Bureaucracy is disabling me – Part 2

Part 1

We’ve sorted out a way of avoiding the giant meds box of doom.  The GP has changed my meds, dosages etc so that I can get the same affect but only taking meds morning and night when my carers are here.

But in terms of the as and when morphine… social services have put up a bloody high brick wall with a sign saying ‘nothing to do with us’.  GP has no alternatives – any fast acting pain killer will be liquid and any liquid has to come in a bottle and I can’t open bottles.  My care agency have said from 1st Feb they will no longer break the rules for me (understandably).  Which means from 1st Feb, I will only be able to take the morphine twice a day, when the carers are here.

This means at 3am when I wake up in agony, I have no relief.  My already bad sleep will be worsened.  I strongly suspect I will be unable to work. I imagine that my mental health will be impacted by an increase in pain as well. In addition to this, having no relief on my bad days will mean that I need additional care as I wouldn’t be able to do basic tasks involving my hands such as toileting, eating my lunch, holding anything. I already struggle to do these basic things so removing my pain relief will inevitably worsen the situation.

And all social services had to say was this is clearly a health issue so your GP (who’s already said there’s nothing she can do) needs to sort it. Goodbye.

And goodbye to the little bit of life I had…



A bit (more) about me…

What’s your favorite way to pass time? What do you enjoy most?

Being creative.  Whether it’s photography, art journaling, art outside my journal (which I’ve just started dipping my toe into) or writing.

What is the best or hardest decision you have ever made?

Asking for help and starting having carers was an incredibly tough decision.  As was starting to use a wheelchair.  And reducing my hours at work.  And whilst they were hard decisions, they are probably also some of the best decisions and have improved my quality of live.

Describe your personality with only one word.

contradidictive (it didn’t say it had to be a real word!)

What’s been the most important/transformative moment in your life during the past year?

see hardest decision

What is standing between you and happiness?

EDS, or I guess me.  I guess at the end of the day the only person who can stand between us and our happiness is us.

What (or who) are you most grateful for?

My teddy.  And my friends.

Name one thing you’ve always wanted to do, but have never done before?

Travel the world, in particular New Zealand, Norway, Canada, Vietnam and a host of other places.  I’m still hoping to go to New Zealand before I’m 30 although the logistics are overwhelming… finding someone to go with me as a carer but also someone who wants to go so I don’t have to pay everything for both of us because I don’t have that much money! I have found a tour company who do small group tours specialising in travelers with mobility issues so that’s one small step towards organising the trip…

Where have you lived in your life? If you’ve never moved (or even if you have), where would you like to try living?

Ellesmere Port (North West England) and York (Yorkshire, England).  I came to York when I was 14 and when I went home, I told everyone I was going to live there.  I’m now a few streets away from where I stayed on that first visit.

What is the most important/most meaningful thing in life?

Friends.  And creating.  Whatever it is, create something: art, photos, furniture, food, children…

In one sentence share what your wish for your future.

To live with peace, intention and to find a way to live as fully as possible with my pain.

Where do you find your inspiration + motivation?

In the small things.

Like yesterday when the rain finally ceased and the sky filled with golden clouds (which my photo does no justice to). It would have been so easy to think the whole day was miserable and wet and dark but just noticing the change, feeling in tune and connected, brings me a kind of peace.

sky 070116


What is your motto in life?

Life with intention and appreciation.  Celebrate the little things.  Make what you can into an adventure.

From Liz at Be Love Live 

Projects for 2016

I like projects.  I like having a focus and working with limits such as theme or colour can be helpful at getting the creativity flowing.  I’ve got a few projects in mind for this year…

Trees: a year long study

This is essentially what it says.  I want to spend the year using art, photography and other mediums to explore the topic of trees.  A key reason for choosing trees is that they are common.  I can lean out my window and see one.  When I move, I am sure I will be able to see a tree.  When I’m out and about, I will see trees.  I don’t have to go out my way to get inspiration and to take photographs etc.  Given my physical limitations, this was really important.  If I went for something more specific such as… bridges… I’d not be able to do as much ‘in the field’ work.  Keep this in mind if you’re thinking of your own long term project – if it’s accessible, it’s harder to make excuses.  I knew I was going with trees from the start but other possibilities that I might pick up in the future include streetlamps, doors, windows, letter boxes…

At the moment, this project consists of a sketchbook which is being filled with pages, each focusing on different parts of the theme eg colour, texture, uses for trees, types of trees, the little bits of a tree which make up the whole.  Once a theme or an idea starts to form from that I will then work towards a piece of art/photography/other that captures that.  In an ideal world, I’d like to make one piece per season to reflect the changes throughout the year but at this stage I can’t say because I don’t know what my direction will be (although I am quite interested in the use of trees in language and mythology…).  And I love that the centre of the tree trunk is called heartwood.  Do you have any interesting tree facts?!


On a day without internet (eek), I passed the time by making a journal.  It has eight pages (at present, I may add more) and is made from cardboard from amazon packaging.  The theme of the journal will be blue.  I’ve wanted to do this for a while – complete a journal using one colour set.  So I’ve got my book, I’ve started collecting and keeping an eye out for blue things for the pages and when it feels like the right time, I’ll get it out start putting it together.  This is partly an exercise in restraint.  I feel like everything is so instant that you don’t get the satisfaction and excitement of waiting very much.  So I’m waiting.



Probably as a result of being stuck in the house for a week, I have a longing to reconnect with nature.  And I was thinking that creating mandalas from natural material would be a deeper way to do this.  It would bring me more peace and focus and connection than just standing and admiring.  It would make me look at things differently, and that is what I love about creating; looking at things differently.


and I want to get back into writing… but this is on the back burner for now.  If/when I give up work, I may look for a writing class to replace that social interaction, routine and focus.


Do you have any projects for the year ahead?

A day in the life of me and EDS 2016

Last year I posted about what my day looks like because of EDS.  When I was flicking back through my blog to see how 2015 had been, I came across that post. And it has changed SO SO much in less than a year…

So, here is a (work) day in the life of me and EDS 2016

Midnight till 7.15am I sleep, or attempt to.  Sleep is interrupted every couple of hours by the need to go to the toilet and get a drink (yes, I understand the vicious cycle there but I wake up both desperate for a wee and desperate for a drink).  I will toss and turn all night.  Waking up each time I do as joints scream or poke at me.  Lifting the sheets is torture on my fingers.  That’s if I’m lucky.  I’ll probably read for a couple of minutes before switching the book onto audio mode (I love whispersync!), or watch a documentary on iplayer (yes, I know screens aren’t good… nor is staring at the ceiling).  If it’s a bad night, I may dose off about 4am.

7.15 my alarm goes off

7.30 my carer lets herself in and gets me out of bed

7.30-8.15 my carer will give me coffee, my meds, make my lunch, sort out drinks for the day, unload the dishwasher or washing machine, get me changed, put my splints of, brush my hair, wash my face, give me some mouthwash, make my bed, get me into my coat etc, get the electric wheelchair outside for me (no ramp) and then they will lock up and attach my bag to the chair.


8.15 Meet taxi.  Maybe. They are frequently late, average about 20 minutes, most has been 45 mins.  I have to wait outside regardless of weather.

8.30 Assuming I’ve made it into work  on time (I now only work three days a week) I cross my fingers that the automatic door opener is working.  If it is, I only have to battle one heavy and inconveniently placed door.  Work brings its own challenges in terms of accessibility and people’s attitudes towards me.  That’s for another day.

12.00 and 16.00 Regularly scheduled meds.  There may be morphine which is taken as needed at other times in the day, my colleagues have to give this to me.

17.00 Taxi home. Although its more like 5.25 before the taxi gets there.


17.30ish Carer arrives and brings the wheelchair back in.  Carer cooks, cuts up food, sorts out drinks, gets me changed, takes of my splints, washes my face, leaves me mouthwash, fills dishwasher or washing machine, opens post etc.  In terms of eating, I now only use a spoon.  Bad days result in eating with my fingers.  Even worse days, I struggle to do it with my fingers.

18.30 Carer leaves, locking me in for the night.  I might have a little time online on my tablet depending how my hands feel.  Then I’m moving into the bedroom leaning on my trolley which also helps me move the meds, drinks, snacks etc that my carers have left me.  I might watch something online for a little while or listen to an audiobook.

19.00 Final meds for the day.  Then I’m normally falling asleep.

21.00 – midnight Toss and turn and drag myself to the toilet. See midnight to 7.15

Non work days I get up a little later, 8.30 normally, but other than work, the routine doesn’t change too much.  We wash my hair once a fortnight and manage to wash me about once a week although it can be less depending on which carers are rota-ed on.  I spend a lot of my non work days resting in front of dvds or netflix and try to do something creative depending on how my hands are doing.  I am managing more of this than I did in my last post, because the carers are doing a lot of hand related work for me. Non work days frequently include medical appointments, life admin etc. I can’t leave the house without a carer present – I can’t get the wheelchair out and the wheelchair can’t be left outside because it gets cold and the battery stops.

2015 in blog posts

WordPress sent me an email with stats etc about how my blog has fared in 2015.  To be honest I wasn’t especially interested.  My hope is that by sharing my experiences and my words someone else will be helped.

This means that my top 5 blog posts of 2015 are somewhat different to WordPress’s.  Here are mine in no particular order:

  1. Travelling with EDS
  2. How to be a carer part 1 and part 2
  3. EDS Awareness month: An open letter
  4. Chronic Pain Cookbook (free to download)
  5. Do something small and do it most days

Tell your story

tell your story

I think we all have things we have difficulty talking about but which are hurting us or holding us back. Even if its something that sounds small or something that happened long ago and even if there is nothing anyone can do to help but listen, telling your story is still an incredible way to release the power that thing has over you. A way to exorcise your demons.

With each telling you are giving yourself a chance to face the issues and process the emotions that come with it.

You are building up a dictionary of words and phrases and they are becoming normal. What I mean by that is it’s so hard to tell someone you have anorexia if you’ve never managed to say the word out loud. But if you’ve used it regularly, it becomes normal and familiar and as easy as saying hello (well maybe not quite).

Talking of familiarity, when we have difficult things in our life, we have a tendency to hide them and pretend that they haven’t happened or aren’t happening. Talking about them means we have to look at them. And talking about them often means looking at them more often and then they become familiar. It takes some of the fear out of them. You know you’ve talked about them before and you’ve been ok. By which I mean you’ve survived. I’m not saying talking about things won’t be difficult, but as hard as it is, most of the time it can’t harm you.

I’m not going to use this post to tell my story, but I would like to touch on ways I’ve told my stories in the hope that it will help someone else:

  • Write it down, just for you. That might be a starting point for someone who doesn’t feel able to talk about something yet. Putting things into words and down on a page is incredibly powerful. You transform a horrible nebulous mass of hurt and pain into something tangible and defined and easier to handle and look at.
  • Say it out loud. Even if it’s just to yourself or your teddy bear or cat. As mentioned above, using words and language which you might find difficult can start to become less scary.
  • Blog. There are some things I have used a blog to talk about, for example when telling one single specific person about the anorexia was too much, I found I was able to tell people through my blog.
  • Social media. I’ve talked on twitter. And linked to my blog from twitter. That’s how most people found out I had anorexia. I wrote a post on a blog most people didn’t know about and eventually summoned up the courage to share the link. I don’t think I’d have ever been brave enough to put something more direct on twitter and certainly couldn’t tell a person (twitter is telling lots of people and people can ignore and pretend they haven’t seen if they can’t handle the thing you’ve shared plus I don’t feel like I’m burdening someone). This should probably come with a warning, you know best the people who follow you, you know how supportive or abusive the response could be.  Try to avoid putting yourself into a situation where you will get hurt.
  • In conversation. I’ve told specific people when a relevant topic has come up and shared that way.
  • Intentionally and planned. I’ve been to peer support groups. I’ve talked to professionals.

So tell your story until it loses its power. And in telling your story, you will help others with their own stories.

“Through other people’s stories we start to make sense of ourselves. And there is always more space for more stories. Because no stories are ever the same and no story is boring.” – Meg, That Hummingbird Life

Want to share your story? Link to your blog etc below, or, if that feels too much but you still want to share, email me – hejyork{@}gmail.com.


The word I’ve chosen for 2016 is peace.


1. the normal, nonwarring condition of a nation, group of nations, or the world.
2. (often initial capital letter) an agreement or treaty between warring or antagonistic nations, groups, etc., to end hostilities and abstain from further fighting or antagonism
3. a state of mutual harmony between people or groups, especially in personal relations
4. the normal freedom from civil commotion and violence of a community; public order and security
5. cessation of or freedom from any strife or dissension.
6. freedom of the mind from annoyance, distraction, anxiety, an obsession, etc.
7. a state of tranquility or serenity

Interestingly, as I sit here writing this, my neighbour is very loudly drilling something.  I can’t begin to imagine what because the amount of drilling that goes on up there surely means there’s nothing left which doesn’t have holes in…

But that I guess is helpfully illustrative of my word.  For me, this year, my hope is not that everything around me will suddenly become easy and quiet, but instead that I find a way to handle everything around me and be at peace even when my neighbour is drilling.

2015 feels like it’s been one of war.  Fight after fight.  For basic stuff.  For a house to live in which doesn’t make me housebound.  For a wheelchair.  For the ability to get to work, to get around work.  I wasn’t asking for the moon but I still had to push and push to get anywhere.  It’s exhausting.  I can’t do it any more.  I am all out of fighting spirit.

I need to cultivate peace instead.  The fighting is unlikely to go away.  I can’t change that.  All I can change is my reaction to it.

(I’ve just had a email alerting me to a new post on a friend’s blog, coincidentally her word is also going to be peace)

What tools, tips and techniques do you suggest for living more peacefully?