Tuesday, 17 December 2013

Festive Favourites!

Deck The Halls With Boughs Of Holly, Fa-La-La-La-La-La-La-La!

It's 8 Days until Christmas, and the LBLC are feeling festive. So lovely Louise decided a Festive Favourites post was in order. Which makes me happy. I bloody LOVE Christmas! It's so beautiful, colourful and bright, and I take huge amounts of pleasure in watching other people open their gifts. I love the smiles on their faces! 

So without further ado, here are my...

Favourite Christmas Carol

I am not a religious person, but there is something about "O Come All Ye Faithful" which resonates with me. It's hauntingly beautiful, and one day I would love to go to a big carol concert and hear it. 

Favourite Christmas Song

Now this is a tough one! I am a mega fan of Christmas songs. I've had the music channels on pretty much every day since the 1st December! I think I can narrow it down to three. Which is not the objective here at all. I fail heh. Still. 3 you will get!

Darlene Love - All Alone On Christmas

It's totally underrated, and makes me feel so festive! 

Queen - Thank God It's Christmas

I love Queen, and this is a corker. I haven't seen much of it on the music channels this year though :(

Slade - Merry Xmas Everybody

This song is very bittersweet for me. I've loved it since I was a little girl. My family are all very into Christmas, and none more so than my Uncle Nick. He was Mr Christmas. It took him days to decorate the house, and it always looked amazing. This was his favourite. We lost him to cancer in 2006, but I think of him every time I hear it. 

Favourite Christmas Film

National Lampoon's Christmas Vacation. It doesn't matter how many times I see it, it leaves me in hysterics! 

Favourite Christmas Tradition

When my brother and I were small, the "fairies" used to come overnight and decorate the house for Christmas. On the tree, there was a Robin. He used to watch us, and on Christmas Eve he would fly off to Father Christmas to tell him if we had been good or not. It was an inspired idea on my parents' part, as it made sure we were good in December! One year, they forgot to take him off. Oh the trauma!! We were inconsolable thinking Father Christmas wouldn't come! Now I decorate the tree, and the Robin still watches to make sure everyone is good. And if they are, he flies away on Christmas Eve ;)

Favourite Christmas Present

This is another toughie! As a little person, it would have to be my pram. It was burgundy and beautiful. I was so proud, strutting up and down the street outside our flat! It's on video somewhere *cringe*. As a more grown up person, it would have to be my bottle of Chanel No.5. I felt truly grown up and sophisticated! 

Favourite Christmas Craft

It is only this year that I have started a craft. I always thought I was hopeless at anything crafty, but this year I have taken up crochet and I'm really enjoying it. I am working on Christmas presents at the moment - almost done though! 

Favourite Christmas Food

I love ALL THE FOOD! Haha! I have to go with the Turkey here. My Dad randomly watched a Delia Smith programme years and years ago, on preparing a turkey. He's done it her way ever since, and it is beautiful. And artery clogging! Nom. 

Favourite Christmas Recipe

Again, Delia's Christmas Turkey. Line a tin with foil. Stuff the bird at both ends, one with sausagemeat and one with sage and onion. Smother it with a slab of butter, and cover it in nice cuts of bacon. Build a foil tent over the top, and put it in the oven on a slow heat overnight on Christmas Eve. When we get up in the morning, the smell is divine! We take the bacon off mid morning and munch on that, then the oven is turned up ready to finish it off. It is so flavourful and tender and yummy!

Favourite Christmas Drink

I can't drink alcohol, so my favourite soft drink is J20 Glitter Berry. I can't get enough of the stuff! It's so pretty as well. I like glitter! A special mention also goes out to Orange Hot Chocolate and Mint Hot Chocolate. Lovely stuff. 

So there you have my festive favourites! I would love to hear yours; if you are taking part in this tag, leave a comment with the URL and I'll be sure to stop by! 

Monday, 2 December 2013

An Anniversary... (or should that be an Ankleversary?)

That I don't particularly care for, but is there all the same, passed this weekend. 

Two years ago, on the first weekend in December, I dislocated my ankle on a night out. I was in an eighties club, spinning right round to "You Spin Me Round (Like A Record) by Dead or Alive. Only all of a sudden, I wasn't spinning any more, I was slamming into a wall. Ooops. Not thinking too much of it, I relocated it, spent the rest of the night sat down with some ice, then was helped to the cab to go home. Where I just ignored it and went to bed haha! 

The next morning (afternoon... ssh), I got up and was bullied into going to A&E by many family members, who suspected a break. It was all shades of black purple and blue, and very swollen, which is quite unusual for me. I don't tend to swell much. So under protest, off I trotted. The doctor almost fell over when I told her that not only was I stone cold sober at the time I hurt it, I was also in flat shoes. "The unluckiest girl in the world", she said. The X-Ray showed no break (which is very unusual when an ankle dislocates. Unless you're a bendy!), but noting my previous history and the lack of stability, she referred me through to fracture clinic the next day and I was banned from weight bearing. By this point I knew exactly what was coming next...

Plastered, up to the knee. Just in time for Christmas. Perfect timing. Although the Plaster Room staff at my local hospital are bloody brilliant. They are so cheerful, and try to make the best of a bad situation for everyone. So my pretty pink plaster cast was absolutely smothered in glitter! It was as pretty an accessory as it could have been.

My follow up appointment after a few weeks in plaster was a very frustrating appointment, and it was only the fact that I stood my ground which meant a further follow up appointment was made. Unfortunately the clinic was very busy, and after another X-Ray I saw a different Doctor. Who was very unpleasant, refused to believe I had dislocated my ankle and was disgusted that they had wasted time putting me in plaster. He agreed to make a 6 week follow up, but was expecting me to not need it.

Needless to say, I did. I was then referred to the ankle surgeons for an urgent MRI scan, where they discovered that I had totally ruptured my ATFL. In your face, Dr who basically told me I was wasting their time and resources! By this time it was July. I was in surgery a week later. Unfortunately, the ligament was beyond repair, so a graft was taken from another piece of tissue. 

I dutifully did everything I was told, did my physio exercises, but my ankle was still totally unstable. So much so, that when I put weight on it, my ankle bones were touching the floor. This has had a major effect on the rest of my body, and really was the first step on the downward spiral I have gone through with my EDS in the last two years. At my next follow up, I was referred for the radioactive scan, and it was established from those results that I would need a permanent orthotic, known as an AFO. 

I have been using my AFO now for almost a month, and it is helping to stop my ankle running away. It tries to, but there is a big whack of zebra print plastic in the way stopping it. It is still painful, but there is a definite improvement in my frame walking, which is great! 

So how did I decide to mark this anniversary? I was all set to go out for an evening with friends on Saturday, and then make my front room all festive and pretty on Sunday. 

My body clearly had other ideas. I turned my head and kind of left my body behind (epic proprioception fail!), and my neck made a spectacular crunch. Instant agony, pressure in my head, dizziness when I move my neck and pain shooting into my shoulder. It triggered a migraine on Friday (interesting link made there!) which left me in tears. I hate crying about pain, it just grinds my gears. So bang went all my plans. I spent Saturday evening watching Pirates of The Caribbean with the Uberman instead, which was lovely. Sunday morning I was relegated to the sofa while everyone worked around me. That made me quite sad. I love arranging the ornaments in the cabinets, sorting out the fireplace and the garlands. I sat watching everyone else do it, and feeling thoroughly miserable and useless. My real domain though, is my Christmas Tree. I love doing the tree - for me, it is the one thing that means Christmas is on it's way. So I insisted I would be doing the tree. A chair was brought over, and although it took a lot longer than usual, my tree now looks pretty and twinkly. Huzzah! 

So after all that exertion, and a night of very little sleep, I decided a visit to the GP was in order. Every muscle in my neck has gone into a big spasm, so I am now in the early stages of floating on a haze of muscle relaxants. Eep. As long as it helps them settle down, I will settle for being a zombie. I am also under strict orders that if there is any change in sensation or pain level, I go to A&E straight away. Bleh. 

So yes. The first weekend in December is not my friend it would seem! However. The festive season has begun. For this reason, I am happy today even though health wise, things are pretty crappy.

In the battle of happy vs crappy, today's winner is happy. 

Wednesday, 27 November 2013

I Love Autumn Tag

I have been tagged by the lovely Keshia at Kesizzle's Korner in a post to tell you what I love about Autumn. I cannot lie, I am not Autumn's biggest fangirl. It heralds the fact that Winter is Coming. Eep. There are some things I like though. So without further ado...

1. Favourite Autumn Lip Product?

I am not a major user of lip colours, so my main product is lip balm,to stop chapped lips as the weather gets colder and windier. I used to use Honey Trap by Lush, which I adore, but I'm on the hunt for something a bit less expensive but still animal friendly. Any recommendations?

2. Favourite Autumn Nail Colour?

I don't usually stick to seasons when it comes to Nail Polish. If I fancy wearing a certain colour I will, whether it is in season or not haha! Rebel! However, I liked wearing Color Club - Sparkle and Soar as my Halloween week polish. It is a beautiful bright orange with a golden shimmer through it, which suited Halloween orange but also Autumn leaves. Berry Smoothie by George at Asda is also a lovely polish which suits the end of Autumn and beginning of Winter. 

3. Favourite Autumn Candle Wax Tart?

I am not really allowed to burn candles at home, so I have an electric wax tart burner. I am currently burning a Cherry Cola tart from Candlewick Greens which is lovely, but once it is spent then I am planning to move on to more seasonal scents - Christmassy smells, Cherry Pie, Shortbread... Mmmm... The only downside is, these tarts are so strongly scented that they take forever to burn out!

5. Favourite Autumn Drink?

Hot Chocolate. With cream and marshmallows. Preferably with a shot of orange syrup as well. Yum! It is lovely and relaxing. Soothes and warms you up when you've been out in the cold. Lovely! 

6. Favourite Autumn Scarf or Accessory?

I have a lovely scarf from Tesco with owls on, which I really love. I am wearing it a lot, trying to save my knitted scarves and bits until it's really cold. It's warm enough without being suffocating, meaning I can wear it indoors and outdoors. Lovely jubbly. 

7. Favourite Autumn Hair Style?

I don't tend to change my hair for the seasons. It is usually down and straight. Exciting huh?!

8. Favourite Autumn Activity?

I like going to Garden Centres with my Dad to see what new Christmas decorations are out there each year. Going to see the pretties has been a tradition since I was a small thing, and it doesn't change! I love it. 

9.  Favourite Thing About Autumn?

I like the colours the leaves turn before they drop. The beautiful shades of orange, red, yellow and gold. They reach such beautiful heights before they die off, it is a bit melancholy really. 

10. Best Autumn Memory?

When I was smaller, and before we got the huuuuuge shed that now takes up a big chunk of the garden, we used to have lots of people over for fireworks. It was always a fun evening. One of my favourites was probably totally not safe, but still makes me chuckle. The men used to compete with each other as to who could bring the biggest firework... take from that what you will ;)! One year there was a firework that had multiple single shots, over 100 of them. Only, it was lit, and they all went off together. There was a huge bang, and bits of plastic and paper EVERYWHERE. We were still finding bits two or three years later. It still makes us laugh even now! 

11. Hottest Autumn Trend?

I am really liking the baroque printed skinny jeans around at the moment. So much so, I bought a pair yesterday. I haven't tried them on yet though. Also, the knitwear trends are amazing this year! I have a grey jumper with a penguin on which I adore. 

12. Tag 4 Favourite Bloggers!

4 of my fave bloggers have already been tagged, so I only have one more - the lovely Allison!

So that's my Autumn post done! Tell me what you love about Autumn - feel free to use the tag but leave me a link so I can read your favourites! 

Thursday, 14 November 2013

It's Late on a Thursday Night...

...and since the local Legion closed, I have found myself with nothing to do on a Thursday evening. I used to call Bingo there. Sometimes it drove me absolutely scatty, but most of the time it was great fun, and while I don't necessarily miss the place, I do miss the people and the fun we had. 

So Thursdays have gone from being permanently occupied to perpetually vacant. Which I am still getting used to. I am not used to having this time spare, so finding something to fill it with is taking time, trial and error. Tonight has been Christmas Crocheting. I am making some presents this year, and I am really loving seeing them come together. I hope their recipients like them! It was all going swimmingly until I subluxed my left collarbone this evening. It is the first time I have done that, and it hurt. I feel a bit sick from it still. Ice is not doing a huge deal. I feel another uncomfortable night coming on. 

I haven't slept well now for a while. There was a brief respite last week, where I had a wee adventure and left myself exhausted, but then back into the cycle of no sleep/extreme fatigue/no sleep and so on. I've almost forgotten what it was like to go to bed and sleep well. Being comfortable is a huge part of it. I have been struggling with my shoulders (left in particular) for a while now, and being unable to sleep on my back is leaving me with no option but to lay on sore shoulders. Which = waking up sore to turn over. Repeat eleventyeight times and the night turns into the day before you know it. Morning rolls around, and I'm so tired from the crap night that I finally crash out, wasting the morning. So any bendy tips on comfort when sleeping would be most gratefully appreciated! 

I am aware I have been absent again, and for that I apologise. The last few weeks have been a bit of an emotional rollercoaster, which I will go into in a different post. I didn't want to clog this place up with pure negativity, so I was waiting until I could see the bright side before I let the world know about it! I am almost there, so I feel like I can start posting things again without being too much of a negative Nancy. 

Having read this back, it has been a bit negative, whoops! Sorry about that. The crochet stuff is positive though. It's keeping me occupied and it's gratifying to see something I have made with love for someone come together. I have never found a craft that I have been any good at before, and whilst I am still not very good at it, I am improving, and I am really really enjoying it! Huzzah xD 

Right, I'm off to change my icepack and get in my jamas. If you have come back for another read after a bit of a break, then thank you, you lovely person you! I won't leave it so long next time *promise*

Monday, 28 October 2013

Nostalgia Q&A: A Brief Journey Through The Childhood Of Aporia

It's been a long time since a joint LBLC post, and I have to say that the theme of this one is probably my favourite so far! 

"There is no land like the land of your childhood"
- Michael Powell

"We carry our childhood with us"
- Gary D Schmidt

"If you carry your childhood with you, you never become older"
- Tom Stoppard

I have never wanted to grow up. I still love the things I loved as a child, and I revisit them every now and then. Especially when I'm feeling low - they brighten my day and put a smile on my face. It's really exciting to be able to share them with you! So without further ado... welcome to the favourites of my childhood! 


I was a huge reader as a child. I worked my way through so many books, spending hours in the library choosing them. It has been really hard to narrow this category down! I've chosen 5, but there are many many more...

The Magic Faraway Tree by Enid Blyton
Charlie and the Chocolate Factory by Roald Dahl
(Sweet Valley High) Return of the Evil Twin by Francine Pascal
What Katy Did by Susan M Coolidge
White Boots - Noel Streatfeild

There are so many more I wanted to include in this list! I have a lot of them on my E-Reader, and I have a feeling I will be revisiting them soon! 

TV Programmes

I had, and still have, a HUGE love for Rainbow. I collect Zippy memorabilia! It was my absolute favourite, and still brings a smile to my face when I see it now. 

Other favourites included:

Fun House
The Crystal Maze
The Raggy Dolls
Spot the Dog

It occurred to me recently that my love for The Raggy Dolls has a huge amount of irony. There is a character called Lucy who is made with faulty thread, which means her arms and legs fly off at random intervals. Sound familiar? Bendy readers will get this one! 


As a tiny thing, I had a real thing for Rick Astley's Never Gonna Give You Up. As I got older, like Sizzle and Louise I got very into the Spice Girls. Who Do You Think You Are was my top Spice Girls song! 

Other favourites of mine were:

A1 - Ready Or Not
B*Witched - C'est La Vie
5ive - Keep On Movin'
Bon Jovi - It's My Life
Texas - Summer Son

Nowadays my taste has completely changed, but when I hear these I still sing along!


I was a big Disney fan, but my favourites are not what you would usually expect - Mary Poppins and The Sword In The Stone are my top two. Closely followed by Robin Hood and The Rescuers! I was not a huge Princesses girl - I enjoyed them but they weren't my favourites. 

5 more films I loved as a kid:

Willy Wonka and The Chocolate Factory (Gene Wilder is amazing!)
Honey I Shrunk The Kids
Short Circuit 2 (I sobbed when they beat him up!)
The BFG 
Chitty Chitty Bang Bang


I was a big Spice Girls fan. They were the first band I saw live, supported by Cleopatra (Comin' Atcha!). I LOVED Take That, but never got the chance to see them live back then (yes, I sobbed my heart out when they split). I did see Boyzone live with my cousin and her friend, but I don't really remember much, as I was very poorly at the time. As I got older, Westlife came along, but when I hit 15 I started listening to Kerrang, and my music tastes changed completely. System of a Down were one of my favourites to begin with, and then I was introduced to The Wildhearts. Love at first riff!


I started off with The Animals Of Farthing Wood. Every week I would look forward to it arriving, and devouring it eagerly as soon as it came in. I remember once being in bed, it was still daylight and I was happily rereading an issue, when my dad heard me turn the pages from outside my door. I got into a lot of trouble for not going to sleep! As I got older, I moved on to Mizz, but that didn't last long, and I moved away from magazines until I got older and into some real trash! 


The first console we had was a Sega Mega Drive, and I still have it. My favourite game of all time is Castle of Illusion. It was the only game I could play better than my brother could, and I can speed run it on normal difficulty in 30 minutes! 

More games I love(d):

Sonic The Hedgehog ("up, down, left, right, A, start" anyone?)
Columns (2 player Flash mode - addictive!)
True Pinball on PS1 - the Viking table was the best!
Crash Bandicoot on PS1
Chartbusters (an awesome Board Game based on the Music Industry)


Once I was old enough to choose what I wore, I was a total tomboy. I refused all dresses and skirts, wrapped myself up in joggers, sweatshirts, polo shirts, football shirts... As time went by I mellowed it a bit, but followed the crowd - denim jackets with hoodies, Nickelson polo shirts *cringe*. I migrated from joggers into jeans, and then at 15 I moved into full on "grunger" fashion. Huuuuuuge wide legged jeans, band tees and hoodies, and black vest and strap tops.

Subject At School

I was a bit of a school nerd, I absolutely loved it. My favourite subject was Drama. I loved how I could express myself, have fun and just let loose. I was a big fan of English too - it involved reading! 


One of my favourite meals as a kid was Dippy Egg and Marmite Soldiers. I still love it today, I find it really comforting. Grillsteak, Egg and Chips was another meal I loved too. 


I used to love going to the shop at the bottom of the road and getting some penny sweets! Gummy cherries, milk bottles, jazzies... but I loved Freddos and Tazos too. There began my chocolate love affair. Also, Sherbet Dipdab, Parma Violets and Fizzers used to come back with me in my little paper bag!


My main hobby was reading. I used to spend hours in the Library after school (there was a time when I had no friends whatsoever, so books became my friends), immersing myself into a fictional world. I tried gymnastics, but was absolutely awful at it, ending up in a lot of pain (now I know why!). I tried to learn the recorder, but that didn't last long. I was fairly useless at hobbies, except for my reading. The only outdoor thing I enjoyed was a good game of Kerby. I didn't enjoy getting lumped with the ball running back to safety though! 

So there you have a quick look back through the childhood of Aporia. I could have gone on forever! I would love to read more Nostalgia posts, so if you have done one, please leave a link to it in the comments -  I always read and reply to them. 

Also, don't forget to check out the nostalgic posts from the other LBLC ladies:

Saturday, 19 October 2013

But At The Weekend, Everything Will Be Okay...

A lyric from a top tune by The Wildhearts there. The debate rages on as to which version is better - Weekend 96 or Weekend 98? 

Good ol' Smileybones. 

I'm feeling a bit better today. I'm up, dressed and in my comfy chair. It took a lot of spoons, so I'm a bit knackered now, but I'm pleased with myself. I'm still relying on liquids and cold things to soothe the soreness though. My voice is still AWOL too. If you see it, can you send it back my way? Ta! 

I've neglected music lately, which is something I'm trying to change. I've realized that one of the big loves in my life has been missing, and maybe it's a key to improving my happiness levels. My iPod is currently somewhere in the depths of my room upstairs, which I am quite sad about, as I can't get to it and give it an update. So I've taken to listening to Kerrang radio at night when I can't sleep. It's just nonstop music with no DJ at that time, so when I hear a song I like, I Google the lyrics to find out what it is and who it's by. Recently discovered songs for me are:

Volbeat - Lola Montez
Five Finger Death Punch - Battle Born
The Answer - Spectacular
Tonight Alive - Lonely Girl
Pearl Jam - Mind Your Manners
Heaven's Basement - Heartbreaking Son Of A Bitch

All pretty different, but equally awesome. Any suggestions on great new music to listen to are greatly appreciated!

I'm really liking the overnight stuff on Kerrang. There's a really good mix between new and old tracks, and it makes me smile and gets me relaxed all at once. My love for music is back, and it's stronger than ever. This is a very good thing! 

Friday, 18 October 2013

Review: HTC One

Welcome to my review of my newest gadget. 

I am approaching this slightly differently to all of the other reviews of the HTC One that are already out there. This is a review based on the experience of a bendy user. 

Having previously used a HTC Sensation, I knew that I didn't want a phone that was too much bigger. I have very bendy hands, and I find that the bigger things are, the harder they become to grip. I knew I didn't want an iPhone - I love the Android platform, so it was really a toss up between waiting for the Nexus 5, or going ahead and getting the HTC One. 

In the end, my hand was forced, as the phone I was borrowing was well on it's way to dying. I went into the o2 shop to have a look, and ended up leaving with the HTC One, on a much better deal than the one I had previously! Bosh. 

The size of this phone is absolutely perfect for my hands. I get no hyperextension when holding it, which is a key factor for a bendy person. This holds true, even with a bulky case (I am a clumsy bugger, and terrified of dropping it, so it has a purple double 'ard case to protect it!). 

The screen is really responsive, and I have no problem with my fingers or thumbs "sticking" and getting disjointed movement. If I'm having a bad pain day, this becomes a godsend, as it only takes the lightest of touches to do what I need to. 

Considering this is quite a large phone, with a metal casing, I am really impressed with the weight. It is lighter than my previous HTC, which is a difference I really appreciate. It's not until you use something new that you recognize some minor problems with what you had previously. It may only be a small difference on paper, but when it comes to accessibility, it can really make a big difference. 

For typing, I am using the standard keyboard at the moment (there are apps for different keyboards which I may try out, but at the moment, this one is working for me). I am able to type fairly successfully with the phone in a vertical position, but on a bad day I turn it horizontally, as it makes the surface area a lot larger to type on. This is always a handy feature for people with dexterity issues. The fact that there are other apps available for keyboard input also means that if you don't get on with it, you can give something else a try. 

I am extremely fortunate that my hearing is okay, but a huge bonus from this phone is that the volume is LOUD! It has long been a joke about quiet ringtones in this house, but there is no fear of not hearing this phone ringing. It has woken me up from illness induced daytime sleep - something my doorbell couldn't manage. No more missing calls because the phone is buried in a bag - this phone was made to be heard. 

I am so so impressed with this phone. With the trend leaning towards larger phones, I was starting to worry that a new phone would end up increasing my hand problems. I needn't have worried - this phone is my Holy Grail. I don't think I've ever been this happy with a new phone- I'm yet to find a fault with it accessibility-wise (or any other area, come to think of it). I really recommend this handset for bendy folk, or people with problems affecting their hands.

A Post From My Bed

As you can see from the title of this post, I am in bed. 

Lazy mare right?!

If only. I have mega tonsilitis, and I feel like I've been hit by a truck. It started on Tuesday evening, just a bit of a scratchy throat. By Wednesday morning, I was not a well Aporia at all. Luckily the Uberman was off work, and was able to take me to the Doctor (even if he thought it was a bit bad that I went in my jamas. I didn't have the energy or strength to try and get dressed!). She took one look in my throat, said "very bad tonsilitis" and promptly loaded me up with big bad yellow antibiotics. Then typed into the computer that I have pus leaking from them. Yeuch. 

I have no voice, my ears are throbbing, my throat is so tight I am struggling to get my tablets down, I am dizzy and my body has given up on me. My legs can't support my weight at all. Yesterday I got out of bed to have some soup and watch Emmerdale with Mum and Dad (how amazing was it?! Love Emmerdale, it's got so much better under the new producer). I went to get back up out of the chair, and nope. Dad helped me up, and I slowly shuffled/staggered back to bed. With my Mum telling me I had to stay in bed again today. The way I feel, it was pretty much a foregone conclusion anyway! 

It is a strange thing, how something fairly simple like tonsilitis, can completely wipe out people with chronic conditions. My joints feel like they're on fire, and it is taking a lot of effort just to get to the loo (which is literally 3 feet away from my bed) and back. My legs feel like they're made of cotton wool, all fluffy and of no use to my body whatsoever. I am sleeping a lot too. 

I am really hoping that my antibiotics will start kicking in soon. I don't do being "ill". I am utterly repulsed by the pus running down my throat (oh yeah, I can feel and taste that *voms*). I also don't do losing my voice! At least I can type. The Uberman moved my laptop into my bedroom for me yesterday morning, so I can be connected to the outside world. Huzzah. 

So yes. I am gammy. And feeling a wee bit sorry for myself with it. Humph. 

Any good vibes for antibiotics kicking in would be greatly appreciated! 

Monday, 14 October 2013

EDS UK - Hypermobility EDS Conference 2013

This Saturday, I had the privilege and pleasure of attending the EDS UK Hypermobility Conference. 

I know very few people with EDS in real life. I have a few contacts I have made online, but not people that I have ever been able to sit and have a coffee and a chat with. So on our way to Daventry, I was a mixture of excited and apprehensive.

By the time I had been there for 15 minutes, all the apprehension had gone. We registered, and met the lovely Lara, who I have a huge amount of respect for. She is a bendy herself, but she is like a superwoman! She's really lovely, and it was a real pleasure to meet someone so inspirational. She let us know that the first two tables were reserved for wheelchair users, and off we went. I really needn't have worried. We were sat with three lovely bendies and their families, which offered great opportunity for conversation, tip swapping and story comparing. I was very impressed by the Fimo clay handles on things, shaped to the owner's hand. Very clever! 

There were talks throughout the day, all of which were hugely informative. Professor Rodney Grahame, one of the leading experts on HEDS in the UK, stepped in at late notice to cover the talk on HEDS and the Gastric system. This was something I was very keen to learn more about, as I have been having GI problems for some time, and have never got further than it being constipation due to my pain meds, and unexplained gastric reflux. I came away with a lot of notes on this one, ready to visit my GP soon. The evidence for the links was fascinating. 

This was followed by a talk on the FODMAP diet. I have undergone this diet before, and sadly, it didn't make a huge impact on my symptoms. However, I would be willing to give it another try, properly managed at another date, as others have found it incredibly helpful. 

Professor Grahame then did another talk about some of the newer findings in the ongoing research into HEDS. He is an absolute legend, and it is a true shame that he has now retired. He's been fighting our corner for a bloody long time now, and is a really lovely man. Several people were in tears during his talks. However, his replacement at UCLH, and as a chief medical advisor to EDS-UK, is looking to be an absolute firecracker. Dr Hanna Kazkaz came to the microphone for an introductory speech, and from that speech, I think our community was very encouraged. She was absolutely passionate about getting more recognition and awareness of EDS, and I truly believe she will work extremely hard to do so. 

Lara then gave a talk about the Charity, her role within it, and what we can expect from the next year at EDS-UK. She absolutely blew me away with just how much she carries on her shoulders, especially bendy shoulders at that! She mentioned local groups being set up, and that they would need volunteers. I am interested in this, but I will have to see how things go. 

There was a talk from a lady called Joanne Teague, who has written a book about her journey with Vascular EDS. Her presentation was lovely, and it was great to see that she is still here, a decade after being given two years to live. A very inspirational lady. 

I was very looking forward to the presentation by Dr Anthony Vandersteen about genetics and EDS, but sadly, the venue's projector decided it had had enough. He did a good job of winging it, but sadly it was a lot harder to follow without seeing the slides. I was able to glean some useful information from it though, which was helpful. 

The last item on the agenda was a workshop. The room was divided, and there were 4 areas - one for over 35's, one for under 35's, one for parents and one for partners. Mum and Dad shuffled off to the parents, and I wheeled in to the under 35's. Interestingly, all of the people in that group, the only males in the room were brothers, fathers and partners of girls with EDS. We went around the room, and each person there told their story. It was amazing to see how every story was so similar, and it was both heartwarming and heartbreaking in places. I was too shy to talk to people individually, but it was great to see others swapping details and getting to know each other. 

It was a long old day, which has caught up with me today (this post is brought to you from pyjamas and a slanket on the sofa!), but it was worth every ache and pain to have been there and learned so much. There is going to be a residential conference next year, and I cannot wait! 

Bendy Girl Incident: When flushing the toilet, I slipped off the handle, dislocating my thumb and two fingers. FAIL! 

Tuesday, 1 October 2013

The Monthly Round Up - September

I cannot believe how quickly time is flying by this year. It's insane to think there are less than 12 weeks to go until Christmas! Gah! Enough of the C-Word for now - here is my September!

Read: I am still shamefully not back into reading. I think this will change when Winter settles in, but for now, my reading consists of blogs and crochet patterns!

Watched: Breaking Bad. I am having serious withdrawal now it is over *sob*. Easily the greatest TV Series I have ever had the pleasure of watching. 

Listened: Volbeat - Lola Montez. Alter Bridge - Addicted to Pain. Hey!Hello! - Swimwear. Pearl Jam - Mind Your Manners. Avenged Sevenfold - Hail To The King.

Most Used Beauty Product: Fortune Cookie Soap "Capitol Diamond" body wash. Just scrummy. 

Ate: A delicious raspberry and coconut pie/cake thing. It was warm, with cream, and just so good! 

Drank: A lot of sugar free/diet drinks. I have been trying to behave with my calorie intake, and it's also helping my skin a bit.

Did: I made my first amigurumi - a little bird! He's a bit wonky, but I love him and I'm proud of him. 

Went: To Eurogamer! It was a brilliant day and I enjoyed it a lot. Especially my zombie buddies! 

Favourite New Thing: This is a tie, and I can't decide between the two, so you get a double whammy here. One is my "Heisenberg's Blue Sky" Shottle Bop pendant. The other is my new pair of jeggings, from Asda. They are insanely comfortable, and should be able to fit under my AFO when it arrives. 

Favourite Photo:

From my day at Eurogamer!

Sporadic Blogging...

Is just not cool. I apologise. 

It has been a manic few weeks. I have not had much time to think, let alone blog. I have had Legion stuff to deal with, claiming for ESA (which is an absolute bloody nightmare!), claiming for PIP (not much better!), my health hasn't been great and my old friend insomnia has decided to reappear. I'm floating around like a tit in a trance most of the time! 

I have just had one of the best weekends in a long time. I'm still paying for it with pain and exhaustion, but it was worth every minute. On Saturday, I went out to the Pub (I know right?! This is momentous!), for an evening of rocking Power Ballads. It was bloody brilliant, and I even managed a bit of zimmer bopping, in between sitting down. It was so lovely to see my friends, to dress up a bit and let my hair down. 

After a real lack of sleep, Sunday morning rolled around, bringing with it a trip to the Eurogamer Expo at Earls Court in Nodnol. It was another awesome day! I met zombies, played a bit of Batman, got a free TShirt and wristband, and I came home with a plushie Balloonicorn. Which is so awesome, I can't even think of a way to describe it! I love the fact that my mobility scooter means I can get to these sorts of things now, with a bit of forward planning. 

Yesterday was a sofa arrest and pyjama day. It was very productive too! I sorted out all of my paperwork, organised my life into a ringbinder, called DWP, prepared letters, chased up a missing Poppy Wreath... and then slumped back into brain fog. Undoubtedly though, the highlight of my Monday was Breaking Bad. 

I got to the Breaking Bad party a wee bit late, but managed to get all caught up in time to watch the Felina ep with everyone else. I had watched every ep with the Uberman, but he flew to Munich yesterday for Oktoberfest. I wasn't going to wait until Friday, and my brother's GF had caught up just in the nick of time, so we watched it together last night. We were even allowed to watch it on the big screen in the front room. I'm not going to get all into the plot - there are about eleventyeightmillion reviews online with that info - but all I can say is that the ending was perfect. I love the fact that Vince Gilligan had the ending planned, and never deviated from it, despite the phenomenal success of the series. It was spot on, perfectly complemented Walt's stories, and tied everything up beautifully. I will miss Walt/Heisenberg, Jesse and all of the characters very much. I have never been so emotionally invested into a TV series, and I don't think I have ever enjoyed one so much. It will take a big plot to fill those shoes! 

So that's the last few days in the life of this Bendy Girl. I have done so many stupid things this week that it was almost impossible to choose one, but I've gone with this:

Whilst drying my hair on Saturday, I had my hairdryer in one hand, and my brush in the other. Somehow, I managed to whack the hairdryer with my brush hand, and smack it straight into my head. It still feels a bit sore to touch! I am giggling just thinking about it.

Friday, 20 September 2013

Friday Catch Up

It's been a topsy turvy kind of week. 

On Tuesday, I saw Neurology. To be perfectly honest, it was the biggest cop out of an appointment I have EVER had. The letter from my ankle consultant had been put into my file, stating how I should be referred to the inpatient programme at the Royal National Orthopaedic Hospital, in Stanmore. Neurology man saw this, and basically refused to discuss my back any further, as they would help me there. So I am left with no sensation of needing to pee, and other things, but that is okay. It will come back eventually. Whaaaat. He also totally brushed off the information about the Tarlov Cyst that I know I have in my spinal cord, from a previous report. The symptoms of this cyst are the EXACT problems I am having. It felt like I was hitting my head against a bloody great brick wall. 

I left there incredibly distressed. My last post explained why I hated September 17th anyway, and I had a bit of a breakdown. We had some time to kill before we went to see my Nanny, and we needed to get the flowers, so Mum and I headed to Tesco. I was crying too hard to tell my Dad what had happened, so Mum did it for me. I got myself calmed down, and we headed upstairs. Straight to clothing, obviously :P. Mum decided she wanted to cheer me up, and I came away with a lovely owl scarf, a lovely cupcake scarf, and a gorgeous starry skater dress. It's a stretchy material, and I always avoid those usually, because I am a very odd shape. I tried it on though, and it fitted really nicely, so it came home with me. I love it! After that, we sat in Costa. I had a chocolate orange hot chocolate, and it was divine. As I sat there, I started getting my thoughts together, and I realised that maybe, them palming me off to Stanmore would be a very good thing - they are a very specialist team with a very good background in Ehlers-Danlos, and spinal problems. 

Wednesday morning was the turn of the GP. He gave me my choose and book paperwork for Stanmore, and we had a long chat. I am having some awful gastric problems. I won't go into too much detail on that heh, but lets just say it isn't pretty. He put it down to my meds. I understand they don't want me on these meds long term, but I wouldn't be taking them unless I absolutely had to. The decrease in dosage has left me in a lot more pain than before, but I am sticking with it - I now all these drugs aren't good for me. So he's given me some delightful Lactulose to go on with for now. We've also switched the Co-Dydramol for Paracetamol. I will be starting that at the weekend, so will report back with how that goes. With regards to the stupidly low amounts of sleep I'm getting, we didn't really get far - which now I think about it, isn't very useful. He also said I am showing classic signs of depression. Huzzah. 

Wednesday afternoon was organisation time. I had to call the DWP to arrange my migration from SSP onto ESA. I am so sad that I am not ready to go back to work yet. I also found the phone call quite embarrassing- like I was doing something wrong by claiming for it. We shall see how that goes I guess. I also went online to book my Stanmore appointment. They don't have visible appointments, but contact you within two weeks. I put in the additional comments that I was available at short notice for cancellations, so fingers crossed I hear very soon :)

I am trying to focus on the positives from the last few days. If I do manage to get onto the programme at Stanmore, I am hopeful it will be very beneficial. Particularly with my spinal problems, but with everything else as well. It is better to be under specialist care than under the care of someone who doesn't understand my condition at all. 

I thought I'd start finishing my posts with documenting stupid things I've done, or bizarre injuries I've picked up. They are almost always ridiculous, which makes them amusing. Laughter is a good medicine, so I thought I would share them with you. 

Last night, whilst calling Bingo, I managed to smack myself on the chin with the microphone. Proprioception 1 - Shelley 0.