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.

Peace

The word I’ve chosen for 2016 is peace.

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Peace:
noun
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?

 

Bureaucracy is disabling me.

Ok, bear with me, this could be a bit whiny and it’s probably going to be longer than normal.

I take meds four times a day; morning, lunch, 4pm and 7pm including controlled drugs at morning and 7pm and liquid morphine as and when I need it.

About a month ago, my care agency told me they absolutely cannot keep doing my meds. By which I mean, transferring them from the weekly blister pack which I can’t get into to the little daily meds box which I can open. This also means I only have to carry one day at a time each time I leave the home. And we can also add in the controlled drugs which can’t go in the blister pack. All seems sensible to me. Except transferring meds, or leaving them for me to take later, is secondary dispensing and that’s not allowed.

So, being a problem solver, I started trying to figure out how we fix this. And I’ve thought and thought and there are no sensible options. I’ve been shown a telecare medication dispenser. Which to be fair, would give me (some of) the medication without carers having to get involved. It couldn’t dispense the controlled drugs or the as and when morphine.

It is also huge.

And I would have to take the whole thing with me if I wanted to leave the house over meds time (you know, to do something wild like go to work).

As I can’t get it out my bag I will still need help taking my meds.

When it’s time, it’ll beep away until I take the tablets. Which is great if I happen to be in a meeting – sorry, don’t mind the beeping, could someone grab the giant meds thing out my bag as I can’t do it myself – nothing like having a giant sign on your head saying disabled.

I’ll also have to carry about a week’s worth of meds if I go out which will be great for thieves – nice stash of tramadol there…

It will need filling weekly which means I need to be home at the same time each week so the pharmacy (there’s only one which will fill it) can drop a filled box off and take away the old box. But that’s ok because I’m probably going to be tied to my house by the meds box anyway…

Plus the controlled drugs can’t go in it.  That’s ok in the morning as my carers are with me but they aren’t currently at 7pm (they do 5.30-6.30 as that’s when I have my tea, any later and I’m too tired and can’t be bothered and anorexia says nah, not tonight).  And I’ve just heard from the social worker that they wouldn’t extend my evening call.  So I would have to have 6-7 instead meaning I will struggle with my tea and I’ll be going to bed straight after I’ve eaten (I’m in bed by 7.30 at the latest).

And there’s the as and when liquid…Even if we can replace it with a tablet, I still won’t be able to get it out of the packaging. And I take it any time of the day or night. 3am is not unheard of… In fact the middle of the night and when I’m at work are the most common times for me to take it…  One of the ‘solutions’ social services suggested was that I get my team to dispense my medication.  They do at the moment because we haven’t got a choice but it’s not appropriate and I can’t rely on them being there or me being with them at the right time (you know, meetings and such get in the way).

And social services keep saying it’s not their responsibility… it’s health’s…

I’m off to see my GP with my care manager on Tuesday… I have a sinking feeling they will tell me it’s not their responsibility, it’s health’s…

Wish me luck… the alternative is i have to be at home 8am,12pm,4pm and 7pm unfailingly and having my evening meal screwed up.

Audiobooks

2015 might be the year I finally got to grips with audiobooks. In particular, kindle whispersync. This let’s you switch between reading on your Kindle or kindle app and listening to the audio version. You can follow the text with the audio so i think it would be really good for early readers. One of the reasons I struggle with audiobooks is loosing my place and with this, you can flick through the text which I find much easier than trying to rewind an audiobook. Often when you buy a kindle book, the audio version (if available) comes at a reduced price.  Also, it lets you read, then listen then read so you can choose whatever is most appropriate at the time.

I’m sure you’re all aware of audible but if you aren’t fussed about having a linked text and audio book, check out your local library. At lot now offer ebooks and audiobooks which you can download at home straight onto your device.

There are also charities who lend audio and e books although I haven’t used any yet:

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Ps. I’m loving Robin Hobb at the moment!

Branding!

I finally have branding!

*drum roll*

Blog-header

Unlocking-images-for-web

Business card back final

Thanks to the awesome Meg at That Hummingbird Life.  I sent her the vaguest ideas and concepts and she created such a lovely design for me and was patient as we bounced it between us a couple of times.  but right from the start she had got the idea spot on, just leaving a bit of fine tuning to be done.

Not only is she awesome at design stuff, but you should check out her website as well as her sunday weekly self care check in emails.  She is actually the first newsletter I’ve ever replied to.  And she was so friendly when she replied that I was inspired to reply to another person (who never replied…).

Also she’s included me as a guest post, even more reason to check out her site!

My blog will be updated with the new logo etc once I’ve decided on a new layout as this one doesn’t look right with the logo…