Thursday, 25 July 2013

Don't You Hate It When...

The thing you have been dreading comes to pass?

Since I hurt my back, I have been juggling that issue, with my ankle problem, and any other temporary EDS incidents which crop up along the way. 

It'a a horrid cycle - my ankle gives way, leading to a knee sublux or dislocation, which then both aggravate the pain in my back. Repeat for every step I take. 

I was taken off of crutches and put onto a zimmer frame when I hurt my back - and told I wouldn't be safe to go back onto them until they knew what was causing the nerve problems and severe pain. I have been using that to move around, but because of my back I have to stay weightbearing through the frame. When HulkFoot™ is giving me severe grief, I cannot give it a rest with non weightbearing time. So as time has gone on, my pain levels in other joints have been increasing. I have been wondering how long it would be before my knee would pick up an injury.

I don't have to wonder anymore. I woke up this morning screaming in pain. My knee is approximately the size of an orange. I am unable to bear weight on it without crying in pain. The pain is shooting both ways - up to my hip, and down to HulkFoot™. I am profoundly grateful that I do not have full feeling in my legs at the moment - if it hurts this much now, I cannot bring myself to think how badly it would hurt normally. 

I have a real conundrum now. Do I visit the hospital? Is there really anything they could do for me? I am already in possession of a zimmer frame, and on large doses of pain meds. An added issue is that I am home alone. My Mum and Dad are on holiday in Malta, Uberman is at work, and so is my brother. I have no cash here at all for a cab. So I physically couldn't get there anyway. I am due to see my ortho consultant on August 6th. Can I hold out until then? 

I am terrified. I desperately wish someone was here to try and help me be rational. I feel like I'm falling. If my knee is damaged, it will put me so much further back. I don't want to be further back. I want to move forward. I need a hug.


Tuesday, 23 July 2013

A Baby Born to the World - An Easy Life or A Life Chained to Duty?

Hello Everyone!

I have changed the colour of my font today, in honour of the subject of this post! 

Birth is an everyday occurrence. Every minute on Earth, a child enters the world. For his/her parents, their extended families and friends, it is the greatest and proudest moment imaginable - but to everyone else, it is an unremarkable occurrence. It is just another life cycle beginning. The father will walk around with that "My baby is here. I made a small person" dazed expression on his face, whilst chugging back a pint to wet the baby's head, whilst the mother will be holding her child close, feeding, nurturing, and being treated like a Queen by those around her. Then in a few weeks time, the flush of new parenthood will have settled down, and this new life will be a routine. 

The baby will do as all babies do - feed, cry, burp, make a mess of their nappy, sleep, and repeat. They will lay there, staring and taking in the world around them, not knowing what is going on, or who they are. That will come with time. They will grow, develop their own identity, and be the writer of their own life story.

In St Mary's Hospital yesterday, a child was born, not just to his parents, but to the world. The big difference with this child, is that his future life story has already been written by tradition. The World expects huge things of him, and yet he is not even 24 hours into his life outside of his Mother. 

The evolution of Media into the massive fishbowl it has become today, has led to an insane lack of privacy for the Royal Family. Catherine was unable to enjoy a holiday in peace, being photographed topless by a member of the paparazzi; Prince Harry was similarly photographed naked in private. Our perception of the Royal Family has naturally changed during this evolution. There is now a feeling that the Royals belong to us - that they are public property. This sense of "belonging" does not only apply to the public of the United Kingdom, or other Commonwealth countries. Countries from all over the world watch the comings and goings of our Monarchy with great interest.

The ink was still wet on the Wedding register when speculation began on how long it would be before the newest member of the Royal Family would arrive.
From the very second the Duchess was admitted to hospital with Hyperemesis Gravidarum, the media whirlwind gathered enormous pace. I was somewhat surprised when I saw that the story had a huge presence across the world media as well as within the United Kingdom, but it only served to reinforce the fact that our Royals are viewed as arguably the most famous ruling family on Earth - and a huge draw for tourists in the bargain. 

The intense media scrutiny of this birth cannot have been easy for the Duke and Duchess of Cambridge. Yet they have handled it, seemingly with ease. They know they had a duty to bring this child into the world, as a future Monarch of Great Britain, and the Commonwealth. They will be looking into his small eyes, knowing that he will constantly be watched as he grows up.

His birth has sparked a negative reaction from the Anti-Monarchists. Phrases such as "silver spoon" have been bandied around, and the fact that His Royal Highness has been born into a world of riches has proved a massive irritant to many. It cannot be denied that this small human is going to have the best education and upbringing money can buy - but he will NEED it to be a grounded, intelligent and fair King. Prince William, his wife, and his brother have proved, along with their cousins, and subsequently their elders, that the Royal Family is no longer the staid, offhand figurehead that it once was. All of the "young" generation have left education and taken up a job. A job - not just lounging around at home. Princes William and Harry are both serving their country, at a time when so many armed forces are doing the same. They do not get privileges for doing so. They perform the same duties that any soldier would do. They balance this with being charity patrons, and also attending Royal engagements - not just in the UK, but all over the World. Would you really describe the above as an easy life? I'm sure there are days when all the Royals wish they were just members of the general public, able to do as they please. They are not, and they have a huge weight on their shoulders. They are born into a position of power, certainly; but with great power comes great responsibility. This is a role which requires a huge amount of work, which is not always conducted in the public eye. 

Today, Prince Charles and the Duchess of Cornwall, instead of meeting his first Grandson, are meeting people in Yorkshire, as previously planned. How many first time Grandparents are unlikely to see their newest family member until his second, or even third day of life? How many women do you know, who are still working at 80+? Gone are the days when the Royals sat in their palaces every day. Instead, we have a ruling family, who understand their importance to their duties and their subjects, and whilst they will always respect the need for tradition, they are moving with the times, and becoming a modern family unit. 

I am proud of our Monarchy. They represent our country well, and they show that they are human beings, not "blue blooded snobs". I find it incredibly interesting to see that as time passes, we are able to relate to them more and more; Prince Harry goes out and parties just like any other lad his age. The Duchess of Cambridge shops on the High Street, and anything she wears sells out within hours of the photos being published. Prince William visits people, and talks to them like equals, unlike previous generations who would never have imagined they would mingle with the "commoners". It is endearing, and I sense a real shift in opinion when compared to the debate about abolishing the Monarchy some years ago. A real revolution has taken place in our Royal Family, and I firmly believe it will continue, particularly under the reign of Prince (King!) William. 

Monday 22nd July 2013 at 16:24
The day that the Duke and Duchess of Cambridge welcomed a tiny person into the world. A tiny person, who will grow into a King. He doesn't know it yet, but the public do. The waiting is over, and he is now not only a Son to his parents, he is a Son to the World. 

Welcome to the World, Your Royal Highness. You have inherited one of the most important and recognised positions in the World. I hope your shoulders are broad, and that you have the wonderfully kind nature of your parents. Your story may be already written, but I am sure you will move with the times as your family has done, and be able to write some of your own chapters too. I probably won't be around to see you as King, but I wish you all the luck in the World. 

Thursday, 18 July 2013

Reason For Absence!

Hello Everyone!

I have not been blogging much recently. So this is just an update as to why really!

Just after Christmas, I decided that I would like to take up crochet as a hobby. Some of the "old fashioned" hobbies are really breaking back into the mainstream at the moment - knitting, crochet, baking, sewing, crafting in general - and I saw an advert for a new magazine being launched. I'm at a stage with my EDS where my hands and fingers are misbehaving more and more, and I wanted to find a hobby which would give me something to do, but at the same time, help me take control back over my hands! 

A family friend is a very proficient knitter and crocheter, and when I mentioned it to her, she furnished me with a wonderful book, and a shitload of wool. I can't describe how much of it there was. I also took a trip to Hobbycraft, and came home with some hooks, which were okay, but had a tendency to drag on the wool a bit. On a chance visit to House of Fraser, I picked up two KnitPro Symfonie hooks which were in the sale. I like these, they glide beautifully and they are rainbow coloured! I could only afford two sizes though, which made me a bit sad. I wanted them all! My lovely Dad then bought me a present on a random trip to a garden centre - a full set of metallic hooks, each one in a different colour. I can't describe how much I love these. The glide perfectly, have a thumb plate which makes them really easy to grip, and they are really pretty (I like pretty things!). 

So away I started, learning the stitches and starting little rows, rounds and squares. Once I'd got the knack of the squares, I decided it was time to start my first project. I am making a Granny Square patchwork blanket for my Mum. It was supposed to be ready for her birthday in June (oops), but injuries have hindered my progress a bit. I am now making a big effort to have it ready before she and my Dad go to The Great Dorset Steam Fair at the end of August, so am banning myself from lots of things until I get it done! I now have 19 squares to go until I can start sewing together. I am planning to use the first weekend in August to get it all stitched together. Exciting! Now it is in writing I must get it done. Or you all have permission to kick my online arse haha! 

So TTFN - I have some work to do! Once it is done, I will be back blogging like a demon. 

Monday, 15 July 2013

The ABC Of Me

Hello Everyone!

The Lovely Karen over at Too Dull To Blog has tagged me, to tell you about myself using the alphabet. This sounded a bit daunting, until I realised the topics were already defined. Huzzah! My brain is not coping too well in this heat, so having the framework set out makes me a happy Aporia! 


A for Attached? 
I am indeed! Uberman and I are approaching our 6th year together. He makes me ridiculously happy!

B for Best Friend? 
I am lucky to be able to say I have two amazing families, both of whom I class as my Best Friends, and my Uberman as well. I also have Cassie and Sophie, who I love to bits. 

C for Cake or Pie? 
Oh cake wins this every time. I do love cake. If it wasn't so hot, I'd get someone to help me make one later (I'm not allowed to be let loose in the kitchen alone. I break things (including myself!), and generally cause a disaster zone.

D for Day of Choice?
I think my favourite day is Friday. It means the weekend is here, and that means time with my Uberman and my Families. 

E for Essential Item?
Hmmm... I don't want to say my mobile phone... so I will say... erm... oh bugger. Mobile it is. I have a terrible fear of being without it - if I was to fall and hurt myself where nobody was around, and I didn't have it, all hell would break loose. So it goes everywhere with me. Even to the loo! 

F for Favourite Colour?
My favourite colour is Turquoise. I have flitted around the colour wheel as I've grown up, but it has been Turquoise for several years now. It's such a beautiful colour. 

G for Gummy Bears or Worms?
Bears! I'm not keen on the worms, as they tend to go a bit slimy. Bears are the best. Yum!

H for Hometown?
My hometown is the ever delightful* West Drayton. When I was younger, I would never have considered moving anywhere else. Now, I can't bear the thought of spending all my life here. The only good thing about it is that I have met my friends, and my Uberman here.
*Sarcasm very much intended

I for Indulgence?
Cosmetics, especially nail polish, and yarn are my indulgences. I'm not able to drink, and I despise smoking (this is my personal opinion - I would never be one of those sanctimonious twats who try to put themselves on a higher pedestal for not smoking - it is a personal choice, and I would never hold it against anyone.), so I spend some of the money I would have if I was still able to drink, on my hobbies instead. 

J for January or July?
July, most definitely. My pain levels are ridiculous in Winter, and I cannot bear it. I also find January the most depressing month of the year. Christmas has gone, another year is over, the weather is cold, everyone is moaning due to lack of money... it's just shit! July is *supposedly* Summer - hot and sunny (this year it is actually behaving, it's been gorgeous this year!), there are barbecues everywhere, the tinkling sound of Ice Cream trucks, holidays to be enjoyed, paddling pools to dip your feet in... I love Summer!

K for Kids?
I like kids, but I couldn't eat a whole one! Kids are not something I see happening in my future. I don't wish to pass on my EDS, I don't wish to produce a child that I couldn't pick up if it were crying, and to be honest, I wouldn't want to put myself through 9 months of agony. I am happy to be Auntie Aporia, but I will never be Mummy Aporia. 

L for Life - it is not complete without?
Love. Love for your number one, love for your family (families!), friends, pets.. even hobbies, or music, or whatever floats your boat. Love makes the world go round. 

M for Marriage Date?
I have no date set, I am not engaged! I would probably go for a Summer day though, although I wouldn't want it too hot... hmm. Maybe Spring or Autumn. Definitely not Winter though. I'd be an awfully cranky bride if I got married in Winter!

N for Number of Brothers and Sisters?
I have one brother. Critter is younger than me, but you'd never know it if you looked at the two of us together. I am ridiculously proud of him. He is very smart (although he has no common sense whatsoever!), has a beautiful girlfriend, and a very good job in London. He is ticking off all of his "To Do List", which I think is awesome. He is a total twat at times too, but he's my brother, and I therefore dispense justice. Which usually ends up in my wrists falling off a bit. Haha!

O for Oranges or Apples?
Apples. I love a good apple. Granny Smiths are my favourite. Fresh apple juice is lovely, straight from the fridge. Yummy! 

P for Phobias?

Q for Quotes?
"Faith is a blue bird, we see from far. It's for real and as sure as the first evening star. You can't touch it, or buy it, or wrap it up tight, but it's there just the same, making things turn out right."
From "The Rescuers", the Walt Disney film. Isn't it beautiful? The animation that goes with it is really sweet, and whenever I read it, I hear the voice from the film in my head. A child's voice, but it still rings true as an adult. I say I'm an adult. I lie. I don't think I'll ever grow up, and I don't really want to! 

R for Reasons to Smile?
The Uberman. My families. Yoshi, Arya and Bird. Friends. My eyes and ears. My mind. Music. Dreams.

S for Season of Choice?
Hmm.. Spring or Summer... Spring or Summer... Summer. I like Spring, but I don't like April showers. I love Summer. Everything I said in the January vs July question applies here - it is such a lovely time of year. Everyone seems happier in the Summer. It's a positive time of year, the Sun is shining, and everything is grand. Even when it really isn't, it just feels a bit better, you know?

T for Tag 5 People?
This is a bit embarrassing! I don't really know many people in the Blogosphere. Karen has named the people I do, and Octavia at The Simple Life of A London Girl is already doing an ABC themed post... So I have nobody to tag. Sad times! If you would like me to tag you, drop me a comment and I will definitely do so!

U for Unknown Fact About Me?
People emptying crisp packets into their mouths makes me irrationally angry. To the point where I clench my fists without realising it, and have to turn away and keep my mouth shut. I don't know why it does, but it really makes me rage!

V for Vegetable?
Sweetcorn. Always Sweetcorn. It is the best! Golden and crunchy and delicious!

W for Worst Habit?
Hmmm. Probably being untidy. I am incredibly untidy at home. At work, I am a neat freak, which is weird. I am making an effort to be more tidy at home - it is now in writing! 

X for X-Ray or Ultrasound?
I've experienced both, many times over! I'd probably go for Ultrasound though - usually, an X-Ray involves a lot more pain, when joints that are incredibly painful are then manipulated into more painful positions for a picture. Bleurgh. 

Y for Your Favourite Food?
Uberman's stir fry. It is food heaven. He is a very very good cook, and I am a very very lucky lady. 

Z for Zodiac?
I am a Taurus. Ironic really, when you consider my phobia. I am definitely stubborn, which is one of the key personality traits of a Taurus! 

Now you know my ABC, next time won't you blog with me? Leave me a comment - If you haven't done this already, I will tag you! 

Friday, 12 July 2013

My Visit To A New Hospital - The Royal Free

Good Evening (or morning, by the time I finish this!)

So last Friday, I took a trip to a new hospital. This is quite an achievement for me - I've been to many! I went to the Royal Free Hospital in Hampstead Heath, London. The reason for my visit was a SPECT/CT Scan. 

I was referred for this scan by my new ankle consultant. He's quite awesome, and I have a lot of faith in him - which I don't get with medical professionals very often any more. I had my ruptured ATFL Ligament in the HulkFoot™ repaired last year, after 6 months of telling the local hospital that something was wrong. 

It can be very difficult to explain EDS to some A&E Staff - they haven't all encountered it before. I was originally told it was just a sprain, and that I would be fine. When I argued that it just wasn't right, I was told they would make me an appointment for 6 weeks time, but they expected I would be cancelling it as I would be absolutely fine. I didn't cancel it, and I didn't get better. At the next appointment, I saw a lovely man who referred me straight to the ankle specialists. One MRI later, and my ruptured ligament was discovered. Off to surgery I went, for a procedure called the "Brostrom Repair". Time went by, and I worked hard at my physio, but a combination of mishaps led to my ankle refusing to bear any weight again. I was still under the care of the consultant, but he retired in December. I was transferred to the new consultant, and attended his clinic a few weeks ago - post about it here

His recommendation was a SPECT/CT scan, and the nearest hospital that offered it was the Royal Free. I expected a bloody long wait, but the appointment came through very quickly - I was very surprised! Pleasantly so really. The way it was described left me feeling a bit apprehensive. 

On Friday morning, Dad and I toodled off to Hampstead Heath. We got there very easily, which was good. I cannot lie, when I saw the Nuclear Medicine unit was in with the Oncology Department, I was fairly scared. We stopped at the shop (the hospital has a WHSmiths!) and got some sweets and drinks, which was good as it gave me an opportunity to calm my nerves a bit. Then we headed down to book in. It had that very sanitary smell, that seems to be particular to cancer units. Its quite a strange smell really. 

Anyway - we booked in, and sat in the waiting area. A lady next to me had a beautiful pair of leopard print slippers! I loved them, but she didn't know where they had come from, as they were a gift. Boo! We weren't really waiting long, and we were called in 30 minutes before my original appointment time. Winner! In we went. I was fairly surprised, as they allowed my Dad into the room. I was expecting that not to happen, especially when I was about to be injected with a radioactive solution! 

I was helped up onto the bed, which had a conventional looking CT Scanner - the polo shape - at the end. I was asked to lie down, and turn my feet into a fairly uncomfortable position. My knees instantly hyperextended, so I asked for something to go underneath them. The radiologist was great, and made sure I was comfortable. Then he taped my feet together! Not cool! My hips were unhappy, but it had to be done, so I gritted my teeth. 

Next came the injection. My veins didn't want to play on the left hand side of me, but my trusty one on my right elbow was ready to go. The syringe came out, encased in lead. That made me chuckle a bit. It was a pretty big one too! I'm not one of those people who shy away from a needle, or any medical procedures really - I love to have a good look at what's going on! So I watched it go in. It's left me with a fairly big scratch, but it went in fine. Then it was time for the first of three scans. It was over very quickly really, which I was very thankful for, as my poor hips were very subluxed and uncomfortable.

Next came a 4 hour wait. During which I had to drink lots. Ack. I am not a big drinker really, particularly under pressure. I reflux quite a lot, and it puts me off filling up with liquid. I slosh about! We took a stroll (well, Dad did - I took a roll!) around the town, and settled on a cafe just at the bottom of the hill. I can't recommend this place enough! It had a step to get inside, but loads of tables out front. The lady running it came straight out to us, and spoke to me. Sadly, when I'm in my wheelchair, a lot of people talk about me to whoever is with me. It drives me absolutely mental, but I understand some people just find it awkward. This lady spoke straight to me, which was really lovely. She was brilliant - took our orders, rearranged the furniture so my wheelchair had a clear route, and really looked after us. The food was bloody lovely too. 750ml of water had now been consumed. 

Next door was an M&S Food shop. I cannot go past one without getting some Percy Pigs. Nom. So we took a wander round there, and a woman who wasn't looking where she was going, walked straight back into me and almost sat on my lap. I did chuckle a bit, but it probably would have really hurt if she had landed on me! We got Percy Pigs, Reversy Percys, Walnut Whips and Mint Whips. Also, a litre bottle of water. I've never seen a litre sports cap bottle before - so if you would like one, M&S is the place to go. 

We killed some time sitting in the shade of a tree, then took a trundle up to the hospital again so I could use the loo. I then did a bad thing - but in my defence, I didn't know I wasn't supposed to - I used a normal disabled toilet. I should have used a specific radioactive waste one. Whoops. Then we went back to the WHSmiths, bought Ice Lollies, and went out to the seating area at the front of the hospital, to watch the world go by. By this point, I had gotten very very hot - something I had been warned might happen. We sat, and I consumed the litre bottle of water. Then Bill Nighy came out of the entrance! He looked very smart, a really well cut navy suit, and rocking the geek glasses. I thought about approaching him, but figured he had just come out of the hospital, and probably really wouldn't appreciate fuss. 

15 minutes before my return time, we headed back in to the Nuclear Medicine unit. At this point, I was segregated from unradioactive people, and had to sit in the Yellow Area. This did have a bonus - a whacking great TV which was showing the tennis. I then used the Radioactive Waste Toilet. It was monstrous! Absolutely massive. And the flush! Oh my god it actually roared. I jumped out of my skin! 

The radiologist came to get me, and off I rolled to the next scan room. Dad wasn't allowed to come in this time, so he sat and dozed in the waiting room. Like before, I was put onto a bed, and they gave me a knee support straightaway. I had to then put my feet against a foam wedge in the same position as before - and you guessed it, they taped me up again. I knew this was going to take a lot longer than before, so I tried to use some of the relaxation techniques I got from CBT. Usually, when I have MRI Scans, I rely on music to keep me calm, relaxed and still, but I didn't have that option. Eeep. There were two scans being done here, 1 immediately after the other. The first was for my entire body - checking my bone density. A flat panel camera was used, going down the length of my body. I don't really handle things close to my face at all (I think I mentioned that in a previous post... not sure!), so I closed my eyes and thought of nice things until it was done. I almost went to sleep! The radiologist came to tell me the first scan was done, and the next one was about to begin. This was just for my feet. Another Polo shaped device, but this one whirred so hard and loudly I thought it was going to take off! This bit didn't take anywhere near as long, which was good as my poor hips and ankles couldn't take much more!

The second part took around 55-60 minutes, but to be honest, for the first time ever, I found the CBT stuff useful. If I have to have any scans without music again, I will definitely be using it. 

6 days on, and my hips and ankles are still cross with me, which isn't good. However, it had to be done, and hopefully it will help my consultant work on a way to help stabilize the HulkFoot™. Whether it be fusion, modified Brostrom Repair, or something totally different, I hope that there is a way to fix my ankle to a standard that I can actually place weight on it without it giving way on me. The effects of it are spreading to my knee and hip, and it is not helping my back to heal at all. Which is really not good. 

The real plus of this, is that my Consultant is very interested in my condition, and it seems like he wants to explore it for his CV. Which I don't mind - I'd rather have that than be abandoned to live with an ankle which doesn't work. I want to walk normally again. I want to wear normal sized shoes. I want to not have to take my shoes off because I'm cutting the blood supply off due to swelling. I am hopeful that some of this is achievable. 

The scan process itself was relatively easy, but had painful moments - mostly due to being an EDS-er. I was hot until about 12 hours later, then cooled rapidly. Other than that, there were no side effects really. (Some toilet info, which is really TMI!). 

 I can't say I enjoyed my visit to this hospital (nobody ever enjoys it!), but it was clean, efficient, and organised. Which is always a plus.

I will report back with the results after my next visit with the Consultant. I find it all very interesting, and hopefully I will get to see the images! If any fingers could be crossed for me, that would be most appreciated :)

*If you read to the end of this, you are a star! Thank you for taking the time to read my essay - I never intended for it to be so long, but the words ran away with me!*

Tuesday, 9 July 2013

Apologies for Absence!

Hello Everyone!

I am a bad blogger. I abandoned my blog for a very hectic long weekend!  I did schedule some posts, which then decided not to post when they should have... grrr. I checked and then posted them manually together, but have been AWOL since. 

So I will do a brief summary of the last few days, and then follow up with some in depth bits. 

On Friday morning, my Dad accompanied me to the Royal Free Hospital in Hampstead Heath, London. I went to have some scans done, which required an injection of a radioactive fluid. The first scan was done when I arrived, at 10.45. I then had to wait for 4 hours before I could go back for the remaining scans. Once those were done, he dropped me at Paddington Station, where me and my mobility scooter were greeted by the Uberman. From there, it was on to Hyde Park, to see someone I've wanted to see for a very very long time. The legend that is Jon Bon Jovi. He did not disappoint. A review will follow ;) 

The journey home from Hyde Park was absolutely shit, which put a small downer on things, but it couldn't stop the happies from the concert. A special thank you must go to my brother for coming to rescue us from Paddington Station! We'd have been completely stuck without him. The silly sod didn't tell me that he was working on Saturday morning though, or I'd never have agreed to the offer! He had to leave for work at 6.30, and got to us at 1.00! 

We got back to the Uberman's house at 2am, and got some sleep, ready for a busy Saturday. A friend of mine had organised a coffee morning to raise money for the HMSA, which was so lovely of her! It was due to run from 10-12. My alarm decided it didn't feel like going off though, and I woke up with a start at 9.45. Whoops! We managed to be at the church hall by 10.30 though, which I thought was quite an achievement! It was a lovely morning, and great to see some of my friends and family turn out along with meeting new people. It was a real success, making £60.00 for the charity. I was really pleased! 

Once we were finished up there, we went back to the Uberman's house. His sister and her fiance were visiting from Gloucester, so there was a big family barbecue in the sunshine. It was beautiful, and he has a lovely big family, so there was lots going on! Later on, we went to a prize bingo, and I absolutely laughed my head off. I had such a funny night, and I still chuckle thinking of it! Uberman and I then went back to mine for some well earned sleep.

Then it was Sunday, and another day with the Malkins! Uberman's mum and two of his sisters were at the Scout Hut behind his house for a special event, so the rest of us sat in the garden, with the Wimbledon final on a laptop. It was electric to watch! We were glued to it, and when Murray managed to finally win it, all you could hear was yelling from all the gardens around! It was fantastic, and all of a sudden, a voice came over the fence - "Did he win?"! We shouted back yes, and there was a big roar from the Scout Hut too. It was a brilliant round up to the weekend! 

Yesterday was a very long day. I won't bore you with the details, but I was bloody glad when it was finished. Although I got into bed, watched the last episode of "Don't Call Me Crazy" (a brilliant documentary, it was really insightful) and dozed off.. only to wake up itching like mad. I had a massive heat rash on my back, and it didn't calm down until the sun came up. Bah.

So today, I am a very tired, very achey person, who is paying a penance for not pacing this weekend. It was worth it though, I had a brilliant weekend with awesome people, and I wouldn't have changed it for the world. I have spent today in the shade of a parasol, curled up on a lounger and listening to music. It has been nice and peaceful, and the warmth has soothed the aches and pains a little bit. Hopefully I'll feel a bit better tomorrow. 

I hope you all had lovely weekends in the sunshine! 

Saturday, 6 July 2013

10 Day You Challenge - 1 Picture of Me

G'day folks! 

We've reached the end of the 10 Day You Challenge, and that means we're down to one thing -  a picture of me. 

I really dislike my picture being taken. To the point there are days when I will hide. When I used to drink, I didn't care, but now that I can't I am a lot more self conscious. I will usually insist on someone else being in the picture with me if the camera owner is determined to get a snap of me! 

It is also a very rare occasion when I like a picture that has been taken of me. I am not a fan of my own face. There have been occasions though, and it is one of those rare photos that I am going to share with you. 

Haha! I love this picture. It shows so much of who I am - a bendy girl, with an Uberman arm next to her, with a new tattoo, on the day I reached my proudest achievement to date. 

I hope you've enjoyed my 10 Day You Challenge. I'd love to read yours if you've taken part - leave me a link in the comments!

Friday, 5 July 2013

10 Day You Challenge - 2 Songs

Happy Friday!

So,we're down to the final two 10 Day You Challenge posts. Picking 2 songs is going to be so bloody hard! Gah! 

2. Aporia, by Forever Never. That's where my nickname came from! My friend Simon introduced me to this band, after seeing them at Uxfest. We travelled to Rayleigh Mill in Essex to see them play, but when we got there, we were told we couldn't go in. Luckily, Simon had a number for the girl who had booked them for Uxfest, and she managed to get us in and guest listed. They totally blew me away, and Aporia just stuck in my head for weeks after. I played that album non stop for over a month. We saw them many times over, and the guys were really lovely, always making time to chat to us. I couldn't make a gig one time, as I'd injured myself (I do that a lot haha), and when they saw Simon without me, they got him to ring me so they could have a chat and wish me well! Such an amazing group. They are sadly no more, which is a real shame, as they really deserved to make it big. Seeing them play at Download was a real highlight - especially when the crowd went mental to Aporia. It's an amazing song, it really is. 

1. It's My Life, by Bon Jovi. Depending on what time you are reading this post, I could well be seeing it live for the first time ever. I am tremendously excited! I love the lyrics of this song. They fit well with my life as an EDS-er. A lot of the time, people tell me I shouldn't do things, because of the impact they have on me later. Going on rollercoasters is a good example. I love them, the rush of adrenaline actually improves the pain levels (notable exception - Colossus at Thorpe Park. Guaranteed shoulder dislocations. Boo). I  make sure I'm splinted up first, then have a nice hot bath when I get home, or back to the hotel. Obviously there will be discomfort for me, but I've had a bloody good time! "It's my life, It's now or never, I ain't gonna live forever, I just wanna live while I'm alive". That's a kind of mantra for me. Things will hurt, but that's just part of my life. I HATE missing out on good things, because it might make me dislocate, or sprain, or leave me with incredible fatigue. Holding a pen can do those things! So thank you, Bon Jovi, for creating an anthem that suits me perfectly. When I first heard it, it was on the tv channel "The Box", back when it was telephone requests. It was number 451, and I used to whoop everytime I saw it come up on the screen. I went and bought the single from Woolies, and we went camping the next day. I put it in my discman and listened to it every night before I went to sleep. I never ever get tired of hearing this song. It's absolutely brilliant. I will report back on the gig in a review, and let you know what I thought of it live! 

Wow, that was hard to narrow down! Notable mentions must go to:
Metallica - Nothing Else Matters
Alexander O'Neal - Criticize
New Radicals - You Get What You Give
Black Stone Cherry - Killing Floor

There are so many others, but I don't want to bore you! Let me know your top two -  I love music recommendations! 

Thursday, 4 July 2013

10 Day You Challenge - 3 Films

Hi Everyone!

Today's 10 Day You Challenge post is 3 films. Ouch, this is hard!

3. Logan's Run. I remember watching this with my Uncle Nick on VHS. It was one of his recordings, and it had a lovely red case which looked like a book, and the title was written in his distinctive handwriting. He always used one of those gold paint markers. They looked so posh all lined up next to each other!  The film was so good, my favourite Sci-Fi ever. I know a lot of people would disagree, but I loved it. The idea of an over populated world, with people being sent to the carousel to be shut down... it kind of seems more plausible now, that this would happen in the future. I loved the rebellion, the romance, the fighting. And I love the fact that I can watch it now and remember a really good time with my Uncle Nick. There are plans for a reboot - NO! I will not be watching it. It won't be right! 

2. Mary Poppins! I couldn't do this list without a bit of Disney in there! I have loved this film from the very first time I saw it, and it is the highlight of my Christmas week when it comes on! I will even cut short sale shopping to get home in time to watch it! The songs are catchy, Dick Van Dyke's atrocious attempt at a Cockney accent is hilarious and endearing at the same time, and Julie Andrews is just wonderful. I love the mixture of live action and cartoon - the penguin sequence is my favourite part of the film. The songs are catchy - who hasn't joined in with "A Spoonful of Sugar" or "Supercalifragilisticexpealidocious" at some point in their life? It's just a wonderful, magical film, and I admit, that I did try to draw a chalk picture on the pavement and jump in. Mary Poppins is pure joy (with a little bit of sadness when she leaves!).

1. Stardust. Based on a brilliant book by Neil Gaiman, this is a more adult fairytale, stepping away from the Disney ideas. This film is very much aimed at females, but has enough humour and action to keep the guys interested too. All the cast are brilliant, even Sienna Miller, who usually bores me rigid. Claire Danes is great as Yvaine, and absolutely beautiful - just how I pictured her from the book. Robert De Niro is absolutely brilliant in this film. He plays the part of the flamboyant Captain Shakespeare perfectly. I would never have pictured him when reading the book, but once I saw his performance, I was convinced he was absolutely the right man to bring the character to life.  Michelle Pfeiffer, as always, is brilliant. She makes an excellent bitch! I truly love this adaptation, which makes a change - I usually hate them, because they miss stuff out. I love curling up on a miserable night, with a bar of chocolate and the Uberman, to watch this film. Absolute bliss. 

So there are my top 3 films. Leave me a comment and tell me your top 3!

Liebster Blog Award!

I am so chuffed! The lovely Karen from Too Dull To Blog (she is not in the least bit dull, I can assure you!) has kindly nominated me for the Liebster Award for new bloggers!

In return for this, I have to tell you 11 random facts about myself, answer the 11 questions Karen has set for me, and nominate 11 new bloggers with less than 200 followers for the award. I sadly don't have many bloggers to nominate, but I hope the people I choose will be as pleased as I am to be part of this! 

So - 11 Facts About Me

1. I currently have very faded lilac hair. It is streaked with silver and blue, and I quite like it!

2. My favourite flower is a Gerbera. 

3. Criticize by Alexander O'Neal never ever fails to put a smile on my face, even when things are really crap.

4. I have Killswitch Engage lyrics tattooed on my wrist. They were (and still are) very appropriate in my mind - the tattoo was a tribute to my Grandparents and Uncle, how have sadly passed away. The lyrics are from Rose of Sharyn - "It Won't Be Long, We'll Meet Again". This was my first tattoo, and is very special to me. 

5. My wrists dislocate more times than I can count each day. 

6. Mint Choc Chip is my favourite flavour of ice cream.

7. I look a lot like my Dad, but people don't make the connection until we are next to each other. 

8. My yarn stash is a bit ridiculous. 

9. I cry when Dobby dies, in the film or book - no matter how many times I read or watch them. Uberman laughs at me when I do. Meanie. 

10. I cut my knee open in Universal Studios, by running up a down escalator. Whoops. 

So, onto the 11 questions set for me by Karen!

1. If you could change one thing about you, what would it be?

I think most people would assume I would wish the EDS away. Sometimes I think about it, but it is part of me, and I have adjusted to it. So, as trivial as this sounds, I would change my lack of singing ability. I desperately wish I could sing. I would love to be a rock star! 

2. If you could go anywhere, where would you go?

It is not the most exotic place in the world, but it is a place I love. Weymouth. There are other places in the world I would love to see, given the opportunity, but Weymouth is where I belong. 

3. Who would you take with you?

I would take the Uberman. Him and Weymouth = bliss for Aporia!

4. What do you regret most?

I had the top of my ear pierced at 13, and with it being a fashion thing, I didn't do any research, just had it done. At a hairdressers. With a gun, and an earring which was unsterile. My cartilage shattered, and a horrific infection set up. I ended up with a collapsed ear. It looked horrific, and left me tremendously self conscious. I had it reconstructed using a piece of cartilage from my ribs. If I could turn back time, I would have still had the piercing, but had it done professionally, in a clean studio, and with the correct equipment.

5. Where are you happiest?

I think you'll already know what I'm going to say... I am truly happiest in Weymouth. But... I am also happy to be curled up next to my Uberman, wherever that may be.

6. Why did you start blogging?

I have read blogs for years, but hadn't ever considered starting my own until June this year. For Ehlers-Danlos Syndrome Awareness Month, alongside my fundraiser, I kept a diary each day on Facebook, of things that I wouldn't necessarily tell people on a normal day. A lot of my friends gained more insight into my life, and a few mentioned the idea of starting a blog. When the month came to an end, I had enjoyed writing so much, that I decided what the heck - and here I am. I am very much a noobie, but really enjoying it - especially being part of the LBLC!

7. What is your favourite beauty product?

Oooh, this is a toughie! I love so many different things, but I have made a fairly new discovery, which I now use every single day. Fortune Cookie Soap do a range called "Whipped Cream", in a range of different scents. It is a beautifully light body moisturiser, and I really cannot praise it enough. It sinks in with no greasy residue, and my skin is so smooth and soft afterwards. I have it in two scents, and both are strong, without being overpowering, and last the entire day. It is also great at keeping my many scars moisturised! The company is based in America, so you do get hit with customs charges on big orders - but if you do a co-ordinated group order, it works out a hell of a lot cheaper! 

8. If you had to stop one thing you do often, what would you give up?

This is such a tough question Karen!!! If I had to stop one thing, it would probably be calling Bingo on Thursdays, at our local British Legion Club. I would hate to do so, because it is good fun, and the majority of the people who come to play are really sweet and lovely. However, on days where I feel poorly, it can be quite draining. Even so, I still enjoy it!

9. What is your guilty TV pleasure?

I don't have "guilty" pleasures as such - I come out and talk about it loudly and proudly! But probably the trashiest thing I love watching, is Snog, Marry Avoid. I dislike the fact that they tend to portray "alternative" looks as unattractive, when in fact the girls/guys sometimes look beautiful. Who defines normal anyway? I love it when they rebel and go back to their old look! It is fun to watch, POD is an absolute bitch and cracks me up with what she comes out with! Ellie Taylor is funny too. I really like it! 

10. Do you paint your toe nails?

I love having my toenails painted, but due to my back problems, I can no longer do them myself. Shaz (Uberman's sister) does a lovely pedicure though- foot spa, scrubs, rock salt, moisturise and nail polish. She did one for me last month and used Meep Meep Meep (OPI Muppets Collection). My toes looked so pretty!

11. What is your favourite season?

My favourite season is Summer (not that we can call it that in this country!). I love going to the beach on a warm day and dipping my toes in the sea. I love going to the river at Windsor, and going along the path watching the boats and swans, with a nice ice cream. I love seeing all the gardens looking neat, with the flowers all in bloom and beautiful. I love being able to have bare feet in the sun, while I'm laid on a lounger, listening to music with my Ray-Bans on. Slush Puppies and Ice Lollies when it's a warm afternoon. Barbeques. Holidays. When it rains on a hot day, and sizzles on the pavements, it makes a beautiful smell too!

So that's my part done with... now onto nominations!

I don't have many contacts in the blogosphere yet, so I nominate only two. 

Allison blogs at "The Simple Life Of A London Girl". She writes some amazing things, so please check her out!

Keshia blogs at "One Whisper In A Million Screams". Again, she writes some amazing stuff - her post on the British weather is spot on! I think she may have been nominated before, but she deserves more readers, so I nominate her again!

I hope you've enjoyed reading this! Karen set some tough questions - number 8 took me over a day to consider! I really liked doing this post. If you've been nominated for the Liebster, leave me a link in the comments so I can check out your pages! 

Wednesday, 3 July 2013

10 Day You Challenge - 4 Books

Good Morning!

Today's 10 Day You Challenge Post has been the hardest to write so far! I have been a bookworm since I was very young. I used to spend hours after school in the library, doing my homework then choosing some books as a reward. It was my happy place at a time when school was a battlefield for me. As things got better, I gradually drifted away from the library, and I regret that a bit. There was something special about going in, taking a book from the shelf, and curling up on the beanbags, with a bar of chocolate, and reading it until they closed. 

I did keep reading after I stopped going to the library, but I focused my attention on buying books from car boots and charity shops. There were the odd exceptions, the Harry Potter series, for example. Then after two years of outright refusing to buy an E-Reader, the deterioration of my hands meant I was unable to hold some of my favourite books. I was really upset, so we went to try out some different ones, to see how well my hands would cope with them. I ended up with a pink Sony one as a Christmas present, and I haven't looked back. I find it sad sometimes, not to have the physical pages to turn, and that lovely book smell lingering, but it meant I could revisit some of my old favourites again. 

So here are my top 4 books!

4. Charlie and The Chocolate Factory, by Roald Dahl. I believe that every child in the world should read this book. Roald Dahl is very unique, in my opinion, in the way he managed to synchronize his imagination with that of children everywhere. I have never met anyone who didn't enjoy his work, and Charlie and The Chocolate Factory is one of the best examples. Not only was he able to produce a story that made children excited, made them laugh, and want to be in that world, he managed to subtly insert some values in there, which I have never forgotten. The importance of family. The fact that honesty is important, even when you may have done something wrong. Bad behaviour is not something to be rewarded. I adored this book as a child, and still do as a 26 year old (although I never really grew up!). His imagination was a phenomenal place, and he would be one of my dream dinner guests. 

3. Hold The Dream, by Barbara Taylor Bradford. My mum used to have a bookcase in the hall, stacked full of books which I was not allowed to read until she felt I was old enough. When she finally let me choose a book from the shelf, I was drawn to the bold writing on the spines of the "Woman of Substance" series. I read all three from the original trilogy, but this was my favourite. It covered so many themes, which I hadn't really encountered in my reading career until then - love, power, sex, death, feuds, crime, money, to name a few - and even though the books were older than I, and set before my time, they taught me things that still apply to me now. I didn't really go for any other books from Mum's bookcase, but I had to repurchase Hold The Dream, as I read it so much, it fell apart! 

2. Polgara the Sorceress, by David Eddings. I was introduced to Eddings by a very special English teacher. I was taking the English A-Level totally alone, and it meant that I developed a strong rapport with the three teachers I had for the course. This lady was absolutely amazing, and we had very similar tastes in books. She knew I would love his stories, and brought me in the first book from the "Belgariad" series. I opened it when I got home, and could not put it down. I took it back the next day, and she had the next one ready for me. I absolutely loved it. Shortly after, she went on maternity leave, so I never got to truly thank her for introducing me to such an amazing author. It was so hard choosing which book I loved most from the series, but I chose Polgara's story. I don't want to give anything away, but if you choose to read the series, this book fills in so much back story, and gives you a real insight into a strong, beautiful and amazing woman. She is my favourite female character out of all the books I have ever read, and there have been so many! 

1. Harry Potter and The Half Blood Prince, by JK Rowling. This was a very bittersweet book for me, as it marked the end of a series that I was (and still am!) absolutely transfixed by. I am not ashamed in the slightest to admit that I am a total Potter geek. Even though the series has finished. I devoured this book on the day it came out, in around four hours. I experienced so much emotion whilst reading it. I laughed, raged, and cried (more times than I could count). I still do, whenever I read it - even though I know how the story works out. JK Rowling did a brilliant job with the final book in the series. There is always hope with Potter fans that she will write another book, but if she doesn't, then it ended on a high note, and for that, I am grateful. 

This was so difficult to narrow down! There are so many stories that I have read and loved, and so many that I go back to again and again. I am regarded by some as strange in that respect - a lot of people can read a book once and once only. I am actually grateful that this is not the case for me. I can enjoy these stories many times over. 

I can't recommend any of these books highly enough, and wish I could have listed more! If you do decide to read any of these books, or the other books from the series, do let me know what you think of them by leaving a comment! Also, tell me your four favourites - I'd love some new reading recommendations! 

As always with this challenge, don't forget to have a peek at Karen's top four books!

Tuesday, 2 July 2013

10 Day You Challenge - 5 Foods

Hello Again!

Today's 10 Day You post is about food. I cannot tell a lie - I love food. My waistline does not, but it never wins the argument. I have a varied taste, and  sometimes I surprise people with what I eat/don't eat.

So, onto my 5 favourite foods (this has been BLOODY hard to narrow down!)

5. Sweetcorn. My ultimate vegetable. I love it, and would have it with every meal if I could. It's got such an awesome taste, and texture, and it makes me very happy. I like it on the cob or off, it doesn't matter which. I've been known to eat it out of the tin cold as well. With a spoon. One of my 5 a day, right?!

4. Dippy Boiled Egg and Marmite Soldiers. I know, Marmite is either a love or a hate thing. I love it, provided it's a thin scraping. Too much and I shudder about like Tom when Jerry hits him with something. This is one of my favourite food combinations. The egg has to be runny though- it's hardly dippy otherwise is it?! Definitely my comfort food when I'm feeling low or poorly. 

3. "Treacle" Sponge and custard. Baked in the microwave. The treacle is actually Golden Syrup, but it's always been called Treacle Sponge in our house! It's stodgy, but oddly light at the same time. The custard must also be piping hot. My dad has it cold, but that's so very wrong! The Harvester did a Treacle Sponge Sundae as a limited edition, and that was very good too. 

2. Steak, chips, and onion rings. Simple, but just so good! I have my steak medium-rare. It was always well done, until one day I got the wrong steak by accident. I've never looked back. It is usually my go-to in a restaurant. Lovely grub!

1. The Uberman's stir fry. He makes the sauces himself, and it is just divine. It is absolutely delicious - the perfect mix of savoury, with a sweet chilli bite to it. The veg is always crunchy, the meat is juicy and flavourful, and it is always best with rice noodles. My favourite meal!

What foods would you choose for a top 5? Drop me a comment and let me know! I love to read them xD

And don't forget to check out Karen's top 5 foods too!