Carriage clocks* and more

Retiring at 29 wasn’t part of my life plan. Not that I really have a life plan. But, like most people, I assumed I would spend my adult life working and, given my pain and the ever increasing retirement age, I’d have to leave on ill health. But i was expecting that to be in my 50s or so.

DSCN1009 MO
not an accurate picture of my retirement…

But increased levels of pain and fatigue have sped things up. I’ve done all i can to keep working :

  • I’ve had numerous access to work assessments and been provided with lots of helpful equipment and taxis to and from work
  • I reduced my hours to four days a week
  • I tried working at home
  • I reduced my hours to three days a week
  • I looked at spreading my hours across the week, more days but less hours
  • I’ve carefully organised my leave to ensure I got regular time off
  • I tried to get the employer to understand how their partly inaccessible building made my day so much more difficult

But even then I still couldn’t make it through my three day working week. At the end of a day in work I would get in, collapse into a chair and struggle to give my carers coherent instructions. And I would spend all my none working days recovering from work. And there were parts of my job, such as phone calls to the public, that I wasn’t comfortable doing when I had taken increased pain relief. As well as the physical issues, the mental exhaustion and fog made it hard to think and assess situations as fast as I know I can.

So, in early February I put in my application for retirement and went off sick. It’s taken a lot longer than it should but I finally have a leaving date – 20th may.  I will also receive some pension as well, details not yet known, which will help me financially.

I have had numerous people tell me “Ooh, I couldn’t do that.. I’d get bored..” and have come up against medical people who have been less than supportive and haven’t even attempted to understand my circumstances.

An illustation: I saw a pain doctor for the first time a few months back, I normally deal with a lovely woman who is all about maximising quality of life.  This guy may have read my notes, but quite probably hadn’t.  He asked what medication I was on and I went through it and went on to explain that I was hoping to reduce some of the morphine because I was stopping work.  He said “from a pain management point of view we would not recommend this”.  I started to justify my decision but he didn’t want to know.  He kept repeating his statement, even when I started to cry.

This isn’t an easy decision.  It’s not something I’m taking lightly.  I haven’t done it on a whim.  I have tried all the options available to me and cannot find a workable solution.  And this is with the most supportive manager and team that you can imagine.  If I can’t do it with them, I can’t do it anywhere.

The other standard reaction is jealousy.  Which I find difficult because I don’t want to be doing this.  The rest of my life is stretched out in front of me with nothing in it.  Literally, I have no plans this year except hospital appointments and a trip to Oxford (this has a lot to do with the door and carer situation but the point is there).

I’ve not worked in three months and, even before that, I knew I needed to be careful because this was a risky time for my mental health. Again, things haven’t been helped by the door opener not being in place making me housebound and not getting all my care hours.

Up until a few months ago I had worked or been studying or both all my life.  I worked for my dad (a farmer) from an early age, basically when I could start being helpful; I started working Saturdays as soon as I could (16); I worked full time in the summer holidays when I was in sixth form and uni; I had one painful month job hunting when I left uni and then moved straight from job to job till now.  So not working is a HUGE change.

So… what next?

I am hoping to find a course to start in September on writing, craft, humanities…  I’ve got lots of interests so should be able to find something to go to for a couple of hours a week.  And hopefully I’ll meet other people who aren’t working the traditional 9-5 jobs.  Because almost everyone I know is, and that means I can’t see them during the week.  I’ve also looked at online courses through futurelearn and coursera.

I already know i need to do something creative most days and I’ve realised I need to do something intellectual on a regular basis so i came up with a list of things I need to keep doing on a daily-ish basis to help me cope with retirement:

  1. Something creative – art journalling, working on some of my creative projects or wanderlust activities, writing etc
  2. Something intellectual – a course, a non fiction book, a crossword
  3. Something outside – when the door is fixed of course…
  4. Something which helps me check in with myself – tarot, art journal, friday morning check ins (which I keep meaning to blog about)
  5. Something restful – because I am still ill and still need to look after myself and give myself enough down time

What I would really like is for people to suggest more ideas for these areas and tell me how you cope with being off work, whether its long term sickness, retirement or not having a job.


  • engraved carriage clocks, pocket watches etc seem popular retirement gifts – you’re no longer working, you’re probably in your last years, have a time keeping device to count them down…?  I do not want a clock or watch for my retirement!

Meet me at the crossroads

Gougane Barra
I don’t have a photo of a crossroad…

So I’m at a crossroads in my life.  Or perhaps, more accurately, a dead end.  I’ve never had a great life plan or ambition or expectation but I think working full time was just always a given.

warning: this is unedited, apologies for errors

About a year ago it started to dawn on me that I wasn’t up to full time work.  By September-ish I had managed to externalise that, with lots of tears.  By March it was reality.  I had gone from 37 hours a week to 30.  Which might not seem a lot but dropping from five days a week to four days a week was terrifying, heartbreaking and agonising.  I’ve known for quite some time that my dregs of self-esteem are very much tied up with work and being productive.  And saying I can’t manage that stirred up some major issues for me.  I was essentially saying that I was worthless because I couldn’t work full time.  I was angry that my body had taken more things from me.  I was scared and it was a vulnerable place for me.  The way I saw it, I was having to put my hand up and say I can’t do this, I am failing at full time work.  What would people think of me?  More importantly, what did I think of me.  Hint: on the whole they were very different responses.

So it’s been almost a year since I told someone I needed to work less.  And a lot has happened in that time – I have started getting care, started using crutches, started using wheelchairs and my pain has increased considerably in the last year.

Which brings me to the present day.   I have taken more time off work because of pain in the last two months than all my sick leave from the rest of my career combined.  And the sinking realisation that I can’t work four days a week hit.  It hit with tears and frustration and anger and ranting texts sent to a very patient and supportive friend.  A week after I had this realisation, my manager asked how I was getting on with the reduced hours and were they helping enough?  No.  There’s no sugar coating it, the answer is no, I can’t work 30 hours a week.

And that’s why it’s less of a crossroads and more of a dead end – I can’t keep moving forward.  Something needs to change.  I don’t yet know what my hours will look like other than less.

And I haven’t yet figured out what those non work hours will look like.  When I first reduced my hours it was simple, I would work Monday and Tuesday, rest all day Wednesday, work Thursday and Friday and rest over the weekend.  That just about felt justifiable to me.  But I can’t comprehend the idea of taking more time off work and resting.  I think there is a need to do that to some extent because otherwise I still won’t be fit for work on the days I do go.  But, and this comes back to having self-worth tied up with productivity, I feel I need to be doing something.

And financially, I do.  Reducing my hours the first time was a huge hit to my bank account.  I’ve been supplementing earnings with savings and thankfully was approved for PIP just before my hours reduced so that has helped a bit.  But reducing my hours further will put me in a very vulnerable financial situation.  Yes there are other benefits which at some point I may be eligible for but (again, self-worth is raising its head) I don’t feel I deserve them (which is nonsense) and I find the idea of being reliant on the government quite scary and it feels like a vulnerable situation.  For so long, I’ve been financially independent and before that I was striving to be.

Anyway, to sum up the situation is more ‘free’ time and less money.  So surely I can find a way to make money which isn’t going to have a negative impact on my health?

So far all I’ve come up with is photography (with the help of a couple of friends).  But that is a scary huge thing to do.  So many what ifs and as far as I can see no certainties.  Or writing, which has the same risks.  The biggest fear is that I will be laughed at – people will look at my work and think why am I trying to sell it, it’s not up to standard, what right do I have to charge people for my work?

If it hadn’t been for my pain, I’d never be thinking about the possibility of taking a risk with the more creative side of me.  So maybe that’s the happy ending to this post.

Yes pain sucks, but maybe, just maybe, it means you do things you wouldn’t otherwise do.

#YouCanSeeIt

#YouCanSeeIt came across my twitter feed this weekend.  Inspired by this post, it’s about the visible signs of invisible illness.  I was in Brussels for a weekend away when I saw the hashtag.  Being away and exploring a new place was great but I was feeling particularly annoyed with one of my invisible illnesses.

Ehlers Danlos Syndrome or Hypermobility Syndrome is a genetic condition which affects the make up of collagen which unfortunately in turn, makes up a lot of the human body.  The main way I am affected is chronic joint and muscle pain including joint dislocations and subluxations as well as fatigue.  And by fatigue I don’t mean being a little bit tired but being exhausted most of the time and never having a refreshing nights sleep.  Being so mentally and physically tired that you can no longer speak and the idea that you might want to swing your legs onto the bed for comfort is out of reach.

You can see it…

You can see it when I bite my lip

Persevering with every step

You can see it when I stop to gather strength

At the foot of the stairs

You can see it when my eyes zone out

And it’s like I’m not there

You can see it when my hands

Clutch at my ribs, holding myself together

You can see it when I slump to the floor

Unable to stand any longer