Another post about things which make my life easier!

I’ve done a lot of these posts but I am also continually finding new things which make my life with chronic pain and fatigue easier.  And my condition changes so I need to find new ways of coping.  All the info in the past posts is still really relevant and if you’re new to chronic illness or my blog, I would recommend looking back at them.

If like me, you’re stuck inside, I hope my connecting with nature posts give you some inspiration:

A good mattress.  I’ve written before about the value of a mattress topper and they do make a lot of difference.  But I’ve just bought a new bed and mattress and the difference is amazing!  Although now I stop and think about it, my mattress topper was probably over 5 years old… Everyone has different mattress needs but I have gone with a mammoth mattress and bed (there was a deal if you got both).  Because it’s a medical mattress, I got VAT off.  When I was trying out mattresses, I lay on them like everyone else but I also made sure to do lots of wiggling as that’s how I sleep. For me, memory foam was awful – I couldn’t turn over and it was a nightmare to get me off them as I sort of got sucked in…!  Of all the memory foam ones, the ones which were half sprung, half memory foam were the best.  But the mammoth was the one which was best for me.  If you’re mattress shopping and have a bed raiser or profiling bed, make sure to ask for advice.  Some of the mattresses we looked at would not have worked well if they’d had to bend.

Electric hot water bottle.  All of the hot water bottle benefits without having to use scolding hot water.  Mine are (I have two!) from noozie and take about ten mins to heat up and stay warm for a few hours after, longer if they’re in bed with you.

Metal straws. I use a lot of straws for meds and my drinks and when I go out.  Metal straws are cheaper and more environmentally friendly than the plastic sort.  Depending on where you buy them, you can get a pouch to pop one in your bag and keep it clean.  Most seem to come with a cleaner.  NB, don’t use metal straws for hot drinks, you could burn yourself.  Plastic straws designed for hot drinks are the way forward there.

Toiletry bottles.  You know the ones I mean?  They come free in washbags and you use them to take shampoo away with you.  Well, if you’re on a lot of liquid meds, they can be an easier and lighter alternative to taking all your glass bottles with you.

Salt sachets. My lovely friend picks these up every time we go for coffee now so I have a good stash!  I use them to add salt to drinks when I’m feeling potsy and have some in my bag, my wheelchair and on my trolley.

Earphone headband. I hate sleeping with earphones in but I have awful neighbours who can be so loud I can’t hear my audiobook at night.  Enter sleepphones.  They are a headband which has flat speakers inside.  You can feel them but they are so much better than earphones.  They come with a cord or a bluetooth connection.  Whilst I was concerned about strangling myself in my sleep, I tried the corded version as they’re cheaper and I’ve been fine!  The cable is a good length and their customer service is great. I had a little issue with mine and they responded and acted on my email within 12 hours, no questions asked, no fuss.

Beanbag laptray. You can get some really cool ones these days including ones you can add your own photos to.  They are great for eating off but also for using in bed.  I have my laptop on one at the moment.  I also use them for doing little craft things on so that I can lift and move the whole project easily without dropping stuff everywhere.  You can get crafters trays as well if that’s specifically what you’re wanting.

I’m very certain there were more things I wanted to include on this list but that is the nature of brain fog… If I remember I might add them to the comments!

Advertisements

FOMO and chronic illness

It’s not a phrase I use, so in case you’re not familar with it, FOMO is the fear of missing out.

Meg, from That Hummingbird Life, sent out an email recently about FOMO:

Whether it’s feeling like we should have done things in the past, getting caught up in thinking we need to do/buy something because we’ll regret it if we don’t, or feeling like the odd one out, it’s fair to say we’ve all experienced it.

It’s something I’ve had to deal with, although I’m not sure I’ve been especially conscious of the process, because of my pain. There are obviously many things I can’t do and I have to be more choosy about what I do do. Which almost makes it easier because there are physical consequences to trying to do everything and I know I physically can’t do everything I want to do. One, probably less helpful, way I have dealt with it is by mentally blocking out things which aren’t an option. Most of the time I don’t think about me going on holiday, even when talking about other people’s holidays, because it’s probably not going to happen.

More helpfully, I sort of approach FOMO in terms of compersion or shepping naches. The first is a term used mostly in terms of poly relationships and the second is a Yiddish phrase. Both essentially mean getting pleasure from seeing someone else get pleasure. For compersion, this might be feeling all full of love when you see your partner is in love with their other partner. For the Yiddish, it seems to be used mostly for the pride or gratification that a parent/teacher/grandparent gets when they see their child enjoying themselves or achieving something.

This can be tricky, but for me it basically means that I don’t get jealous when someone is doing something awesome (well, I do sometimes…). I see it as something that is making them really happy and I am happy when my loved ones are happy. We are a very individualistic society and are socialised to think “I want that” when we see someone with something, even if we don’t actually want it. I think part of FOMO is tied into that. When someone is telling you about something brilliant they’ve done or are doing, a part of us leaps to I want that or I should want that or I should do that. By doing this, we miss the awesomeness of just basking in the glow of someone who feels great.

Maybe my thought process might help explain..

Person A: I have just been on a great holiday…
Person B: Oh, I’m so jealous, I really want/need a holiday (this may be said, thought or internalised somehow)
Person C: Oh that’s great but shit, I should be going on holiday/wanting to go on holiday/all my friends love travelling what’s wrong with me…
Person D: Brilliant, tell me more about it, I’d love to hear the details and see some pics (might have a moment of longing or holiday lust but goes back to listening to person A and living the experience through them. I want to say living vicariously but that, to me, has negative connotations.)

Person B and C are probably going to experience a bit of FOMO and think they should be going on holiday and possibly to the same part of the world because A had a great time and they want to join in.

Person D is getting the magic of A retelling the adventure and seeing A smile and engaging with A. Person D is experiencing something different to the holiday itself but it’s still it’s own magic. Person D, for whatever reason, hasn’t got bogged down in what they don’t have or aren’t doing. They are focusing on what they do have which is a great friend who’s wanting to share, rather than what they don’t or can’t have, namely a holiday.

Person D is probably more like a parent filled with delight when their child comes home from school full of excitment about their spelling test going well and having a great time playing with their friends and having been invited to someone’s house for tea for the first time.

We are so socialised into needing everything for ourselves that when we hear about something we can’t be part of, we sulk and we kick off. Not because we want the thing, but because we are conditioned to want everything, especially if someone else has it and we don’t.

I think, for me, the other important aspect of how I approach FOMO is prioritising! I have limited energy and know that if I do something on monday, I need to rest on Tuesday etc. I have no choice. If I ignore this and book something in monday and tuesday, tuesday’s thing will probably end up a write off. So I have to figure out what I want to do most, and this is helpful in living authentically anyway. So I’m faced with x and y, which initially I want to go to both of. But then I stop and think and maybe x is more interesting or y is similar to something I’ve done recently or actually, I didn’t want to do y but I felt I should. X is the winner! And I will enjoy x a lot more than if I tried to do x and y because I would break myself doing both and would spend all of x worrying about how I would get through y. Essentially, I do fewer things but with more heart. The same goes for friends, I go for quality over quanitity both in terms of the actual people and the way I spend time with them.

And if there’s something that you do really want to do, do it. Or find a way to bring it into your life. Or do bits of it. Like if we’re talking about a party, go for the first hour, really throw yourself into it and then head home. Basically, slow down and think about what you actually want. And be grateful for the things that you do experience. And change your viewpoint. Instead of thinking a half day trip is stupid and not anywhere near as good as a two week holiday, make it a big deal if it’s a big deal for you. Take photos, treat yourself to something as a reminder, make a collage afterwards etc. Treat it with the same respect as a holiday.

I used to spend entire days by the sea, long day trips that I loved. As my pain got worse, I couldn’t cope with it anymore and got grumpy with myself when I had to leave after a few hours. I ended up ruining half day trips with dreams and longings for full day trips. Over time I realised I was shooting myself in the foot and started to let go of what I used to be able to do and focus instead on making sure my shorter trips were great in themselves. I had to stop comparing them to my full days and instead begin treating them as something in their own right. I no longer try and do everything I want to but instead I focus on what I want to do most and enjoy it for itself.

There is no way round it, when you have a chronic illness, you are going to miss out on things. But by focusing on missing out, you miss out on what you can enjoy.

#30dayswild

I wrote an introduction to #30dayswild at the beginning of June which explains the challenge and how I’m approaching it.  As we’ve reached the end I want to share some of my highlights.

Day one: I saw a huge bee exploring my bird feeder which was exciting because no birds have been by… It’s been up for a few months now and I think it’s just a bad location but I don’t have a better one for it. I had the window open so despite being stuck in bed, I was able to hear the birds. I also emailed various organisations about disability and nature (I’ve been meaning to for a while) to ask for their suggestions, recommendations and to see if they could share my blog posts.  And I wrote up some long overdue reviews on euans guide:

And my copy of BBC wildlife magazine arrived!

Day two: Using the magic of the internet, I identified a blackbird from its song that wafted through the open window.  As I said above, I don’t really know any bird calls and I’d love to learn more.

Day three: My 30 days wild pack arrived and I wrote about snails and ladybirds.  I scattered wild flower seeds in my yard and made butterflies from clay as its butterfly education and awareness day.  This was a good day but I was in a state health wise at the end of it.

_20170603_150102

Day four: Day three was a bit much for me so day four has been a bit of a washout.  Basically mostly spending it in bed watching netflix and reading about the seasons:

_20170604_150414

Day five: I felt worse than day four so very little done at all and not really even up to reading.  I did however get a great response from one of the emails I sent on day 1 about access to nature when you have limited mobility.

I feel like this entire year is just passing me by as I bounce from one phase of illness to another…

Reads: As I lay ill, inside, trapped by my body, the seasons turn and turn and turn
Reads: As I lay ill, inside, trapped by my body, the seasons turn and turn and turn

Day six: There was supposed to be a walk but there was also exceptionally heavy rain so we postponed.  I did get out to go to the not very wild supermarket where I bought a couple of nature focused magazines.  I also, amongst other things, saw a happy little snail on the pavement outside my flat.  Whilst not a plant, it put me in mind of the following quote:

Reads: 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
Reads: 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

Day seven: Resting up for a day out on 9th.  The sun is dancing with the clouds, alternating my bedroom between light and dark in a matter of seconds.

Day eight: Awake at 3.30am but being serenaded by a blackbird calling in the day.

Day nine: A day trip!  We went to The Deep in Hull which was very accessible and has very detailed information about access on their website.  I was impressed.  As we drove over the weather was a bit patchy, sun and clouds.  And then the heavens opened.  It was like giants were pouring buckets of water over us.  The window wipers couldn’t keep up, the drains couldn’t keep up, we could barely see the car in front.  And then, just as suddenly as it started, it stopped.  It turned out to be a very strange day for weather.  When we stopped for lunch at Hornsea, it was really cold.  Once we’d eaten though, it was glorious sunshine and lovely and warm.  But after a short walk, the sky turned black once more. The weather was certainly wild!

I realise that #30dayswild is more about plants and animals and such but the weather is an important part of nature for me.  One day I will learn more about it. But for now, how about some pictures from The Deep?!  It was hard to capture them because you can’t use your flash and it’s quite dark and the animals move around a lot!

From here on out though, things got a bit patchy. My health went squiffier than normal and I’m not committing to any more thing a day challenges because they always seem to coincide with me feeling rubbish…

Day 10: Woken by a woodpigeon in the early hours and the day finished with a musky, golden sky.

Day 12: A little walk.

Day 18: Went to the park.  Saw ducklings and also baby blackbirds which I’ve never seen before!

Day 19: A really hot looking pigeon glared at me from my garden fence.

Day 20: I did some drawing, including a picture of dandelions:

dandelion

Day 21: More art, the summer solstice and a post about sunflowers.

Day 22: Saw a starling in a car park with a huge beakful of food, looking very pleased with itself.  And crows or ravens ruling the roost on the top of the butchers.

Day 28: Two little blackbirds hopped around outside my bedroom window making me smile.

Day 30: The woodpigeon, in all his plump and puffed up glory, returned to tightrope walking along my fence.

As I said above, I’ve not done well because of health and even though these all seem like little things, they bring a smile to my face when I notice them.  Having learnt the sound of a blackbird calling at the beginning of the month, I now pay more attention to his song.  It is more meaningful to me because I know which bird is calling.

Me and my period

Note: this post is going to be explicit and possibly more detail than you want.  You have been warned.

I’m reading a lot of spiritual feminist stuff at the moment and the idea of menstruation not being a shameful thing is coming up repeatedly.

Society has issues with any kind of bodily output but as something that only women* experience, periods are considered especially icky. It’s a “curse”, it’s something that we talk about in euphemisms, it’s a taboo.

When was the last time you heard someone refer to blood when talking about periods (another way of avoiding saying menstruation).  You might hear pms, bloating, that time of the month.  You might hear reference to it as a way of explaining why a woman isn’t happy with something or is standing up for something.  As a way of undermining women.  But you are very unlikely to hear about blood.

The idea of menstruation is one that is associated with unnatural things, despite it being so incredibly natural.  It is considered disgusting despite it being the very reason that you are alive today – without it, your mother couldn’t have carried you.

There is so much I want to say about periods and the different ways that they are experienced in different parts of the world.  There are some girls out there who can’t go to school because they can’t access sanitary products.  There are some people out there who are forced or coerced to take birth control so that their periods stop.  There are people out there who really struggle with their periods and are brushed off when they try to seek help for their pain or their moods.

But this post is entitled me and my periods.  So, back to me.

I have never liked my periods.

I remember wanting my period because I thought my mother would treat me differently.  I thought, because it would connect the two of us and not my sister, she would love me.  Obviously this was not the case.  But I clung to it.  And getting your period was grown up and like most young people I was in a rush to become an adult.

But once I got my period (on a canal boat… eugh!), everything changed and nothing changed.  My relationship with my mother was exactly the same.  But now I had to contend with potentially unpredictable bleeding. A mother who blamed any acting out or standing up for myself as hormones.  Everything was blamed on my hormones.  And I was expected to use tampons, because my mother did.  But what no one tells you is that inserting a tampon isn’t supposed to make you cry in pain.  That it shouldn’t be like forcing your hand through a brick wall.  See my post about vaginismus for more metaphors and similes on the matter of inserting anything into my vagina.

And when you are 13, you are already so scared that you aren’t right and I had no sense of self esteem and then to top it off my vagina seemed to be broken and I had no words to explain this.

Fast forward a few years and I am now experiencing horrific pain with my period.  It also comes with an unpredictable and quite inconvenient dose of diarrhoea.  To the point I missed a number of lectures.  And didn’t feel I could tell anyone why.  Sharing two toilets with nine other people didn’t make this any easier…

I went on the pill.  Yay, my periods should be manageable, whoop!  No.  Yes I knew when I was going to bleed each month but on the odd occasion I tried to skip my bleed, I would instead end up with a month long period.  On the plus side, there was regularity and it was lighter.  Although actually, I’ve always been pretty regular with my periods.  My body loves them.

A few years later and I lost a lot of weight because of anorexia.  Periods stopping are a sign or symptom of anorexia – at the time I was thinking at least some good would come from this.  But no.  My body loves its periods.  Despite being incredibly underweight, I still had them.  I only missed 3.

A few more years and my body still loves to have its periods.  I am not going to have children, I can’t have children and my periods are heavy and messy and humiliating.  Any shred of dignity is lost when my carers have to shower me when I’m bleeding.  They have to wash blood out of underwear, out of pjs and out of my bedding.  At times they have to change my sanitary towels.

Even when I am physically up to changing my sanitary towels, I still have other issues.  I love that some people find their period empowering and a way to connect to their body.  For me, it is about lack of control, lack of dignity and the mess that comes with it.  Other than blood stains, you also have to contend with the actual bleeding.  Guys, I bet you’ve not thought about this – there are times in my cycle where the blood is continuous.

I’m trying to decide how explicit to get here. F*ck it.  

So when you are trying to wipe yourself clean after using the toilet, you have not only got to deal with the diarrhoea, you also have to keep wiping the blood until you think you might get your knickers and hence sanitary towel up round your waist in time to not get blood all over the place.  This involves a lot of wiping.  And my hands struggle at the best of times**.

There is the matter of dry, crusty blood that arises because I still only get one shower a week regardless of whether I am bleeding or not.  There is the matter of being allergic to the sticky side of sanitary towels.  There is the cramping and all the other stuff that comes with a period for most women.

So I do not like my period.

I wish I did.  I wish I could enjoy it or at least not hate it.  But at least I am hating it as a conscious choice.  We are socialised to not like our periods – they are messy and they are reminders to the patriarchy that however powerful men get, they will not be able to create life.  We are socialised to be quiet and hide ourselves away when we are bleeding.  We are socialised to pretend there’s no blood involved.

So feel free to love or hate your period, or feel indifferent if that’s how you feel.  But examine your reasons. Is it because you do get awful pain or is it because that is how you’ve been told you should feel?


*not all people who menstruate are women, not all women menstruate but i’m using the word woman here anyway for ease of language and am speaking in generalities.

**I have a toilet topper which does have a wash and blow function but I find it useless for periods, advice is welcomed from others in similar circumstances!

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?

 

Disability and contraception

“I have the jab so I can’t be blamed for getting pregnant”: Contraception and women with learning disabilities

Michelle McCarthy (pdf)

The very fact that there is a paper entitled this is horrific.  And really shouts about the need to discuss disabilities and contraception.

This is an area which is very entangled with forced sterilisation and issues of consent but I do not believe that either of those should prevent the conversation about disability and contraception.  NB, I have already written about my experience of disability and periods so this is more focused on contraception as birth control.

I’m assuming here that the person in question has capacity to consent to using contraception, whether it’s for safer sex or for other reasons.

Having read about the topic for a while now, there feels like there are a few sections to this debate: coercion to use certain types of birth control, unwillingness to provide birth control and having certain types of birth control off limit.  This is certainly backed up by an Open University report into contraception and learning disabilities:

In some instances women made active and informed choices about contraception that enabled them to control their reproductive futures. In other cases women had used contraception because they felt they had to, or had been coerced; consequently they also had little say in the type of contraception they used. Some of the women also told us they used contraception as medication to regulate menstruation or alleviate menstrual pain.

Coercion to use birth control

As seen in the quote at the top of the post, there can be a pressure (overt or covert) for certain people to use a method of contraception that is daily or long lasting (as opposed to condoms etc which you use at point of sex).  This seems to be strongly related to this idea that women with disabilities should not get pregnant.  This seems particularly evasive for women with learning disabilities.  A group of people who are possibly more vulnerable to coercion.  This is despite evidence that shows a persons IQ is not an indicator of how good a parent they will be.  This attitude is echoed in experiences of people with disabilities who have been pressured into a termination.

There is also the fear around high rates of abuse of women with disabilities, particularly those with learning disabilities, and the fear of a person getting pregnant following abuse.  However this doesn’t address the issue of abuse itself or STIs or psychological impact.  We should not use the risk of abuse to control women’s bodies.  We should be talking to women about what is appropriate in relationships, what to do if things become inappropriate and what puts you at risk of STIs and pregnancy etc.

Two women in the Open University report, both with high support needs, were coerced into having the contraceptive implant when they had lived in a care home.  This is echoed in other literature I’ve read; the very strong “suggestion” that the place at the care home will not be available if they don’t use birth control.  There are other cases discussed where women were put on birth control because they weren’t believed when they said they weren’t having sex.

Coercion can also take the form of discussing the benefits of birth control – such as no periods – whilst not discussing the pregnancy aspect.  This has been used to get someone to use birth control due to fears of risky behaviour.  Passive acquiescence is another form – the patient not being fully informed and the idea of doctor knows best being played on so the patient lets the professional make the decision.

Unwillingness to provide birth control

When I go to the doctors about birth control, there is a general assumption that I do not also need condoms.  When I was not visibly disabled, I would be offered condoms or at least reminded that the pill doesn’t protect against STIs.  Similarly when I was not visibly disabled I was reminded that the pill is ineffective if you’ve been sick, had diarrhoea or are on antibiotics.  This no longer happens.

A lack of accessible literature on birth control and other topics relating to sex education or an unwillingness by medical professionals to take the time to explain these issues is one way in which society is undermining access to birth control.

Another is the assumption that disabled people do not want children and so the conversation is steered in a certain direction.

Off limits

Obviously certain kinds of birth control may not be compatible with certain health conditions and I understand the importance this.  However it seems that there are some medical professionals who filter their information based on the person having a disability eg not talking about the pill to people who have a condition which may cause them to forget to take it.

Taking a personal example for illustration, I would really like a hysterectomy.  I will never have children and having my period is difficult and humiliating for me.  But based purely on my age, that is out of the question.  Obviously this isn’t discrimination because of my disability but other options are out so surely this should at least be a consideration?

As a second option, I would go for the coil but they won’t give me anaesthetic to get it inserted so that is out for me.  Note, the only reason I can’t have the coil is my disability which means I can’t have it inserted without anaesthetic.  There is no greater risk for me to have the coil than for me to take the pill.

And the pill was next on the shopping list of choices…  Whilst I’ve finally found one that is mostly ok so far it has led to a lot of weight gain and I have tried five different types to get here.  The other main options would be the injection, which they don’t want to give me due to my health, and the implant which has low odds of stopping periods compared to the other options.

There are other ways of making birth control off limit to women with disabilities without having to say no.  For example if you can’t get to the doctors – my surgery don’t do house calls, won’t prescribe the pill by phone and obviously the other options are out if you can’t get to the surgery.  My surgery is a group of surgeries and fitting the coil is only carried out at one of these.  There is the inaccessibility of doctors and sexual health clinics and the inaccessibility of information.

All of this echoes prejudices which people carry about disabled people and sexuality, whether consciously or not, and needs challenging.  In order to have a healthy sex life, everyone needs to have access to contraception and information.

End note: The Open University research concludes by acknowledging that whilst little is known about the contraceptive choices of women with high support needs, almost nothing is known about those people who do not have capacity to consent.

Dating with a disability

So first off, I don’t feel very qualified to talk in too much detail about this.  Since considering myself disabled, I have been on one date.  However, a quick picture of that date will be a good way to kick start this.

I went on a date with a person I met online who seemed interested and intellectual and open minded.  She seemed to be of similar political views and attitudes as me.  All great.

At that time, whilst I was starting to consider myself disabled, it was a lot less obvious to people.  I wore wrist and ring splints and unless you knew me, you wouldn’t have known I was in pain and tired.  My wrist splints were covered in arm warmers (excellent for hiding medical beige splints and stopping the velcro from sticking to everything).

Back to the date.  I hadn’t told her I had a disability because at that stage it didn’t seem especially relevant.  It wasn’t going to interfere with my date after all.  And we had a nice time.  We wandered around an art gallery making general conversation and every few minutes she would sneak a glance at my hands.  Not once, not twice, but repeatedly throughout the hour or two we were together.  And I get it.  You don’t see many people with ring splints, or even wrist splints for that matter.  But you have two options on a first date with someone you found online; you ask them about it or you ignore it.  And on a first date with someone you found online I think either are ok options providing you ask sensitively of course.  I don’t find it ok to have someone clearly desperately trying to figure things out, not being very discreet about it and not just politely asking.  This is going to be one of those things where different people feel differently though.

As I’ve discussed a lot, disabled people aren’t generally seen as part of the dating pool and as my wheelchair is in your face disabled, most people I meet face to face will not consider me to be a sexual being.  In addition to this, disabled people are more likely to be isolated and we can’t always access the places where you meet prospective partners (bars, pubs, workplace…).  One night stands are not straightforward if you have a condition which affects sex.  Most people, when looking for a one off thing, do not want to be sat down and told about the possible hip dislocations and vaginismus and so on before getting on with things.

So online dating to the rescue?  Well.  Online dating opens up a lot of issues.  Firstly, and slightly off topic, being bi and trying to date online isn’t straightforward.  On a lot of the big websites, you cannot be searching for both male and female people.  When I approached match.com about this years ago, they told me to set up two accounts.  There are also a whole lot of trans issues around this male or female approach.  Anyway.

Another, more on topic, issue with finding a website is the “disabled online dating” sites.  Websites entirely for people who are disabled to find love.  Which presumes that because you are disabled you only want to date disabled people, or only other disabled people would want to date you.  And I’m not saying I don’t want to date a disabled person but I don’t want to have to choose it at the expense of all non disabled people.

Let’s say I have found a website and am setting up a profile, do I “declare” myself disabled in my profile? If not, when do I tell someone?  Obviously this is a bit easier if you’re on a disabled dating site.  But given that a vast number of people appear to be scared of disability, would I actually get any response if I told people in my profile?  Or would I get the wrong kind of attention?  In some ways, my disability is really good at ruling out people I don’t want to know but it can be quite disheartening.

At this stage in the imaginary process, I haven’t even activated my account.  If I wasn’t disabled, then that would have been done by now.  Once activated, there is then the tiring emotional labour of connecting with strangers and sending messages and that is draining for most people, let alone those of us with mental health issues and low energy levels.  You also run the risk of having horrible messages sent your way and having to deal with the emotional impact of that as well.

Ok, I’ve found someone I want to meet up with and I’ve told them about the disability, what then?  Well, we have to figure out what we want to do or where we want to go and how feasible that will be for me.  We have to figure out when but weekends everywhere is stressfully busy and evenings I am asleep.  On top of which my pain and energy levels fluctuate.  And my evening care means I have to be put into my pjs at 5pm or with a lot of prior arrangement a bit later but I still have to be home by a certain time.  I am a 30 year old with a curfew.

If I was going on a date today, I would be wearing wrist splints, ring splints, knee splints, ankle splints and using an electric wheelchair.  If we were going for a drink I would need a straw.  If we were going for food I would need it cutting up and I’d need to use my fingers or my special spoon.  I would almost certainly need either my date or someone else to help move furniture and stuff and depending on the system, I could have to send my date to the counter to order and pay.  If we decided to go to the cinema, we would have to check in advance that the disabled seats were available and that the lift was working.  I’d have to prebook a wheelchair taxi for each end of the date and they are known for not turning up and are only available at certain times of the day (eg you can’t get one in york during school drop off or pick up time…).

And all of this presumes that I have managed to find someone who seems compatible, is ok with going on a date with a bisexual, disabled woman and lives close enough that we can meet in the town I live in or the person is willing and able to travel.  This is a whole lot of supposing.  And this is one reason why I have only been on one date since becoming disabled.  To be honest just writing this has been exhausting, let alone trying to live it…

None of this is me saying it’s impossible to date if you have a disability but I wanted to make non disabled people aware of just some of the challenges involved.  There are other complications when you’ve been dating someone for a while and these are similar to those faced in friendships.