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. 

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!

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.

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. 

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. 

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*

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! 

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! 

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. 

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...

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.

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!

Me and My HulkFoot™

Hello Everyone! 

Well, today was the day I got the results of my SPECT/CT Scan, and learned what the next step would be for HulkFoot™ and I. 

Since I last saw my consultant, I have injured my knee as a result of HulkFoot™'s chronic instability and inability to hold me up. This in turn is causing my back condition to become aggravated. Joy. 

This morning, I felt sick with nerves. My appointment was scheduled for 9.00, and by 9.30 my poor fingers were sore from all of the wringing I had put them through. I literally could not keep them still! 

The images from the SPECT/CT are very pretty things. They are lovely and colourful - much more interesting than the usual MRI and XRay black and white! There was a three page essay report back, which always fills you with confidence. Then there is the  "there is good news and bad news" line comes tumbling out. 

The good news is, I will not be operated on any further. Huzzah! 

The bad news is, the reason they won't operate is that it would make no improvement whatsoever to the state of HulkFoot™. 

In the images, there was a large white splodge where the main part of my foot is. I asked what each of the colours meant, and white means very unhappy, inflamed and painful. It had been anticipated that the area of pain would be the major ligaments, so this was not expected at all. Interestingly, it showed the same issue in my left foot. 

Each and every one of the tiny connective tissues in the main structure of my foot is pretty much useless. My bones have been taking all of the impact with every movement that I take, and now they're pissed off about it! They are angry, swollen and want me to know about it. Hence HulkFoot™ and it's gargantuan size, and why LeftNotQuiteAHulkFootYet™ has also started to swell and get a bit on the sore side. 

There is no cure for this. It's a part of my EDS which has manifested itself, and it is a case of management rather than repair. I have been referred to a member of the Physio team who has an interest in EDS and connective tissue disorders, with (hopefully!) a view to having some more Hydrotherapy as part of the programme. I have also been referred to the Orthotics team to get some custom made Ankle-Foot Orthoses made. I also have to lose some weight. A fair bit of weight. This is a good thing to focus on, so I will be setting a target and updating here with my progress.

Possibly the most exciting development of the day is that my consultant trained at the Royal National Orthopaedic Hospital in Stanmore. If any bendies are reading this, they may already be aware, that the RNOH offer a 3 week residential rehabilitation course. Specialist physiotherapy, hydrotherapy, and retraining in areas that bendy people don't necessarily do correctly. He has written to my GP to request I am referred there, as I am a suitable candidate. Fingers very crossed that I will be accepted! 

So, as of 6/8/2013, a new path has opened up for me. I'm not sure yet what it holds, and I'm certain it won't be easy. But I've taken my first step/hop/roll on it. 

Hospital - Fiasco Followed By Faith

Hello!

Well today's hospital visit was an eventful one. 

We got there nice and early (after the last visit where the car park was so full that we got in over half an hour late!). The hospital is having a bit of an upgrade (not sure if that's the right word, you can't polish a turd and all that...), and the usual clinic is currently a building site, so today it was being held in the private suite. I thought that would be quite exciting, but it was equally as shit as the main hospital! 

As soon as we got there, the nurse informed us the clinic was already an hour behind. Oh joy of joys. The room was also RAMMED with people. So much so, that the nurses asked people to move into the corridor because of a fire risk. I suspect they may have recently had a smacked wrist, because another nurse then came and said it was a fire risk for them to be in the corridor! 

Time ticked by, and when it hit 12.30 (2 hours past appt time!), I asked when I would be seen. I was told one person was in front of me. Two people were then seen, and at 13.00, I was finally called. Huzzah right?

WRONG. 

I was wheeled into the room to see the consultant. He saw me in Feb for my suspected Cauda-Equina, and asked how I was getting on with my back. We chatted a bit about that, and then my fetching splint (which I then told him was about as much use as a chocolate teapot!). Then he asked the Sister if she "had chased it up yet?". I thought it was a bit odd. She answered yes in the most unconvincing manner ever. He then asked if she was sure several times, and she then buckled and said no.

My MRI report was MISSING. The entire reason for my appointment was not in my paper or electronic file. And I was not the only patient from today with that problem. 

The consultant was very apologetic, and explained that he was liaising with a radiographer at the other hospital in the Trust to get it done in the next hour, as the dictated version was in their systems. Said to go for lunch, and he would see me in an hour at his afternoon fracture clinic. So off we toddled for lunch (which actually wasn't horrendous, minced beef and onion pie with chips), then back to fracture clinic. 

I got in to see him, and waited a wee while for him to go through the report. He came in, and said I was a "complex and challenging case". He had a bit of a feel around the ankle and foot, then dropped the bomb on me that the surgeon who did my first op had not repaired the ligament as he said he had - he's taken another bit of tissue and pulled it down instead! Whaaaat?! He mentioned fusion - which he said he was not willing to do lightly due to my age. At that point I told him that I would do it if it meant no more instability in my ankle, and it's subsequent effects on my knee, hip and back. I think he realised then that I was serious, and mentioned two other possible options - a rerun of my last operation, but heavily modified, and another op which would involve donor tissue being bolted into place to strengthen my ankle. 

But he then explained that he was not happy to conduct any surgery to correct the instability without finding the cause for the pain first - he wanted to tackle both together. I can appreciate that. 

So my next step is going to a hospital in London for a SPECT CT Scan. I will be injected with a radioactive isotope and the scan will put together a complete image of my ankle so we know exactly what is going on. Once I get those results, it will most likely be surgery. I have faith in this consultant, that he will do his very best for me. 

I finally got home at 15.00. From a 10.30 appointment.

So I am still in total limbo with my future. My job is hanging in the balance. I am still unable to walk without a frame. I am still relying on a wheelchair for anything outside of a household environment. And my knee has now given up in sympathy with my foot.

And I am under bed/sofa arrest until Thursday. I am exhausted and no use to anyone or anything. After I've seen Gold Rush, I will be decamping to my bed. And staying there until I have the energy to move again.