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!

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!

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?