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!
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.
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.
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!
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 :)
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!
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.
