Sunday, 2 March 2014

So, About Friday Night...

Friday 28th February is going to be etched in my memory forever. 

All thanks to my mister, 3 good friends, and a band called Black Stone Cherry. 


It was a very very special gig, and I seriously can't wait for their UK tour in the Autumn. It was different to any usual gig - there were pauses between songs where the audience could ask questions. Which was so cool! I think my favourite was the guy who asked what he should name his daughter - whilst pointing at the very expanded womb of the woman next to him. With the first song to come out from their new album being called "Me and Mary Jane", there was only ever one answer. It was so funny- we bumped into them outside and it was a case of "oh hey Mary Jane and Mum and Dad!".  They were getting that from a lot of people I think. 

As always with Black Stone Cherry, every song they played was amazing. The setlist was chosen by the fans (which I didn't even realise was going on, what a spanner!), and it was cracking. I can't even tell you how much I love this band! The venue was Koko in Camden, and I was really surprised and pleased that once the security guard had escorted me and my wheels into place, with Uberman as my carer, she let the others stay with us, which was awesome. 

Mega highlights songwise - Ghost of Floyd Collins, In My Blood, Such A Shame, Soul Creek, and probably my favourite song to hear live ever - Things My Father Said. If you read my Download Festival review, you will know that that performance had me (and many others, including band members) in tears. It's a hugely powerful song, and to hear several hundred people singing every word is spine tingling. Goosebumps and hair raising, the works. It was just amazing. 

After it had finished, my amazing security lady/bodyguard, Sandra, refused to let us go until it had cleared down a bit. This was a bit of a blessing in disguise. I feel slightly really bad, because the Uberman had gone down to the merch stand to look for a hoodie for me, and they wouldn't let him back in. I was facing forwards in my wheels, when my friends started looking at me funny - almost like I'd grown a second head. Then I felt a tap on my shoulder, and when I looked round, John Fred Young, BSC's drummer was right there! I didn't know how to react at all, I was like a cat in headlights! He was lovely, asked us about the show, and then posed for a couple of pictures with us. Minus Uberman. Whoops. Az uploaded to Facebook, and everyone assumed he had taken the picture... I really do feel bad! 

*I may also have touched his hair. It was amazing!

We finally got to make our way down, and we still had quite a wait for our taxi home, so we waited by the tour bus. Which had a parking ticket. Haha! We were down by the front, whereas everyone else had crowded around the doors waiting for the band to come out. I get a bit freaked out being in a crowd when I'm in my wheels, so waiting by the front was the best solution. At that point, the drum tech appeared - and asked us if we wanted some signed drumsticks! We couldn't say no, so we came away with those and a drum skin for Mel. 

We stayed where we were, being thoroughly entertained by a man off his tits dancing with his reflection in the door of the Purple Turtle, when Chris Robertson, BSC's singer came by and got on the bus. He looked thoroughly exhausted, I did feel for him. He came back down off the bus, and asked us if we had enjoyed the show. We replied with a big yes, and told him he looked so tired, to which he agreed, and there was kind of an unspoken thing that we wouldn't ask for photos or autographs. He was then mobbed, and we just sat back chilling. There were two American ladies by us, and all of a sudden one of them asked us whether we'd had a picture with him, or gotten an autograph. We told her no, because he just looked shattered- and she just went and grabbed him and brought him over to us. He was lovely, posed for photos, and signed my ticket. So thank you, slightly bonkers American lady, and to John Fred, Chris and the drum tech for being bloody awesome. 

Just before our cab arrived, man off his tits decided to stand behind Chris who was posing for photos and things, and yell out some BSC lyrics. In the most drunken, drugged, London trash accent ever. It was the funniest thing! I didn't get to see the look on Chris' face, but it must have been classic, because another guy just said "Welcome to London!". Hilarious.

My body is thoroughly broken (thanks to hitting the most enormous fucking pothole in the world on the way there! GAH. On the way home, the road was closed, and there were two cars minus their front wheels. That gives you some idea of just how big it was. Grrrr. I HATE POTHOLES!!!), but it was worth it for a gig that I will always remember as one of the best I've ever had the pleasure of attending. So thank you to Uberman, Mel, Az, Carl, Black Stone Cherry, Random OffHisTitsMan, Crazy American Lady and Lunatic Taxi Driver for making it a bloody brilliant night. All I want to do is rewind and do it all again!

I will leave you with some pictures!

\m/ Can it be tour time yet?! \m/ 

Thursday, 27 February 2014

Wibble Wobble, Wibble Wobble, Shelley On The Floor

I'm quite proud of that title heh.

Yesterday I wasn't at my best but I had two hospital appointments to go to, so off I went. I had the ultrasound on my thumb, and my tendons are all intact,which is grand. Yet it doesn't explain why my thumb isn't working. So follow up is March 13th. We shall see what that brings. 

After that, I had my first therapy session. Unlike standard therapy, the type I am under going is chronic pain focused, so the therapist has a real understanding of the causes of how I feel. It was my first of 8 sessions. I'm not ready to share what we talked about yet, but I may well do here in the future. 

By the time we were finished I was starting to feel very gammy. My throat was all scratchy, and my sinuses felt blocked. The cold racing round my family at a rate of knots got me. Utter bastard. As always with a cold/virus, it went straight to my ears. Last night I was alternating the wheat bag between my ears, and feeling very unwell. My balance went to who knows where, and had it not been for the Uberman and my bed rail, I would have hit the floor. Mum and Dad had popped out to Lidl, so bought me back a little pot of Ben and Jerry's for my throat. We watched some Archer and then I had a fairly horrible night. 

This morning I got up, ready to come and get into my nest. I stood up, felt a bit chesty but my ears didn't hurt, huzzah! I made my way with my frame into the front room, where my nest was waiting. I leave it reclined as it's in such a comfortable position. I moved my frame to get ready to sit, and then all of a sudden I was sat on the floor, my ribs whacked against the reclined leg area of the chair, and subluxed the same hip I dislocated yesterday. I'm not going to lie, I cried like a little girl before getting myself up and into my nest. I have had a very very quiet day since, and am determined to feel better tomorrow. Tomorrow is a VERY EXCITING DAY. I am off to see one of my favourite bands, Black Stone Cherry. No cold or virus is going to stop me being there - even if it means I spend the rest of the weekend flared and poorly. I am taking Betsy Blue Wheels, and going with the Uberman, Mel and Carl. We're travelling by cab, because frankly,the majority of the London Underground is chuffing useless for disabled passengers. Particularly the Camden area, which is always so busy. Either way, I am a very excited Aporia. 2 hours and 45 minutes of Black Stone Cherry, fan selected setlist, some new material and Q&A's. Woooop!

Tomorrow is also a slightly worrying day, as my Mum is having an operation on her wrist (bra doing up and undoing is going to be hilarious, her wrist will be casted and my thumb doesn't work!). So any good wishes for her would be greatly appreciated. She's been having problems with it for a very long time (as a result of an injury when she was younger than I am now), so I really hope this helps her. It's a day surgery, so hopefully she'll be home before I leave. I'll feel much better about going to BSC knowing she's okay.

So now I'm signing out. My plan is to have some nice warm porridge for dinner, have a nice hot shower, watch some Castle (I've just gotten into Castle, LOVE it!) and get an early night, which will hopefully kick this virus in the arse, and help with the added pain from stacking it earlier. 

Tip of the day: don't fall on a recliner. Ow. 

Monday, 24 February 2014

LBLC: Three Things That Made Me Happy Today


Last night, the lovely Louise from the LBLC decided that it would be a nice idea to take a moment today to blog about 3 things that have made us happy. It's been a strange day today, so mine may sound a little bit weird, but they made me happy all the same. 

1. My Dad was off sick from work today (told you they would sound a little weird haha!). Although he was poorly, and I am headed the same way, it was so lovely to have company. We watched Dark Shadows, which I was surprised he even chose to watch, let alone like! Then we put Snow White and The Huntsman on, and I fell asleep. Whoops. It was nice though. 

2. My new Skullcandy headphones are amazing. I'm cheating a wee bit with this one, as I bought them last week, but was using them at 2am (which is today!), and the quality is fab. 

3. I have some lovely lovely friends. To CY, KT, LL, KH, RO'B, SK and AH, thank you for listening to my ramblings and ravings. You all help to keep me afloat, and I am so grateful for you all. 

So there are my three happies of the day. As this is a happy post, everything else today is irrelevant. 

If you have three happies you want to share, please link me to them - I'd love to have a read :)

Tuesday, 18 February 2014

A Little Update

It will be little this time, I promise!

I now have a new splint for my hand, a thumb spika. My fingers are free, huzzah! 8 days until scan day. The lovely ladies at Hand Therapy have given me Oval-8 splints for my pinkie, ring and middle fingers on both hands, as the hyperextension shocked them a bit. So far they seem to be really helping, but they aren't pretty at all haha! I'm planning to try and jazz them up a bit with nail polish and gems haha!

My neck is still unfunky. The time has flown by! I'm back sleeping in my bed now, because I missed my electric blanket and also I can be just as uncomfortable out there as I was in here on the sofa!

There is a whole shitstorm going down with my local council and ATOS right now. I'm reluctant to go into details, but thankful that I have a local councillor and also my local MP on my side. I was so angry yesterday that I dropped the C-Bomb in front of my Mum. Whoops. I apologised for saying it in front of her, but not for saying it, as I meant it. REALLY meant it. 

I'm starting to plan what I'm going to do for EDS Awareness Month this year. If anyone has any ideas, please leave me a comment, as I'm a bit stumped!

Saturday, 15 February 2014

I Broke Myself. Again.

G'day dingos! (not sure why I said that, but I like it, so it can stay.)

So as you can tell from the title of this post, I haven't had the best of weeks. It started with a reflux attack on Friday 7th. I woke up choking, and it irritated my lungs a bit. On Sunday, whilst rolling around B&M on my Betsy Blue Wheels (my electric wheelchair, I LOVE her!), I had a massive coughing fit, and felt a click in my neck. I started to feel quite unfunky, and when I got home, I went straight to sleep. This should have triggered the warning bells, as when I hurt myself badly, my body reacts by shutting down. I was woken up for dinner, then not long after I went back to bed. Still oblivious as to what was happening, other than my neck being sore from the click.

I woke up on Monday morning and all hell broke loose. I was in a ridiculous amount of pain, and the slightest turn of my neck sent an agonising pain rushing through the back of my head, and blurring my vision. I spent the day in my onesie, with my Gryffindor scarf wrapped around it to keep it warm. At about 3pm I went back to bed, to try and see if I could sleep it off, to no avail. After being ranted at by my mum and brother, I agreed they could call 111, hoping they would send a doctor out to me. Instead, I got an ambulance. Oh joy. 

The paramedics were absolutely lovely, did some quick research on EDS and helped me as best they could. Thankfully, they didn't feel the need to put me on a spinal board (I bloody hate those things!), so they wheeled me out, accompanied with a canister of Entonox and my Mum. You know how they write all the info on their gloves? Lady paramedic literally ran out of room on them by the time I'd finished giving her all of my health problems, meds and the problem I was experiencing. That amused me a bit. 

I was transferred into a cubicle at A&E, and given more Entonox. After about an hour and a half, a nurse came to do my observations, and said she would get me some morphine. Another half hour later, she arrived with codeine. I really didn't care what they gave me to be perfectly honest, I was most worried about the pressure building in my head and the blurred vision. Finally a doctor arrived. He tried to blag that he knew about EDS, but it was absolutely blatant that he had no idea. He came back another 45 minutes or so later, saying he had spoken to the consultant and that I had a severe case of spasmodic torticollis resulting from a bad sprain to my neck. He also told me that EDS would have no effect on vertebrae. HA. Shows just how little he actually knows about it. A hefty dose of diazepam later, plus a recommendation that I was sent to the pain clinic for medication review, and that I needed to see my GP within the next two days, I was allowed to go home. 

It has been an extremely uncomfortable few days to say the least. I spoke to my GP on the phone, and he prescribed diazepam, but as yet there has been no improvement. I had a horrible incident where my head turned in my sleep, which caused pain so intense I woke up and cried for an hour. I don't like crying, so I know it's bad when I do. 

I was booked in to see my GP yesterday anyway, so off I went. He had a feel around my neck, said I had narrowly avoided being sent back to the hospital, and upped my diazepam. He basically said that the pain clinic was pointless, they would just mess around with my usual meds which would be of no benefit to me. I mentioned the research I had done in to upright MRI scans, and he agreed to refer me back to neurology with the aim being a referral to one of the clinics in London which does them. So fingers crossed there. 

Obviously this further setback has not helped my mental state, and I am really struggling. However I am going to be seeing the pain focused psychologist at Greenacres, which will hopefully help.

I find it incredibly ironic that my third ride in an ambulance came exactly a year and 6 days since my last one. The time has gone so quickly, and I am no further on - in fact, I am worse than before. I just hope that I will finally get some answers soon. In the meantime, I will leave you with a couple of selfies I took in A&E (I don't remember taking them haha!) to chuckle at. 

Yes, I went in my Zebra onesie. They still didn't get it.

Wednesday, 5 February 2014

Not The Happiest Of Updates

Hello Everyone.

Firstly, I apologise in advance, as this is likely to be a long and rambly post, and not a hugely positive one. Sometimes it's just hard to be positive about a chronic illness. 

The truth is, I haven't been feeling anywhere close to positive for some time. I have had so many kicks when I'm down for the last year in particular. Every time I thought I had taken a step forward, along came something to kick me back by 3 or 4 steps. It's been really hard to deal with.

A couple of years ago I had some CBT and relaxation therapy, which was not perfect for me by any means, but I did take some useful stuff away from it. So when things have seemed dark, I've employed those and been able to lift myself back up. 

Around the time I found out that nobody was helping with my back, that my feet were effectively useless, and that my goal of going to RNOH in Stanmore was temporarily (still is!) blocked off, I felt like a huge, heavy black blanket had draped itself over my head and shoulders, and no matter what I did, I couldn't lift it. None of my CBT techniques were working. So it was a case of putting on a brave face (a mask, I guess) when I was around others, making everything look fine. Inside, I was in total limbo. The world was rotating around me but I was stood dead still in the middle, locked in with my feelings which I just couldn't get rid of. 

Christmas and New Year came, which lifted me a bit. All too soon they were gone though, and then I hurt my hand. That seemed to be the straw that broke the camel's back, and I realised that I couldn't keep on like I was. I have to stress that at no point have I ever felt suicidal, or like I was going to self harm. I just feel like a big useless lump who feels indescribably guilty about how my life impacts on those around me. Some words intended to be nothing more than a simple statement have really hit my self esteem hard, and the blunt truth is, I truly hate myself right now. 

I went to see my GP, who is a lovely lovely man, and told him everything. He had asked me on previous appointments how I was doing, and I had pretended everything was fine. It clearly wasn't, so he wasn't surprised when I finally admitted it - he said he had seen it for himself. So maybe my mask wasn't as good as I thought it was after all. 

He has put me onto Fluoxetine (aka Prozac), and I have a diagnosis of severe depression. On the 14th Feb we will be reviewing how I am, and looking at a referral to speak to someone who specializes in depression caused by chronic pain. When I spoke to my physio yesterday, she told me she knew of a brilliant guy based at the hospital, and she was going to liaise with my GP about referring me to him. (Something positive, finally!)

I wanted to post this to try and give me somewhere to write it down and get it out there. I don't have to hide it anymore, and with the help of my LBLC ladies, I have realised that it isn't something to be ashamed of. I am not going to say I feel instantly better, because I don't. I know full well this isn't going to be a short term thing. But I know that there are things and people there to help me. So I'm taking my first step down my own zebra brick road, and who knows where it will lead. 

Tuesday, 4 February 2014

A Much Needed Overhaul


As you can see, I've given my little space on the internet a bit of a freshen up. The black was all a bit too much, and I've tried to make it a bit more accessible. If anyone has any problems reading, please let me know! 

An update on all things Aporia will be hitting the internet tomorrow. It's going to be a long one. You have been warned haha! 

Monday, 27 January 2014

So... It's Been A While!

I apologise for a long absence. The main reason for this is that on the 4th January, I had a freak accident and have done some damage to my hand. I lasted 5 whole days into 2014 before having to visit A&E. A new record! Humph. I now have a moulded thermoplastic splint which has support for my index and middle fingers, and a Spika support for my thumb. My fingers have regained movement, which is great, but my thumb is in a very sorry state. I am waiting for an ultrasound scan on it, to take a look at all the soft tissue and also the joint itself. I got the appointment letter today, and it is for the 26th of February. It feels like forever away! 

You don't realise just how important your dominant hand is until you can't use it. I can't grip at all at the moment. Bras are utterly impossible, as are cans of drink, or any packets that need to be opened. It also means I can't crochet. Or play my lovely Xbox that I got for Christmas. *cries*. Which means I am terribly terribly bored. I am going to start a jigsaw I think.

So yes. After a really lovely Christmas (technically Christmases, I got to enjoy one at home, then an extra two with the Uberman's family, as some were there on the day, and then some more came over on Boxing Day!), January has been fairy unpleasant to me so far. My back has been misbehaving terribly, and I am currently waiting for a prescription of Diazepam after a particularly violent sublux at the weekend sent my muscles into spasm. Unimpressed doesn't cut it, I am thoroughly fed up. 

I will be back soon, hopefully with a more positive post. It hurts my hand a lot to type, but I'm going to set up some speech recognition software to try and help with that :)