I don’t go in for end of the year musings, but this year has been a bit of a bitch so I’m going to allow myself this one.
January started as usual with my birthday. I’d been after a ukulele for months and my lovely uke arrived new years eve. Part of my hankering for a smaller string instrument was that my hands were getting sore playing my guitar which meant that I picked it up less and less. No one really knew why my hands were sore, but the GP had identified osteoarthritis and prescribed hand supports.
* video link *
My back & SI had been playing up yet again since November and after more unfruitful visits to my GP who told me that my hips & hands couldn’t possibly hurt that much and that chest pain wasn’t a problem, I threw the private medical insurance card at them. Within a week, the referral was done.
I had yet another MRI that showed very little aside from further degeneration of my lumbar discs (L4 & 5 are now entirely black) and some curving. The consultant checked what my insurance covered and suggested facet joint injections & simular in my pelvis. We discussed the other pains and weird symptoms, but he was convinced that it was just early onset disc degeneration. At least he wasn’t calling me a drug seeker…
Knowing that I’d be out for a few days, we set up the bedroom with wide-screen World of Warcraft (and Google Classroom ).
February meant that the operation came and went and 2-3 days of taking it easy became 2 -3 weeks of excruciating pain & swelling from a reaction to hydrocortisone and a lack of healing from the injection sites. I got irritable online and a friend suggested that all this pain and injury might be EDS. I laughed it off as I wasn’t in that much pain (aside from daily opiates and walking with crutches at least once a month and a stick moreso… but it’s easy to underplay what became normal after dislocating my pelvis in 2012).
Physio after the treatment was short & sweet and suggestions were made about more injections (nope) or fusing the vertebrae. I wasn’t keen on the grounds that no one wanted to listen about the other pain as it wasn’t covered by the insurance & I didn’t want to be operated on by people purely motivated by money.
1 simple canular = a whole hand of bruise!
February was also Valentines Day and I topped our nerdy gifts this year with a tshirt sporting both of our WoW characters. Funnily enough, that tshirt has been missing ever since this photo… as has that terrifying beast on Mr Geek’s face.
March saw a birthday for TinyPants celebrated in style with the Gypsytree family. There was a fair certainty that this would be the last one as D had moved across the water a few weeks before.
March also contained a trip to London to the Rezzed games convention where I walked stick free but not so much pain free. A fair portion of the day was spent identifying games playable on seats, subconciously conserving spoons. I did however, get to meet the guys from Introversion again and play the nearly out of Beta version of Prison Architect which we’d bought into in the super early alpha stages. It’s now out and was so utterly worth the wait!
This man here is my indie gaming hero.
April was the first time this year that I conceded the use of a wheelchair. We’d driven to Holland to visit family and I was using crutches to hobble about as my pelvis was wonky & my back hurt. By that point, the strange neck to eye headaches had started in force rather than just once a month or so.
We visited Efteling and Apenheul which even 8 months later, the girls still rave about. It has to be said the parental alarm system of seeing a monkey jump onto your daughter is truly messed up after visiting Apenheul as they run free with no cages, or barriers other than liking the idea of regular feeding.
I also continued my ukulele adventures whilst being “helped” by TinyPants. What I didn’t notice was that I was spending more and more time “on bed”. We’d go upstairs as it was more comfortable for me, or I was tired and wanted to rest shortly after the girls went to bed. My time on WoW was also declining as holding the mouse was starting to hurt my hand more than I cared to admit.
May brought us some surprise visitors that made everyone’s heart melt. A vixen had tunnelled her way under the shed and out came 8 tiny fox cubs! Hours and hours were spent watching them play and grow and tear up the garden. I’m not ashamed to say that we went out & bought them puppy food and dog toys. They were the best kept fox babies in the land and eventually they each went off on their merry way, aside from the smallest who despite the best start in life didn’t make it once mum had moved on. There’s something quite special about sharing your home with wildlife.
Mr Geek took all this being at one with nature a tad too far and fell foul of kissing a tree whilst out mountain biking. This little escapade earned him a trip to A&E, 4 stitches and a very sore face!
Our annual beach bbqs were taking on true British form where our gatherings with friends and their ever expanding broods were chilly and ended abruptly by torrential rain! Much of this particular one was sat on a blanket being in charge of tea as walking about was becoming painful without adequate drugs. Despite this, I did get a cuddle with the gorgeous twins and equally gorgeous E. There’s something maternal that never quite goes…
June clearly didn’t start off well…
Actually, it didn’t. That had been the day of the A Level exam with cock up after almighty bloody cock up. I was starting to desk jockey a fair bit by then and having seen my beloved student get so stressed all I could do was hold it together, come home & get ratarsed.
I’d rather have a day of mega EDS flares than watch my kids look that scared again.
Still going with my ukulele, although it was starting to pull on my fingers, I was determined to keep my hands going. I’d noticed over this term that I was losing my voice more regularly than before. Usually, the first 2 weeks of each term were a struggle, but now after any particularly loud lesson I’d be crackly. I put it down to the insane heat in my classroom which seemed to be getting to me more this year. I’d get woozy and assumed that my blood sugar was low.
June certainly wasn’t all bad though! I spent quite a large proportion of it creating facepainting designs for the summer fair at the girls’ school. Whilst pens were causing me grief, the lighter touch of sponges and brushes remained ok and we had tonnes of fun with these.
I also got to attend my first school prom at age 35. Ok, it was as a teacher and as such a chaperone, but I got to wear a proper evening dress and it was the last time that I danced this year. (Just look at the classy teacher getting ready in the staff toilets!)
July signalled the end of the school year (ok, the end of July did, but meh details) and as it turns out, undiagnosed teachers don’t feel well during a heatwave. The best remedy for feeling weird and hot & bothered is to sit in the kids’ paddling pool complete with work clothes and lay there until you feel human again (about 30 minutes).
Other things that don’t make you feel wonderful are being under hot stage lights or getting nervous. Asking for a chair on stage was a smooth move when I somehow got myself invited up to take part in the whole Knightmare Live show (for future reference, don’t clap excitedly when you see Treguard walk through the bar, and admit to being a Lord Fearleader unless you want to talk yourself into being in the show ).
For reference, I’m looking extastic & Treguard is looking hot & sweaty and a bit frightened.
In a totally unrelated matter, July was also the first time I properly noticed my skin tearing from anything other than stitches or tight knickers (it’s like chaffing but worse). This time, I’d worn a strapless bra which had rubber in it that had not just rubbed a mark or chuffed, but actually torn my skin leaving blood stains on my lovely white shirt. This photo was 2 weeks on (because some idiot didn’t think to take a photo at the time!). It was at this time EDS was shouted at me again as something to take to my GP.
I had other stuff going on though, as we had a holiday to Malta! Cue the family who are unable to just take a nice photo of themselves. Oooooh no – we have to pull funny faces.
I never understood after I got ill why the intense heat didn’t get to me out there, except it did, I just didn’t notice as we created a routine around it. Our room was air conditioned to within an inch of its life and we spent late afternoon & early evening “resting” in our room. (That’s code name for… laying on the bed and reading), and during the day we were either in a pool or the sea. When we were in the actual heat, we all suffered and sat down lots.
The photos we took hide the mobility well. I love this photo (and desperately want to go back to Medina), but what you don’t get to see here is the stick I used to walk around and the sitting down every 15 minutes and daily massages needed to keep my back and knees from ceasing. What I want to remember is that beautiful seat and the smell of the flowers.
August appeared whilst we swam in the Maltese sea and passed us by. But when we got back, I got ill. Bronchitis hit me between the eyes and knocked my immune system for six. Through coughing, my ribs moved out of place & my pelvis shifted. It was the summer holidays, so stick in hand, we carried on. On a walk up to the top of my favourite hill with the kids, D who was back on leave joked that they were the ones struggling whilst me with the arthritis was taking it in my stride. This clearly means that I can completely hand him responsibility for the shit hitting the fan as he jinxed me 😉 . I will make it my mission this year to get back up to the top of that hill, even if I have to find an off road chair. That is our hill. We grew our children on it.
By mid August, I knew something was going badly wrong having not only got into the habit of yanking my SI joint back into place each evening, but watched my knee pop out and back in again and watch my previously wobbly fingers begin to pull out of their sockets like Bic biro lids. I took a set of photos of the Beighton scale that my friend had pointed me to and took them to my GP asking her to assess me using the Brighton Assessment criteria for EDS.
My GP instantly recognised the signs of EDS as a friend of hers had similar symptoms, including many I hadn’t considered to be linked all the way back to complaining of clicky knees aged 9. She referred me to both an NHS consultant and privately to the London Hypermobility Unit as she was concerned about my unusual weight loss that appeared to be down to me feeling sick after eating small amounts, or food getting stuck before it hit my stomach. At this point, the word dysautonomia wasn’t in my vocabulary.
She told me to research as much as possible as EDS is rare and the more of an expert I was, the better my chances of treatment were.
Later on when I changed surgeries, I thanked her for this advice as neither of us knew how much I was going to need to advocate in such a short space of tim
September was a start back to work on crutches with a determination not to let this beat me. Day one after 2 lessons I was on the floor in floods of tears with my back out and my hip & knee screaming. I had to accept some help. Cue Roboleg! Here to stop my knee collapsing and consequently hip twisting. It was heavy and bruised the crap out out of my other leg, but really worked!
It was also the month when my first wheelchair arrived… and was put into the car and ignored. Little by little I accepted that the chair was helping reduce the daily pain and broached the subject at work. The first public outing of seeing people with me actually using the chair was meeting up with The Fighting Mongooses at EGX in Birmin
Maybe it was the cosplay. Maybe it was the brilliant people, but this weekend was the first time that I felt ok both being in a chair and ok letting people help me.
I made some exceptional friends that weekend and am not ashamed that I had a little cry when we had to say goodbye.
September was also a period of travelling rapidly downhill in terms of symptoms and pain. The more I returned to the GPs with pain I couldn’t tolerate, the more they sent me away telling me to wait for a specialist.
Making it through a day at work required going to bed by 7.30pm and I’d return each evening in so much pain I could barely speak. I don’t remember a great deal about it, aside from being very scared that I was no longer functioning.
I began to read about this diagnosis I’d been handed and looked for ways in which I could “push through” the pain. Instead, I found a whole host of other things that my body can do that technically it’s not supposed to.
By October, my major torso joints were so floppy, I was using the chair daily including at work and still pretending that everything could be fixed with a positive thoughts and growth mindset. (Someone slap me). However, this lady had the balls to put me straight and tell me that it was ok to be pissed off that this was happening and shared her own battle scars with being landed with a disability. I teach her how to duck face & in return she forces me to stop being emotionally crippled. It’s a totally fair swap.
I ended October in more pain than I started by daring to use crutches in the house, turning on my heel and fully dislocating my patella. Whilst usually that would mean snapping it back on, this time I couldn’t line the kneecap up properly. Arse. And so to A& E we went and a fortnight of cricket bracing later, my knee was less bruised but just as wobbly as before!
October was also the month that I got my official on paper EDS 3 diagnosis from a Specialist at the London Hypermobility Unit and referrals for the various autonomic issues which were getting steadily worse. The question how much weight have you lost started to prompt raised eyebrows.
Our hospital trip was made lighter by taking the girls to the Natural History Museum for Beanpole’s birthday. The kids thought it would be funny to show me what a skeleton ought to look like.
Half term was spent in Northern Ireland with the GypsyTrees who had now moved over there and were well and truly settled. It’s hard to explain the feeling of being happy that they’ve finally connected with a place that feels like home, and yet feeling like I’m missing a limb. The physical journey there was hard and I used all my spoons and other cutlery, but it was so worth it for those familiar voices, sights and smells. I’m pretty sure my friendship with Mrs Gypsytree will always be that if 2 six year old girls who secretly wish they were sisters.
November saw some big changes at work as assessments started to happen and I began to use the chair not only daily, but stopped driving due to a combination of being on a higher level of opiate painkiller with oramorph on top, and with joints popping out the ability to emergency break (or in fact steer) was pretty much gone. Cue Mr Geek becoming my chauffeur whilst we applied for transport help to keep working.
A huge bonus this month was my robochair arriving and also finding an inflatable bath chair on eBay. They’re like hens teeth and once I got over the idea that someone else’s naked bottom had been on the chair, I rejoiced I’m the idea of no more being painfully lifted in and out. Just a button press and I was gently lowered into my lovely bubbles.
December saw the slowest (and possibly most expensive) roller coaster in the world arrive. This literally gave me back normality around the house as I could use my wheelchair to potter about and then go up and down the stairs as I liked. It was also a turning point for my parents who saw that I wasn’t going to go into hospital and “get fixed”, but was going to fight tooth and nail to remain productive. In their own ways they’ve tried to show that they get it now. I’m really very thankful that they’re trying so hard.
Yet another trip to London for autonomic testing introduced me to the Nutty Professor who gained my absolute trust in under 5 minutes. He was calm and funny despite me doing an excellent example of collapsing when he asked me to do simple things!
Silver lining here is he’s made an unconfirmed diagnosis of POTS with a request to our insurance for me to be admitted for a couple of days for more Spanish Inquisition tests. However, he was confident that he can treat the majority of the head wobbles.
The main event was kept as normal as possible for the short people despite their insistence on having a Darth Vader Christmas tree. Family and friends were in abundance and Mr Geek was off with us for a whole week of festivities (and the kids being glued to the Xbox in almost Matrix style ).
My spoons were being used up by simple trips out in the car / chair to the supermarket, and so Beanpole has set up a secret code for when I’m too tired or when she’s too overwhelmed and we just need to switch off.
The year was ended as it began, with card games and silly onsies and wonderful friends with our ever expanding collective broods being their wonderful little selves.
I could say that 2015 kicked my arse, and it certainly attempted to. I can’t say that it’s been easy & 2016 has certainly started with me laying in bed trying not to breath too much to keep my rib still BUT…
I have the most incredible supportive husband who physically gets me up and dressed each day.
I have two mature and caring daughters who have taken this in their stride.
I have friends who aren’t just there for the fun times, but drop everything to show me that they care.
I have a zebra onsie.
I have a plan for 2016.
Watch this space, because I’m not done just yet.
Happy 2016 everyone 🙂