Things which make my life easier

I’ve already written about this twice but my condition changes and so does my life and what I use to help me get through the day so I wanted to do another update.  You may also want to check out the following posts:

Things which make my life easier: Post 1

Things which make my life easier: Post 2

Reading with hand pain

  • Having carers makes a huge difference to my life
  • Home adaptations through the council:
    • Electric door opener for the front door – I have a fob button which opens the door so I don’t damage my shoulder or hand when I try.  It also means I can let people in without having to get up.
    • Electric curtain and window openers
    • This all results in a lot of remotes which I have tied on to my trolley so they are always to hand.  I also use remote controlled plug sockets for lamps.
  • Understanding friends
  • Twitter
  • My electric wheelchair, manual wheelchair and crutches
  • My diary – not only does it keep track of appointments and carers, I use it to track the things I need to do to maintain my health eg exercise, seeing people, using my brain, being creative, getting outside, getting rest etc.
  • Connecting with nature
  • Frozen meals; I often get my carers to do a batch of macaroni cheese or similar and we put it in takeaway style tins.  This means I can have comfort food on nights when we don’t have time to cook from scratch.
  • Riser recliner chair
  • Chewable toothbrushes and baby toothbrush.  The latter is lighter than most electric toothbrushes and has a smaller head.  I struggle with the vibrations causing hand pain but because it is smaller, I can just about cope with carers cleaning my teeth for me.  When my jaw pain is bad I use mouthwash and if my legs are bad, the carers leave the cup of mouthwash on my trolley by my bed along with a plastic cup to spit into.
  • 4Head is a roll on headache treatment which works by slightly numbing the area and thus breaking the tension cycle.  I use it when my shoulders are painful as this causes me neck pain which causes a headache and results in me holding my shoulders badly.. So I rub it on my neck and shoulders to help me relax them a little and interupt that cycle.
  • Hot rox for keeping warm.  I rotate mine between my hands and my legs when I’m in the wheelchair.
  • I drink a lot of juice and in the winter it was getting far too cold when I went out so my juice bottle now has a very thick, snuggly sock for it to live in.  This keeps my juice a little more drinkable in winter.
  • Slippers you can sleep in mean you aren’t having to put them on and off and on and off, especially helpful if, like me, you curl up in chairs.  Note, whilst I love having slippers I can sleep in, my physio insists I should wear ones with more structure.  I don’t because each time I sit down with my legs raised (which is basically every time I sit down) they fall off.
  • Portable foot rest.  I used this more when I was on crutches – it is portable and means when you’re in meetings or on chairs where your feet don’t quite touch the floor, you can rest them and reduce the leg pain.
  • Label maker
  • Wheelchair cosy and blanket
  • Prepaid prescription card.  I’m not eligible for help with prescription costs but the prepayment card means I only pay £100 a year rather than the £80-100 a month it would cost me otherwise.

What makes your life easier?

 

Things which make my day easier

Someone recently found my blog by looking for “ehlers danlos can’t open jars” and I hope they found some help (try dycem jar and bottle openers).  I wrote a post in 2014 (2014, can you believe it?!) with some tips for stuff which really helps me. Anyway, a lot has changed since then so I wanted to write an updated version.

Collection of drinking vessels
a collection of my cups, a cup cover and one of my hot drink straws

If you find this helpful, do check out the 2014 post as it all still holds up.

  • Tablet and tablet stand – these were included in my last post and I still love my tablet and use it so so often throughout the day.  It’s my contact to the world.  It’s my books and my storytellers.  It’s my calendar.  It’s my notebook.  It’s my teacher.  It’s my alarm clock.  It’s my tv.
  • Pillows – find pillows that work for you.  I have two standard bed pillows and a, rather pricey but worth it, U shaped pillow.  It’s filled with beans so it squishes and my shoulders have dislocated a lot less since I got it as they are now supported at night.
  • Mattress raiser – I got mine through the local council.  Basically it goes under your mattress and allows you to raise the head end of the bed like a profiling bed would using a remote.  This makes it so much easier for me to get in and out of bed, more comfortable when I’m in bed but wanting to sit up and it’s easier for my carers to get me out.  The combination of this plus my mattress topper means that I have king size sheets for my double bed.  Much easier for my carers to get on and less likely to twang off in the night!
  • Bed wedges – there are lots of different options, I have one which supports my knees and ankles
  • Duvet raiser thingy which keeps the duvet off my feet (the weight of my not very heavy duvet is enough to hurt my ankles and dislocate my toes).  I have my thingy attached to my bed using a strap which goes round the mattress and I have a blanket pegged over the top, round the sides and the end of the bed so my toesies don’t get chilly!
  • Overbed table – I got mine for a bargain price of £3 at my local second hand furniture place.  It gives me a place to put things like meds, my tablet etc so that they’re essentially in my bed but not going to fall prey to my tossing and turning.  I have a tray on top of mine which has the advantage of making it look less clinical whilst the edges stop things falling off.
  • Key safe – this means that my friends and carers can let themselves into my flat if they know the code to the key safe.  In my old flat I kept my spare keys in a combination lock locked shed.  It means I don’t have to get out of bed to let my carers in and it’s there in an emergency so other people can get into my flat.
  • Cutlery – I can now only use my bent spoon to eat, anything else causes too much pain or is impossible.  You may find spoons easier than using a knife and fork or maybe just need a thicker handle.
  • Plastic crockery – this is lighter and obviously less breakable.  I have some nice bits from Cath Kidston, paperchase and I got some in the BHS closing down sale.
  • Cups and drinking accessories (what you don’t accessorise your drinking? how last season are you…?!)
  • Trolley – this lets me move a lot of stuff from room to room at once, reducing the need for multiple trips as well as reducing risks of dropping things and lessening the pain in my hands
  • Plug pulls – a little bit of plastic which attaches to your plugs to make them easier to pull out, genius!
  • My pouch – I love my pouch.  It holds my tablet, my money, my keys etc.  And because it isn’t an actual bag, it squishes down beside me in the wheelchair so I can get to the important stuff.
  • Hairbands – especially wide fabric ones and headscarves are perfect for bad hair days, weeks when you’ve not managed to wash it etc.  And dry shampoo is also helpful here!

I’ve included links to help illustrate what I mean.  I don’t get any money from the companies and obviously you should shop around and find what works for you.  You may also be able to get some of these things through your local community equpiment service (in the UK at least).

 

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Peace: 8 month update

My word of the year is peace. Although actually it’s developed into more of a nebulous concept over the year.

My pinterest board keeps me aware of it. I also have peac written in magnetic scrabble on my fridge (the second e has disappeared…!).

In terms of progress, things have become a lot more about boundaries, tarot and spirituality of late.

Boundaries

A big part of this is setting boundaries around my flat. My neighbours continue to be awful people who make a lot of noise. I’m talking two barking dogs, vacuuming 21 times in one week, 2/3 of which was between 7.30pm and midnight. This week they’ve started shouting at each other at 5am. 5AM… And I’ve checked out my options and there’s nothing I can do because I strongly believe if they know I’ve complained about them, they’ll get worse and (at least) verbally abuse me. And there’s no way of complaining without them realising I made the complaint…

On top of the general crapness of that, I really struggle with noise. It really affects my stress and anxiety levels. Having the extractor fan on bothers me, let alone anything else…

But I can’t change things with my neighbours so I needed a new approach (although moaning a bit does help, sorry twitter folk). To do this, I walked through my flat mentally setting my boundaries and strongly imagining a buffer between my ceiling and their floorboards.  This, whilst it won’t change the noise, changes my relationship to it. I now feel more in control. When they make noise, I take it as a signal to take a deep breath and strengthen my imaginary boundaries. I know that all sounds very hippy, witchy, woo woo but it’s working for me. It’s about my intention to let the noise go, to let it brush off me and to be more in control of my reaction to it. Alongside this I keep my fingers tightly crossed they might move. And strategically place leaflets from estate agents so they’ll see them…

Boundaries are also about my emotional boundaries. Especially important around some people, including some of my care team. Again, I’m trying visualisation techniques to help with this as well as being conscious of setting boundaries. On occasions where I know my emotional boundaries are likely to receive hits, I’ve also set the intention to maintain my boundaries beforehand and used a crystal to remind me of this and to help ground me. There’s a guided visualisation by Marthe of the Freedom Experiment which I’ve used although there’s hundreds of others all over the internet.

I’ve been thinking about EDS* and boundaries; people with EDS often have poor proprioception** so don’t really know where their physical edges are. A lot of people with EDS also have anxiety and I wonder if there’s a link between proprioception and anxiety. As my anxiety rises, I find it harder to feel where I stop and the world begins. The converse is also true; if my proprioception is bad, my anxiety rises. So one thing I’m trying to do when anxiety hits, is re-find my physical boundaries. I’m very early on in exploring this. So far i have had a carer rub moisturiser into my arms which helps (and probably helps more of you can do it yourself),  covering myself in heavy blankets or my beanbag style heat packs and mindfulness body scans (which didn’t work for me but might for someone else).

*Ehlers Danlos Syndrome

**Proprioception refers to the body’s ability to sense movement within joints and joint position. This ability enables us to know where our limbs are in space without having to look.

Tarot and peace

How does tarot bring me peace? Or more accurately, help me find my peace. Well, it helps me see what I’m feeling, worried about etc. It acts as a mirror, showing me what’s going on in my subconscious. And once I know what I’m feeling, rather than hiding it away in a clenched jaw or general irritableness, then I can try and process it and if needs be do something about it.

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The actual process of getting out my cards, sitting down, shuffling and drawing the cards is also a way of pausing all the daily nitty gritty stuff. I take a deep breath as I’m shuffling and ask for guidance. I know a lot of people have bigger rituals around tarot but small works for me and marks a divide between normal time and tarot time.

Rituals and intentions

Which brings me to rituals.  Rituals are helping me feel more peaceful, they give me anchor points which is important when all your days look the same.

My Friday check ins are a form of ritual. But I’m also starting to follow the seasons, moon cycles etc. This gives me lots of chances to think about what I want to embrace, release, be thankful for etc.

Different points in the moon cycle or year also focus on different things which I may not have considered on my own, for example Lammas at the start of August focuses on harvesting, looking at what you’ve grown and being grateful. I didn’t do much for it, I lit a candle, did a tarot reading and had a think about what I’m “harvesting” (mentally, emotionally, physically eg new friendships, financial ventures, skills you’re learning etc) as well as what hasn’t grown, or is still growing.  Doing this helps me be more aware of where in the year we are, anchoring me to time and tuning me into my SAD tendencies.

Rituals can also be a way to consciously set intentions such as the intention to try and remain grounded in a tough situation, the intention to embrace your personal power etc. Stopping to consciously decide and tell yourself what you want is much more concrete than vaguely thinking something to yourself.

Intention setting may simply involve you saying out loud that you want to pursue career opportunities or it might be more involved and you might include planning as part of your intention setting. However you chose to do it, I find the act of acknowledging to yourself means that your mind is more attuned to relevant things or interprets your world through a lens related to that. Using the career example, once you acknowledge that’s your intention, you are likely to notice job adverts, networking opportunities etc more often.  If you tell other people about your intention they may bring opportunities your way. I guess in a lot of ways intention setting is about consciously focusing on what you want.

This is my little alter type corner. There’s crystals, candles, shells, stones, twigs, fir cones, feathers etc. I love crystals, they’re beautiful objects and the twigs etc are little bits of nature which is especially nice to see when I’m having a bad day and can’t leave the house. Framed above my desk is a feather a friend found and sent me. Next to the large glass bowl there’s a salt lamp, a little shrine type thing to my Granma and a painting I did earlier this year to process and mark my move from working to retirement.

Creating an encouraging environment

My inbox is filled with daily, weekly, monthly reminders about being true to myself, about self care, about finding your way. I don’t read them all but i read a lot more of them than I do emails trying to sell me possessions which promise true happiness… Some of the newsletters or blog post emails which I look forward to receiving are:

I’m sure there are more but these are a selection of emails which make me feel empowered, excited, understood etc.  Some days I am not in the right head space for them but other days they tell me exactly what I need to hear.

My Twitter world is a mix of the above mentioned newsletter senders, cheerleaders, shoulders to cry on, people to celebrate with as well as people talking about things which are important to me, and perhaps even more crucial, no people who just focus on stuff which makes me feel bad (gossip magazines, diet companies etc).

And there goes the vacuum upstairs; I’m taking a deep breath, re-visualising my ceiling boundaries and refocusing on what I’m doing.  I’m not zen, I’m not an embodiment of peace, but I’m an awful lot more peaceful than I was at the start of the year.

How are you getting on with any words of the year you set?

Disability and sexuality, part 1

I was on a train about a year ago, the first time I’d been on a train in my wheelchair. I was sat in the wheelchair section along with some guys off to a football match. It was ten in the morning and they’d been drinking. And were talkative. I ended up left alone (as far as I was aware – it turned out there was a women round the corner listening to this who only spoke up once they’d got off the train…) with them for the 22 minutes between York and Leeds. And they were awful. They completely invaded my space, leaning on my chair and many other things which I’m not going to go through. But then, basically out of nowhere, one of them asked if I could have sex what with being in that thing, insert wild gesturing towards my chair. What the f***?

I’d “known” them about ten minutes and now they wanted diagrams about my sex life. And felt it was completely fine to ask for them. Not ok. Way way way not ok. But I was alone with them and had no idea how far they were travelling and I couldn’t move to another part of the train.

So I handled it in the only way I felt safe, with humour and changing the subject. Inside I was fuming and wanted to have it out with them about how inappropriate it was but I felt too vulnerable. If they’d turned nasty, I’d have been stuck. Indeed, when they left one of them hugged me and the other full on kissed my lips. Again, not ok.

But… and I am in no way excusing their behaviour, society paints people as asexual so when they were faced with a young woman in a chair I suspect they genuinely couldn’t put two and two together. I suspect they’d have hit on anyone who was female and near them on the train but it just so happened that it was me and my disability. And I think it threw them through a loop.

Which is why we need to talk about disability and sexuality.

So, can disabled people have sex?

Yes.

Wait, you want more than a one word answer? I think you’re probably wanting to ask how disabled people have sex then. And the answer is long. Probably infinite. Because, like with abled bodied people, everyone likes different things and is capable of different things. Indeed the sex that a disabled person has will probably vary depending on the partner, like with abled bodied sex…

But isn’t it a bit rubbish?

No. Again, everyone enjoys different things and are able to do different things.

I think it’s important to remember that we have mental disabilities, sensory disabilities and physical disabilities and obviously they will all have a different impact on sex. Often the difficulties people have in understanding how disabled people have sex is with regards to physical disabilities. Issues around learning disabilities tend to focus more on before sex, in particular around things like consent. And people seem to on the whole forget about mental illness when talking about how disabled people have sex… FYI, depression, anxiety and other mental illnesses can impact on your sex life. Perhaps that’s a different blog post.

Go on then, how do you do it?

Firstly, what do you mean by sex? So many people are referring to penis in vagina penetration when they talk about sex. Which is so uncreative… I can’t have penetrative sex as I’ve discussed here previously but I still enjoy lots of other things. You just need to explore more, see what works for you and your partners. Kiss, cuddle, use sex toys, make use of the bed raiser, have strategically placed cushions…

And communicate. The odd grunt and groan here and there probably isn’t going to cut it – can you tell the difference between the “keep going that’s amazing you’re rocking my world” groan and the “shit, my hip just dislocated but I don’t want to say something and ruin the mood” groan? Make it sexy, make it dirty, make it intimate.

You might need to talk beforehand about some things – where are you in pain, where should I avoid touching you, what happens if…, is the bed or the floor or the bath best for you, how does your disability affect you when it comes to sex…

There might need to be another person involved for example to help you get undressed or to get you onto the bed etc.

And if things go off course, humour is helpful. Except if you’ve just accidentally knee-ed your male partner… Turns out that’s not so funny… Oops!

But other than that, it can be a lot like “normal” sex.

Sexuality and disability has information about sex with partners and masturbation including ideas for particular conditions etc. And talk to your professionals.  Some of them will be squeemish and not answer your questions or try and deter you from having sex but that’s their issue not yours.  Keep trying until you get the info you want.  Sexuality is part of who you are and a healthy sex life can be great for your overall wellbeing.  Plus, orgasms are apparently great for pain relief.

Have fun and stay safe!

Personal strategies for living a good life

One of the last sections of my Future Learn course is around personal strategies for living a good life with an impairment.

“Because disability studies collects a huge range of impairments, each of which are experienced differently in everyday life and have different impairment effects, there is no end to the personal strategies people with impairments use to support a good life.”

That being said, it does suggest some examples; community, the spoon theory as a means of helping people understand and mindfulness.

I started to respond with my own personal strategies but ran out of space so I thought I’d carry on over here and invite your ideas and strategies as well.

Community

Online community is a huge way I cope with things. I blog and use twitter to “meet” other people with my condition which helps me feel understood as well as having people to offer helpful tips such as what bottle opener works best. These friends also understand the impact of society and it can be so helpful to know you aren’t alone in dealing with things such as access issues or abuse. Indeed, it helps me to realise that I am not the problem, if it’s happening to other people then it’s not about me personally. I could rationally reach that conclusion but the individualistic nature of western society can really make things feel personal.

Pacing

Pacing is one of my really important strategies. If you have chronic pain or fatigue, do look it up. It’s the idea of doing something for slightly less time then breaking then going back to it rather than doing a lot of something all at once and then paying for it.

Humour

Humour is essential. Admittedly, my humour tends to be dry, sarcastic and biting but there you go.  The first day I had care we got into a bit of a mess getting changed. It, like a lot of my life, is undignified and humour can make it easier to cope. It can still get me down of course, it just means I’m not always down about it.

Without a degree of humour, it’s hard to let someone else wash you intimately.  It can become tense and awkward if you let it.

Action for change

This is something mentioned by one of my fellow students.  Instead of coming up with personal strategies to navigate a world which isn’t designed for us, we should challenge that society.  And I think this is really important and there are lots of ways of doing it, from raising awareness by sharing your experiences to hanging off a bridge in your wheelchair.

A moan

It’s not a very fashionable thing but having a bit of a moan from time to time can help.  Don’t get stuck there but getting frustrations off your chest can be cathartic.  And can help with awareness raising!

Support groups

This should probably be included with community but there’s something more specific about a group of people who are experiencing the same things as you.  With that shared knowledge, you can problem solve, you can suggest ideas which have helped you, you become more aware of shared issues and can come up with ways to address them.

Netflix days

Sometimes, we need a down day.  And if that’s watching netflix in bed, do it.  I remember a conversation with a friend who has mental health issues where she was describing how helpful it can be to give yourself a day to indulge in things.  So long as you have a day or time in mind to force yourself back out of it.  My fear of giving in and not getting out of bed has long been that I’d just never get out again.  So this ensures that won’t happen (sort of) whilst giving you the crash time you might need.

Acceptance

God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference

– Reinhold Niebuhr

I’m not religious or in AA but the sentiment expressed in the serenity prayer is one that I think is important when it comes to coping with long term illness and disability.  There are lots of frustrating things I can’t change – I can’t make myself better for example – and getting stuck in a place where I’m angry about it isn’t helpful (there’s a grieving process around coming to terms with acquired disability which is fine, but it’s not a place that’s nice to get stuck in).  It’s taken a long time but I feel I’ve mostly accepted my illness and that’s so much better for my mental health and wellbeing.  And then there are things I can (attempt to) change such as my old workplace being inaccessible.  And this is a much healthier way to use my frustrations and anger.

Creativity

Whether it’s a page in my art journal or a bit of work on a canvas, creating things helps me in many ways.  It’s a distraction from my pain, it gives me a sense of achievement, it’s a way of expressing myself and probably helps in other ways that I’m not really aware of.

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What strategies do you have?

EDS awareness month 2016

It’s that time again folks!  If you’ve not been here long then here’s the gist of things: I have Ehlers Danlos Syndrome (EDS) which isn’t very well known and to help combat that, May has been designated as EDS awareness month.  Bloggers, EDSers, charities etc all put in a concerted effort to raise awareness and understanding.

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Breakfast...

Jargon: There are 6 types of EDS, I have the hypermobility type which used to be known as type 3.  Depending on who you belief, EDS hypermobility type is the same thing as HMS (hypermobility syndrome) or EDS is a worse version of HMS. I use them interchangeably and rarely bother adding hypermobility type.

I’m not going to rewrite the wheel but if you are only going to read one thing about EDS and me, make it my open letter.

If you’re feeling interested and want to know more about EDS, how it affects people on a day to day basis and things which help, try some of these posts:

  • A day in the life of me and EDS 2015 and 2016 – I’m not an expert, I’m a person living with EDS/HMS and my experiences will be different to other people’s but hopefully it’ll give you some sense of what having the condition means.  I’d also like to reassure people with EDS that I think it’s unusual to deteriorate quick as quickly as I have.
  • Eating and drinking with EDS – because not everything is as straightforward as it seems… see spilt drinks, being unable to hold a fork etc etc…
  • Stuff which makes my days a bit better – for me, this includes twitter and my friends (any kind of chronic illness seems to be a great barometer for figuring out who your true friends are)
  • Travelling with EDS – it is still possible to do things like travelling, they just require more planning and depending on how HMS/EDS affect you, they may require more support.  This post was written when I was using crutches and still able to dress myself.  I am desperately hoping that I’ll make it to New Zealand at some point and will be able to write an updated version which includes wheelchairs and carers.  If anyone has any tips about that, I’d love to hear from you!

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.

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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!