Tomorrow...

Is going to be a tough day.

September 17th is probably the worst date of my year. In 2004, on that date, I lost my beautiful and wonderful Nanny.

         I love this picture. Stunning!           This was her 60th Birthday. Woolly Hat and Bus Pass!

Living next door (numerically, but separated by a crossroad) meant I saw her almost everyday. Even if it was just a wave through the window as I walked past on my way home from school. I can't tell you just how much I miss her.

Thankfully, it wasn't long from her diagnosis until she left us. Most of that time, she was sleeping. I remember how the hospital let me come up to see her after my shift at Woolworths, to say my goodbyes. It was way past visiting time, but they didn't mind. She left us two days later.

Cancer is a cruel and vicious disease. It doesn't discriminate. I am not a religious person, so rather than pray, I hope and wish that one day, a cure is found. 

Tomorrow, as well as going to give my Nanny her flowers, I will be at the hospital. I am seeing the Neurologist for the results of my Spinal MRI. I mentioned in an earlier post how I read a copy of the letter sent from the Spinal Diagnostic Team to my GP, requesting my referral to Neurology. I decided to research one of the things noted from my original scans, and was utterly gobsmacked to learn that not only is it common in patients with EDS, it also explains all of the symptoms I have had since I injured my back in February. 

I will do a detailed post on it after I have seen the Neurologist. I am going to take my research with me, as these things can sometimes be overlooked. I am not going to lie, I'm a tad scared. My life has been totally changed since February, and there is a chance I won't get back to where I was. I guess I will have to see what they say, and choose my path from there. I haven't been sleeping at all well for the last two weeks, and I think tonight could be my worst night yet. I distracted myself with a jigsaw earlier, and I painted my nails a little while ago, but I'm all out of distractions now. Gah. 

So yes. Tomorrow is not going to be a happy day. I honestly can't wait for it to be over. Although, the Uberman is coming over tomorrow evening, and we're going to watch some Breaking Bad. We've almost caught up now... it's getting a bit tense! 

Over and out for now...

Autumn Leaves, When The Grass Is Jewelled...

Autumn has officially arrived today.

It's strange, the things you can remember from your childhood, and how you attach them to something. The title of this post is from a song we used to sing at my primary school. As soon as the first leaves fall from the trees, it pops into my head, and it stays there until the last leaf has fallen. 

I must confess, I am sad that Summer is leaving us. I will miss the warmth, the sunshine, the tinkling of the ice cream vans, the sound of ice cubes in drinks, the smell of barbecues, and most of all, the sun shining until late into the evening. 

There are things about Autumn that I do like. The crunch of the leaves is a lovely sound. The oranges and reds as they get ready to drop can be stunning, almost like a blaze. The smell of a barbecue is switched for the smell of bonfire, which I love (but hate the smell of it getting into my hair!). The conkers falling from the trees remind me of a family tradition. On my Auntie Sue's birthday, we used to all go across to the trees opposite her house, standing in the trench between the road and the field, getting as many as we could. Then it was back to the house to get warm, eat pizza and have some cake. Another memory which comes flooding back when Autumn is mentioned. 

I am quite a cold person, so I own lots of lovely warm jumpers and jumper dresses. I love being snuggled up inside, with a hot chocolate, keeping the weather locked firmly outside. Damp does not make my joints happy, so being warm and dry is my priority. My slanket is my best friend in Autumn, and shares that role with my duvet in Winter (I am actually shuddering at the thought of Winter!). I love being cosy, but also being able to do things because my arms are still warm. Whoever invented them is an utter genius.

When the clocks change, a real sense of sadness hits me. I hate that there is so much darkness. That the Sun and Moon switch places so soon. Daylight disappears in what seems like such a small time. I guess I should be grateful that I don't live in a place where they hardly get light at all! I would not be a good eskimo. For me, the darkness feels oppressive, and I am counting down the days until the daylight holds it's own again.  

The main reason I don't like Autumn is it means that Winter Is Coming. However, this year I am going to try to appreciate Autumn's good bits, because they are there. Crackling, burning and blazing away. A post on Winter will follow - but only when it arrives.

Talk to me about Autumn - like, love, dislike or loathe? I fall into a space between like and dislike. I can't honestly decide for definite.

Time To Be Honest

As I promised in my last post, here is an update from the last few weeks of me. I have decided to be totally honest and frank about things.

After being told that my feet were both very damaged due to the majority of my connective tissue in there being effectively useless, I kind of floated along in a little bubble, not reacting at all to what I was told. 

The things which were put into place following my discharge from the surgeons have started happening. I have begun physio with the loveliest lady, who is the first I have seen who completely understands that the EDS affects everywhere. This is almost miraculous at my local hospital! She is going to treat me as a whole person, step by step. We've set a plan in place to get me strong enough to start hydrotherapy, so I have a goal to reach. 

This week, I go to meet the orthotist to be measured and prepped for my Ankle-Foot Orthosis. Should be interesting. Then they'll go away and make it (as I understand it anyway), and in a few weeks time, I go back to get it fitted. It will need a name when it arrives, but I guess I won't know what to call it until I see it. 

Alongside these things, I've been having real problems with my knee and back. The MRI scans really knocked seven bells out of me. You don't really think that something as simple as lying still in a big tube is going to cause problems for over a week. It does for a bendy. Since I hurt my back it has been incredibly painful to lay on whilst I'm straight, so being unable to move for almost 70 minutes left me in complete agony. I was just starting to get over that...

And WHAM. One simple stretch out from being tired and I am in so much pain. I can't think straight. This is taking so much thought and time and effort to type out. I can't get comfortable sitting, I can't get comfortable to sleep... I'm running on empty. Not being able to weight bear on my knee is making movement so very hard. I have zero spoons left after a hop from my bedroom to the sofa. Every single slight movement sends pain screeching through me. A simple cough or sneeze leaves me ready to cry. I am at break point. 

I also spent Saturday morning researching something that was noted on the letter sent to my GP from the Spinal Diagnostic team, and cc'ed to me. I am still utterly gobsmacked. It totally explains every last one of my symptoms, has established links with EDS and connective tissue disorders... but it has been totally ignored by the hospital. I am going armed with as much information as I can to my next neurology appointment, to try and find out why it hasn't been followed up. 

I don't like having to let all of this out, but if I don't, I think I'm going to go crazy. I feel like I'm dragging everyone around me down, which I hate. I know that people are in far worse positions than I am, and I should be grateful for that, but at the moment, I just can't keep the brave face on. Everything just seems so shitty, and I don't really know what I can do to make it better. I feel bad that everyone around me can see I'm struggling, and can see how miserable I am. I can only imagine what it feels like for them to see, which makes me feel so guilty when things are bad like this. I just can't seem to pull myself together. 

If there are any bendy people, or fellow spoonies reading this, who could offer me some advice on how to get smiling again, I would love to hear from you. I am sure there must be light somewhere. I just need to find it.

The Monthly Round Up - August

Hello Everyone!

This month has flown past so bloody quickly! I saw Keshia's post and was promptly reminded that I needed to get this done. And also get blogging more! I will follow this post with an update on everything. I promise. 

Read: Again I have had another month without any real reading material. I've been reading through blogs, reading reviews, leafing through crochet books, but that's it really. I usually read more in the winter months, so this bullet point should get a bit more interesting soon!

Watched: Breaking Bad. The same as last month I know, but I am totally addicted to it! We're just about to hit Season 5, so all being well we should be up to date before the final episode hits the UK. Jesse and Walter have invaded my life!

Listened: Team Rock Radio. It launched at Download this year, and it's really good. I've grown pretty sick of daytime TV, but Bird loves to see a picture on the TV. TRR is a great solution - music I like plus something to keep him quiet! They play some awesome stuff. 

Most Used Beauty Product: I have been on a using it up splurge, and I'm working my way through a Lush Happy Blooming Jelly. It was a forum special last year, and it was truly lovely. It reminds me of days when I thought Lush were the best thing since sliced bread. Turns out they aren't! Still, the jelly is lovely, leaves my skin soft and smelling yummy.

Ate: The Uberman made a gorgeous cake for our Bank Holiday BBQ. He has a set of pans which turn the filling of the cake into a heart shape, so each time you cut a slice, it has a heart in the middle. It was a red velvet cake with extra thick fresh cream in the middle. Absolutely delicious! 

Drank: Cherry 7Up. Beautiful stuff :)

Did: I finished the blanket! Wooohooo! 

Went: I went to DASH last week, a service for disabled people in my local borough, to get help filling in my Personal Independence Payment form. It has been posted now, so fingers crossed it goes okay.

Favourite New Thing: My new bed. Being stuck downstairs has meant a single bed, and my Uberman staying on a fold out bed. A couple of weeks ago, we ordered a new bed, which comes with a guest bed that comes up to the same level as the main bed. It folds down and rolls underneath too, taking up far less space. Means snuggle time again, yay :)

Favourite Photo:

Finished Blanket! Woooop!

Seven Deadly Sins, Aporia Style

Hello Everyone!

It's time for another LBLC joint post - long overdue in fact!

Keshia came up with the idea for this post - to tell you all about our Seven Deadly Sins. An awesome topic. So without further ado...

Pride

I am incredibly proud of my first ever crochet project. I picked up a hook at the beginning of the year, as a trial to see whether it would help to keep my hands and fingers active and stop them seizing. I was quite surprised at how quickly I picked the basics up, and when my Mum asked me to make her a blanket, I threw myself into it. It has kept me active but does cause some pain after a while, so it has taken me the best part of 6-8 months to complete. But I have completed it. My Mum loves it, and has taken it away with her for her camping trip at the Great Dorset Steam Fair this week. I am incredibly proud that I took on quite a mammoth task for my first project, and it didn't beat me! 

Envy

I am envious of absolutely everybody who is currently in Weymouth. I've mentioned this far too many times on this blog, but it is my happy place, and I would love to be there every waking minute of my life. It holds many happy memories for me, and I hope that one day it will hold many more. 

Wrath

I thought a lot about this one. I get angry at a lot of things, some trivial, some more serious. Which should I put here? I think one of each.

Trivial - People emptying crisp packets into their mouth. It just triggers something in my brain which really makes me irrationally angry!

Serious - Since becoming more incapacitated by my EDS, I have been granted a Blue Badge by the local council. When I turn up to my local GP Surgery, and see a car parked in the disabled bay with NO badge displayed, I get incredibly angry. The lack of parking there means that if I cannot get in the disabled bay, I need to park over the road, which is not a distance I am able to travel. The disabled spaces are for BLUE BADGE HOLDERS. Not for someone who just feels like parking there because they don't want to park across the road. By doing that, you are making an already difficult life more challenging. Don't be a prat. Think about why those spaces are there, and how so many of the people who use them would give anything to be able to park across the road and walk into somewhere without a care in the world. 

Sloth

I am absolutely awful at putting clean clothes away. It is a horrible habit, and one I really need to get out of. They are piled on my bed, I move the pile to somewhere else so I can get into bed... then I grab them off of the pile. My Mum has attempted to counteract this by getting me some plastic storage for my downstairs room (I haven't been able to get upstairs since Feb), and arranging it all by section. I have been good so far. I must not be lazy!

Lust

I have always wanted a black diamond ring. Like this one. 

Avarice

Cosmetics. Nail Polish in particular. I have an insane amount of it! There are so many pretties! 

Maybe wool too. My stash is quite impressive!

Gluttony

Lucky Charms cereal. Oh I cannot get enough of this stuff. It's sooo good. I'm so pleased it's becoming more available in the UK again, as the prices are coming down a bit. It's just awesome. I like to eat the cereal bits first, then have all the charms at the end. Yum!

So there you have it - the Seven Deadly Sins of Aporia. Make sure you check out the sins of Keshia, Karen, Rach and Louise!

I'm Baaaaack

Hello Everyone!

I apologize for my absence. Bad Blogger. 

However, it can be explained...

My first ever crochet project is finished! Mum loves it, and I love that she loves it. 8 Months of love and work have gone into it, and I hope she enjoys being cosy in it! 

Next project is to create an amigurumi Pokemon, for my brother's lovely GF. They went to Japan, and whilst there they visited the Pokemon Center. She only wanted Jigglypuff, and they didn't have one there. I showed her a crochet one, and she wants one of those instead. So Jigglypuff will be my second ever project, and my first amigurumi! Fingers crossed it goes well :)

Other than being very busy beavering away at the blanket, I have been at the hospital quite a bit. A half an hour physio slot was not enough to even get all my medical gubbins written down (!), so I have an hour appointment tomorrow.  Eep. I have also had my spine and knee MRI scanned this week. I am suffering quite a bit from that. An hour in a scanner in a not-particularly-comfortable position is not good for a Bendy Girl. Or Bendy Boy, I presume. 

I have had some nice adventures too.

Last weekend, I went to Wittering for the day. The weather was a bit on the naff side, but I find being by the sea oddly soothing. Wittering has changed a lot since I was small. The arcade has gone. GONE. That is a big shocker. I have always associated the seaside with sea, beach, ice cream and arcades! Many hours have been spent feeding the 2p machines. I have a whopping great chain full of 2p machine keyrings! 

I wanted to take a look in the haberdashery shop whilst we were there, and inside was the most beautiful Golden Retriever. I was on my scooter, and didn't want to run her over, so I stopped and waited. She looked at me, then her owner whistled to her. The next thing I heard was "Come on Shelley". I was completely confused, as the dog then got up and wandered over to her! I giggled a bit with the owner over the name, then rolled down to look at the yarn. All of a sudden, I felt a cold nose on my hand. I looked down, and she was sat right next to me, looking up at me as if to say "please be my friend". So I obliged, naturally, with lots of ear scratches and strokes. I got a friendly hand kiss from her, and she laid down with her head on the base of my scooter like she didn't want me to go. I didn't want to go either! She was the sort of dog who you'd curl up with on a sofa on a rainy day, to watch TV, and she'd sit with you all day. Totally adorable. I was genuinely sad when I left her. 

Earlier on in the week, my Auntie came over to take me out of the house for a while. We decided to take a visit to the Dog's Trust in Harefield. We had a lovely stroll (roll in my case!) around looking at all the lovely dogs up for adoption. I only wish I could have adopted one or more! The two who barked at my wheels, however, probably weren't companion material. Bless them! We both fell in love with a gorgeous older gentleman pooch called Max. We loved him so much, that when we went up to the Tea Rooms, we sat at his table! They do amazing light food there - we had cheese and ham toasted sandwiches and they were absolutely loaded with filling and incredibly tasty. I can definitely recommend it there - only get there early, to make sure you get to try cake! It was all sold out by the time we went to order! 

So there has been some niceness to take the sting out of the nastiness that has been going on in the land of this Bendy Girl. Just got to keep plodding on!

Hope everyone reading this is well and that things are shiny!

The Monthly Round Up - July

Hello Everyone!

Firstly, this round up will be different in format from June's one, as my laptop Ruby was wiped to try and rid it of the nasty virus. It has been repaired (huzzah to Dr Bro and Dr Dad!), but all my old files are not yet transferred back over. Next month will be service resumed!

Secondly, this is spectacularly late. Whoops! I apologize for this, but I have been working bloody hard on my crochet project. It is onto the final stage now, hooray! 

So without further ado, here is my monthly round up for July!

Read: Reviews. Many reviews. I have not really been reading books recently, probably due to my crocheting!

Watched: Breaking Bad. It took me a while to jump on the Walter White bandwagon, but I am ADDICTED. Upto series 3, yay Netflix!

Listened: I lost all my music when Ruby went down, so not much during the day, but I've been listening to Kerrang Radio when I'm in bed. 

Most Used Beauty Product: Fortune Cookie Soap Whipped Creams again! Can't get enough of them. 

Ate: Barbeque. Thanks to the stunning weather! 

Drank: Dr Pepper. Ice cold. Mmmm... What's the worst that can happen?

Did: LOTS of crocheting. 

Went: To hospitals quite a bit. More importantly, to finally see Bon Jovi, in Hyde Park. Amazing!

Favourite New Thing: My Sugar Skull earrings, from Punky Pins. A surprise present from the Uberman, who is now extremely proud of his ninja boyfriend skills!

Favourite Photo: 

All but one of the blanket squares laid out ready for edging! This photo is to show me which order I need to stitch them together in :)