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.

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I’ve lost my edges…

There is a note in my diary reminding me that I want to write to Oh Comely!, a magazine which inspires hand written, decorative notes not personalityless emails.  The note says I want to respond to something I read and tell them about proprioception.  But the note is possibly a year old now and I have long passed the issue on to a friend.  All my magazines are passed on, turned into collages or left in public spaces for strangers to discover.

proprioceptive: Relating to stimuli that are produced and perceived within an organism, especially those connected with the position and movement of the body.
Example sentences
Origin: Early 20th century: from Latin proprius ‘own’ + receptive.

Oxford English Dictionary

Proprioception is the sense of where your body is.  It is how you know where your arms are when the lights are off.  How you can walk without having to constantly look at your feet.

If you have a huge growth spurt, your proprioception can be temporarily impaired which is why we see clumsy teenagers who don’t seem to fit in their body.  That said, for most people, most of the time proprioception just ticks over in the background.

For people with certain conditions, including EDS, proprioception doesn’t function as well as it should.

I wake in the night, slowly coming back to myself from my dream world.  Before I can rouse myself enough to move, I lay still, figuring out my body.  I may not have an arm right now for all I know.  I’m trying to puzzle out where my left hand is.  I know there is a hand on top of a hand because of the feedback from my splints.  I’m awake enough now to summon up the energy to move that arm which may no longer exist.  How I can move a limb when I don’t know where it is boggles my mind.  It doesn’t take too much movement before I figure out where it is and my arm reattaches itself to my body map.

For me, this is not an unusual night.  My sense of where my body is is not consistent.  Some days I have a better idea than others.  To someone not used to it, waking up “missing” an arm might be scary, for me it’s normal and I can quickly reattach it.  I can’t always put my two fingers together, end to end, without looking.  There are certain muscles that I can’t tense because I can’t find them in my mind to send the messages.

My sense of myself seems to be less when I’m ill, when I’m tired, when I’m hormonal or worried or other states of vulnerability…

Perhaps the hardest to understand and hardest to cope with is when I “lose my edges”.  This mostly happens to my legs.  It is like I am spilling out into the world.  I no longer have skin containing me.  I have no boundaries.  I am the universe and the universe is me.  And I find that terrifying.  When I lose my edges, I kick my legs a lot, I fidget, I bang them against my bed.  I feel out of control and I feel unsafe and unsecure.  It feels like my nervous system is out of control pr non existent.  It is trying so hard to find my body that it is in overdrive.

Returning to the idea of a mental body map, I have lost the structure of my legs.  I know my legs are there and I have a vague sense of where they are but I don’t have any sense of where they end.  My body map, like the rest of me, has gone floppy and nebulous.  I merge and meld with the universe and it is terrifying.

One of the reasons this is so tough for me is that it feels a lot like the physical aspect of a panic attack or an asthma attack – the disconnect from your body that you experience when you aren’t getting enough oxygen.  The very feeling of this is enough to trigger an anxiety attack and it has taken me years to figure out that losing my edges and panic are not the same things, they just feel incredibly similar.

I don’t want this just to be a post trying to explain the sensation, although there is value in that alone.  I want to suggest my own ways of dealing with this in the hope that someone else can benefit.

I don’t have many ways of coping and would love to hear from others, but here we go:

  • There are some ideas on my post about grounding, including telling myself out loud that I am safe
  • A visualisation where I mentally wrap bandages around all my body, bit by bit
  • Blankets wrapped around me
  • Rubbing my limbs with hands, lotion or hairbrushes, anything to re-establish the boundaries
  • Stretching or, when possible, using weight based exercises to help eg arm curls with tins

More about proprioception:

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?

 

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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Peace: 8 month update

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

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

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

Boundaries

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

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

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

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

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

*Ehlers Danlos Syndrome

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

Tarot and peace

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

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

Rituals and intentions

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

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

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

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

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

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

Creating an encouraging environment

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

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

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

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

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

When sex hurts: Sex and chronic pain

The post is looking at when sex exacerbates existing non sex related pain rather than pain caused purely by sex.  Although not discussed here, changes to appearance, self esteem etc will all impact on your psychological wellbeing which can then impact on your sex life.

Chronic pain can be distracting, it hurts obviously and it can impact heavily on your life. Including your sex life…  Being in pain all the time does not make you (or at least me) feel sexy.

I wanted to do a post specifically about pain because I think the impact pain has on sex can be different to other disabilities. My first point would be to talk to your doctors… However,  I know that that isn’t always all that helpful… indeed, the NHS seems a bit lacking for in depth support…  (but yay, they have something, I guess)

I don’t have a magic wand to make sex with chronic pain easier but having sex can help with the pain so it’s worth a try, right?!  Orgasms cause endorphins to flood your body which helps with pain relief.

In no particular order, here’s some things to consider:

  • Communication – talk to your partner, its ok to be worried about the impact of sex on your pain, particularly if you’ve been avoiding it. Talk about where the pain is worse right now, should your partner avoid touching parts of you today etc
  • A lot of conditions fluctuate, make sure your partner understands this; being able to do something one day doesn’t mean you can do it the next.
  • Plan ahead. Unlike the movies, sex doesn’t always have to be spontaneous.  There are so many reasons why that doesn’t work such as children, working unusual hours, carers etc.  And if it helps, you can try and schedule in some rest time before hand and recovery time afterwards.
  • Find out what the best time of day is for you in terms of low pain, higher energy levels and higher libido
  • If being touched is painful (or even if it isn’t!), use none contact ways to arouse each other eg sexting, phone sex, talking flirty or dirty, mutual masturbation, pornography, erotic literature or try light touch such as feathers and silk
  • Massage is another way of being intimate, just be careful with painful joints, muscles etc
  • If your hands are in pain, try using your tongue
  • Warming the bed beforehand eg with an electric blanket may ease some of your pain
  • Sex toys might be easier for you and your partner
  • Cushions – well placed cushions can be invaluable! Think propping up hips etc
  • Where are you having sex? Would your wheelchair or riser recliner chair or electronic bed be more comfortable or in the water?
  • There’s also the impact of pain meds, they can decrease your libido, and you need to make sure you are on the right meds for you at the right dosage. If your pain isn’t controlled at all then of course sex will be harder
  • If your partner is your carer and you need help getting changed or into position, maybe you could ask someone else to get you ready or make the care into the foreplay.
  • Go long and slow or short and sweet, whatever works better for you
  • Have a think about what positions are best depending on where your pain is etc
  • Try not to stay in the same position for a long time if this causes you pain
  • Depending on where things are in your sex life, go back to basics with date nights, flirting, kisses, holding hands, cuddles…
  • Muscle relaxants, a warm bath, massage, a glass of wine might all aid things by relaxing you and your muscles
  • If something doesn’t feel good, say something.  Don’t assume your groans are conveying the right message! Maybe even have a safe word or be clear that stop means stop right away.
  • Use Google, look up good sex positions for ehlers danlos or whatever you have
  • edited to add, lube, lube is good

None of this is going to be a quick and easy solution unfortunately…

I’d really like to hear from you if you’ve got any more tips.

I’d also suggest popping over to The Hippy Geek who has joined two beds together so she can have an adjustable bed and still share a bed with her husband which I think is awesome*!

*be in no doubt here, as awesome as the idea is, if you ever end up in a relationship with me, you’ll be in the spare room! I love my double bed and all it’s very specifically arranged accessories and I’m not giving up my middle of the night internet for anyone!