Don’t Feed The Trolls

Aww I made it as a fully fledged blogger today with a little passive agressive hate post all of my own. It’s like the internet has accepted me as one of their own. Now, the standard reaction to the comments section on anything is “don’t feed the trolls”, and yet repeating this didn’t exactly work, so I’m going to chuck a couple of statements on here, just in case anyone other than me or Mr Geek reads this.

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I write this blog for me.
Much of my blogging is an electronic format of diary writing. It’s a stream of consciousness which is rarely edited, nor proof read. At most, it’s occasionally written to explain what’s going on to my friends and family.

This is not my job. You don’t pay to read my blog, I’m not here to entertain you, so if you aren’t finding anything interesting or useful, read something else. If however,  I happen to entertain you, make you feel less alone with a chronic illness or highlight something useful,  then welcome to my metaphorical tree house – make yourself at home.

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Photo credit domesticatedmomster

I’m self obsessed here, so I don’t have to be elsewhere.

There are  number of scientific, peer reviewed articles about the benefits of blogging for your mental health. Personal blogs are seen as a safe space in which to let out your inner thoughts and fears without needing to find the words verbally. It’s also a place to verbalise those things which if left bottled up, would niggle away at your state of mind and turn you into an unpleasant person. These reports identify that those who use a personal blog to talk frankly about themselves have a higher level of perceived social support. For me, I have made contact with a wonderful support network who support each other.

In real life, I put on a brave face and get on with my life.

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Once you post online, you no longer have control of it.

Probably the most important lesson I teach my kids. It doesn’t matter if you later regret what you post as there’s this thing called a screen capture.

I hope this particular troll isn’t actually a troll & just another person struggling with EDS who felt wronged by my willingness to call people out on their ill treatment of service users, or felt that they have it worse and as such my open grief over the loss of my previous life is unjustified. I’ll give them the benefit of that doubt because EDS is crappy and without somewhere to vent, can make you angry and defensive.

But through the magic of the screen capture, here is that now undeletable comment.

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And for transparency, my response.

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You probably need your own blog, because after a day of receiving some of the most beautiful private messages of support from my friends since I posted that response, I’ve written another self-absorbed and mindnumbingly boring post which has released all that negativity into the ether.

You won for about 4 hours. After that, my blog won and then there was this:

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What Goes Up, Comes Back Down if You Lay Flat in a Cool Room. Welcome to POTs

Tired isn’t a good place to be. Then tired and in a bath because your bones ache. Except the bath was warm.

I started feeling a bit weird then realised my heart was thumping. Not just thuds, but making my boob shake thumping (yes-  I did watch it with amusement. no – there’s no photos). Thankfully my phone is super cool and has a scanny thing at the back that uses the same medical tech as those clippy things doctors put on your finger. By placing my finger on the back of my phone, it can measure my heart rate and oxygen sats.  This is quite useful when you’re feeling potsy.

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The definition of POTS (or Postural Tachycardia Syndrome ) is a rise of 30 bpm on (or within 10 minutes of) standing or rising. This is also affected by changes in temperature. I currently have an appointment for testing in December having been picked up for symptoms in the summer and having my EDS specialist confirm this is likely having watched my heart rate rise, and refer me on. (My life is one big referral ).

Generally, my resting heart rate is around 60 bpm and regularly falls to 54/55 bpm which is reasonably low but doesn’t cause me any ill effects. Until it starts racing. Which it started doing tonight.

So assuming a more normal starting rate of 60 bpm,  I grabbed my phone and decided to watch my body go crackers out of morbid fascination. A bit like poking a bruise, or a wasps nest…

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Initially, again assuming a resting rate of 60 bpm a rate of 90 bpm just lying in the bath was not anything unusual. But, seeing as my boob was doing a little Tachycardia dance, I figured I’d keep an eye on it and told myself that if I went tunnel vision or it hit 120 bpm, I’d hit the panic button that sends a help me text to Mr Geek.

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I was feeling quite dizzy, but I wanted to wait it out a bit longer before disturbing Mr Geek.

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Still laying down, it crept up. Some people with POTS will currently be scoffing at my measly 107bpm when they easily reach 140. However, it’s not a competition and heart stuff makes different people feel odd at different levels. Anything above 110 makes me nauseous and dizzy.

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Talking of which. Now was a good time to ask Mr Geek for some help. I cooled the water down and sat in my tepid water whilst he shaved my legs & washed my hair for me. As he helped me out of the bath my right knee made an appalling noise and I replaced my patella with an equally revolting snap sitting on the loo seat whilst Mr Geek made gagging noises in the corner. (Welcome to hormonal wobbly week!)

Eventually, I just laid down on the bed and now laying down watched my heart rate slide back down. Just to make sure it would go down and any measurements weren’t affected by breakthrough drugs.

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It’s weird when it does that. It’s not particularly dangerous  (aside from fainting in the bath), but it leaves my chest achey and where I thought I was exhausted before, I can now barely type on my phone (I’ve dropped off three times writing this & it’s taken an hour!).

It’ll be interesting to see what the autonomic specialist says, especially about my inability to stay warm. Until then, more sleep, less heat & continued fascination about my weird body. 🙂

That Time I decided not to leave the house again (or Accessible My Arse)

I had a training course to attend today for work. I’d been looking forward to this as it meant going back to school to do coding. Heaven.

The plan was that Mr Geek would take the day off work and come with me as my assistant in case I had difficulty. (We envisioned this as me not being able to get on a bus, or getting lost, or getting faint and needing help).

What I forgot is that today is Thursday. And Thursdays don’t like me.

We left the house at 7.15am to drive the 30 minute journey to Hassocks station as it is more accessible than our local one which has stairs all over. 30 minutes… nope. 60 minutes. I’m now running late which doesn’t work for me at the best of times. But once we were on the train it would be fine!

Hasocks station ticket guy:  have you booked assistance?  … no, despite using the route planners to highlight we needed a stepless journey, there was no indication that we needed to warn people in advance that we were travelling. Someone didn’t learn from her trip to Ireland that I can’t just be spontaneous now. I was already a bit sensitive about being late, so wasn’t bowled over by being singled out as making his day more difficult. But they got the ramp out and I wheeled into a middle section of the carriage.

Now, a bit worried that we’d miss registration, I emailed venue to let them know we’d be late. All would be fine.

As we pulled up at Haywards Heath to change for our London train, Mr Geek had to call the guard for me (how do you do that from inside the train on your own? ). For future solo journeys, may I suggest a flag on a stick?

Getting off the train was fine, but up onto the Gatwick Express was a different thing entirely. I got stuck on the ramp going up as the train was much higher. Mr Geek had to push me up. This is the kind of thing having a power chair was meant to avoid!

Gatwick express actually has bus style seats for wheelchairs so you’re not put in with the bikes which is nice, but unless you have a slimline chair, good luck getting through the doors!

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Trying to get off at Victoria was verging on hilarious. To get out, you need to tackle a right hand turn the width of the chair, then a narrow passage and doorway out. Now, when you have a turning circle of a small country and the spacial awareness of a bull in a china shop, that’s not a fun task. After a three million point turn and getting very flustered I emerged from the train. Now even later. Bugger.

Step 4 of 5 was to get a London Bus to Covent Garden. The No 24 London Bus had an automatic ramp that just popped out which was great because there was no fuss getting on! I have yet to work out how you get onto a bus and back into the official space whilst people fuss around you and before the bus pulls away. I ended up facing forwards & figured that if I get thrown forwards, I at least have a soft thing to smack into 😉

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(Note that time… we left the house at 7.15, my course started at 10am. Lesson learnt here is that travelling by chair requires at very least 50% extra time for getting stuck, people faffing with ramps, and wheelchair accessible trains with a tiny right turn that touched the wheels of my chair on both sides – no hope of you have a self propelled manual chair).

By this point, being jostled about on trains and busses is causing enough pain to make me feel sick. Handbag full of drugs at the ready!

I’m late for my course, I’m in pain & I’m not wholly sure how to get my chair off of the bus. It turns out that rush “hour” in London ought to be referred to Trading Standards. Our top speed was slower than my chair! It took us 45 minutes to do 2 1/2 miles!

So 4 hours to get here. And now it’s raining. Ffs.

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Final step was a 10 minute “walk” which involved me grumbling about Mr Geek having told me that the weather was ‘mild’. I was cold, wet, and eye level to every cigarette in London. Btw – umbrellas are a wonderful invention,  but if you put them in front of your face, the angry woman in the wheelchair you’re walking into is going to tut at you. And flinch because that thing is pointy!

Having emailed a month in advance to double check that the venue was accessible, my Thursday just continued. The training itself was on the 1st floor (woop! Lift) & we arrived just in time for coffee. The one and only accessible loo was downstairs, so off I trundled. Then realised that the lovely wide doored accessible loo was behind two narrow wooden doors. No prizes for guessing who smacked her hand on the doorframe.

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Just before lunch, the trainer called a member of staff to explain how to get up to lunch. She arrived and explained that the dining hall was up on the 2nd floor but there were stairs, so could I leave the chair at the bottom and walk up? …. That’s sort of not how the wheelchair thing works? Ok, yes if I’d had my crutches I could’ve gone a few metres, but not up stairs & not in my current state. We gave up and went out to the cafes along the road.

Back down in the lift with more attempts at reversing out without hitting the stairs that were placed conveniently at the door of the lift. It was 1pm and I was ready for bed (and still really cold).

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Whilst I got stuck in to some afternoon object instantiation with what little brain power I had left, Mr Geek went out to the shops in search of something to keep me warm and dry and returned with a lovely woolen shawl & an emergency poncho. No there are no photos, you’ll just have to take my word for it that I looked hot. Or at least slightly less cold.

Getting on the train back at Victoria was  much easier and we were helped into the wheelchair bay where we found this:

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Super helpful! Especially as when it fell over a lovely lady chucked it out of her way towards my knees. (Can you see the lovely shawl? It really is lovely ). So still absolutely freezing, exhausted, and more and more palpitations, I vented to the world on a blog post!

What have we learnt from this?

Public transport is terrifying

London is moreso (people / cars/ noise / lack of drop kerbs )

People kicking my wheels or tip wheels drives me to a state of irritation that mirrors Dr Jekyll & Mr Hyde

I’m basically useless without Mr Geek

Mr Geek is deathly accurate with an umbrella if you get too close to me

I can push myself to keep going for hours longer than I think is my limit.

I will pay for this tomorrow.

One day I’d like to write a positive blog on disability and access and generally falling apart, because even I’m bored of my incessant whining. That day will not be today.

Why #WorldPrematurityDay Matters if you have EDS

I’d like to introduce you to TinyPants. Because once upon a time she was tiny.

Way back when I had no idea what EDS was and all I knew was that my back hurt and my pelvis wobbled way out of shape, a tiny person decided that they’d had enough time cooking and made a rather dramatic entrance. At 35 weeks cooked, it took 52 hours of screaming labour, a head stuck in my pelvis, attempting to knock myself out with ineffectual gas & air, an epidural that didn’t work and an ER style c-section, and a Beanpole was born.

16 months later, in a less dramatic fashion, but equally unexpected a TinyPants arrived. She was grey and slimy and 32 weeks cooked to the day. She gave an almighty yell then promptly stopped breathing. If I’m honest, it probably would’ve been quite useful to know that EDS comes with early membrane rupture. Oh, and a resistance to all things local anesthetic (that would’ve really helped).

Luckily for us, the medical staff whisked her off and put her in a box. We don’t have many early photos of her. I guess we were just too caught up in having two babies and didn’t want to jinx anything if we took photos? I don’t know. It was all a bit of a blur of tiny nappies, chapped nipple and milk donations.

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After coming home, the apnea continued and my tiny wriggling frog wore a remote control to warn us that she’d stopped breathing for a further 6 months. We were warned when my waters broke suddenly one day that she wouldn’t be able to breastfeed, that she may have health issues, that her sight may be affected & that she would be developmentally delayed.

They clearly hadn’t bargained on my daughter.

By 9 months she was trying to walk. And was still had a breast obsession to rival her father’s.

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Her vocabulary was perfect for her birth age, but what was most remarkable was (is) her ability to wrap everyone around her little finger with head tilt and a smile or a squeezy hug.

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As she got older, it was clear that she was leaving academia to her sister, even though she was perfectly capable. Her love of all things arty started early with painting her sibling, colouring everything (including my walls) and drawing elaborate art on her own body by sneaking felt tips under her bed. She also taught me that gender is fluid – there’s nothing wrong with wearing a tutu whilst also weilding a sword and demanding curly hair. Then later asking for it all chopped off to look like Willy Wonka (actually, it really worked).

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As she got older, she proved everyone wrong by being strong, insanely healthy, and head strong  (with 20-20 vision).

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So, a decade ago a tiny little frog emerged from my belly and has not stopped wriggling, shouting, and generally letting the world know that she’s going to kick it’s arse since.

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Good luck world. I’m going to have to unleash her on you soon!

Stop using the C word!

No, I don’t mean that one. Although,  don’t use that one either. What I am attempting to say is that I don’t care how many sleeps it is til Christmas. Put your Elf firmly on the Shelf. Holidays are coming later (it’s not later). And if you try decking my halls, I shall firmly deck yours.

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(I know it’s 2015)

I am looking forward to the actual day. This year promises to be a chilled out, Onesie wearing festival of inappropriate giggling. It’s being hosted by my sister-in-law and brother-in-law so we’ll be surrounded by good people  (and lots of whom have whacky dietary requirements that make me look normal).

I’m just a bit anti this year as the idea of all the preparations are a bit overwhelming. Shopping with no spoons is daunting and the idea of going into crowded places, trying to get into inaccessible shops where people’s elbows are at face height is enough to make me go a bit bah humbug. So I’m putting it off until I’ve finished all the DWP paperwork  (Seriously,  nothing shouts ding done merrily on high as a disability assessment form).

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Give me a few more weeks and confirmation that mince pies won’t make me hurl or cause my stomach to burn my oesophagus like a really ineffectual branding exercise.

Until then…

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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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Vive La France!

*see below for English translation*

Je me suis réveillé ce matin, à un état d’urgence étant déclarée en France. Il est trop à comprendre, mais je l’espère, que le peuple de France savent que les cœurs ont été brisés à travers le monde quand nous avons entendu de la perte insensée de leurs citoyens.

Ce matin, nous avons parlé à nos enfants terrifiés qui ne comprenaient pas pourquoi quelqu’un voudrait tuer des gens comme ça.

Le monde pourrait apprendre beaucoup de la sagesse d’un outragé 9 ans:
“Je ne veux pas être musulman, je ne veux pas être chrétien non plus, mais cela ne me donne pas le droit de vous dire quoi faire ou de vous tuer parce que vous êtes différent.”

Comme nous étions en expliquant comment extrémistes travail en utilisant WW2 titre d’exemple, elle m’a dit “si elles vous tués pour être handicapé, je damagedly leur faire du mal!”.

Il ya tellement plus d’amour dans le monde que se trouve la haine. Et si vous lisez ceci, s’il vous plaît aider à rétablir l’équilibre un peu aujourd’hui en pratiquant un acte de bonté au hasard. Il ne ramènera pas les morts, mais montrant l’amour en leur nom les honore beaucoup plus que des représailles haineux.

Si vous avez besoin d’idées, s’il vous plaît visitez le site Web Happsters.

Étaler un peu d’amour aujourd’hui.

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In English:

I woke up this morning to a state of emergency being declared in France. It’s too much to comprehend, but I hope that the people of France know that hearts were broken around the world when we heard of the senseless loss of their citizens.

This morning, we talked to our terrified children who didn’t understand why anyone would want to kill people like this.

The world could learn a lot from the wisdom of an outraged 9 year old:

“I don’t want to be Muslim,  I don’t want to be Christian either, but that doesn’t give me the right to tell you what to do or kill you because you’re different.”

As we were explaining how extremists work using WW2 as an example, she told me “if they killed you for being disabled, I’d damagedly hurt them!”.

There is so much more love in the world than there is hate. And if you are reading this, please help restore the balance a little bit today by practicing a random act of kindness. It won’t bring back the dead, but showing love in their name honours them far more than hateful retaliation.

If you need ideas, please visit The Happsters website.

Spread a little love today.