Reading with hand pain

It’s come up a few times over the last few months so I thought I’d share what I have learnt about reading with hand pain.

This is just my experience so if anyone can add any other ideas that’d be great!

  • Get a kindle – it took me a long time to accept the idea of not being able to hold a book in my hands and enjoy the physicality of it but once I got my kindle my reading life vastly improved!  Mine is an old one, it was second hand and I got it to see if I’d get on with it.  Amazon do sell refurbished kindles and obviously there are other e-readers available!  Look at the weight of them and if possible, hold one before you buy it.  Mine is a very no frills version.  It literally just does books but it means that it’s a lot lighter than some options.  Also think about how you turn the pages – is it a button or a touch sensitive screen, different things will work better for different people but it’s definitely something to factor in.
  • If you’re going with Amazon then look into whispersync. If an audio version is available, you can buy it cheaper when you have the ebook.  This means you can flick between reading and listening. I struggled to get into audiobooks but found this combined approach really helped.  You can flick through the ebook to find your place if you fall asleep which makes a huge difference to me!
  • Audiobooks themselves are another option.
  • Check if your local library offers ebooks and audiobooks.  These can be downloaded from sites such as overdrive and are great if you can’t get to the library.  Note, last time I checked this doesn’t work on kindles but is great on tablets and probably on smart phones.  There are other electronic lending libraries for disabled people eg Listening Books and Calibre.
  • Not really a reading tip but Kindle and Audible both do deals of the day and there are numerous websites where you can download classics for free.
  • If you want to read a physical book (and some books are still not available as ebooks), then a few things you might want to consider are:
    • break the spine – I know some people find this really difficult but it does mean the book stays open more easily
    • prop the book open – I use my phone to hold the pages open, you can get gadgets which do this but my phone seems to work ok for me!
    • try and stick with paperbacks – they are lighter and you can break the spine
    • thinner books are easier to hold as are smaller books
    • don’t hold the book up, lay it on a table, tray or your knee.  I always used to read laying down on my side holding the book but I’ve not been able to do that for years.  If you do want to lay on your side and read, maybe find a way to prop the book up using a pillow or a teddy or a book stand!  Be careful about your posture when you’re reading, especially if you have pain elsewhere eg I can’t put my book on my lap because it then triggers shoulder and neck pain.
    • flick between reading something physical and something electronic.  I always have numerous books on the go and that means I can choose what is best for my hands, or what is possible, when I’m wanting to read
    • think about what time of day you’re trying to read – for me, nighttime is harder so if I’m reading a physical book, it has to be during the day
    • adopt slow reading – I can only read a couple of pages of physical books at a time which, as an avid and fairly fast reader, I used to find really frustrating.  I’ve since made my peace with this (which is one reason I always have an ebook on the go as well) and I savour the books I’m reading instead of devouring them.  I also only read fiction on my kindle as otherwise I overdo it because I’m caught up in the story.
    • as hard as it might be, limit how long you read a physical book for.  Set a timer if you need to.  If you’re not familiar with pacing, look into it.  It’s essentially the idea that you do a little bit of something, take a little break, then go back to it rather than pushing through, overdoing it and ending up in agony.  That small break makes a lot of difference.

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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Sex toys and disability

Going to assume, given the hush hush nature of talking about sex toys, that this should come with an 18+ warning…  That’s your warning.  I’m going to be talking about sex toys and disability, in case the title didn’t provide you with enough info… Personally, I don’t feel the info is explicit in nature but I’m aware people may disagree…

(Side note: this is focused on people with physical disabilities)

Apparently, three quarters of women own at least one sex toy and 36% of men own a sex toy. So even if people are ashamed of talking about sex toys, most people will have some experience with them.

And they’re great.  They can enhance sex or masturbation, and if you have a disability or not, they can stimulate you or your partner(s) in ways which could not happen otherwise.

So, what are the best sex toys for disabled people? 

Let me refer you to a previous point I made about how everyone is different.  Everyone has different sexual interests and people with disabilities are exactly the same.  Also, you will need to consider your own disability as everyone has different needs, even with the same condition.

To help get you thinking about what’s going to work for you, the key issues for me and sex toys would be; I can’t be penetrated; my energy levels are crap; my hands are quite unhelpful when it comes to things like repetitive movements and fine motor skills (like buttons). I have high levels of pain throughout my body as well but I’m going to look at pain and sex in more detail in another post.

What should I consider when I’m looking for a toy?

A good question to ask yourself when you’re looking at sex toys is what I do want to use this for?  Yes, I know, stupid question.  In particular, are you wanting to use this alone or with someone or have someone use it on you etc?  All of this will effect what’s going to be the right choice for you.

Further considerations include, can you hold and manipulate your sex toy?  No?  Maybe look at something which fits into underwear and can be held in place that way.  Can you control it using on the toy buttons or would a remote control be easier?  Does it matter what it’s made from?  Do you have allergies?  Does your skin tear easily?  Yes? Then maybe look for something made of a very smooth material like silicon or glass and maybe something which doesn’t vibrate.

Can you get the batteries in?  Would you feel comfortable asking someone else to do it?  If not, either manually operated or rechargeable toys might be best.  Also remember that sex toys need cleaning.  If you’ve got a partner they may be able to do that but if not, and you can’t, you’ll need to ask someone else.

Do you live with carers or your parents?  If so, you might prefer a quieter vibrator or toy without a motor.  If you’ve got decreased or increased sensation, then perhaps look at toys which have different levels of vibration etc or something which doesn’t vibrate.

From the point of view of energy levels, lighter is probably better when it comes to weight as would be something you don’t need to hold in place.  Or you could place a cushion so that the toy can rest on it whilst still stimulating you or buy a cushion made for the job.  And cushions are good for sex more generally – great for propping up joints etc.

You can get dildos which attach to the floor, tiled walls, your leg, your face.  Think how much more exciting your sex life could be compared to all the people who think disabled people can’t have sex.  To the 44% of people who wouldn’t entertain having sex with a disabled person, your loss.

Think about the wider environment, nice sheets can make a huge difference to how you’re feeling and make it easier to move around.  Or how about using handcuffs to help keep you in one place?  And use lube (again, if you’ve got allergies check the ingredients or ask for a sample and test it on  your arm or somewhere first. Do not try it out on your genitals if you think you might be allergic!).  You might find particular places easier for sex, on the bed or propped up on the floor by the bed or in your wheelchair or in a sex swing.

I’m afraid I’m focusing heavily on cis women here, I’m not sure I’ve got much to say about men’s sex toys but hopefully someone else does.  If that someone is you, please add advice in the comments (actually, everyone should do that, just keep it on topic please).

Most importantly, try things, have fun and learn what works for you.

Useful links:

http://disabilityhorizons.com/2014/07/disability-and-sex-lets-be-frank-about-sex-toys/

http://disabilityhorizons.com/2014/04/sex-tips-sexy-crip/

http://www.autostraddle.com/our-bodies-our-sex-toys-6-accessible-sex-toys-320004/

http://www.comeasyouare.com/sex-information/sex-and-disability/

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!

Too ill to cook?

Flicking through twitter this week I found a link to Natasha Lipman’s blog post “Too ill to cook?” which resonated strongly with me and feels like it would be useful information for many others as well.

With her permission I have quoted some of her post but do go and read the article over on her site.  And don’t forget about the useful tips section in the chronic pain cookbook!

“…cooking, mannnnnn.  That involves getting out of bed and standing around and like, chopping and doing things. Exhausting! I’ve stopped being fancy in the kitchen and am getting on with more quick and easy simple things to make sure I feed myself well with the minimum amount of effort. And trust me, when you don’t/can’t just bung a ready meal in the oven it makes things a lot harder. Whether I want to or not, I don’t have a choice about spending my energy on this.”

I know many of us with chronic pain are also limited in terms of what we eat and on the whole home cooked meals are better for us nutritionally so I hope the top tips she shares can help keep you cooking.  Please share your own as well.

EDS and drinking

A while back, the lovely Beth of Mermaid in Disguise wrote about Cute Cups for Crappy Hands. And crappy hands being a subject I know a lot about, I accidentally wrote an essay in the comments section…

So I thought it would be useful to share the information here as well.

Collection of drinking vessels

What are the issues with EDS and drinking…

  • you may not be able to swallow. thankfully i can but my sister can’t and I’m afraid I’m not best placed to advise on this one.
  • you may not be able to lift a drinking vessel
  • you may not be able to open a bottle with your hands or a sports cap with your teeth
  • you may have a tendency to spill or drop drinks

Hot drinks

Contigo Autoseal are my go to for hot drinks (the site is american but there are UK retailers, it’s just an easier way to see the whole range on their site).  I’ve never had a spill and the button to open the mouth bit is fairly easy to press but not so easy it will spill in your bag. They’ve got a few designs so you can think about what will work best for your hands.  And they come in a range of colours as well!

Note of caution: your drink will stay hot for hours. If you want to be able to drink it soon, add some cold water!

Hot Straws are also ace for when you’re out and about.  They mean you can order a hot drink and not have to lift the cup, just pop in your straw and go.  The straws also fit into most takeaway cups (through the little mouth bit) which is extra helpful.

Second note of caution: Using a regular straw with a hot drink is not recommended. There are risks around the chemicals used to make them which are then released when they get warm.  Also increased risk of burning yourself.

Cold drinks

I get through ridiculous amounts of squash in a day.  Maybe 2 litres whilst I’m at work and 2 litres when I get home. Way above the recommended 2 litres per day.  And I can’t make my own juice or fill up my own bottle.  So I need a big bottle to get me through the time when there is no one here, which I wouldn’t be able to lift.  My first thought was that I’d have to have millions of small drinks all lined up for me… But then, through the powers of the internet, I came across Hydrate for Health.  And without wanting to seem dramatic, it has changed my life!

I can drink laying down; I just hook it into the walker I have by my bed or chair, clip or drape the end over another part of the walker and I have a litre of juice in my reach. I also have one one my desk at work. People only need to fill up my juice twice a day at work say instead of every hour and no spills.  Pop it in your wheelchair bag and feed the tube round the side and you’ve got instant access to your drink whilst you’re in your chair!

As you can tell, I love it, and I think it’s probably a good moment to mention I am not on commission!  I don’t receive anything from the products I recommend here, I’m just a satisfied customer.

Also Contingo Autoseal do juice bottles in a range of sizes and are ace.  Mine is 400ml which makes it lighter than carrying a coke bottle etc and went all the way to Cambodia with me.  It meant that whenever I was offered a (non fizzy) drink, either in restaurants or on the plane, I could pass over my bottle and not have to worry about plastic cups etc.  They also come in a range of colours and if you venture into the children’s section there are also some cool patterns as well.

And not forgetting alcohol…

Safe Sip drink covers can be used on wine glasses and are easy to use and small enough to carry with you if you’re going out.  I struggle with drinking from wine glasses so I drink wine from plastic beakers with a safe sip cover.

So that, folks, is how I manage to stay hydrated with EDS.  Do you have any other tips or favourite products?

Chronic pain cookbook

As you may already know, I have a chronic pain condition called Ehlers Danlos Syndrome.  My hands are the most affected part of my body and this makes everyday things like cooking very difficult.  As they were worsening, I found that there were fewer and fewer things I could manage to cook.  So I did what I always do, I looked online for advice.  But there didn’t seem to be much… there was a lot about using food to make yourself well again but not much on food that you can prepare when you have chronic pain.  So instead I put together my own advice and recipes.

It’s based entirely on me, my likes and dislikes, my pain and my situation so it won’t be entirely spot on for other people.

Unfortunately, since having the idea of the chronic pain cookbook, my pain has deteriorated too much and I now need carers to cook for me but I hope it is of help to someone.

I’d love to hear your thoughts, feedback and recipe suggestions.

Chronic Pain Cookbook