Sleep is For The Weak

I watched an interesting and yet terrifying documentary on Netflix today called Take Your Pills. If you’ve not watched it, please do. It’s a worrying window into how kids cope with the academic pressures ladled onto them. There were also so many ambitious adults on there who are taking Adderall to stop burnout. Some had progressed to taking low doses of LSD, with stories of people in their 30s having exhaustion induced seizures and being called / emailed at the hospital for work they hadn’t finished.

(For point of reference Adderall is an ADHD drug similar to ritalin – both are amphetamines, but adderall is closer to methamphetamine)

Ironically, here was me watching this in bed in my pyjamas at 10am on a Wednesday morning. I’ve worked every day for the past 14 days and by Tuesday morning found myself wrapped in a blanket at 7am staring into my mirror instead of getting ready for work, after another “fun 4 hour sleep” unable to put makeup on because I was so tired & woozy. Technically I should have called then, but I felt too guilty to call in sick. My pain levels exhaust me, but I don’t want to “use them as an excuse” – the internalised ableism is almost audible around me at times like this.

As my workload went up, so did my pain levels amd my ability to cope dropped – I already have a heafty painkiller routine, but the morphine levels have risen recently. I had a bit of a stark awakening when just before a stream on Monday my shoulder popped out (fully dislocated with a torn muscle). Mr Geek returned the joint to it’s rightful place & I asked for “some morphine please”. This sparked much hilarity from my friends on camera who witnessed a totally calm woman politely request strong narcotics. From most people I’d get upset, except I know they intrinsically get this pain threshold thing – I don’t scream & wail because I’m not scared. It hurts like a motherfucker & still does, but I know why and how to solve it, and precisely how bad it will get. Staying calm stops my muscles going into spasm & helps the joint back in. Much love to Jo & her meditation techniques for this.

Anyway, knackered lots of pain etc. so in bed on my “day off” before tutoring starts. It occured to me that I was utterly confused by the concept of not being able to focus – these people wanted to push through the tired & work faster, longer, better. And were using amphetamines to do it. They are literally taking drugs to have the unpleasant side effect of my adrenal dysfunction. WTH?!

I made a list of things I’ve achieved over the past 7 days to show the effects of skidding through life in constant fight or flight:

7 days of stuff I’ve done

Learnt how to code with basic Unity & Cardboard VR

Made & released a simulation App for my department’s charity den (go look & download to raise money for our local homeless shelter!)

Written a draft short campaign for the roleplaying group I play with (3000 words & counting) based around Tudor / Medieval Sussex folklore.

Created ink drawings for a couple of characters.

Scruffy witch with long teeth stands holding a fish

Ginny Greenteeth – river hag, notorious for dragging people into water.

Joined in 2 roleplaying streams totalling a collective 6 hours (no regrets!)

They’re not on YouTube yet, here’s one we made earlier!

https://youtu.be/YcDgJos28sE

Created an ink drawing of one of the characters from our game stream.

Drawibg of a Young man in a long coat running with a flaming torch in one hand and a dagger in the other

Lamb the SaltGypsy from our Salt & Thirst Campaign with BloodThirsty Puppets

Worked at my teaching job for 32 hours + a few evenings of marking

12 hours of online tutoring

And a blog post.

….

Now in a list, I looked at that and thought “wow! I’m a fucking superhero!”. No brain, you are not. You are skimming years off of your life by not slowing down even when limbs are literally falling off and you’re crying from being tired. What my brain is failing to mention is:

The sketching is done at 1am when I can’t sleep because my CRPS is playing up & my leg feels like its on fire

Much of the middle of the night suddenly awake cold swears stuff is due to panic dreams where I can’t escape from a fire. Subconsciously I know this is because the alarms broke on Friday & we’re just waiting for an engineer & there’s a plan in place, but I don’t like feeling vunerable & not in control. Being nervous = extra adrenalin.

The streaming is my socialising. I do this from bed because sitting in a chair is too painful after work. I’d rather cut a boob off than not join in.

Same goes for tutoring. Big pile of pillows in bed. I enjoy it & it’s paying for the holiday which the girls & Mr Geek deserve so much after giving up life to accomodate me all year.

I loved creating the app, but the all consuming fear that I’d let people down if it wasn’t done meant that by Sunday morning I was covered in hives (I still argue that it was worth it)

……………………………

So the brain & I had a serious talk having been placed into a salted bath by Mr Geek who now just looks at me like a concerned pet owner does at a cat that keeps pulling it’s fur out.

I can’t keep going where the adrenalin rush pushes me. I can’t shrug off every conversation where Mr Geek tells me to rest more and stop working, or at least saying yes to more work. I can’t survive on less than 25 hours sleep per week.

Something has to give, and with a leaky heart valve we’d rather it wasn’t that. Also, that’s not a very rock & roll way to go.

The brain needs to stop flooding me with adrenalin and I need to be sensible and take a few days off. I’ve cleared my diary for the whole 4 day Easter Weekend, much to the dismay of my tutees (downside of self-employed tutoring is they genuinely believe I’m on 24 hour call).

  • Even if it snows, we are going to a National Trust garden.
  • I’m going to sit in Mr Geek’s lap, tangled up together with all the tech off and read for pleasure
  • I’m going to paint with TinyPants on a hill.
  • I’m going to watch sharknado with beanpole

I’m writing this downas a line in the sand. As a very loud, but wise man who never followed his own advice once told me: 49% work / 51% family.

– work emails are no longer on my personal device

– My tutoring books are closed

– Working on a Sunday is now emergencies only

– Anything past 7pm needs to be completed from bed

That seems like a reasonable step towards not breaking my head.

Almost Cut My Hair… Then I Did

Ever since I decided to write this blog I’ve been humming the Crosby, Steel, Nash, & Young song that my Dad used to play me as a kid… 


Actually, I did this a few weeks ago before we went away on holiday, but I wanted some time to get used to it before I blogged. 
As some of you know, I’ve spent a great deal of this year wearing headscarves (officially a tichel) to make light of my hair coming out in clumps at the start of the year. I kept it long despite the daily winding up of balls of hair & needing Mr Geek to wash it for me because 1. I couldn’t get my arms up to shampoo & 2. The weight of my wet hair needed me to support my head with my hands. I did this because, well, I gave long red hair. That’s who I am. Until I snapped.

My GP has now put me on an extraordinarily high dose of vitamin D, which I just don’t process and my hair has recovered in as much as my scalp is covered once more. It’s also had an impact on my energy levels & I’ve stopped falling asleep mid conversation for the most part (now, it really is because you bore me).

But I wanted to look “better”. No matter how funky I made my headscarves, being in a wheelchair, they just added to the “sick” look. So I marched my family into the hairdressers & whilst the kids were having their Pre-holiday trim, I asked them to lip off 1ft of hair from my head. I had a vague style in mind & handed her these two photos announcing that I wished to have a midlife crisis & hang about playing the ukulele.

She looked at me & asked if I was completely sure I wanted to cut such long hair & if my husband minded me having so much hair cut off. I opted for even shorter. In my mind, the end result would be the catalyst of me dropping the uptight image & Boho my way through the summer with potential ukulele based nudity.

The reality was close to my mental image even if it took a while to work out how to style it (I have natural ringlets- who knew!?)

From a practical point of view washing, brushing & styling is all infinitely easier with shorter hair and the front is long enough to still be clipped up out of my face.

From a deep down emotional point of view, this is another thing that EDS took away. I can’t manage with long hair anymore & gave in. I loved my hair & to a point also loved my scarves which I will continue to wear when I feel the need to cover  (I didn’t when we went out in Germany & surrounded by women in hijab, I rather wished I had covered some days as a safety blanket). I need to set about working on the new ‘short hair’ identity. It’s still red, but not as red (or pink, or green) as I’d like it to be, but give me time…
When I get back to work, I’ve set myself the mission to tame it into looking more like this:

For those of you who haven’t come across Fleabag, search it out on Amazon (or BBC3 if you’re in the UK). Her hair is amazing. Oh, and the show is tremendous too.

So there you have it – good hair news in that it’s healthy & returning thanks to hearty vit D doses, and other hair news in that my midlife / chronic illness crisis has left me shedding any high flying career ideas that may have once been top of my Maslow triangle,  instead, with holes appearing at the bottom of the hierarchy, I’m reverting back to by teens with a life goal of obtaining that dishevelled & slightly unwell, but still oddly sexy look a la Courteney Love, and a Palmer etc. and playing the ukulele naked somewhere. Now after 2 cesareans, emergency surgeries, & a penchant for Milka, no-one needs to see that!

Just for reference, I was prattling on about where I sit on Maslow’s Hierarchy of Needs – like the foundations of how to be a happy & fulfilled person – without the lower tiers, the higher tiers fail. Based upon this, where are we do you think?

Reduced mobility & Boho clothes are really very suited. There’s another blog right there. But for now, what was your biggest thing you “gave into” because of disability?

Blogger Recognition Award

I received a surprise post with one of these from Ren of Broken Down Body (how lovely!! And thank you so much!). It’s lovely when other bloggers make a point of telling you they like your writing (& a tiny bit affirming as so many of us blog in place of verbalising!).

I love reading her blog as it’s a different view of Ehlers Danlos Syndrome which we share and she handles things with far more grace than I do!

Anyway, the idea of this is to write a blog in which you follow

The Rules

1. Thank the blogger who nominated you.

2. Write a post and display the award.

3. Share in your post a brief history of how your blog started.

4. Give advice to new bloggers.

5. Nominate other bloggers you feel deserve the award.

6. Let each blogger know that you have nominated them.

So, without further adieu here it is:

1. Done. (See above)

2. I rather think the is it… (see image above)

3. How my blog started:

I’ll admit, I had to scroll back a while to find out where all this started in early 2013, but apparently I arrived on this blog with a bang, or rather a mooncup. I’d written a very personal blog before, but decided on the grounds of mental health I would remove my previous blog and start this one. Initially it was a bunch of random topics about being an insufferable geek, mother, and teacher. Looking back, it was clear where it would end up with my physical health & mobility rapidly declining throughout the lifetime of my blog. In its current evolution  (this is not it’s final form), I blog about teaching, Ehlers Danlos Syndrome, disability, and accessibility.

4. So …dear new blogger, 

Expect some weird comments. You can’t control who reads your blog so be careful posting too many personal details. Don’t use people’s real names (but people will get to know who ‘they’ are).

Most importantly, don’t ever read the search terms & if you get a troll, screen capture them and blog a response. You’ll find 95% of the blogger community will get right behind you.

5 & 6. Nominating other people is hard because there are so many amazing blogs out there. Instead I’ve nominated those people who have made a real impact on my life.

Mom Goes On – I feel like we’ve been blogging alongside each other forever & she always leaves such lovely comments for me. Thank you xx 

JBOT | Adaptive Disability Lifestylewas the blog I turned to when Ehlers Danlos really started to kick my arse. Her written advice kept me sane in the wee hours (and she’s lovely on Twitter too). I genuinely wish she was my OT.

Sarah in Wonderland is another person having fun with EDS… but in style. I actually met her on Twitter & she is always there for my 2am outbursts! She’s also convinced me to keep trying to look human despite major pain.

Vicky at Around & Upside down is another Twitter friend  (are you getting a pattern here?) who has seen me through a few difficult nights. Eventually we’ll write that chronic illness ahem ‘book’ together!

Sarah from Bloo n Stuff because she’s outspoken & insufferabley chirpy! And has very good hair.

Also, an honourable mention for Polishing Dookie because her shit is funny.
So, there you have it. One award & paying the love forward to these wonderful people. Mwah xxx

The Most Accessible Mountain in Europe 

Four generations ago, my paternal family made a long journey by foot to Canada from Germany. They originally lived in a small village near the top of a mountain in the Black Forest bearing their name. Until I married Mr Geek, I too was a Feldberg. 

I don’t know a great deal about the background of my paternal family and with the magnifying glass of a disabling genetic condition, I grabbed the opportunity to connect with my past with both hands.
Feldberg stands with the highest peak of the mountains in the Black forest. Unlike the mountains of stereotype, it’s covered in trees until you reach the peak where instead of rock & bare nothings, it’s grass; as the name suggests “Feld-berg” = “Field-mountain”.

To get to the peak, you can walk up the wooded, or meadow pathways. Or, like us, you can take the Feldberbahn to the top. In the summer months the ski lift chairs are replaced with gondolas which are not only enclosed & safe for children, but accessible for wheelchairs! They even stopped the cable cars & popped on a ramp to help me in.

It was a beautiful ascent even if the weather was cloudy & at 2200ft at the entry to the cable cars, flipping cold! (13° as opposed to 23° at the hotel). By the time we reached the top, we were a little over 3000ft above sea level and the wind let us know that we were on top of the world!

From up here, you can see across the Alps and breathe in the smell of the forest. Someone recently suggested that no one likes for trees & would want to protect them – well, take a look at this view & choke on your words.

It’s difficult to genuinely give an idea of what it was like to be up there, but if you have (or want to download) the free Google Cardboard Camera app, you can download my panorama photos here (The new Cardboard camera let’s you take a photo in 360° but also records the sound to go with it to enhance the experience)

By the Feldberg viewing tower
By the monument

Unfortunately, the Tower which contains the Ham Museum (yes, you read that correctly) is not wheelchair accessible, so I sat in the sheltered of the entrance. Whilst I was sitting admiring the view, the clinking sound of bells arrived and holy sound of musicals, a herd of billed cows ambled to the grass at the top of the mountain & stared at the visitors with the look of disinterested confusion only a cow would give.

Taking the cable car back down the mountain, we went in search for lunch. Walking past the more touristy places & gift shops around Hotel Feldberg, we found a much older guesthouse just along the road. We were very pleased to have ventured a little further as we were greeted by the owner who happily made space for us & my chair. It was enormously inaccessible  (I had to only hope that I didn’t need the loo as there was no way I was getting in there!), but oh my word the food was incredible!

As someone who doesn’t fate well with onions, or heavy meat dishes, I’m racing through my Omeprazole at a rate of knots, but the Bavarian meatloaf with roasted potato was soft & tasted beautiful. Vaguely like posh spam. My waistline is suffering! I’m even able to enjoy the local beer as most varieties are available as alcohol free & taste just as good! This is great news & means I can sip away & not interfere with my daily doses of poison.

Sadly, our visit was cut a little shorter than I’d hoped as I was feeling lightheaded & exhausted. A combination of altitude, carbs, pain, and overdoing it kicked me up the arse and I lost the ability to function any further.

After a final loo stop & a dose of painkillers, we headed back to the car as it started to rain lightly with me making noises about wanting to visit the Feldberg schnapps museum on the way home….

… I woke up with 5 minutes to go before we reached our hotel. Ah. Bugger. However, I went to bed tonight contemplating where to hang our Feldberg cuckoo clock. I may not know any more about our family, but I do have an image to attach to the spattering of stories I have heard.

#spoonie #blogs about #chronicillness (hashtag city)

See that? That’s my final spoon flying into the distance. Off it goes along with my ability to appear like I’m coping.

A year ago, I said I’d be happy if I made it to Christmas with my job and life in general in tact. I pushed for medical help & I’m the end paid for it as it was not forthcoming locally.

At Christmas, I was determined to make it to the end of the year (academic, so July. I know, us teachers even mess with the calendar). Since then, the liquid food is almost gone & I’ve gained most of the weight I lost (meh, would’ve preferred not to, but health over flubber). By my own criteria in two weeks I will have won. Made it to the end. Two short weeks currently feels like a lifetime & I’m not wholly sure I’m going to get there.

Let me tell you about EDS fatigue. I’m writing this whilst I clock watch because in 15 minutes I can take more painkillers. I’m exhausted, but every time I lay my head down I’m jolted awake by the pain in my legs & shoulder… & neck. I have a migraine brewing at the base of my neck & pushing against my eyeballs. 13 minutes.

I took on too much this week (normal teaching + new form induction for year 8 + year 5 taster day + parents evening). Tomorrow is Friday, but also sports day #2. I’d sent a concerned email to PE about my ability to trek across the field and through trees in potential rain to the athletics in my powerchair, but was assured that the field was totally accessible and the weather would be “hot and sunny”. Actually, it was chilly and drizzly and whilst the powerchair did make it slowly this was not without having my bones shaken out of place to a point where I took oramorph at school for the first time in several months. I have to do this again tomorrow. The fear of adding to current pain levels combined with zero spoons = no sleep and rising anxiety levels.7 minutes.

The question should be asked at this point, why don’t you just put the blog down and get some sleep?

Well, here’s the thing about fatigue and EDS. Imagine you got up at 4am (bleary & a bit confused). Now stand up holding cans of beans in each  hand – raise your arms & keep them there… how long? Well, all day. Gravity isn’t working in our favour – where connective tissue fails, simple lifting of your own arm can be exhausting and eventually painful.

Now you have another tin strapped to the back of your head – tilt your head back and look at the sky. Same thing – All. Day. Spines are there to keep us upright. Unless the connective tissues are lax meaning that sitting up straight, or holding your head up is akin to doing situps all day. I wobble between focused controlled posture & slumpy withered flower.

Finally, get home and drink three cups of coffee before bed because your autonomic system is wrecked and thinks it is bloody hilarious to release a shit tonne of adrenalin into your system as you try to rest. Couple this with overnight hives due to mast cells chucking out histamine in reaction to the drugs that keep you from becoming one of the zombies from 28 days later through sheer pain levels, and EVERYTHING IS JUST PEACHY.

So yeah, when I grit my teeth and sing song “good morning! Yes I’m fine thank you. Nearly there!” at you in the morning, I’m doing it to hide the rocking quietly whilst I do mental battle of “I can’t do this anymore…” with the “yes we can!” chant missing in action. 

Times up. The cavalry has arrived.

Let’s Talk About Sex Baby….

A while ago, I wrote about how we were maintaining the mechanics of still getting it on (much to the disgust of our kids). However, there remained a few things that left the elephant in the room staring at us with “that look”. The joys of Ehlers Danlos Syndrome mean that no part of me isn’t stretchy to some degree and throughout my life, that has had some interesting sexual impacts.

My back pain began in my teens – I remember walking around Sainsburys with my mum doing plies holding onto the shopping trolley to just take the pressure away from my lower back. It was also around this time that I lost my virginity and had the weirdest conversation. Initially, I took it as a compliment that my then boyfriend asked if I was sure that I hadn’t ‘done it’ before. I was clearly a pro…

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But then he argued that it should be tight and hard to ‘get into’ a virgin & I wasn’t. As first times go, this was at least memorable if not massively offensive. For reference boys, this is shit pillow talk and pretty much sealed the deal for me to piss off and date his best mate. 

I spent a good deal of my teens & early 20s tired (I once fell asleep on a base speaker in a club) and back pain continued to twinge. But it really went for it in my early 20s & more so when, aged 24, I carried Beanpole to almost term (she arrived at 35 weeks after medical intervention to keep her in, 16 months later TinyPants plopped into the world at 32 weeks in a similar way). Back then I had “it’s just back pain” & “all women get SPD”. What I didn’t know was that my tendons were stretching through the magic of hormones & had no intention of snapping back up like youthful elastic, preferring the more relaxed overcooked spaghetti look.

The ligaments you see before you hold a woman’s pelvis together. These are strong rope-like connective tissues made up of collagen (That’s the glue that holds us together, and also the tissue that is affected in people with EDS). As we get older, these can get tighter meaning that we lose our range of movement. For me, this means where I could once lay on my back and place my feet square on the floor touching my shoulders, I can now only lick my own feet. Excellent party trick, superb pulling technique, utterly inadvisable.

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So, why the image? What has this got to do with sex?

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Well, with progressively looser tendons, ligaments, & muscles, I caused a number of interesting injuries to my pelvis & spine over the years & by the ripe old age of 36 have racked up herniated discs at s5/S, L4, L3, T4, & C5 alongside having dislocated my pelvis itself and dislodging the SI to an extent that the joint that shouldn’t move does in face shift on a daily basis. Most of these have been treated using rest, anti-inflamitories, and over a decade of opiate based painkillers. I’m thankful for this, having reacted badly to facet joint injections and with surgery not advised with EDS due to complications & healing time. The down side of this is nerve damage. I no longer have real sensation in my feet (as noted when I had to be told that I just tipped boiling water on my foot this year!) and my pelvis is equally affected in the no sense, no feeling category.

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It’s been a gradual decline, but the past 12 months have brought about a requirement to be aware of the sensation of needing to pee which isn’t always obvious. It’s either all or nothing, and by the time I am aware I need to go, it’s often at critical mass. To my utter horror, on a few occasions my body just hasn’t cooperated in being coordinated enough to get onto the loo with pants down pre-release. This is the grim indignity of a body that resembles a car that hasn’t been MOTd in years.
The bladder isn’t the only internal organ affected by EDS that requires evacuation  (look away now readers of a delicate constitution)… a combination of being stretchy & taking opiates has equated to an interesting dance with IBS. There’s very rarely a nice happy regular medium, but more disconcerting is what once used to feel crampy or bloated, now feels nothing. There is essentially no urge to go aside from a thought process that says I ought to. It’s a set of symptoms that once sent my doctors into apoplectic frenzied activity and now appear to be a sign that I’m still holding things together by managing them.

The one thing that hasn’t been discussed with my medical team (and this post is partially me getting my thoughts in order for bringing it up at my appointment tomorrow with Pain Management) is the lady parts.

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Mr Geek & I started off our relationship by necking on his bed & pretty much only left it for essential food & more wine for the next few months. This laid the foundations for the following decade of lusting after each other. He can still make me go all wibbly by biting my lip, or just stroking my cheek. Suffice to say, sex is quite high on our list of marital priorities. So when I began to struggle to enjoy it quite as much as he was, we started to worry. Initially, we put it down to pain levels (Although, actually a bloody good orgasm is a massive pain reliever), and then the cocktail of drugs, but eventually as my legs showed more signs of losing feeling and the ‘saddle’ area around my perineum felt numb, we realised it was nerve damage.
So how do you continue to skew the mean average marital sex figures when you’ve gone from multiple porn like orgasms when he so much as looks at you to struggling to maintain lubrication let alone pull a Meg Ryan. Well, just like every other aspect, we adapted things:

Not everything in life has to be home made & the same goes for lubricant. Water based lubes and my skin don’t mix, but a liberal application of coconut oil (approx. £5 in Tesco / Sainsburys, or posh stuff from Waitrose gives the added amusement of looking them in the eye as you buy it, knowing damn well that this is not for plummy middle class baking, but will be making your genitals taste tropical!) not only works a treat, but smells great too 🙂 It also has a beneficial impact on the tiny tears that I’m prone to where my skin is paper thin.

We’ve had to start again with my body to work out how to get the engine going again. Picking up some good vibrations with a padded vibrator will often do the trick (if you have loss of sensation, do not use a hard vibrator – one word : bruising). Don’t feel bad about needing some individual time with this initially. When you’re already falling apart, navigating 2 sets of overexcited hands can cause things to get lobbed across the room in a strop… whereupon the thing is still quite literally in motion across the bedroom floor. Cue laughter.

Physically, the earth might not move anymore. The muscle contractions remain, as does that lovely flow of endorphins, but what once was a Thunderclap is now muted to a muffled rumble. I won’t pretend that it isn’t upsetting, but I’d rather a rumble than just rain.

Keep the light on. When one sense is dulled, another takes over, and with 90% of my old moves far to painful to attempt, there’s nothing series than seeing Mr Geek get undressed. I’m thinking less with my crotch and more with my mind (yes, women also make decisions using that brain in their pants).

Switch positions. Use every pillow known to man. Make the most of that adjustable bed. If it doesn’t feel good, don’t do it. We’ve surprised ourselves by getting into easier positions for my joints, then discovering that… OMFG keep doing that!

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With all these adaptations, we’re coping well, but there’s still a little voice in my head suggesting that I mention it at pain management and see if they can suggest other ways of adapting our sex life, or even if there’s some magical way that I could resurrect my clitoris Jon Snow style.

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Live to work, or…

At the start of the week I commented to the lady who drives me back & forth to work that this term doesn’t feel as long as last. After a week of migraines, popped out shoulders, & cold limbs, I take it all back. I’m not wholly sure how I’m going to drag my wobbly aching carcass through another week of this. EDS has once again knocked me flat on my arse. My current days are going something like this:

6am
Mr Geek wakes me up by stroking my back, then helping me stretch out & rubbing my feet & legs until I can tolerate using the crutches to get to the loo. Then he gets out my clothes and helps me get dressed (all the while discreetly checking that I’m not going to topple over from a limb giving out or just plain potsy fainting).
Right now, mornings are hard. I wake up feeling like I’ve been hit by a bus & am making it to work not through guts & determination, but because of Mr Geek physically moving me through my morning routine & fear of losing my job. Even the idea of cutting my hours puts me on edge – despite the potential for feeling physically better and actually getting to spend some time with my offspring, not being full time makes me more dispensable & if Mr Geek stops working from home, there’ll be zero buffer against people talking at me (no rest potential there – may as well be herding kids).

6.30am
Sat on the side of the bed, Mr Geek brushes my hair into a sock bun whilst I attempt to plaster my face in enough self-tan moisturiser, concealer, eyeliner, and contour the living crap out of it until it submits to looking human. Final touches – my headscarves to protect my hair from breaking, because although it’s looking healthy again, it starts matting & breaking the minute I leave it out.

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Mr Geek saves the morning yet again here surrounding me with my baskets of morning drugs & make up. He doesn’t leave me until everything is in reach.

7am
Down the world’s slowest roller coaster to my chariot awaiting me at the bottom of the stairs. It’s a work day, so it’s The Beast. The powerchair is necessary as 8 hours+ of self propelling is arm rippingly painful.
It’s weird, the powerchair is built specifically for me, but I’ve come to resent it. I’m passive in it. In utter contrast, Leonardo (my manual) is an extension of me.
As I get into the kitchen, Mr Geek hands me coffee & hot milky weetabix which perks me up enough to kiss the kids goodbye and wheel myself into the taxi and off to work.
I don’t want to be leaving the house right now. I want to crawl back into bed & rest my bones that won’t hold me up. I want to cuddle up to Mr Geek and giggle over my snap crackle and popping joints when he cuddles too tight. I want to sleep. But, instead I put on a big smile & say good morning in my Oscar winning performance as girl who is coping.

7.40am
Off to work. Bones rattling. Pain levels increasing. The chair is strapped down in the van, but I am not. I wobble freely over the hill wincing at the cattle. We’re both headed for vets soon.

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It's not a terrible view on my commute

8.15am – 4.30pm
Holy hell in a handbasket. There’s a blur of 100+ students, marking, worrying, patrolling of corridors. They ground me & remind me that my little whirlpool of pain isn’t the whole world. There’s other shit going on & if I don’t vacate my pity party right now, I have a shit-tonne of kids to dissapoint. And that’s not going to happen. They couldn’t give 2 hoots if I’m on my feet, in a chair, doubled over in agony, they need entertaining & their little sponge minds filled with the stuff I’ve got. Life goes on.

There’s also a rising tang of pain that exudes from my hips and hands and across my body. Painkillers and work don’t mix well, so let’s suck it up for a few more hours…

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5pm.
Home. Kiss kids.
Lay on sofa. Oh God my head / joints / back / [fill in the blank].
Nap.
This is probably the most restful hour of sleep of the day. It’s delicious.

7pm
Wake up to Mr Geek trying to talk to me and waving food in my general direction.
Then straight to bed & set the bed incline to sat up with raised feet whilst blogging / watching TV until the evening drugs kick in enough to let me pass out again.

To sleep. Per chance to dream.
I wish I could sleep.

It’s a miserable way of looking at my days, but it’s my reality during term times and it becomes a harsher reality as the term goes on. This half term is 7 weeks, as is the next one. Most holidays I’ll keep working from home to stay on top of things, but this half term I’m planning to rest.
I’m not wholly sure what the long term goal is now. Right now, what we’re doing is just about physically surviving the week, then treating every weekend like it were a tiny holiday (and getting mightily frustrated if time is ‘wasted’ not making the most of our down time. Ironic eh?).

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Ehlers Danlos Syndrome (EDS) Awareness Month

Awareness comes in many forms. In the case of a rare genetic condition, this can be both positive & negative. Surely, I can hear you say, there’s no such thing as bad publicity. But when it comes to a diagnosis, there can be.

May is Ehlers Danlos Syndrome awareness month & as part of that, here’s my two penneth to add to some already outstanding posts. (Be warned, this is more the ramblings of an insomniac waiting for the next pain relief window!). It’s taken me a few nights to write this as there’s an awful lot to get through!

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Along with a number of other people, I’ve come up against that Rheumatologist who decides that he knows better than the specialist consultants. That one (generally older) doctor who sits back in their chair and regales you with tales of how certain diagnoses are “in fashion” and a private consultation will of course result in a diagnosis because you paid them. They make you doubt your own diagnosis even though you know your body best & they met you 10 minutes ago. At best, these doctors are breaking the hippocratic oath by following their own agenda instead of doing no harm, at worst they’re downright dangerous.

Even in support circles for EDS, there is a disturbing undercurrent of symptom competition – I’m much sicker than you, so you can’t complain. In doing this we don’t help ourselves. Support online is about being there for anyone on this unpleasant spectrum. And understand that we all have our personal pain scales – a 10 for me may be a 7 for you, or conversely, you may be unconscious by my 7.

My own experience of EDS differs from other people’s as we all experience symptoms on a spectrum. I have a diagnosis of EDS type 3 with classical (type 1) crossover because of my weird skin.

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My main daily issues are that my limbs refuse to stay attached to me. EDS itself is not degenerative. However, it appears so as each new dislocation or injury leaves more scar tissue, or joint damage, creating pain & disability. No one entirely understands us, and there is an awful lot of stories of our conditions taking a sudden nose dive after an illness or accident (mine included). During a flying visit from Mrs Gypsytree this weekend, my daft Sherlock said how she remembers coming over for her final goodbye evening whilst I was suffering with viral bronchitis (and coughing ribs out of place). It was shortly after she left for Ireland that I went waaay downhill & she’d wondered if she’d just left me to rest if all this wouldn’t have happened. Oh Sherlock, you don’t control my collagen or genetics. Although it is your fault that I have to argue with Easyjet on a termly basis to come and visit. Because even sticking me in a chair then moving 600 miles away doesn’t let you off the best friend hook.

Having been undiagnosed for over a decade since real chronic pain set in, I caused permanent nerve damage in my pelvis & back through following physio for “normal” people after 2 prolapsed discs, several more bulging discs at multiple levels, & dislocating my pelvis. I pushed through the pain not realising that actually I was making everything worse. Fast forward to now with me as a full time wheelchair user & my pelvis and hip sublux daily, my knees twist and both patella move freely, my ankles turn in and that’s just my lower half! Pain is a thing that just is. Stuff pops out. We put stuff back on. If we didn’t, I’d live in A&E. Why cause more X-rays when we can fix me like Lego?

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It’s not just the bottom half. Most of the time I use a powerchair, but I’m keen on using my lightweight manual around the house & at weekends to build up the strength in my arms. Just by doing this small amount of exercise means that my shoulders may stay where they belong more often! The flip side of propelling is shifting ribs – this morning was a good example of this. Eating breakfast, I realised I couldn’t breathe because of a horrible sharp pain in my sternum. Placing my hand on the outside of my ribcage & pushing, I felt (and heard) a clunk as the rib popped back in. Grim eh?

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Ah the shoulder knots. The hours that Mr Geek has spent digging his thumbs into those stubborn knots that just won’t bugger off… muscle knots do have a special name that slips my mind right now (edit: trigger points). But they are tiny bits of muscle that were tense then forgot to stop being tense and cling onto a bit of lactic acid and become a hard lump. When squeezed, my shoulders feel like they have rice in the muscles and like any muscle that are constantly tense, it aches & causes tension headaches. Again, exercise helps, over-exercise hinders. I’ve not found that fine line yet.

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A perfect example being today. It’s Saturday, the sun is shining, the tank is clean… I woke up knowing we’d planned to take the bikes down along the prom and cycle to the local pool. So double whammy of sunshine and floaty floaty pain relief. I managed the whole thing on minimal pain relief (and a lie in & nap in the morning), then we got home and after dinner BAM! I’m freezing cold & exhausted & my legs feel like I’d actually cycled instead of using Leonardo (my super awesome wheelchair electric bike). I messed up my pacing today, but it was utterly worth it. Check out that wonderful blue sky!

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A nod to my tiny babies in the gif above. We had no idea why my pregnancies were fraught with issues, from SPD to full dislocation, to my waters breaking at 35 weeks, then TinyPants at 32 weeks to the day. You’d think with an extra stretchy body, labour would be easy, but oooh no. 52 hours of making farmyard noises, then an emergency c-section because her massive head was stuck in my wonky pelvis! Then healing from a c-section. Which isn’t meant to go ‘stand up after 6 hours & stitches rip through you like cheesewire’. Also, ow.

It’s all forgotten now though…. ish.

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Oh yeah, and that epidural I screamed for? Didn’t entirely work. I take an awful lot of painkillers these days, & I’m remarkably coherent for someone who maintains sanity with morphine. This was illustrated when an ovarian cyst ruptured one of my ovaries. The surgeon conversation went a bit like this:

Me: arrgh!
Doc: But we’ve given you morphine, you shouldn’t be able to feel that.
Me: but I bloody well can! Are you sure that wasn’t just water?
Doc: No, you clearly can feel that. Weird…
Me: go away until you’re qualified Dougie
Doc: could someone call an anaesthetist?

I feel bad now for being mean, but at the time I was having my rapidly dissolving ovary poked with some force.  Of course they thought it was my appendix at the time, but we’re baffled that it took enough sedatives to chill out a sumo wrestler for me to stop squealing.

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As a general rule, I do try to be a nice person. But like anyone, I have a pain limit. Or rather I have particular pains that drive me more crazy than others. The one that is guaranteed to turn me into a howling banshee is TMJ pain. It’s the jaw joint & muscle. Sometimes it pops out, other times I clench my teeth without realising and the joint pain feels like the worst wisdom teeth pain. It makes all of my molars hurt & causes immense headaches that just sit around my temples and make me with PMT look like Julie Andrews.

It helps to try mindfulness and focus on relaxing the jaw and allowing the muscles to stop being is spasm. The flip side of this is looking less intellectual than Donald Trump.

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It’s not just the jaw that takes a battering. But the teeth & tongue. My teeth have always been crowded at the bottom, and they move on a monthly basis, but I’ve learnt to smile in ways that hide them.
My tongue is particularly hypermobile  (I know fnar fnar), but actually what this means is I can touch my nose with my own tongue (known as the Gorlins sign), but also lose control of it regularly and bite it. I have to think when I chew, not talk!

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My sleep patterns suck. I’m in bed early evening without fail, but blog and read and Facebook and tweet as vwhilst my body is shot, my brain is having a party!
Who knows where these weird sleeping patterns come from, but it’s possible that other linked issues such as POTS or general dysautonomia play a part here.
The bags under my eyes play witness to the fact that I’m unrested!

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And after all that self indulgent whinging about how much EDS sucks, you know what? It’s not all that bad. Most (not all, but remember this is a spectrum), with the right support from a knowledgeable team, and ongoing support from Occupational Therapy and Physiotherapists can live an adjusted but still fun life. Mobility & living aids are just that, they help make life easier and there’s no shame in using them if and when they help. Leonardo (the wheelchair cycle) may be great for getting me out into the open, but he’s also improved my state of mind tenfold.

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I can’t praise my OTs enough. Out of everyone, they’ve looked for solutions & told me that they’d kick my arse if I thought about giving up. We’ve both agreed that my pain levels sky rocket whilst I’m working & level out during the holidays. We’ve also agreed to say bollocks to it and do everything in our power to keep me working. If only for Mr Geek’s sanity. If I was at home, I would drive him up the wall!

They think of him too. After all, he’s the one who gets me up, helps me dress, gets the kids ready, cooks us food, and holds down a senior code genius job at the same time. This week my lovely OT ran through the standard checks with him that he’s ok & are we sure we don’t want a carer. I remain in awe of Jo Southall, a fellow EDSer and trainee OT. Talk about using what you know!

So there it is. A few snippets of my own experience of EDS. Life isn’t over when your joints say it is. There are ways to reduce the degree to which you are disabled, not by changing your body, but by adapting your environment and taking care of your head as well as the strange stretchy housing that your head lives in.

So from me. If you know someone with EDS, give them a gentle hug from me 😉

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It’s Going To Be Thunderous!

… or at least I hope it will.

Yesterday, brought some very exciting news that my last post had been featured on The Mighty – the online disability magazine. Cue several hours of not sleeping because I was excitedly clapping on twitter about this, then rich tea biscuits. Because, well, Twitter.

Today, continues in this over-excited vein with our Thunderclap Campaign nearing it’s end (3rd April) with a current 88% support rate and 4 days left to run. That’s 12 people I need to convince to pledge a (free!) support message via Twitter, Facebook, or Tumblr. This is technically easier said than done.

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The first day was very exciting with over 25% support, this went up for over 40% by day 3. But then it slowed. We’d run out of people to reach via our own social channels and had to let the campaign simmer over the next 2 weeks (you have 14 days to collect 100+ supporters). Things picked up again, the past few days, immensely so after a bulk email of our first ever newsletter for Expect Zebras. But I’m twitchy again. That feeling you get at the end of an Ebay bidding war where there’s just seconds left and you could lose that prized item if you don’t watch it like a hawk is there (can you just imagine what this is doing to my POTS?!).

So there we are. Whilst Mr Geek continues to talk the app into playing nicely with our database where I have been furiously adding chronic illnesses, their awareness colours, and lists of potential medications that people want to record, I am set the challenge for the day to get our Thunderclap 100% supported.

Would you help? Please??!

 

Pain? You’re Fired!

I have my first appointment with the Pain Management Team on Monday and I’ll be honest with you, I’m dubious.

I get this feeling that pain is something to be dealt with in a matronly fashion with all this fuss and nonsense put away just so. We’re going to manage this pain out of a job. Actually I quite like the idea of firing my pain….

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There are lots of people who post happy positive posters about not being their diagnosis and being pain / EDS / CRPS warriors. They appear to be using all of their energy convincing the world that inside them is a healthy person trying to get out. I’m sticking with my stoic approach. It’s worked for me for a long time. Let’s look at the objective facts:

– I’ve been in some form of pain for as long as I can remember
– I’ve been seeking help for specific joint pain since 2004
– I have a lifetime diagnosis of Ehlers Danlos
– POTS & CRPS are not permanent diagnoses
– I have 3 degenerated discs in my lower back, my neck hasn’t been MRId but the headaches and arm pain suggest similar.
– I’ve not had an upright MRI to show how my body responds to gravity. That’s expensive.
– At this moment, my mobility is bad. Powerchair bad.

What’s the absolute worst that could happen?
I get worse, or can’t tolerate the pain levels and have to stop teaching completely, rather than my current lame attempt at being a real person and teaching from my wheelchair which has varying degrees of success.

Is that the absolute worst? Seriously?
No, it’s relative to current situation, but I refuse to entertain any darker thoughts about remaining in this much pain. There are much darker thoughts. They pop up more than I care to admit.

When I look at those people who are ‘pain Warriors’, I know that’s not for me because for me, there’s no point wasting energy I don’t have pretending not to be in this situation.  It sucks yes, but this is my reality. Denying that pain, or joint dislocations exist is the kind of stupid “I’m fine!” attitude that landed me in a chair. That and shitty genetics.

So, apparently we will “manage” the pain better and hey presto, angry cornered animal returns to serene Swan. Pain management seems the way forward. Or at least it’s the thing that all the specialists have said after they shrug and tell me that they’re not that well versed in EDS, or POTS, or CRPS, or any other medical acronym that has stuck itself to me like an irritating bur over the past few years… Months ago I was sent a pile of questionnaires to complete about my pain. A whole host of the questions in these were vague and repetitive. For a (computer) scientist who finds holding a pen painful, I want a to the point assessment with minimal writing – online if possible. I don’t want to fill in three million on a scale of 1-10s about how much I can still do “things”… what things? I still enjoy eating cake. I’m not such a fan of rock climbing these days.

They even included this one. Twice. The pain is zen. I am the pain. The pain is everything and everywhere. It hurts…. HERE. As in, in this room.

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It put me on the defensive because the data analyst in me extrapolated 3 questions from all of these questions:
1. Are you faking it?
2. Are you a hypochondriac?
3. Are you mentally ill?

No, No, and no but I’m starting to wonder. I’m in chronic pain & like Obi Wan Kenobi, you’re my last hope.

Anyway, my appointment came through telling me that I would be seen alone and then they would decide if my companion could join us. Err, no. He’ll be coming in thank you. Do I sound a bit defensive? I guess I am. This is now my bog standard reaction to medical professionals that scare me. And anyone who may want to physically examine me, stands a very real chance of holding a disembodied limb by accident. This was the case with the Rheumatologist who just put that shoulder back where he found it and hoped no one noticed. I did notice. It hurt.

When I was pregnant I growled an obstetrics consultant out of a room backwards when he suggested I wasn’t helping my blood pressure by getting angry at him & that high BP makes women “a bit crazy”. Again, in seething agony from what was diagnosed then as SPD and spontaneous labour, I wanted to be listened to and given answers. Not patronised.

Exhibit B: every nurse / anaesthetist who scoffed at my suggestion that I’m hard to get blood from. I tried donating, the British Heart Foundation lovely lovely nurses declared that I bleed less than a well done steak. The 15 minutes, 2 nurses, & 3 pediatric needles required to do my blood test last week ought to be proof. The cumulative result of people not listening to my knowledge of my body was an anaesthetist running around my head shouting “Shit! Shit! SHIT!” After yet another canular collapses and my BP plummets mid c-section.  Everything goes white…. the pearly gates rang out the expletives of a tubby man in scrubs who knew better.

Exhibit C: The NHS Rheumatologist who I pinned all my hopes on (because whilst the Hypermobility Clinic is amazing, it’s also expensive) then pulled out my shoulder & caused me to pass out during the physical after sending my HR through the roof. After all this, he tells me that Rheumatologist don’t deal with EDS, that my pain is caused by lack of sleep, POTS is just deconditioning,  thank you and goodnight. No interest in helping to check the other symptoms  (difficulty swallowing,  brainfog, gastric issues, weird bladder, steaming headaches). Since then, GP has referred me back to London & a cardiologist. Still stuck on the GI front until I can’t eat solid food at all. Nice.

Exhibit D: Physiotherapists. Who, to give them credit probably know far more about the body as a whole than orthopaedic consultants. But traction is not the answer for everything – actually, the answer to traction was permanent nerve damage. Pain when you have unstable joints is not gain, it’s pain. I’m not sold on infrared… waving a light over a slipped disc (or 3) then charging me £60 doesn’t seem all that worthwhile. And the NHS ones recently refused to see me after a telephone consultation because they only do one body part at a time and I’m just to darn complex. A&E keep referring me back to physio after each major dislocation, but they’re not keen.

So here I am staring at Pain Management. I’m on day 5 of a CRPS flare that makes me want to hurt people as throwing my whole basket of drugs at it, just about keeps me at a point where I’m coherent. But not sleeping. They’re going to want me to put into words what it feels like, I can describe EDS pain, but CRPS is different and less obvious externally. So I’m going to take this post with me so I don’t forget (or if this continues, in leiu of speaking).

What does my CRPS feel like?

It’s based around my pelvis. I visualise it as a the facehugger from Alien that is more of a arse man. It’s attached itself to my SI and sunk it’s teeth in. On a good day, it’s teeth are made of glass and it chomps down if I stand, or sit, or don’t shift about enough. The glass grinds in my hips. Stretching helps release its jaws, but it’s temporary, so I keep it sedated with Gabapentin.

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On a bad day when it flares, the facehugger is grinding it’s glass teeth together and I can feel my SI move  (I know it’s not meant to move, but I, and everyone around me can hear the audible hollow clunk of it slotting back into place. Sometimes I can do this just by clenching my buttocks). On a bad day, it has tentacles that weave their way into my hips and legs making them twitch and shake and pulsate with waves of lightening pain. It leaves my feet feeling like they’ve been painted with acid and they burn. On a bad day, the face hugger’s arms extend up my back and poke around with the trigger points in my shoulders. Instead of having standard sore & knotted shoulders,  they are white pain that screams. On these days I cover the facehugger with heatpads and hot water bottles, I use the metal in my wrist splints to rub the aching from my thighs and knees until it’s just the fizzing electric pain left, I keep taking the gabapentin and add oramorph which does little for the CRPS, but reduces the acute pain from today’s subluxations which doesn’t take the level of pain down,  but turns the volume down enough to focus the heat and TENS on just one place. TENS helps. It messes with my brain and fools it into listening to the prickly pain of the machine up at full volume. It’s like drowning out the screams of Dante’s 7th circle of hell with death metal music. Neither are particularly soothing, but the latter is more tuneful.

I’d rather dislocate daily than have regular CRPS flares. A dislocation is a deep purple pain that makes you feel sick. You can RICE a joint and you know what the worst is – a bit like childbirth. We’ve done this before, go through the drill and at the end register another shiny new bruise that won’t let you sleep. The CRPS facehugger isn’t like that. It dozes off, then wakes up with a start and clamps down in different places and with different types of pain.

This week we added a great big swollen red foot to the fun and games. By the time I took the photo, my toes barely moved from being so puffy and my ankles had all but gone. Did they hurt? Yes! But we replaced the chemical burns with the feeling of having water balloons for feet. They felt like they might burst with any pressure. Yum!

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This seemed like a really negative post, but actually by using personification for my CRPS, I’m able to relax through the worst of it. By making it into the “ButtHugger” I can explain it to the kids who see me wince and yelp in pain.

If it’s a “thing”, then I can tell it off and to sling it’s hook.

I’m not holding onto my diagnoses. Im pragmatic. I’ve worked out ways to continue with life. There are therapies like hydro & massage that I’d love to do regularly but don’t have the resources (or can’t find a pool with a hoist that isn’t for horses in the whole county!) . There must be exercises I can do without dislocating, and I will find them.

This isn’t the end Butt Hugger.

 

Edit: post appointment – actually, despite my reservations, the pain management appointment went incredibly well. They were very supportive and entirely understood my concerns about dignity, mobility, and EDS. They were less aware of CROS, but were willing to learn. These ladies are keepers.

 

Thank you to Burning Nights for featuring this blog post on their website. Please follow them on Twitter at @BNightsCRPS ( and me on @ExpectZebras )