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!”


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.


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.


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).


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)


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


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!


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.


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!


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


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.


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.


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?


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.


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.


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.


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.


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.


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.


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.