Staying home, some tips

I have spent a lot of time unable to leave my house in the past, and none of those periods have had a known end date. This means dealing with isolation, cabin fever and no idea when it will end, something a lot of people are facing right now. So I wanted to share some of my learnings…

First, if you are used to working outside the home, think about what work does for you. Yes you get paid but you also get to interact with people, leave the house, use your brain, be creative, problem solve and work adds to your self esteem and sense of worth. For me, this has translated as five things I aim to do each week:

  • Something creative – art, craft, writing…
  • Something that uses my brain – a crossword, scrabble, reading, learning…
  • Talking to someone who is not a carer – ideally this would be in person but there are times when this might be a phone call, a skype call, an email or some other virtual way
  • Checking in with my emotions – maybe doing tarot, journaling or whatever works for you. Expect to have complicated feelings that don’t necessarily make sense. Make space for emotions.
  • Finally getting outside the house. This is clearly not an easy one to meet right now. However, you can go into your garden if you are lucky enough to have one. If you don’t, you can open your windows to let some air and bird song in. I’ve also written about ways of connecting with nature when you are stuck in the house.

A few other things that might be useful to note include:

  • Allow space and time for emotional exhaustion
  • Expect to spend more on utilities during this time. You won’t be using work gas, electric and water and that will add up.
  • Keep to at least a loose routine, especially during week days.
  • Get dressed. Yes you can have a few pj days, but make the effort most days. You will feel better for it.
  • It’s ok to laugh. Gallows humour is a way of coping with difficult circumstance.

Then comes the question of how you are going to pass the time…

  • Online contact
  • Online learning
  • Reading
    • Don’t set yourself up to read all of War and Peace. Be realistic about how your energy levels and concentration are being affected. All books are valuable and you can read children’s books and young adult fiction even if you are in your 90s.
  • TV
    • All of Criminal Minds is on Prime, that’s a lot of episodes!
    • Comedy series’ on Prime – Modern Family, Life in Pieces, The Middle
    • Documentaries on Netflix – The Pharmacist, The Trials of Gabriel Fernandez, explained, 60 days in,
    • Fun viewing on Netflix – You Me Her, Clueless, One day at a time, Grace and Frankie
    • Please share your own recommendations for films, tv and books below!
  • Think about all those hobbies you always say you’d like to try, now is the time. Take up knitting or paint by numbers or cooking. Whatever it is, you will find a tutorial out there.
  • Write yourself an isolation bucket list – film nights, skype coffee, cleaning out that cupboard you never get to…

BUT also prepare not to do all these things. All the news and uncertainty takes an emotional toll on people, and makes us feel tired even if we aren’t doing much. Think about small, bite sized activities and intersperse them with rewards such as lunch, a cup of tea or an episode of your current go to tv show.

These are strange times and if you aren’t used to being stuck at home, it’s likely to feel very constricting but I thank you so much for doing what you are doing. By staying home, you are helping to reduce the spread of coronavirus and keep those of us who are vulnerable safer.

Other related posts
FOMO and chronic illness
Goals, aims and ambitions when you’re retired/ill

Guilty until proven disabled

Guilty until proven disabled

Perpetual fear

Neverending stress

Constant foreboding

And continual dread.

Fight and battle

Battle and fight

Repeat, repeat, repeat…






Disrespected. Intimidated.

Manipulated. Humiliated.

Scrutinised. Patronised.

Head crashing

From the brick wall

You’re bashing against.

Prepare to feel guilty.

Prepare to feel paranoid.

Judged a fraud?

You’re a liar, undeserving.

Judged disabled?

You’re worthless, a burden.

And the trial doesn’t cease

If you pass the tests.

The walls have eyes

And the public are spies.

Perpetual fear

Never-ending stress.

Fight and battle.

Battle and fight.




Today I spoke at a seminar for International Day of Persons with a Disability.  The event was centred around the benefits system and the experiences of disabled people.  When I was asked to be involved, I started pulling together my thoughts about the benefits system and resulting blog post began to turn into the poem above.

A few snippets from the notes I made when listening to other people at the seminar:

The process and system exacerbates conditions.  It is ineffective.  Inappropriate.  And a waste of time and money.  It does not get disabled people into work and may even move them further away from the world of work.  It is unethical and inefficient.

Failures in the system are plunging people into debt, leaving them unable to buy food, making people reliant on friends and family and charities just so they can survive.

“It just smashes your self-worth.  You’ve got to lend money, you’ve got to beg to borrow… you don’t know when you’re going to get money to pay it back”
– Disabled woman, quoted in an ESRC report

Disabled people are under siege from the very system that should be supporting us.

The DWP are stealing dreams and hopes and futures.

Retirement and me

I am a huge believer in sharing our stories and in doing so helping other people to see that they are not alone, that there are ways through difficult times…

So with that in mind, here is the story of me and my ill health retirement.  Or at least the story to this point in time.

I have a condition called Ehlers Danlos Syndrome.  In a nutshell, this means that I am hypermobile, which causes joint and muscle pain, full and partial dislocation of joints and exhaustion.  It’s a genetic condition so it’s been with me all my life but I was probably about 21 or 22 when it started to interfere with my life.

My hands have always experienced the most amount of pain and this obviously isn’t very helpful if you have a desk job.  I had a fantastic manager who ensured I got the support I needed to continue with my job.  Initially, this was an access to work assessment which resulted in a number of recommendations for ergonomic equipment, a special chair and special pens.  This really reduced the amount of pain that I experienced at work.

As time went by, my pain increased and I think I had five different access to work assessments to ensure that I was getting all the support I could to stay in work.  It was a job and a team that I really loved and I didn’t want that taken from me.  Eventually, things got too much for me and through tears I had to tell my manager that I could no longer work full time.

I reduced my hours to four days a week which helped, initially.  Over time that too became exhausting and I reduced my hours again to three days a week.  The next step was working one of those three days at home.  And then that became too much.

It took a lot to admit to myself that I could no longer work.  I think it might have been one of the hardest things I’ve ever done.  The next thing I had to do was tell other people.  After much deliberation and procrastination, I emailed my manager.  It was too hard, at that stage, to tell him face to face.

I’ve always worked.  My dad is a farmer and I can’t remember how young I was when I started to help out.  I started work in a newsagent’s the weekend after my 16th birthday.  I worked full time the summer before and during my time at university.  After graduating, I had about a month of unemployment, followed by temping for seven months, covering sick leave for five months and then starting work for what would turn out to be my final employer.

I worked for my final employer to six years in numerous different jobs but with the same supportive manager.  By the time I retired I was managing the team.  I owe a lot to my team and my manager.  They all went well above and beyond to support me to continue to work.  Without them I would have had to have retired much earlier but because of them the decision to retire was so much harder.

Interestingly, whilst a google search for coping with ill health retirement provides limited information about the emotional side, a search for forced retirement is slightly more fruitful.  I was adamant that I would not be forced into retirement.  This was a decision that I wanted to make for myself rather than have somebody else thrust it upon me.

I imagine the emotional turmoil from a forced retirement would be very different to one you choose.  Although I say choose, it was a choice made with very tight constraints around it.  I am aware that if I hadn’t chosen retirement at some stage it would have been forced upon me.

Returning to my story, having told my manager, I then had to approach HR about my options and the process.  I had a lovely conversation with one of the advisers who set out the different ways this could go and answered the questions I had.  Luckily I was in the pension scheme which turns out to have been one of the best decisions in my life.  I was quite worried because I had only been in the scheme for two years, having had not been able to afford the loss of income previously.  She reassured me that this didn’t matter, we would apply for ill health retirement, I would be assessed and depending on my level of ill I would find myself in one of four scenarios:

  1. I would be assessed as fit to work
  2. I would be assessed as unfit to work but likely to return to work within three years
  3. I will be assessed as unfit to work, unlikely to return within three years but likely to return after that
  4. I would be assessed as unfit to work and unlikely to ever return

Depending on how I was assessed would obviously change the outcome financially.  If I was assessed as permanently unable to work, I would get a pension which will be worked out as if I had worked till retirement age.  Obviously this was the desirable, and as far as we were concerned the most appropriate, outcome.

Several months later and I had finally received the outcome.  In my case I had been assessed as unfit to work permanently and my pension was based on my full time earnings (because I had had to reduce my hours because of ill-health).

In so many ways I’m lucky – I’ve got financial security (although a lot of my pension now goes on care), I can choose what I do with my time, I don’t have to worry about restructures and I have lots of interests.  I knew I wouldn’t be short of things to do however, the reality is, when you have perhaps forty years ahead of you with nothing in them, you can get overwhelmed.

I officially retired at the end of May and at the same time, my door openers were finally fitted to my flat, meaning I could leave by myself!  Unfortunately, a lot of things were tying up for the summer at that point… Adult learning courses, groups etc were all taking a break…

So, now it’s September and things are starting up again and I am hopefully constructing myself a routine.  I have hydrotherapy starting, I have signed up for a weekly art course and am looking at other groups and courses.  I am hoping by the end of the year I’ll have a good idea about how much I can do in a week and have some kind of balance in my life.

Ill health retirement

When I first started to think about retiring due to ill health, I did what I always do, and googled it.  And very little came back.  There were lots of results about specific pension plans and how to apply for ill health retirement.  But that wasn’t what was looking for.  I wanted to know things like how much would I get from my pension, how would interact with benefits, and perhaps most importantly what on earth would I do and how would I cope.

Work doesn’t just provide for us financially, it gives us routine, a sense of purpose, routes towards achievement.  We have relationships at work, we have challenges and problems to solve and all of these are really good for us.

There’s lots of advice out there about transitioning into retirement, my employer even runs a course about it!  But it’s all aimed at people of retirement age and I was 28.  And ill.  My experience was inevitably going to be very different.

I don’t know anyone else who has retired at 28.  It felt like I was the only person going through this.  Obviously I wasn’t, but it felt like it.  And it was that feeling of isolation and feeling that I was taking a path no one else had trodden that motivated me to pull together some of my thoughts and experiences about this process.  Whilst it’s a path that very few people will take, I hope that my words will help that minority.

I shall be gradually posting about my experiences but if you have any questions, please ask (obviously I don’t know any details about pension plans etc, I’m really meaning questions about the emotional side of things).

Should I retire?

The decision to retire on ill health is not always an easy one.  Well, I don’t think it’s never an easy decision but in some circumstances it’s a much clearer path.  For example, if you’ve been off sick for a year or your health has suddenly changed, it may feel more clear cut.  If on the other hand, you have a degenerating illness like myself, it can be so hard to know where that line is.

For me, I finally admitted to myself that I could no longer do this over Christmas 2015.  I had had some time off and then went into work for a day.  By the end of that day I was completely and utterly exhausted.  I didn’t have the energy to sit up and I struggled to talk to my carer.  I don’t mean make polite conversation, I couldn’t even find the words to tell her what I wanted to eat.  Not that I had to mental space or energy to make that decision.  It was that day I realised the impact work was having on me.  Despite having had some time to rest and prepare for my day in work it had still destroyed me.

In terms of options, I guess the main question to ask yourself is is there a way of adapting my work circumstances which would then allow me to continue in my job.  This includes things like access to work assessments if you’re in the UK, working from home, reducing your hours or changing your work hour pattern etc.  Your HR department or union representative should be able to advise on this.  If it’s feasible, you could try taking sick leave and seeing if having a period of rest helps your health.

If the decision to retire is not a clear-cut one, then I would recommend getting an estimate for your pension because this might sway you one way or another.  Financial insecurity was one of my motivators for pushing myself to keep working.

It turns out my pension payments are actually higher than my wages were – I had to reduce my hours due to my health so my pension reflected the full time wage.  However, also check if you will need to pay for care.  I assumed that because I didn’t pay for care whilst I was working that I wouldn’t when I retired.  Turns out that’s not the case…. But that’s a story for another day!

The productivity myth

Every single moment of your life needs to be spent being “productive”.

Once again, I am so grateful for twitter. Without it, the only person of a similar age I’d know who isn’t actively seeking employment would be my sister. With twitter, I am in contact with a number of people of working age who are not able to work. And that is a powerful model in a society which tells us we have to be productive. I don’t think I know anyone who hasn’t internalised this message. Which isn’t surprising given how prolific it is.

Today I’ve received an email link to top productivity hacks, a twitter link to managing your business whilst working full time and numerous Pinterest pins about getting the most out of your day. And I’ve probably missed a few hundred similar articles. And it’s not just “making the most” out of your day. There are lots of people preaching about the value of getting up fifteen minutes earlier. And we’ve all come across the idea of stopping smoking as we sleep. Even at night, we are still required to be productive. Preferably you’re also multitasking so you’re being even more productive.  And when we’re not being productive, how many of you are feeling bad because you aren’t being productive?

You’re making jewellery in your spare time for pleasure? Well make that a legitimate way to spend your time and get selling it…

And when you’ve got to the end of doing all the things productively, you’d best be planning on using that hard earned time for more productive things.

And this is one of those occasions where I am thankful to my illness. I cannot be productive all the time and it’s so nice being off the treadmill. It took a long time before I could start to let go of the guilt – “I should be doing x… I need to do y… I’m useless…” – and this is still something I struggle with. But I now plan rest into my life as if I were planning an activity. If I’m doing something Monday, I need to to make Sunday and Tuesday more restful. In my case it’s essential but I think most people would benefit from looking at the balance in their lives.

Side note: I’d like to add that I am a huge fan of efficiency. Drives me up the wall when people do things in an inefficient way but efficiency isn’t the same as being productive. You can do loads of things quickly and be efficient but if you have an hour and you’re not working, well by gosh, you aren’t being productive.

When someone asks you what you’ve done with your weekend, do you freeze and say not much because what you’ve done doesn’t feel productive? Even if you really enjoyed your Netflix and takeaway.  I know I used to.

Sister to the productivity myth is the busy is better lie.

People wear their busyness as a badge of pride. “Oh I can’t stop, I’m back to back meetings… sorry I’ve not had chance to ring you, I’ve been super busy…” Being busy has become synonymous with being important.

And yes, we might get a lot done as we push through our busy lives… But we also get exhausted and irritable and snap at our partners, children, goldfish… And I suspect being constantly busy or feeling you should be probably feeds into mental health problems.

I know people who work ridiculously long hours and consequently never really see their families. I think working long hours can make us feel indispensable and that can be a really nice feeling so we do more.  Then people expect that as a minimum so you have to do a bit more… But, and I don’t want to hurt your feelings, there are very few things in this life that can only be done by you. If you’re suddenly working 70 hours a week, chances are, your boss needs another member of staff… Someone else can do that. But it’s much harder for someone else to take your wife out for an anniversary meal or throw your friend the best birthday party or any of the things which fall by the wayside because you’re busy being busy.

This feels like an appropriate point to throw in some poetry:


What is this life if, full of care,
We have no time to stand and stare.

No time to stand beneath the boughs
And stare as long as sheep or cows.

No time to see, when woods we pass,
Where squirrels hide their nuts in grass.

No time to see, in broad daylight,
Streams full of stars, like skies at night.

No time to turn at Beauty’s glance,
And watch her feet, how they can dance.

No time to wait till her mouth can
Enrich that smile her eyes began.

A poor life this is if, full of care,
We have no time to stand and stare.

By William Henry Davies

I’m not denying there are situations where working three jobs and barely sleeping is the only option. That in itself is a horrific state of affairs in this age.  This post is more aimed at people who have the luxury of earning enough to cover the rent and bills and food.

Being busy isn’t in itself bad, but being busy because it boosts your self worth, makes you feel important or because you feel you have to suggests to me that you need to think about it. And not being busy busy busy will give you time to do that.

End Note: You know how people say you teach or write what it is you need to know? Well, with the help of tarot, I realised I was writing this blog post about not having to be productive all the time at the same time as getting stressed out because I currently don’t have a purpose or way of contributing to the world… Yes ill health retirement is an extreme of not being productive all the time but it’s still OK. I’ve been productive for years. I will be productive in some way in the future. It’s OK that I’m not being very productive right now.

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.

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!