Smarties Have The Answer

Today was a tough one. I’ve been extra sore and it was an extra long day.its that time of year where it’s cold, everything needs marking & every week has a parents evening. This too shall pass.

I had my interview with occupational health today. It was all a bit odd. We started off with her reading out the questions that had been sent:

How can we support her further?

What is the prognosis for long term teaching?

Wow. That was  curve ball. Poor woman, she hadn’t realised the they hadn’t shared the referral with me, so she did her best. She suggested that I gave her some background on what my diagnoses are. “What’s  ehhhhl… oh I can’t even pronounce it!”

image

We chatted about what EDS is and the various referrals I have. Then she explained that usually she deals with back pain and I was better off talking to Access to Work as they’d have more information. Poor woman was way in above her depth and tried to get through the interview as quickly as possible. She apologised for asking me the suicide question – I half joked that it was ok, I’d been asked far worse in the PIP form and that I was surprisingly perky considering the past few months. Then she asked me to list the medication and made ‘that noise’ (you know, that one that asks you why you aren’t constantly unconscious). I had to explain that quite a few of them are about as effective as smarties because whilst one of the main identifiers of EDS is magnificent volumes of pain, it just balances it nicely with resistance to local anesthesia.

And that was it. You’re pretty fucked aren’t you? I guess. Does that make you want to die? Not really.

image

And that was it,  off I trundled back to my classroom and got on with my day. It wasn’t really until I got home at 7 that I keeled over and stopped functioning.

Mr Geek brought me bubble & squeak from yesterday’s leftovers (my favourite ) and bed called so loudly that 8pm was the wall that I hit.

Heading upstairs, our room was lovely to walk into after the hours that Mr Geek put in over the weekend to make it nice, and so I wouldn’t freak out when the Occupational Health lady comes over tomorrow. He even got me this to keep all my medical stuff tidied away but still to hand from the bed.

image

To finish the day properly, he bought us both a mega pack of smarties which are definitely not allowed on fodmap, but made me feel mentally better (we shall await feeling physically sick shortly! Totally worth it. I regret nothing).

image

Tonight, smarties do have the answer.

Inflatable You

Normal Sunday night service has resumed in the Geek household thanks to a new gadget the arrived today.

Sunday night requires an almost Beatrix Potter style scrubbing up of our children to once more make them presentable for school (and the general population ). Baths are run, hair is washed and the coming week is talked through over dinner as if no one uses a calendar. Actually, I’ve tried getting us all to synch calendars, but have met more resistance than Darth Vader. Apparently, telling everyone on a Sunday then promptly forgetting is a much better option. I digress.

My own version of this Sunday night pre-school scrubbing has included Mr Geek lifting me in and out of the bath which has not been fun for him, and equally been quite painful for me. (Straddle the side of the bath… without bearing weight on your legs….exactly). However, we’ve coped whilst we have scoured the internet for alternatives. On the advice of a friend,  we’ve been trying to locate an inflatable bath lift and found quite a number online.

Whilst searching for “inflatable bath lifts” we found some bizarre things online, that would make so much sense if you were living in a tiny house. Who knew inflatable bath tubs were a thing?! They zip up to keep the heat in and everything! (Kudos Japan)

image

And then there was the giggling at the idea of trying to fold me into this (breaking bad anyone?)

image

In the end we stopped being amused at the ingenuity of the Japanese home styling and found a serious contender for my Get Mrs Geek in The Bath mission. Look at how pleased this lady is to have hers!

image

Anyway, this is the model we decided would suit us best as:
I can control it
It will get me to the actual bottom of the bath
It doesn’t have any hard bits that will damage the bath (or me)
It’s small enough to roll up & hide in a cupboard when I’m not using it so it’s discreet.
And, the back remains inflated so if I do get a bit potsy and faint, it holds my head up (bonus!)

But brand new, it’s  £500. For an inflatable chair.

image

So we hit ebay and found a second hand one locally for a teeny bit less than £100 and waited hoping no one would bid. It’s a bit faded, but it did the job and tonight we bathe!

image

I may not be able to wash my hair on my own, but I can push a button and lower myself into bubbles.

image

Gifting my Spoons

Today was the kids’ Christmas fair at school and I’d agreed to help out (you know, because I have tonnes of spare spoons). In return the parents association agreed to give all of the donations given at the door to the Ehlers-Danlos UK charity.

As usual, facepainting was really popular, but not so busy that I didn’t have time to paint a special candy skull for my friend Kate.

image

I’ve not picked up a paintbrush since August, so I was so relieved that my hands held up. I’ve not been able to hold a pen for more than ten minutes, but using sponges & paintbrushes seemed to be OK.  Perhaps because the action of painting is light compared to writing. Whatever it was, although my designs were pretty basic, I lasted the couple of hours I needed to and created lots of reindeer, Elsas and Anas.

A friend asked me what I was doing there in that “but you’re ill” way, and then we fell about laughing. She’s been at the front line of all of these events for the past 5 years despite battling breast cancer in a way that made Boudicca look like a wallflower. We had a great chat about sucking it up for events like these because they make us feel normal and God it feels good to get out and feel normal.

We got home at 2.30pm and Beanpole and I have been cwtched up on the sofa under a blanket since watching Willow whilst I sink into a nice dihyrocodeine fuzz. All spoons have gone, but it’s been a good day & I’m so proud of my babies for helping out their school and taking care of me. We’re a pretty awesome team.

I’ll have to wait and update this post when I find out how much they raised. But as a nice little bonus, I got to give lots off posters and things from when I signed up with EDS UK to the school to help raise awareness with the teachers 🙂

This is me and TinyPants with the Headteacher, Mrs Harrison. I’m going to miss these days when they’re all grown up in high school.

image

Pain Guineapig

My GP has decided to play with adjust my painkillers as we had discussed this week that I’m developing a tolerance of the dihyrocodeine /co-codamol combo that I currently take (were leaving the gabapentin levels alone as I can’t tolerate any more without becoming a zombie). We’re both of the opinion that maintaining a tolerable level of pain and attacking break through with tens, heat and swearing is much better than trying to deal with screaming agony. I’ll accept that sometimes it can’t be avoided, but let’s not poke a wasps nest when I don’t have an epipen eh?

image

Anyway, before we look into any more or any stronger opiates, she suggested trying tramadol. I’ve resisted it before as it’s got an unpleasant reputation for addiction and there’s no telling if it will help or hinder. So it was agreed that I’d try them at 100mg and report back in a week or so, but would hold out until the weekend to take them “just in case they don’t agree with you”. This can be roughly translated as amyltriptelene made you projectile vomit like an audition for The Excorcist, we haven’t a clue how you’ll react.

image

I’m pleased that I’ve found a GP who will talk to me like an intelligent person, explains their thinking, and is up front that much of what we’re doing is guess work. I appreciate her honesty.

I took the first dose tonight in place of my usual codeine cocktail and so far so nothing. Aside from a weird potsy feeling (palpitations) and tingling in my calves.

image

edit: 2 hours in and the last set of painkillers have thoroughly worn off, but the tramadol has not kicked in and oh God my joints are telling me about it. Mr Geek is sleepy and I have a pneumatic drill taking my SI apart, whilst my legs are burning and my wrists and hands feel like they have hot sand sliding through them. So far, it’s about as effective as a smartie 😦

Morning update: I think we can safely say that tramadol doesn’t make me sick, but equally doesn’t stop the joint pain. 3am – woke up on a pain scale 9 with tears streaming down (I’d dreamt that I’d broken my arms and legs whilst walking the kids to school, but realised when I woke up that it was the pain interfering with my sleep). The only thing I could compare it to is when I dislocated & fractured my elbow – same kind of unreasonable panic inducing feeling, but in my hips, elbows, knees and back. Initially, it didn’t even occur to me to do anything other than curl up and cry. Eventually, I pulled myself together, took some dihyrocodeine and put the electric blanket on and it died down a bit.

I’m not going to write them off after just one dose, but I will vary the parameters. I’m giving myself today to recover and get a handle on my pain levels, then I’ll try swapping them in for a daytime dose.

Endnote : I know EDS is painkiller resistant, but it’s so frustrating that what works for one of us, doesn’t for all. Still, in my own words to my studebts: “Chin up chicken. We’re not beaten yet”

Handbook for The Recently Decreased

No one really expects to get ill, but when you suddenly go from being in some pain and having some off days to being in unbearable pain every day and feeling like you have a constant dose of flu, seeking out the help you need can feel like it’s actually more hassle than its worth. For some, just trying to get a diagnosis is like banging your head on a doctor shaped wall.

image

So, having recently gone through some of the less pleasant processes, I thought I’d list out some of the things I wished I could’ve just been told about instead of finding them out from unrelated internet searches or mentioned in passing from friends. It might just save someone a teeny bit of sanity.

– this is UK related & only from personal experience –

1. Ask your GP to refer you
They aren’t omnipotent, nor are they a specialist. Let’s be honest, you’ve probably Googled your symptoms by now and the best way to confirm it is a specialist. Find a name & ask for a referral (yes, you can choose who to be referred to). Take printouts of what you’ve found & for Ehlers danlos, photos of your joints so you don’t have to perform like a monkey.

2. Don’t be afraid to be an expert
This is your body. Your doctor doesn’t go home in tears because they didn’t listen to you. Take notes – scan every letter and keep copies (Google Drive is your friend, especially with a phone as you can instantly bring up letter and show or quote from them). If you see a professional, ask for a copy of their assessment & keep it in your own medical file.
Take this with you to non-regular appointments. Having records & being on the ball prevents 80% of fobbing off incidents  (stats here are utterly made up, but the really does help).

3. Register with your council as disabled if you are.
This doesn’t actually provide any practical help, but can expedite help if you need it later. All councils are different, but Google “[council name] register disabled” and you’ll be able to download a standard letter for your GP to countersign.

4. Register your official carer with your GP
I hated doing this , even though it was Mr Geek. But, actually if I need him to advocate for me because I can’t tolerate my pain levels, or one of the painkillers my GP trials with me causes a reaction,  he has full access to my medical notes and can make decisions on my behalf. It’s a reflection of our relationship that I quite literally trust him with my life.

When I’m going crazy with pain, he’s also clued up enough to give me a sensible painkiller regime.

5. Sort out your travel
If you are able to travel by public transport, you may be able to apply for a free bus pass. If your GP or specialist believes you are unable to travel alone, they may also provide a companion pass.

I came across this by chance when looking for accessible taxis and although I would need a person with me, I put forward an application to maximise my independence. I can’t drive anymore, so taking my mum on a bus is a back up.

A blue badge is dependent on your local council again, but it’s not as traumatic as you might think (possibly in relation to the PIP assessment). Send evidence & just be honest about your worst day.

6. Talk to Your Employer
They’re probably more scared than you are right now. Saying the wrong thing is easy and if they’re faced with a new situation they may not want to get it wrong. Access To Work have been incredibly supportive since I first sent them a timid email asking if I could ask for advice. Not only did they listen to me, they’ve arranged to help with transport to and from work and are supporting my employer with making physical adjustments. Staying at work was (and is) an important thing for me and my move to a wheelchair left me terrified that my job would be taken away from me in the same way as my mobility was. My Case worker has been at the end of an email to reassure me and has been one of the first people to talk to me like I hadn’t lost my mind even though I’d lost my body.

7. PIP is horrible, but there is hope
Apply. Take a deep breath and if you find the form too difficult, get help.
I can’t tell you about the interview, as the wait between form and interview is currently 16 weeks (it’s reduced!), so I’m in limbo. Right now, I wake up in cold sweats with nightmares of assessors who will shout at me to get up and walk, or who will yank a joint and dislocate something. I am a strong person and fiercely independent, but my mental health had taken a good kicking from this process.

The Benefits and Work website has lots of useful information & although they charge for it which sort of puts me ill at ease, they’ve supported lots of people through.

8. Prescriptions are expensive!
Being a human guinea-pig for pain relief is getting expensive. If you’re working, there’s no free medication and each item currently comes with a charge of £8.20 (even if the item costs more or less). My last prescription would’ve cost me nearly  £50 had someone in the GP waiting room not been chatting about the pre-paid prescription service. So are,  the easiest way I’ve found to do this is to buy a 3 month card over the phone, then with a month left to run, set up the £10 per month direct debit that gets a year long card for a 10 month direct debit.

9. The PAT Team are also there to help
One from my excellent sister-in-law. The PAT Team are there to support people who fall between the cracks of the NHS and social services. They also work alongside Access to Work team and provide advocacy and practical support.

10. Get yourself a friend
Chronic illness can make you feel really isolated and alone. There are some amazing support groups on social media and my daily Facebook interactions have dispelled some of the more unnerving aspects of having a rare condition. It’s also allowed me to connect with some people in person who have made life a whole lot nicer.
It’s hard to have a pity party when you’re supporting each other.

This isn’t an exhaustive list & I’m sure I’ll update it soon, but I hope you take away from this that you’re not alone.

What do you wish you’d known when you got ill?

Important Thank Yous

Last week I had a very frank and open talk with my headteacher about how I’m coping since the EDS decided to kick my arse and kneecap me. I’ve had a number of these meetings with other people, but he has a way of really listening. I have mountains of respect for him, and whilst I don’t always agree with him, my opinion is always welcomed and heard. He doesn’t suffer fools, and I respect him immensely. So when he asked how I was coping, I was more truthful than I have been with even members of my own family.

I’m angry quite a lot of the time. This isn’t how I’d planned to spend my 30s and there are days (and weeks) that I feel like a shitty teacher. There are certainly days where I’m in too much pain to follow a lesson plan as expected and I end up needing help from the kids.

He asked me how the kids were acting towards me.

Our kids have rolled with it. They barely see my disability – all they see is a teacher and yet on my bad days where the circles get so dark under my eyes and something audibly cracks, they discreetly move chairs out of my path and ask to spend lunchtime in my classroom (which just happens to coincide with bringing me tea), or change direction so they can open doors. They’ve always been the best part of my day, but I see them in a new light now. One where teenagers are infinitely kinder than adults.

image

In my desent into my special pity party, there have been a few people who have just got it, and others who don’t but still move heaven and earth to keep my chin above water.

My postman delivered a cheer up chicken gift today from my lovely friend Mrs M. There’s hundreds of miles between us, but she managed to utterly brighten my day and make me feel very humbled. She’s put up with more poop in her time than anyone deserves, and although we don’t always see eye to eye, we respect each other’s great big gobby opinions. We all need someone in our lives whose heart is as big as their mouth. Those people are the most real people. They keep us grounded.

image

I also have my sister-in-law, who is a total warrior. Seriously, Xena has nothing on her. She is the ultimate role model for Beanpole as how a woman who has Aspergers can function whilst also sticking two fingers up to a world that demand she conform. I see how Beanpole struggles each day with fitting her square peg into a world full of round holes and looks to her Aunty for cues how to get there. When Beanpole visits her, you can see her visibly relax because if she squeaks or needs to stroke the eyes of her panda no one is judging her there. Aunty Squeezy is her calm in a great big stormy world. She’s also a massive support to me because she tells me straight if I need to get a grip, guides me through ways to get help, and speaks up for me when I’m too embarrassed to ask. She was also the first person aside from me and Mr Geek to see our daughters & was in fact there when TinyPants was born  (she met TinyPants before I did!). Biologically, I don’t have a sister,  but in reality I do.

image

There’s also Mrs G who is always there at 3am to mop up the tears. A decade of this and she still hasn’t kicked my arse. The woman has the patience of a saint & I can’t wait to give her a hug when her children have finally stopped infecting her with germs!

And I know you’re reading this Sherlock. Don’t think that we don’t think about you guys every day.

There are lots of you and I wish I could thank all of you personally, but this is turning into a gushy Oscars style speech so if you’re reading this and we’ve had contact over the past few days, I want to say thank you. People’s kindness over the last 48 hours has been overwhelming.

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.

image

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.

image

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.

image

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.

image

And for transparency, my response.

image

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:

image

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.

image

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…

image

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.

image

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

image

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.

image

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.

image

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!

image

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 😉

image

(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.

image

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.

image

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).

image

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:

image

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.