Back in the saddle

Bluebells were on my mind. A week or so ago I started a gofundme campaign to help me raise enough for a wheelchair cycle to help get me out of the house & back doing the things that we love as a family. I never expected it to take off like it did, and thanks to some enormous generosity and a chance ebay encounter, this weekend I found myself cycling through our local woods and enjoying a surprise bit of sunshine & the bluebells!

More than anything, this blog post is a thank you to everyone who helped to make this pipe dream a reality.

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Bluebells! Thousands of 'em (photocredit: TinyPants with my phone)

Every year we’ve taken photos of the girls enjoying this sign of spring & this year we finally managed a few, although Beanpole wasn’t keen (hence her absence as we didn’t want to push it). A much required rest in the middle of our ride along the firetracks gave ample opportunity for posing.

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TinyPants had control of the camera for most of the afternoon, so many of the photos are rather interesting. I love how happy Mr Geek looks here with his whole family back in the fresh air. And so much green!

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Having managed a decent distance with my knobbly tyres & trike working beautifully, we stopped for a break and a chance to admire the view. We certainly got some funny looks as I trundled past kids on bikes & people with dogs. The kids were having a great time and thanks to the softly inflated knobbly tyres I barely felt anything going across gravel. Plus, I was outside!

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So here we are in action. Me and my bikers 😙

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Did you see that smile? That’s the smile of a person who hadn’t breathed proper country air for months… and has no clue that her battery is about to die a horrible death 1/2 a mile away from the car! To give it it’s due, we managed 5 1/2 miles and some serious hills before it died. So on tarmac, it’s got a fair chance of lasting a fair bit longer. Even so, that was our cue to make sure we pick up a spare battery before we head off over the summer.

Despite that minor blip, it was the best afternoon in months. My family, our woods, the smell of spring, sunshine. And clearly, from the state of my mood, some serious vitamin D. 😆

Even better is the fact that trip 1 caused little more than some shoulder, hand, & leg pain & core muscles that feel like I’ve done 100 situps! No joints came out. No trips to A&E. Just a few hours of fresh air & freedom.

Stop Being Sick, You’re Making People Stressed

I feel like a bloody salmon at the minute. As soon as I get my shit back together and start swimming upstream, I get to the top to either fall back down again or be eaten by an opportunistic bear. I am using everything in my arsenal to hold it together mentally and not have a proper poor me pity party over losing my ability to get out of bed or make my own cup of tea. I’m not one for self pity, or pity of any kind. I find it boring, especially when it’s me that’s doing it.

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Today we travelled back from Ireland – the sum total of 7 hours in planes & automobiles (no trains) and arrived home at 9pm spoonless and close to vomiting from pain.

Some months ago at my PIP interview, the guy who interviewed me turned solemly to Mr Geek and said “Watch her. She’ll put on a brave face then all of a sudden will hit rock bottom. Just watch her mental health.”. We shrugged it off.

Since being diagnosed, I have not mourned the loss of my physical capabilities outwardly. I’ve internalised it and it’s manifested in me not sleeping and I’ve subsequently grinched about it on here, but I’ve just got on with life because that’s what you do. I’ve not given up work, I’ve attempted to continue with life as normal, I’ve played down my pain levels whilst gently introducing everyone else to the idea that they need to live with a disabled person.

Occasionally, I am snappy with Mr Geek because he forgets that I can’t do something, or I ask him to do things for me to maintain this quality of “nothing is wrong” life. He is a good man & I lean on him. If anything, I snap at him to make sure the things that wind up other people in the house are done, or something for the kids. The things I personally want to do come much lower down the list, unless it’s pain related.

This evening, after yet another wonderful experience with people who claim to be accessible, I was not in the mood for a “you’re doing it wrong” conversation.

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But I was treated to one anyway.

I was informed by my Dad that over the past 9 months of my getting ill, Mr Geek’s stress levels haven’t just doubled, or quadrupled, but multiplied infinitely and that that was because of me. He’d “noticed” that I was overly demanding of Mr Geek. The exact phrase used was “I couldn’t put up with what he deals with”.

I explained that it’s not easy to lose your independence & yes I know I snap sometimes, but it’s frustrating when you cant do things you once could. I was cut short and told “that’s not his problem, that’s your problem to deal with”. This was followed by the offer of help from him & my mum to sort out caring for me (having already said, under no circumstances do I want them doing that –  I’d prefer to have an outside carer. ).

Now I know he meant well & has Mr Geek’s state of mind at heart, but that little thread of sanity I’d retained just snapped.

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So let’s all really say what we’re thinking shall we? Whilst we’re goibg for subtlety. You’re meant to get ill, go to the hospital and get treatment then get well again or die. Well, I’m not doing the latter so instead at best I’ve got another good 30 years of being in daily pain with more and more joints popping out and various organs prolapsing, & at worst add in my current GI & dysautonomia issues getting worse. That’s my whole lifetime again without sufficient drugs to mask the various lightening bolts and spasms, or eye-splitting headaches, then the possibility of tubes for food going and and out.

I try not to look at that big picture, because down that road lies maddness and a one way ticket to Switzerland.
This is much more manageable taken one day at a time with future plans being fuzzy in case they need to change. Taking small steps also allows for an inkling of hope that this might get better. One bad day can’t go on forever, or at least that’s my positive hippy dippy thinking.

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I’m aware that this is just another one of those cycles that you go through after becoming ill, but having been raised to not have a healthy outlet for my anger, I get to sweep this under the carpet and trip over the lump.I know that it’s actually OK to rage over the injustice of losing the life that you imagined you were going to have. I also know you get over the raging and become a human being for the other 90% of life. I know that Mr Geek gets it and encourages the blogging because it is fucking infuriating not being able to do up your own arsing bra.

What this doesn’t stop though is my overwhelming urge to go to bed and not bother getting back up. If it’s my problem then I’ll stop trying to make it easier for everyone else and deal with it my way.

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Raindrops on Kittenscl. And mittens on snowflakes?

Dear Mr Geek,
I’d like to write something profound about the rejuvenating qualities of spending time with your best friends.  Certainly calmer and a bit more pragmatic than I was a few days ago.

Due in part to my brain soaking in oramorph, I will stick instead to a Julie Andre’s style list of things that you do. A few of my favourite things if you will…
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Making light of things with blatant innuendo. You see the breast in everyone.

Kneading my shoulders. I wind myself up tighter than a tightly wound thing and add to my muscle knots and tension headaches by being Anxiety Girl. You methodically go through and untangle those muscles and manage to calm my nerves at the same time.

Providing food. It sounds simple doesn’t it? But I just wasn’t in the right place to start eating today and the “better” feeling from fasting is alluring. You tempted me with nuts & chocolate until I stopped wearing the retaliation from my intestines for eating.

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Technically, food credits here go to Mr GypsyTree. Oh this was SO good.

Stroking my hair. This one is odd. I don’t like other people seeing the current state of my hair and so it highlights how comfortable I am around Mr & Mrs GypsyTree having unwrapped my scarves this evening. But instead of wanting to hide my hair from you, I like that the hair that is left is kept back as a gift for just you. What this means is when we lay in bed and you stroke my hair, it’s so much more intimate and creates a little bubble around us where everything is OK.

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I’ve felt so unwell this week and I appreciate that you’ve recognised that and adjusted yourself accordingly even though you’ve been stressed out of your mind too. Things always feel much better when we throw poop at it together. We’re a team. And even if I am barely able to string a sentence together, I love you very very much.

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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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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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I Like Cereal – I sound like rice crispies

I saw the NHS Rheumatologist today, you know just for funsies. This was the appointment I’d been referred for by my GP in August. Now before anyone from the US jumps in with “ahhh loook, your health care sucks”, I’ve also used my husband’s additional insurance to see three specialists since then, get a diagnosis and start other investigations. But the insurance doesn’t cover long term care.

Our state system however, doesn’t run out. It will care for me whatever goes wrong using the resources that it has in the best possible way to ensure it will help others too. Part of that is today’s consultant giving his opinion to the Pain Management Team who will take me from here to wherever we end up. I’m not charged at the end for any of this. There is no bill landing on my doorstep, I do not need to be afraid of the cost of the medications prescribed. I’m just that little more protective of our state health care seeing people use it as a stick to bash Obama’s dream of free health care for all. I don’t understand people who don’t think it’s a good idea!

I saw one of the 4 specialists for our county today who despite having a queue, took his time to explain his thoughts to me, and throw out the piece of paper that gave me a diagnosis and examine me himself, and in more detail than the private assessment. I asked if it was ok to take audio notes as my brain fog is at warp speed and whilst I may smile and nod, my brain isn’t retaining much. He agreed with no issues and so my phone has become an extension of my brain once more!

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He looked for signs of arthritis  (none – win!) and poked at weirdly painful sites just outside each joint. These are trigger points where nerve endings are bundled and are indicative of chronic pain response, where the body is so used to pain it goes over the top with pain signals. He also successfully told me without asking which joints hurt the most and which sublax most often. His earlier comments about disregarding dysautonomia were sort of puts aside as where joints were concerned, this guy had magic hands. He also did something far more important – he spoke to me, but explained what he was doing to Mr Geek & asked how he was coping. Mr Geek walked away from that appointment informed, relieved, and empowered. I can’t thank the doctor enough for doing that.

Despite being freezing cold, in my underwear, with a strange man causing extra pain to my joints, I liked him.

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He asked me to stand up, which I did with the help of Mr Geek. Then bend forward. Cue second round of tunnel vision & this time full on collapsing on Mr Geek in front of a doctor in a week. A new record! But despite feeling my vision go black, I knew it was Mr Geek who put me back on the table, but there was an extra hand on my shoulder that I was really aware of & he kept it there until I was fully conscious and stopped the examination right there & then. A simple piece of physical contact gave me a focus point to go from fainting, back to focused and calm – clever man.

He had a more positive outlook on my EDS and autonomic issues than any doctor I’ve seen so far. I might even use the phrase of the moment at school – get had a growth mindset. In essence, he said that if we look at this holistically, using pain relief from medication, mobility aids to keep functioning, physio to maintain or even build muscle tone & assistance from the autonomic team for gastric & pots, then there’s no reason why we can’t slow the decline if not even reverse it a bit. Reverse it.. as it make it better! Ok, make it a bit better. I’ll take that.

Part of dealing with the heart rate, and also the slow transit is drinking more liquid than I thought possible.

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I appear to be taking the small child approach to water in that I’m only thirsty when I’m meant to be going to sleep, or instead of eating dinner, or when we need to leave the house. Aside from that, I’m getting constant prompting from Mr Geek or my mum. Whilst I feel like a 35 year old child being nagged, it’s probably for the best as the IBS is reigning supreme this week and dehydration is nigh. Whilst we wait for the insurance to confirm if they will pay for the autonomic testing with the Nutty professor, it’s home treatment with water & salt. Fingers crossed it comes through.

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I started writing this post at 12.30am as Mr Geek has just helped me stick the TENS patches over the back of my shoulder. One of the things I took away from the appointment was the effect that my crappy sleep pattern has on my pain levels – yes, I have pain from subluxing left right and centre, but I also have secondary pain from pulled muscles, trigger points (knots… really painful muscle knots ), and CRPS. His suggestion was that lack of sleep triggers pain, and pain triggers lack of sleep, so I hit a viscous circle. Sadly, tonight Consultant causes shoulder to sublux which for the love of God won’t go back in, causing pain (and some interesting numbness in my hand and forearm), causing sleeplessness. I’ve medicated to the eyeballs, but nope.

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So instead of jumping on Mr Geek’s last nerve (because frankly, oramorph just makes me giggly instead of sleepy), I’m trying the tens setting that just thumps against the muscles making them twitch a bit. It does actually tone down the pain a bit, certainly enough to think straight.

Finishing this post at 2am probably isn’t doing the sleep patterns much good, but it has allowed the TENS unit to get deep into the muscles and do its thing. Tomorrow is Christmas Eve which means final wrapping, excited kids, and the traditional supper with Mr Geek’s family. I’m not at my best in the evenings now, but I wouldn’t miss it for the world. We will spend the evening tracking Santa on Norad and watching various grandparents preserve themselves in alcohol. They take me just as I come, and in return, I’ll do my best to play along with being a human…

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Note: for those of you confused about the cartoon guy – it’s Cheese from Fosters Home for Imaginary Friends. With the combination of brain fog and side effects from pain or painkillers, I pretty much relate to him right now.

It’s Easy Isn’t It?

It’s very easy to get frustrated when I can’t just get up and do something myself. This gets magnified a gazillion times when you add hormones into the mix.

Just for reference the week before “that week” involves extra wobbly joints, extra joint pain, not so random CRPS flares, breasts that swell and feel like they’ve been used as speed balls, retention of enough water to solve a sub-saharan drought, and just a teensy bit of irrational anger.

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It’s very easy to forget that you picked me up from work, cooked dinner, shuffled the kids to bed, and because of all that washing my stinky wrist braces was not high on your agenda.

It’s very easy to forget that we’re separate beings, so your day hasn’t been spent listening to my squeaky wheel so you did forget to oil the bearings because you haven’t heard them squeak since this morning. It’s also easy to forget that a week isn’t actually that long since I mentioned it – you’ve had other plates to spin like making sure my chair battery is charged, scanning every medical letter that arrives, planning our combined diaries, getting me to doctors appointments,  monitoring my medication, bringing me water & reminding me to eat…. and generally functioning for two when I go vague.

It’s very easy to forget that your job is important too, probably moreso and that you’ve been working on my time schedule for the last half term (the last 6 years tbh) which impacts on your work. This is a very valid reason why the Christmas cards that I bent my fingers out of shape writing at the weekend are still sat on the footstool.

It’s very easy to forget that although we were sensible and went to Amazon for all the Christmas shopping, someone needs to unpack these boxes that are invading our bedroom, wrap them & hand them out, and invariably that’ll be you.

It’s not easy to forget that I need you. I don’t want to need you, I want to want you. Needing you puts me in an uncomfortably vulnerable position, but if I have to need someone,  I’m glad it’s you.

I’m sorry I’ve been an irrational psycho this week xx

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Show Me The Way To Go Home…

Tired has different levels. Tonight’s tired is a special kind of tired.

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Going out for dinner last night did more than play havoc with my intestines, but has had some kind of altercation with my body.

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This morning I slept in until 11 and a visit to Mr Geek’s family just trashed any energy I got back from sleeping in. I’ve been really potsy all day with random dizzy spells and not able to keep warm at all. I just want to lay down and vegetate.

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Sadly, I can’t. I had prep to do for work this week and masses of poo has hit fans over a special event I’ve been organising. I’m not wholly sure how to deal with it. What I have done is randomly drop off during conversations and generally be pretty useless all day.

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Poor Mr Geek hasn’t had it much better. My weird sleep patterns are disturbing him and he’s reaching he end of the line with people demanding his attention left right and centre. He needs a break, but can’t just hand over to me and piss off on his own for a while. He’s just too nice to say no & is making himself ill looking after & worrying about me.

We both need a week to just stop & sleep & probably attempt a normal relationship.

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