Hair Today…

I have so much to write about & my loooong blog about last weekend away with people really is underway. But I’ve been meaning to tackle something for a while now.

I’ve spent the past 20 years + being defined by my hair. For the past 6 years, I’ve been a trademark red going from a subtle mahogany to outright fuck me post box red. I prefer the latter. Before then, there was a phase of pink & green combo (I was even on Google earth with that!), and my wonderful long dreads during university.

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Red hair has definitely been my defining feature, even going back some years. (It also dawned on me that I pout a lot at cameras, and was clearly raised on MySpace)

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My earlier dabbling with funky hair produced some finer moments of colour (National Trust excursions got some excellent looks. Especially as I was also making my own clothes back then).

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And the money that was spent collectively on eBay by me and Mrs Gypsytree buying plait in dreads doesn’t even bare thinking about (Although, to give them credit, Mrs Gypsytree still wears them because she’s irritatingly unaged).

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And now? Well, now to go with my standard dry & sort of brittle hair, I have a killer combo of the EDS making it more brittle and Gabapentin just making it fall out. There. In black & white. My defining feature is making a messy exit and I need to deal with it in a way I feel comfortable, and I want to get used to that way before its too noticeable…. ooh I don’t know, like asking for your wheelchair caster to be fixed because it’s not running smoothly & the reason for that is because there’s hair wound around the bearing plate. I mean seriously, wtf?

I’m not wholly sure what to make of this new development. I feel like it’s a bit vain to be fretting over my hair when I ought to be more concerned that my shoulder won’t stay in, or that my health insurance haven’t quite got around to sorting out the heart valve tests… none of this phases me, but going bald… won’t my brain get cold?

My choices are : to leave it and just go with it, but I feel self conscious as I seem to be shedding more than the cat which is gross; wear a wig, which I’m not wholly sure would look right although later on down the line I might, but I still have too much length in my real hair for that to work and bugger me how expensive??!?!; or finally, wear a headscarf.

I have a decent collection of scarves anyway that I use to keep modest at work (read hide cleavage) and also hide my neckbrace, so I did some research about different ways of wrapping your hair. I was keen to look as if I still have hair under there but didn’t want to opt for the hijab style covering (not for any anti-religious purposes, but more because I want my hair covered, not my neck). Eventually, I found Wrapunzel and their use of and tutorials on how to tie a tichel which is an orthodox Jewish head covering for married women (That’s now 3 religions I’ve encountered that encourage women to cover their hair). It appealed because of the elegant way the scarves were used, but also because of the focus on having a bun at the back which can be padded to make you look like you have more hair. It also needed to be easy enough for me to do without yanking my shoulder out again (like my over excited Uno! move on Saturday… That’s not what they meant by Uno Extreme apparently ), or simple enough for Mr Geek to wrap for me after he’s brushed it & stuck it in a sock bun as is our new routine.

This weekend was my first real venture out, and because of the positive. response from my lovely Mongooses, I’ve carried on and worn my coordinating tichels at school all week, including to a parents evening!  I feel much more confident with my hair wrapped. In fact, people have commented that I look healthier this week. This could of course be the result of having spent the weekend in the company of amazing friends where I let go of all stress & bad stuff, but hiding my ever snapping locks in beautiful fabric can’t be hindering it.

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Ok, so mainly I’m wearing the black one right now as it’s less conspicuous and having a bit of hair peeking out the front has warded off the majority of questions. Aside from the one young lady who yelled ‘do you have cancer?’ across the classroom. We had a chat about tact and dignity after that, but allowances can be made for being a bit of a knob when you’re 12.

There are definite upsides – any loose hair stays in the scarf, not on the floor; I can look healthier by adding colour; it actually protects my hair from breaking by supporting it; I can use coconut oil on my hair and I don’t look all lank and greasy;  I don’t have to dye it mad colours, just choose a new scarf…

… of which there are a few more coming. I’ve ordered a set of plain coloured hijab scarves and under caps which help keep the tichel in place. Amazon is a treasure trove of stuff sometimes.

So, watch this space. I even have a zebra scarf…

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Have you tried wrapping your hair? What style do you prefer? Do you have any tips?

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Carby Cravings

It’s the second day back at work and I’m tired and hungry (and we’ve returned to not eating dinner until past 7.30pm because of work & kids club commitments). I want a great big bowl of pasta and garlic bread. Or a pizza. Yes. A pizza with CHEESE  and garlic bread. With extra doughballs. And breaded chicken. And some mac & cheese just for good measure.

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I am so sick of the gluten free “ooh it nearly tastes the same” shit. It doesn’t – especially bread. Gluten free bread tastes like it was made out of the mashed bones of jelly babies. Even hearing someone slicing through lovely fresh tiger bread makes me want to skin them and play taxidermist with breadcrumbs. I want white baguette that doesn’t taste like play dough and enough garlic to kill Nosferatu.

Fuck you gluten free FODMAP diet from hell.

Also, I might have a bit of PMT.

Soothing The Gluten Monster

Some days you just wake up feeling like crap. Today was one of those days. During the night I woke up screaming in pain having just instinctively pulled my legs up after the bloody cat bit my foot. Most normal people would just swear at the animal and go back to sleep, instead I popped out a hip.

Clearly a killer this one.

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Having spent the morning and early afternoon frowning at my planning for next week, I decided I needed a pick me up if I was going to tackle next week. Time for a healthier version of a hot toddy & I found just the foundations of this drink on the Eight Hours Blog.

Ingredients :
– half a juiced lemon
– half a juiced orange
– grated fresh ginger
– 2 cloves
– 1 cardamon pod
– 1 cinnamon stick
– a few dried (or not) cranberries
– coconut water
– honey to sweeten

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What possessed me to combine these things in a single cup? Aside from the insane mutterings of someone who threw caution to the wind when they should’ve avoided gluten, it’s actually rather good for you.

Lemon
Stimulates the liver to produce bile which aids digestion, but also encourages bowel movements.

Orange
An excellent source of vitamin C, which has been shown to help decrease joint inflammation and also helps absorb iron.

Ginger
Can be used to tone the muscles of the digestive tract which helps motility. Because things are moving more normally, the pain from inflammation is reduced!

Cloves
Another anti-inflamitory, cloves also have pain killing effects and taste a little bit like Christmas.

Cardamom pod
The oils inside the pod have anti-spasmodic effects which can sooth the GI tract (and also tastes a bit of Christmas… can you see where I’m going with this?)

Cinnamon
It tastes like mulled Christmas.

Cranberries
Another good source of vitamin C, but also has soothing properties for your stomach lining.

Coconut water
More than just standard water. This has extra vitamins and is good at hydrating the body quickly (I’m a suckered for all things coconut)

My general method was to juice the fruit and bung it into a mug along with the spices.

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The ginger needs to be grated. And you’ll only need a teaspoonish of grated ginger. After that, top it up with coconut water and add a dollop of honey.

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This needs to be warmed up to get the flavour to infuse, so we stuck it in the microwave for 2 minutes. We removed the cinnamon stick and I hugged the lovely cup of yummy.

Aside from tasting nice, it really did perk me up and no caffeine 🙂

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There may be a few more of these this week now we’re back to school & work.

My Stupid Stories

When I glance over my blogs and photos of myself and Sherlock between the years ’04 and ’15, I am faced by so many which present strange and interesting features that it is no easy matter to know which to choose and which to leave. Some have previously seen light in my blogging, and others would not be deemed suitable for the musings about my dear friend, whilst a few would identify her kindly nature that betrays the aloof and analytical body that she wishes to portray to the world. This particular story will do just this.

The year ’15 had furnished us with a multitude of work, resulting in her resettlement in Ireland and my fast decline in health and the resultant confinement to this wretched perambulation contraption; these two facts bear no correlation, but remain noteworthy for the purposes of the scene. Sherlock had since purchased a substantial property, acquired some Strange objects to fascinate her and begun a collection of historical automobiles which in some otherworldly fashion crossed to the other side once in her possession. All these I may sketch out at some future date, but none of them present such singular features as the strange train of circumstances which I have now taken up my pen to describe.

It was New Years Day of ’16, and as a coincidence also my 36th birthday. All day the wind had screamed and the rain had beaten against the windows, so that even here in the sheltered Downs of the South we were forced to raise our minds for the instant from the routine of life and to recognise the presence of those great elemental forces which shriek at mankind through the bars of his civilisation, like untamed beasts in a cage. My mood had reflected that of the weather, having been detained from my bed by our guests the night previous to celebrate the appearance of the New Year. With much fuss and confusion, I agreed to join my gathered family members that morning and acknowledge the passing of another year on this earth. I was presented with a most unusual gift by Mr Geek containing a cryptic message within the intricate silver workings of a beautiful necklace. I identified the chemical composition as dopamine with haste and assumed that this was a reference to my current use of the painkilling substance morphine, to which dopamine is so closely linked. This necklace offered me a clue to things which I had not the presence of mind to see.

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As evening drew in, the storm grew higher and louder, and the wind cried and sobbed like a child in the chimney. I received a message from my dear absent friend wishing me well with a “I hope you have a happy birthday Sherlock”, supposedly alluding to the evenings entertainment as well as our pen names for each other. Perhaps it was my contrary mood, but with I as Watson, this was not wholly accurate. Being aware of the imminent requirement to leave my residence in order to attend a social event some miles away at the theatre, I was very much inclined to cry like the child in the chimney myself.

Looking directly at Mr Geek who was busying himself readying my clothes for the evening, I said “I am tired my dear. Do you think it wise to go out this evening?”.

“Watson! We have made fast plans and we will not dissapoint the others” He scolded, and continued to help me dress. I determined that I would wear both my new necklace and bracelet which was half of a whole that I had shared with Sherlock the Christmas hence. On affixing my necklace, I discovered that my bracelet had vanished from my bedside cabinet and was nowhere to be seen.

It was with a heavy heart, and an empty wrist that we departed for the theatre at which we were to watch the annual Moffat production which I had previously enjoyed each year with Sherlock. The loss of this simple silver piece ignited a sense of loss that had previously been well hidden.

The collection of my sister-in-law and her good man served to lighten my spirits as we travelled to our destination. “Will there be additional content, do you think?” Suggested Ms Bouffet.

“I would believe so.”

“I hope” she said, “that the content may be earlier than that for the general populous. Or at the least with additional detail.”

“The timing would indeed suggest so”

My conversation was lacking and as such was noted by my travelling companions who asked after my health. I was indeed in a substantial volume of discomfort and explained that my demeanour was due to the ineffectual medication. I did not allude to my earlier emotional state over a simple bracelet as this would have made me appear quite unhinged.

Upon our arrival at our destination, I spent some considerable time talking with Ms Bouffet’s good gentleman, discussing several shared interests and his plans for future detective work. Engrossed in this most fascinating of conversations, I was to be surprised my a pair of hands appearing over my eyes!

Initially fearful as my vision was robbed from me, my emotions were quick to change upon hearing a familiar voice from behind asking “Did you miss me?”.

Refusing to believe my own senses, I turned my chair around and discovered that trusting my reactions was a fruitful venture. “Sherlock!” Cried I.

“Hello Watson.”

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My beloved Sherlock had flown hundreds of miles over the New Year festivities at at the behest of Mr Geek to surprise me at my own birthday gathering. I could not have been happier.

The group, Sherlock & I located our seats at the first opportunity laden with a sugar coated feast that would see us through several performances and settled on to thoroughly enjoy the visual and cerebral on screen delights bestowed upon us by Moffat & Gatis. We were not to be dissapointed and whilst I may not be physically able to move to the edge of my seat anymore, nonetheless there I remained.

As the evening drew to its inevitable end, the mood remained high. It would seem that all were aware of this plan and had played their own parts, sending messages wishing a Happy New Year “from afar” and leaving discreet clues.
I had been the only one not to put each of the pieces together and deduce their plan.

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“And necklace with dopamine.” Explained Mr Geek, “So you will always be happy.”

Sherlock looked at me with her eyes as sharp as ever. “Elementary, my dear Watson”.

Footnote:

My Dearest Sherlock,

Thank you for flying all the way here just to see me on my birthday. I couldn’t have asked for a better present and seeing you utterly made my day. Extra points for spending the following day in ridiculous onsies and making plans to take over the world.

I also owe thanks to Messrs Geeks for buying tickets, looking after children & keeping such an enormous secret. I will be over to see you soon larger & hairier Geek and will give you such a hug! I miss you just as much xx

Putting several hundred miles and a sea between us doesn’t stop the four of us being the best of friends.

Yours as ever & without condition.

Watson.

For authenticity, and a particularly nerdy reference to the episode, some snippets were taken and adapted from The Five Orange Pips from the original Adventures of Sherlock Holmes by Arthur Conan Doyle

2015 Roundup

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 ).

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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!

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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.

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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.

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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.

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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.

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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.

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*Video link here *

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.

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*video link here*

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!

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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…

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June clearly didn’t start off well…

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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.

*video link here *

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.

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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!)

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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).

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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 ).

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For reference, I’m looking extastic & Treguard is looking hot & sweaty and a bit frightened.

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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.

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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.

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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.

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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.

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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.

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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

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e.

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

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gham.

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.
h

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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.

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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.

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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!

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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.

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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.

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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.

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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.

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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.

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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 ).

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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.

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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.

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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 🙂

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