Connecting with nature when you’re stuck in the house

I love nature.  But I am limited to wheelchair friendly parts of it.  And only when it’s not raining.  And my pain levels and energy levels further restrict things.  And if I want to see nature that’s not in my immediate neighbourhood, I am reliant on friends and carers and my manual wheelchair.  Which all feels very limiting and stifling.

There are some great places to get into nature with the wheelchair.  York has a number of nice parks, a riverside path etc.  There is a nature reserve just north of the city (Moorlands), St Nicks Fields (I’ve not been yet) and within an hour there is Potteric Carr (I don’t think I’ve blogged about that yet but my review is over on Euan’s Guide).

However, if you can let go of the idea of what “being in nature” looks like, you can experience it from home, or even your bed.

For me, for a long time, being in nature meant being outside, being away from people, being in uncultivated, un-manicured space.  It meant sitting for a while breathing in fresh air.  It meant walking and getting off the beaten track.

I’m starting to adjust that idea.  In line with my word of the year, I am trying to notice the little things and that includes nature.  I do think you have to attune yourself to notice things, train yourself almost.

“I like it when a flower or a little tuft of grass grows through a crack in the concrete. It’s so fuckin’ heroic.”

― George Carlin

But surely you need to be able to get out of bed?

Not necessarily.

Think about where your bed is in relation to the window.  I  miss my old flat for one reason only – from the bed, at night, I could see the stars and the moon through the cracks in the blinds.  My current bedroom doesn’t allow that but the bed is opposite the window so if I’m in bed with the curtains open, I can see a slither of sky, a few tree branches and the sky (and birds and clouds) reflected in the windows of the drs surgery.  Sure, it’s not the same as being outside, but seeing a flock of birds head over is still a great moment.

Could a bird table be placed outside your bedroom window?  It’s not always an option but if you can, it would be great for encouraging nature to come to you.  Or plants placed strategically so you can see them from your bed?

Think similarly if you have a chair you spend a lot of time in.  When I’m not in bed, most of my day is spent in my rise recliner chair.  It’s angled towards the tv, but also towards the window so movement outside can catch me eye.  Just yesterday morning, I looked out my window and a wagtail flew onto the road, pecked around and flew off with some food in it’s beak.  I didn’t even have to leave my chair.  I’ve just glanced out the window and there’s a beautiful golden winter light catching the bricks of houses with it’s glow.

Other ideas

A gentle and effortless connectedness to nature helps give meaningful purpose to our lives, improves well being and allows reflection.  Establishing this connection can be facilitated by taking time to appreciate ordinary things and to engage more fully with nature.  Life is now rapid and we rarely pause to appreciate the moment.

Miles Richardson

Obviously what you are able to do will be different to me, and I can’t do everything I’m suggesting but I wanted to collate a collection of different ways you can connect to nature whilst being unable to go outside.

  • Connect with the seasons:
    • seasonal eating
    • seasonal creative projects – i am taking photos of the same tree each season for a year
    • seasonal celebrations – think harvest, think may day, hot cross buns in spring
  • Indoor gardening
  • Read magazines etc about nature and wildlife.  I like Wildlife magazine and National Geographic.  These have the advantage of being relevant to the season you’re in.
  • Read books.  There’s been a boom in nature books in the last few years so you’ve got plenty to choose from.  I’ve just bought Needwood by Miles Richardson.  Amazon describes it as “a celebration of the joy that can be extracted from ordinary things in the natural world”.  It is split into sections of time and my plan is to read it slowly over the year, in line with when he wrote each section.
  • Keep a book to hand to help you identify the birds etc that you see.
  • Watch things online or dvds about nature – there are plenty of David Attenborough programmes out there!  For epic wildlife, I like the Yellowstone series.  But perhaps more in-keeping with the theme of this post would be something looking at a more microscopic world, eg the secret life of plants.  For close to home (in the UK), maybe springwatch and its seasonal relatives?
  • Webcams can give you a view of the world that you wouldn’t get to see otherwise.  As well as zoos, places like national parks etc often have cameras you can access from their websites.  Apparently webcams are available specifically for avid bird watchers so you could use one to enjoy what goes on in your own garden.
  • Listen to recordings of bird song or rain or the ocean.
  • Enlist the help of others.  Although it can feel like you’re missing out, asking friends and family to take photos and bring in twigs, flowers, leaves, stones, shells, feathers etc can help you to feel more surrounded by nature.  Pay close attention to the objects – what do they smell like, feel like, look like.  Get to know the pebble, notice it’s intricate details, it’s subtle colours etc.
  • Notice the changing weather and how the light changes in your room, maybe even hang a crystal so you get rainbows dancing on your walls.
  • Cloudspotting is something I want to try again.  If you can, maybe take photos of clouds?
  • If, like me, you’re often awake in the early hours, listen out for birds waking up.  Can you identify any bird calls?
  • Follow nature accounts on social media.
  • Open your window so you can feel the breeze and smell the rain.
  • Surround your home with pictures of nature.
  • Creative projects about nature – photography, writing etc.
  • Decorate your room with pebbles, shells, driftwood, bowls of fircones etc.
  • Use incense or candles to create the smell of your favourite flowers.
  • Maybe get a fish tank.
  • If you can get to your front door, look out at the stars, breath in the air, feel the rain on your skin.
  • If you go out for appointments, look out for nature then.

I’d love to hear what other ideas people have for bringing nature inside.

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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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.

image

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What strategies do you have?

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!

Friends and chronic pain

I apologise if I’ve already talked about this, I’m currently on more than normal painkillers and my hands are too wrecked to search through old posts.

I got an email today which nearly made me cry, which could be the extra meds making me fragile…  it was 17 texts people with chronic pain would like to hear after cancelling plans.

I know I’m not the only person who really struggles between doing what their health needs and doing what they’ve planned and want to do. It also comes with a rubbish side of guilt at letting friends down and fear that you’ll weaken your relationship with them.

And there will be some people who won’t understand and who will slowly fade out of your life. I’ve seen this happen and have felt the pain of it first hand. It’s awful. It hurts. It shakes your understanding of relationships and makes you wonder what’s wrong with you. But, it is an excellent way of getting rid of people who aren’t really your friends anyway.

And there will be people who really step up, utterly surprise you and really deepen your friendship. These people are amazing. And they are the people you want in your life.

Regarding cancelled plans, the examples in the mighty article seem to fall into two categories; “no worries, I hope you’re OK, let me know if I can do anything” and “I’m coming round and looking after you by doing the laundry / taking the kids/just chilling out with you”. Both of these have their place. But I’d like to add a warning about the second one. Whilst it’s a lovely offer coming from a place of love, there will be times when it’s not useful. If I’m feeling really shit, I often just want to be left alone. So make sure there’s an easy way for someone to turn the offer down without adding to their guilt.

Cancelled plans is obviously just one additional consideration when being friends with someone who has chronic pain. Other things to consider are the types of plans, how your friend can get somewhere, tuning in to how they’re doing, the length of time you see them and many more. This will vary from person to person but for me, the following are incredibly helpful and thoughtful and make me feel less of a nuisance because of my pain.

Types of plans – I can’t do evenings any more. I’m asleep by 8pm. And I hurt more and am tireder and find everything much harder in the evening. I also struggle with meals out and even going out for coffee can be difficult. There are exceptions to this but on the whole, it is so much easier for someone to come to me and make themselves a coffee. It means i can sit in my comfy chair, I have no travel time, I have access to everything I need. And because there are no additional stresses, I can spend longer with my friends. That said, I do need advance notice so I can plan rest and recovery time. Don’t just drop in, and generally I can’t arrange to see friends on the day.

Travel – I’m currently housebound so that’s a huge thing I need my friends to factor in. If they can drive or push me somewhere then that might be an option. But the longer the travel time, the less time I can spend doing something. I need to make sure I have enough spoons to get home again.

Being aware of me – I have a few friends who I love because they notice when I’m flagging. I don’t want them to go but it’s for the best as my pain is rising and energy is falling. I can also tell them when I need to kick them out and they don’t make me feel bad for it. This also needs to be factored into more formal plans eg cinema and a meal would be too much for me, I could do one or the other. As much as is practical, I find seeing people little and often is much better for me.

Don’t rely on face to face – because I’m limited in the amount of time I can see my friends, I really appreciate it when they get in touch. It can be a hi how are you doing, a picture of a cat, or an I saw this and thought of you link. It doesn’t need to be much, just let me know you’re thinking about me. Chronic pain can get very lonely.

Saying all of that, I have a friend who’s wonderful and we do go out for day trips. The reason this works is because she drives, she pushes me around, she checks how I’m doing and is tuned into my pain and energy levels. We plan in advance and she checks when my evening carers are here so she can get me home in time to rest before they arrive. And we don’t have to talk constantly which I find exhausting. She also does little things like help me with my coat without me needing to ask.

It’s a whole other post which I think I’ve touched on before, but there are also Internet friends who can be amazing in very different ways.

Basically, if you have a friend with chronic pain, just take a moment to put yourself in their shoes and be a little more thoughtful.

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

Being disabled is a full time job

So, as I’m sure you’ve heard, the government are putting pressure on disabled people to work. Perhaps if all the bureaucracy around being disabled were easier to manage it might be more realistic.  Let’s look at a week in my life balancing being disabled with working:

Monday: day off. Wake up at 8.30. Carers are with my 8.30-9.30.  Carer comes back to my physio appointment at 12 which means leaving at 11.30 or earlier in order to get a blue badge parking space at the hospital. Physio appointment includes prejudice and inappropriate treatment.  It wipes me out and we get home by 1.30.  I’m supposed to meet with CQC inspectors at some unknown time today about my care agency.  They never turn up. Carers are back 5-6 and then I’m asleep by 7.30. At some point I needed to ring the taxi company that take me to and from work because taxis keep failing to turn up. Add onto that my dislike around phones and that simple task becomes huge. I also needed to speak to my social worker about social housing.

Tuesday: work (I do work 3 days a week). Wake up at 7.15. Carers 7.15-8.15.  Taxi due at 8.15. Most of the time it’s getting on for 8.30 before it arrives. I have to wait outside because I use my wheelchair and I can’t get it into my house. This leaves me cold and in increased pain before I’ve even got to work. Finally get to work, which isn’t as accessible as it should be. Battle people’s prejudice in the work place. The struggles around actually being in work (despite numerous access to work assessments) is a blog post of its own. Go home. Or I would if the taxi turned up… Carers are waiting for me when I get home and leave at 6.30.  Bed by 7 on a work day.  Exhausted. In pain.  On work days I basically do nothing except attend work.  I have no energy or spoons or time for anything more.

Wednesday: day off. Carers 8.30-9.30.  11-12, seeing my cpn. She has to come to my house because the place she works is inaccessible. I find appointments quite tiring.  After lunch and resting a while I then chase up my wheelchair appeal. I also have to sort out seeing a house with my social worker which involves ringing the taxi company again. Carers are back 5-6, I’m asleep by 7.30.  Days i’m not in work I will try and get something creative done, depending on pain and energy levels.

Thursday: work. See above.

Friday: work. This is the hardest work day because I’m still exhausted from Thursday.  Before I start work I have to see my psychologist so i don’t get to work till 11am.  Thankfully my work are incredibly good to me because this is 2.5 hours a week when I should be in the office.

Saturday and Sunday: similar to my days off but Saturday is hair wash day and Sunday is body wash day.  Both are exhausting and painful and take a lot of time.  I can’t get into my bath/shower so we have to sponge wash me.  It’s cold and undignified.  If I want to go out, I have to do so when my carers are here because I struggle with my locks.  On a good day I can manage them once in the day so they either need to be there to lock up or unlock.  On a bad day I can’t manage the locks at all.  I also can’t get my wheelchair in my house so going out means I have to get a carer to put it outside or I have to struggle to get it out of my shed.

In addition to the above, I need to do regular physio, all the normal life admin, manage meds, sort out mistakes in care rotas, go to regular gp appointments, sort out benefits etc etc. All whilst exhausted, in severe levels of pain and battling mental illness.

Because my pain is getting worse, I’m struggling more and more to actually make it to work on those three days.  In addition, getting cold whilst waiting for unreliable taxis and having to chase taxis and argue with the taxi company (yes I did book a taxi…) makes me start to wonder if it’s really worth the amount of mental and physical effort work takes out of me.  Just getting to work in the morning can be a feat of its own.