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!

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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.

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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.

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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!

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?

Travelling with Ehlers Danlos Syndrome

Ok, as promised, I have written some tips for anyone who wants to travel with EDS or a different kind of chronic pain.  This is obviously not an exhaustive list and some of may not be helpful to you, please feel free to share your own tips and tricks below.

When I told people I was going to Cambodia, I got a lot of quizzical looks and “how the hell are you going to cope?”s.  Some of it is bloody minded stubbornness but a lot of it is planning and preparing.  Also, I know that the heat and adrenaline of the holiday will  help a bit.

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Before

  • If you’re going on a tour, make sure you let them know about your condition, any concerns, health and safety risks and your limitations.  They need to know so they can plan accordingly.  They may also require a health check from your GP
  • Get insurance.  Everyone should travel with health insurance but if you have a chronic pain condition it is essential.  I use a UK company called Fish who are expensive but they are OK with me being broken.  I can also declare all my conditions online without having to ring anyone.  I’ve also used Age UK who are very similar to Fish (you don’t need to be a certain age to use them).
  • Get a super lightweight bag which can be carried in lots of different ways – wheels, rucksac and waist/shoulder strap which you can hack on if needs be using climbing clip things and straps from other bags.  My bag is an Osprey one which has wheels and a proper rucksack back complete with waist strap (this makes all the difference to me).  It also has a day pack which zips onto the main bag and is all incredibly light weight.  It also opens along the length unlike a rucksack where you open at the top so there is less rummaging around in your bag and accidentally dislocating your finger whilst you search for clean underwear.  It was expensive but mine was half price in the sales and is well worth the investment.
  • Make sure you have enough of your medication and pack it in your hand luggage.  You might need a drs letter depending on where you’re going and what meds you’re on.  Don’t change meds last minute – I did and it added to the stress!  Again, depending on the country and your meds, you may need a license to enter.  For Cambodia and Thailand, I needed documentation from the Thai and Cambodia government to take in morphine.  Allow plenty of time for sorting this out before you go.  The appropriate embassy is the best place to start for advice about this.
  • Pack slowly over a few weeks. Don’t try and cram it all in in one day, slowly put yourself a list together and slowly tick things off as you add them.  No point in starting a flare up before you’ve left the house.
  • On a similar note, plan rest before your holiday.  When I went to Cambodia, I set aside the two weekends before for rest and this made a huge difference to my pain and energy levels.
  • Contact the airline to let them know about any food restrictions and ask for wheelchair support.  This is amazing; you will get pushed from check in to plane then onto your next plane or to the taxi rank.  It may feel embarrassing or you may be reluctant to ask for help but why waste your precious energy and walking ability to go round an airport, save it for going round the coliseum etc.  Also having wheelchair assistance means you don’t have to carry your bag.  My shoulders and hands hurt less because I was able to put my bag on my knee (which is heavy because it’s filled with meds). At the airport, once I reached my airline I had help with my bags, I bypassed the queues and they bought the wheelchair to me instead of asking me to walk back to the assistance people.
  • Similarly you should contact the train station if you haven’t got anyone to help you get on and off the train. Having some visible sign of a disability seems to help as well… This year I was travelling with knee splints and a crutch (my other splints are mostly hidden) and I’ve had far more help. There have been idiots as well but the kindness of strangers has been great. I had people helping me to get my bags on and off the train, offering to put things in the overhead racks. The station staff let my friend through to help when I was struggling with my bag.

During

  • Take a blanket and a pillow, it will vastly improve your flight.  Yes long haul flights provide blankets, but they aren’t warm and they won’t help in the airports.  A blanket can be used to make airport seats more comfy, less cold etc.. A blanket also helps hotel beds become a bit more comfortable – lay it under the sheet or use it as a pillow.  If you’re travelling between places, use your blanket or bag as a footrest if you’re short, keeping feet and knees supported will help comfort and pain.
  • Wear comfortable clothing to fly in, including shoes you can slip off easily so when you’re on a cramped plane, you can kick them off and push them under the seat.
  • Take heatpacks, tubigrip, spare splints, whatever it is that helps a bit, it all adds up. Safety pins are very useful – things happen unexpectedly, splints break, clothes break and safety pins fix.
  • Take a bear, some things will be tough and you’ll need a hand to get yourself up and going again.
  • My tablet was really helpful.  I loaded it up with tv programmes, audio books, kindle books (as well as taking my actual kindle), I wrote my holiday diary on, took the odd photo on it.  If you need emergency info about something most places have WiFi somewhere.
  • And on that note, take a kindle, do not, I repeat do not, waste precious spoons (not heard of the spoon theory? Check it out) on carrying books around.
  • Readjust your expectations, you will not be able to go everywhere and do everything in your destination.  Pick and choose carefully.  One of my favourite days when I went to Bali was slowly walking to the art museum, slowly pottering around the beautiful gardens it was in, then coffee.  Followed by lunch in a local cafe with a seat by the street so I could soak up the sense of the place and people watch.  Then I headed back to the hotel via the market and had a nap whilst it rained outside.  It was a lovely relaxed day and I did what I wanted to do on my schedule and made use of the weather so I didn’t feel like I was missing out.  When I met up with the rest of my tour group, they had all got drenched in the downpour leaving them a bit miserable so I definitely got the best out of the day!
  • You know your pace but I find it helps to go with realistic expectations.  I know I can’t join in evening activities and daytime things so I choose day time because that’s more important to me.  This does mean I had more room service food and less time with the rest of my tour group but at the end of the day, my limits are different to a lot of peoples and I can’t keep up.  I have to choose what’s important to me.
  • Don’t rush round doing everything as soon as you get there – you will crash.  Instead, head to your hotel and relax, sleep, whatever for a while.
  • The issue of toilets…. The time in Cambodia where I was wearing a long skirt, had my crutch, had awful leg pain and had the toilet was a hole in the ground… Ah that was a challenge! Depending where you go toilets may include squatting toilets or literally a hole in the ground, think about how you can cope.
  • Postcards – if this is stressful or painful, don’t send them, or only send a few. You could email a photo instead.  Don’t feel obliged to ruin your holiday to keep friends and relatives happy.
  • I wore UV arm covers to put over my splints, bought from eBay.  When I’m in the UK I wear cotton or wool arm warmers, partly to hide the splints and partly because the velcro sticks to everything and irritates me.
  • If massages help. treat yourself, you’re on holiday after all!

After

  • Plan time to rest after your holiday.  If you work, book a few extra days off, you will benefit hugely from it.  Again, I book out a couple of rest weekends after I’ve been on a long trip, or, if it’s a short trip, just the one weekend.
  • If you’ve taken photos blow them up and put them near your bed or sofa so when pain gets you down  you can look at them or frame a piece of art you picked up.  Make sure there are reminders of the trip.

Final words of advice… enjoy yourself!

A tale of loss (and boots)

There is an expectation when writing about pain you will weaving a silver lining a lesson you have learnt a new perspective on the world. And there is a time and a place for that but this is not it. This is a post about loss.

On the surface my condition may seem do have little to do with with loss.  but coming to terms with a chronic pain condition has a lot in common with losing a friend or relative close to you. There is a similar grieving process.  In this case, it’s yourself you have lost.

I have lost who i was. This is not due to carelessness or lack of adaptation.  This is not because i couldn’t mentally adjust my new situation. This is because where i am now many things that would have defined me are now impossible. So what have i lost? Other than myself of course.

I have lost my freedom, my independence, any spontaneity i may have had, i have lost control. My identity right down to the clothes and shoes i wear has been transformed. I no longer wear rings on every finger instead i wear splints. I look longingly at bracelets I own, my wrists now covered in the medical beige of supportive strapping. In the bottom of my wardrobe, still in the box they came in, lay my beautiful black boots, ankle high, lace up with ribbon, 4 inch heels – beautiful. They took all of my savings when i was 18 and i will never be able to wear them again. Yet despite having known this for many years i am unable to part with them. i cannot deal with this loss. There are too many losses, i cannot inflict another upon myself. Under a table in my living room lay a pair of gorgeous brown knee high DM’s, once again lace up with ribbons. Even these with a sensible heel and ankle supporting structure are beyond me now. They are replaced by a functional pair of boots – zip up because my fingers can’t cope with laces.

I have lost more than books.  I have lost plans, dreams, friends, skills, talents, dignity, interests, hobbies.  I have lost books.  I am surrounded by books I will never be able to read. The pages are agony to turn. The books inflict pain if i hold them.

This is not a happy ending story. I am not your inspiring motivation tale. I have lost so much more than I can bear to think about and this is hard.