ELF Shimmer Eye liner pencils)

c) Ivy 2008 Brightening Eye Color eye shadow (Link to ELF Eye shadow Color)

I haven't had a chance to use the Fire Coral Nail varnish yet but I quickly used the Shimmer eye liner pencil and eye shadow, they compliment each other really well and I am defo going to buy the other Shimmer Eye liners as I think they will be perfect for my holiday next month!

I did take some pictures and I felt a bit like Tinkerbell with the green! - Once I have the collection I will do a post dedicated to them, with pictures, I promise!

I must say I am really, really pleased with the Shimmer Eye liner pencil, I normally use the 24/7 glide on eye pencil from Urban Decay but I really cannot see much difference in the ELF ones apart from the price, Urban Decay retail at £13.00 and ELF at only £1.50! Urban Decay defo have more colours in their collection however!

Above is a picture of all the bits I got for my holiday next month!

d) Fairy 9011 Hypershine lipgloss

e) Black 7303 Waterproof Eye liner pen

f) Black Kohl Eye liner

g) Total Face brush

h) Clear and White nail varnishes

i) Warm Tan 2402 Healthy Glow Bronzing Powder

j)Crystal 2201 Wet gloss Lash & Brow Clear Mascara

k) Corrective Concealer

all of the products can be found easy peasy on www.eyeslipsface.co.uk

I still have so much to buy for my holiday!

I need a waterproof camera as we are going snorkelling and god knows what else! anyone got any recommendations of what to take on holiday? I hate getting some where and thinking whoops....

What is perfect?! The weight debate

I have found myself debating back and forth in my head what is perfect re: WEIGHT.

I have always struggled with my weight and not from being what people consider big but from being too small....

In the last year or so I have finally managed to put on the 2 and a half stone I needed to feel normal and look healthy, I have never been more confident and yet the negative comments are flooding in.

I am going to upload pictures of myself as far back as 2009, I am not being big headed but I am a lot better now than I was when I was under 6 stone, so the Fatty police can do one.  I didn't have anorexia or anything I just had a really high metabolism, I was who I was and I am who I am now!

2009

cringe! this wasn't the smallest I had ever been but it is pretty small! This is a picture from my sisters wedding when I was 19, I don't think having braces helped with my weight at all as, as my other brace face buddies will know the food you can eat with a ridiculous amount of wire in your mouth is limited... I think I was about 6 stone here.

2010

Puerto Rico aged 20... (I know I look about 12 lol) I was about 6 and a half maybe 7 stone at this point, look a little healthier than I did in 2009 and yay no braces!  This defo had an effect on my weight, I could eat anything and everything again! HAPPY DAYS.

2011

Colchester Zoo aged 21! Sitting on a lion because that's how I roll. Look I have boobs! I'd say I was just over 7 stone here, was going through a really difficult time here but look how healthy I look? oh, yeah, I dyed my hair too :P JUST in case you thought, hold on a minute...

2012

The start of April! 8 stone exactly.  This is the photo someone commented on saying I was 

'obese' *face palm*

At the end of the day I think I'm the best I have ever been and I am not going to lose weight just because some loser thinks I'm fat.

From being 5 and a half stone at the age of 17-18 to 8 stone at 22 is a good thing! my point is there is always going to be some jealous person making comments no matter what you look like.

If you're happy with who you are then that's all that matters!

L.Ux