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?

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.


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.

Laughter (and understanding ) is the best medicine

There’s this angry lump that starts beneath my ribs and rises up my sternum. Sometimes it reaches my throat and burns my shoulders, other times it just rises and falls reminding me that it’s there, leaving me hoping that it’s not doing too much damage. I sleep propped up at night waking every hour or so to assess whether I need some water, or feel sick. Generally, I’ll just grump about it and go back to sleep as my oesophagus gently smoulders.


This is just one of the many and varied gifts that EDS keeps giving me. Although it’s easy to identify, unlike lots of other things. It’s gastric reflux. There are drugs to help, although they’re not exactly working yet.

Today though, I didn’t need to explain how any of it feels for a couple of hours. There were two women in a coffee shop, sitting in wheelchairs, wrapped up in too many layers for this time of year. Although they’d never met, conversation flowed and symptoms were compared. The people sat next to them raised eyebrows as they talked through hair raising medical procedures and pain levels. After a couple of hours, the effort of talking & laughing and randomly rubbing the bits that were twinging clearly left them both exhausted. And for the first time in months I didn’t feel like a massive fraud. Someone else was describing my body and other people’s reaction to it, but it wasn’t me.

I wouldn’t wish this on anyone, but I can’t put into words how grateful I am to know someone who just gets it. I guess “thank you for reaching out” will have to do.

And next time, it’s my turn to get the cake and coffee 🙂