Insert your own swallowing pun here

trigger warning for anorexia and eating disorders

So, having developed POTS earlier in the year, I now find myself with severely worsened swallowing issues…

Partly this post is so I don’t have to repeat myself but partly it’s also a grumble.  EDS is the gift that keeps on giving.  And just when you’ve got used to one new symptom, bang, there’s another one.

The health issue

I’ve had trouble swallowing for years but never particularly severely.  Mostly it’d be a feeling of a lump in my throat or difficulty swallowing saliva.  Then a year and a half ago I started having trouble with tablets coming back up.  Not often so it took a few months till I went to the dr.  She tried me on PPIs thinking it was silent reflux.  They made it a lot lot worse.  I went from bringing up tablets once a week to once a day. And it didn’t matter what shape or type the tablet was.

I was then referred to ENT.  By the time I saw them I’d managed to regurgitate a lot of juice in the middle of the night, a scary time.  ENT then stuck a camera up my nose and declared there was some redness, probably from silent reflux.  They gave me a really awful printed advise sheet which was full of common sense and nothing I wasn’t already doing…

Then came an appointment with a lovely speech and language person who declared my swallow is slow to get started and a bit weak.  She couldn’t help me with regurgitation issues because the speech and language team only deal with things going down.  She looked into what to do next with me.

Somewhere along the way I also had a barium swallow test which came back fine.

Then, two months ago, I woke up one morning and everything fell apart.  Suddenly I couldn’t swallow most foods without regurgitation, my tablets became a battle and even some drinks flew out the window.  What I have been left with is a strange menu of small portions of dairy free cauliflower cheese (cauliflower cut up super small), gnocchi and grated cheese (but only 8 pieces of gnocchi…) and ice cream.  Up until recently I could do white chocolate buttons (lower melting point than others), only 4, but that seems to be too much now.  I could also do apple juice if it was watered down by half.  Now I’m on a third apple juice to two thirds water and struggling.  I can do lucazade if it’s watered down with lemonade.  And I can do wine, which is probably not a great idea on the amount I’m eating but it’s also probably the main reason I’ve not lost more weight than I have…

I have gone from eating vaguely normally to an amount my anorexia likes and I have gone from drinking 6+ litres of fluid to less than 2 and my salt intake, which I need for controlling the POTS has inevitably dropped drastically…

Thankfully I had a gastro appointment six weeks into the troubles and the dr has been really helpful, or at least he listened well and took note of what I was saying.  Unfortunately there aren’t many options.  I’ve just tried one medication which hasn’t helped, may have made things worse and came with weird side effects.  I’m waiting to hear about a second med he wanted to try but it is a long shot.  And he didn’t want to talk about what happens after that…  Based on the options he ruled out, I can’t see anything other than feeding tubes ahead… Which is a hard thing to think about.

The social issue

A lot of socialising revolves around food but also, right now, i don’t have the energy or the mood to be people-ing much… which i also know is going to make my mood worse…

None of the foods I can eat are any good for eating outside the house because they either aren’t available or need cooking.  This means on the full day course I did recently and the day trip I took, I’ve had some nibbles of cheese, four buttons and glucose tablets to get me through.

There is also the aspect of having to repeat everything to people when I see them and having helpful suggestions made.  Which brings me onto my care.

The care issue

I know that my carers are doing what they’re doing primarily out of concern.  But they keep suggesting foods I should try, asking if they can tempt me into breakfast and telling me about the meals they’re going out for.  Some of this is because it’s hard to know how to help, in fact they can’t help, but some of it is thoughtlessness.

I have placed a huge sign in my kitchen asking people not to talk to me about food or my swallow unless it’s necessary or I bring it up – it seems to be being ignored…  Yes, I do want to grumble to my care team now and then as it’s a horrible situation and I’m annoyed.  But I don’t want to be asked if I’ve thought about soup/custard/blended food, especially when I’ve already explained that I can’t.  And I definitely don’t want to hear the details of your Christmas dinner, because mine is likely to suck.  Literally.

The mental health issue

And of course, within this all, we have the anorexia.  Which was in a good place mostly.  And I think anyone’s mental health would suffer in this situation.  Firstly, I’m not getting enough food and that’s bad for your mind, I’m not getting enough sleep either and I am so bored of the few foods I can eat.  Plus I’m really craving salty foods and cravings are tough to deal with.  And my only real experience of beating down cravings is anorexia…  When I am not experiencing disordered eating, I don’t limit what I eat or when I eat really…  Which actually reminds me that I’m not fully recovered from the anorexia because there are still lots of foods I won’t eat or aren’t comfortable with and I do limit quantity.

So that’s all fun, right?  I’m going to balance this out with a blog post about a new pretty oracle deck in a few minutes!

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Reinterpreting weight

I am currently reading Rise Sister Rise by Rebecca Campbell.  Amongst a treasure trove of very quotable lines, she says, when talking about women and weight:

The extra weight I had been carrying was made from very real things.  Two years of celebrating being in love.  Birthing two books into the world.  And facing my lifelong fear of sharing my soul’s voice with the world through my creations.  Would I change any part of that?  No.

So tonight, when I started to have a little eating disorder wobble, I sat down to write about it instead of grabbing the scales.  I was trying to figure out what was causing the emotional wobble and hence the eating wobble.  As I was writing, I remembered these lines and wrote the following:

One book describes how the author had gained weight because she was in a happy relationship so actually her weight gain was a sign of love and happiness.  I tried to stop and think this through myself and all I got was my weight gain is a sign of laziness which is obviously anorexia speaking.

So let’s try again.  My weight gain is a sign that I’m not flat out exhausted, not running on empty constantly, I’m not as stressed, I have less fights to fight.  My weight gain is a sign that things are actually going ok right now.

My weight gain is a sign that things are going ok right now.  How awesome is that?  I’m still trying to feel it but the idea that my weight gain is tied up in my life improving makes it much harder to wish away the extra pounds.  Would I choose to let go of where I am now so that I could lose the weight?  No, I don’t think I would.


Rebecca also has an instant guidance section on her website which randomly chooses a message for you.

Mine, just now, was:

Shine so bright it burns the corneas of those who want you small.

The reason they want you small is because deep down they want to shine too.

And in watching you, chances are they will be inspired to do the same.

Which is so, so relevant to my eating disorder.  I was trying to make myself small, I was trying to make myself invisible, I was so scared to show myself to the world and risk being hurt because of it.

I didn’t plan to write this post but once I’d put it on twitter, I felt it might be a useful way of looking at things for others out there.  I hope it helps.

Being honest with yourself about your eating disorder

“You have been criticizing yourself for years, and it hasn’t worked. Try approving of yourself and see what happens.”

~Louise L. Hay

These are all questions I’ve been asked during my recovery process, and found helpful at some point (you aren’t always ready for a question and that’s ok). I wanted to pull them together so other people can use them as journal prompts or whatever. They may or may not be helpful and certainly not helpful to everyone all of the time.

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be brave 1

Do you want to recover?

It’s ok if the answer is no, well, ok might not be the right word but unfortunately I really think you have to want to recover. Which is infuriating for the people around you who care and who hate seeing you in pain.

If your answer is no, I’d still urge you to keep reading or at least consider why not.

What purpose does your eating disorder serve?

I don’t think many eating disorders are really about eating or appearances when you get to the heart of them. Mine was about numbing my emotions big style, it was about control, it was about low self worth, it was about shame.

My eating disorder was a way of coping when I was suicidal. In a twisted way, anorexia saved my life. But it also tried to kill me.

Do you know what is you and what is your eating disorder?

Example, a 10k run went past my flat recently. Anorexia responded by saying oh, we could do that, let’s look up couch to 5k online and get out there. I genuinely got as far as opening Google before I kicked back in and reminded myself I can’t walk or use a manual wheelchair. Running is out the question. That’s how powerful an eating disorder can be. And if I hadn’t done a lot of work separating the eating disorder from me, I think it’d have taken longer for the rational part of me to kick back in.

Why does recovery scare you?

No, not because you might gain weight etc. Really, what’s the real reason?  The emotional reason.

Mine was a fear of feeling emotions. A fear of having to face the hellish depression which had preceded the eating disorder. It was also a fear of feeling out of control.

What does recovered look like for you?

I was asked this numerous times.  And the answer changed depending on where in my recovery I was/am.

For me, recovering meant not having to constantly think about food.

It meant reclaiming my brain and my identity.

It meant not being a hypocrite ; I strongly feel people shouldn’t diet and that looks don’t matter, I don’t care what other people look like.

Recovery meant not lying to my friends: are you OK? Yes. Are you hungry?  No. Have you lost weight? No.

And although I’m don’t feel I’m fully recovered, I now have space in my head for thoughts which aren’t about food and I’m being a million times more honest with my friends now than I’ve ever been.

If you want to recover, what are you doing which works against that?

I would think oh, I can recover whilst still doing x, or without doing y.  Somehow I was special, my body was different to everyone else who has an eating disorder.  So what everyone else has to eat regularly as part of recovery, I’m special, my body doesn’t like/need/want to do that… (I’m 99% sure that’ll be the eating disorder talking, trying to keep its claws in you cos recovery terrifies it, if you recover, it dies.)

What is your eating disorder robbing you of?

For me, it was the ability to think, relationships with friends, being able to go out for a drink, enjoyment of food, very nearly my job…

My health – you probably already know all the shit health impacts and are probably thinking somehow they won’t affect you, that’s what everyone thinks…

Who are you with the eating disorder? and Who are you without the eating disorder?

This can be tough to answer even if you’ve not had an eating disorder for very long. The nature of it means you lose touch with who you are and you can’t see who you could be or who you want to be. You forget what interests you.

All of your energy goes into the disorder, how else could you use this?

What did you used to enjoy, be interested in, do with your time?

What makes you come alive?

What might it feel like to love yourself?

I’m not asking you to love yourself, but what might it feel like it you did?

What stories do you tell of yourself? What language do you use to talk of yourself?

It’s so easy to believe our thoughts and take our feelings as fact.  They aren’t always, especially not if you have an eating disorder.  The words we use (internally and externally) to describe ourselves, our experiences etc, those words stick.

“Unloveable, fat, ugly, stupid, idiot, bitch” are words which run through my head.  They run through my head a lot less now because I’ve done some tough work challenging them.  But think about it, if you hear all day that you’re a stupid bitch, you start to believe it.

So, try and do yourself a favour, learn to notice and then learn to challenge your head messages and think about the words you choose when you’re speaking about yourself to others.

what else

I hope there’s something here which you’ve found useful.  I strongly encourage you to go away and journal about these questions or other similar prompts – writing can help you breakthrough things in a way that thinking often doesn’t.

Recovery is hard work, but it’s so much better that the eating disorder and I hope you choose to fight.

Reclaiming power from eating disorders

My eating disorder, like most, was caused by a lot of different factors; a history of depression, a lack of coping mechanisms, a fear of feeling emotions etc.  But it was also caused by not knowing what to do with power.

When my eating disorder started I was rising through the ranks at work, I was heavily involved in running a feminist network and reading group, I was living alone, I was financially independent, I was embracing my sexuality.

All should have been great. But I had no idea how to sit with that.  I was unable to embrace my personal power.  This could be for many reasons including poor self worth and the patriarchy.

I retreated from my power.  

I rejected my power.

I got myself into a situation where I no longer had any power.

My eating disorder took my power and at the time I was grateful.  I didn’t want it.  I didn’t know what to do with it.  The eating disorder then used the power it took from me against me.  It controlled me and imprisoned me. It used my power to hurt me, to try and kill me.

But now, I am opening my arms to my power.  

I am embracing it.  

I am seeking it out.

For me, this means being me.  

All of me.  

Unapologetically me.

This means embracing all the different parts of me; the maths graduate, the feminist, the writer, the tarot reader, the slightly spiritual woo woo me who’s been waiting a long time to get any space, the poet, the artist, the activist, the photographer, the disabled me, the fighter…

I am reclaiming my power.

Mental health and sexuality

Mental health and sexuality…what a tangled web…

I’m talking here about mental health conditions such as depression, anxiety, personality disorders etc rather than learning disabilities although there will be overlapping issues.

I’m also not going to look at vulnerability to exploitation or abuse here. I think that’s a big topic which deserves its own space and overlaps a lot with physical disability.

This blog post will be partly informed by my own experience of mental ill health; anorexia, depression, anxiety and suicidal feelings as well as reading I have done into the subject.

There’s two key areas I want to look at; sexuality causing mental ill health and the impact mental ill health has on sexuality.

Sexuality causing mental ill health

Sexuality is a complicated, very highly personal identity to navigate. In my case I am a bisexual woman who wasn’t really aware that bisexuality was a real thing and an identity I could own until I was about 18. In my case, a history of mental ill health predates the significant stage of forming of my sexual identity. I’ve had depression for as long as I can remember and definitely dating back to when I was seven and experienced my first suicidal feelings. For other people, unfurling sexuality may be the trigger for mental illness.

We still live in a society which makes it hard to be anything other than heterosexual. LGBTQA teens have higher rates of mental illness. You’re at a stage in your life when your creating your sexual identity, you may feel you don’t fit it, you may be persecuted. And there’s a host of additional factors which come in if you don’t think you’re the gender you’ve been performing for the last ten fifteen years. A confusing time for anyone, adolescence as LGBTQA can be far worse.

This increased risk of mental health issues continues past adolescence. For example, in Australia, it’s estimated that 36.5% of trans people and 24.4% of lesbian, gay and bisexual people will at any time meet the criteria for a major depressive episode. Trans women (male to female) are especially likely to suffer from mental health issues. Gay, lesbian and bisexual Australians are more than twice as likely to experience an anxiety disorder as heterosexual Australians are (31% compared to 14%).

Historically, the World Health Organisation only removed homosexuality as a formal psychiatric diagnosis in 1992. It’s still illegal in over 76 countries. Even if you are lucky enough to live in an accepting community, you’re still exposed to discrimination and hatred and it’s hard for that not to impact you in some ways.

The impact of mental ill health on sexuality

Looking now at the impact of mental ill health on sexuality I’m going to talk about the mental illness first and then move on to any effects that medication plays.

  • You may feel increased or decreased sexual desire
  • You may experience low self esteem or symptoms which make you believe you’re unattractive or unworthy
  • You may experience loss of interest in people, activities etc
  • You may experience loss of motivation
  • Your self care skills may be affected leading to poorer hygiene which in term affects confidence
  • You may find it difficult to meet people, for example if you’re spending long periods of time in hospital or find it difficult to leave your home

Obviously a loss in sexual desire is going to have a huge impact on your sexual expression but the other examples show that there’s lots of factors at play here. With my anorexia at it’s worst, I would have struggled to let someone else see or touch my body. I had a head filled with calorie counting and self loathing and there was no space in there for sex. I was also constantly exhausted and had no interest in anything. With depression, I find myself in a place where I think no one can like me, that I’m worthless and horrible and that’s not conducive to a good sex life! I also self harm and again, I would find it incredibly difficult for someone to see recent injuries.

And if your mental health problems are related to issues such as abuse or rape, then the subject gets even more complicated.

And then there’s the medication… Side effects of medication can cause loss of libido, vaginal dryness, problems getting an erection, problems orgasming, weight gain which can affect confidence etc.

I want to briefly mention substance or alcohol misuse (which can occur because of, or be considered, a mental health issue) because that can have quite a huge impact on sexual behaviour. For example, if you’re under the influence of drugs or alcohol, you may do things you wouldn’t normally do; having sex with someone you wouldn’t normally, having unprotected sex or engaging in sexual acts which you wouldn’t normally (eg sex in public places, being filmed, particular types of sex). Similar behaviour may also arise from a manic state.

As you can see, there’s a lot of interacting issues when it comes to mental ill health and sexuality. I could go on and on, but really, the purpose of my post was to highlight the issue. And try and get people talking about it. Mental health and sexuality on their own aren’t topics people talk about much so mental health and sexuality together doesn’t stand much of a chance.  And yet, communication is a key part of building a healthy sex life.

If you need help with any of the issues raised, please speak to your GP, care team, partner, friends or helplines.

In the UK, the Samaritans are open 24/7 to listen to you.

If you’re struggling with your sexual orientation, have a look at Mind’s useful contacts.

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.

image

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What strategies do you have?

Taking up space*

The issue of taking up space is one that seems to come up time and time again in my life.  As a young child, I was quiet and well behaved and easy to miss.  As I got older, my depression convinced me that I was worthless, useless, a waste of space.  I withdrew, I would withhold opinions, I wouldn’t challenge things I knew were wrong.  I dumbed down my intelligence.  Older again, and this time it would be anorexia that would convince me I took up too much space.  I was literally too big.  I was metaphorically too big.  Fast forward again and this time the culprit is my disability.

Something happens when you start to use a wheelchair you take up more space literally and this isn’t always an easy thing to do.  In this society we are told that women should not take up space.  (If you’re a male wheelchair user, I’d love to have a chat about this with you, especially if you’ve not always used a wheelchair and can compare the difference.)

There’s no denying it. The chair takes up space. It doesn’t fit it a regular car, it doesn’t fit in some shops, in cafes people have to move for me. And all the time I’m apologising for it. I can’t reduce the size of my chair or the space I take up so instead I am constantly stuck in apology mode.

I’m so sorry that my existence is having some impact on you. I’m so sorry you’re having to adjust your path to get past me. I’m so sorry I’m trying to get a table in a restaurant and you’re having to move to accommodate me. I’m sorry I embarrassed you when you came out of the disabled toilet and got ‘caught’ by a disabled person**. I’m so sorry for existing as a disabled woman.

And yet I feel I can’t stop apologising. As a disabled woman my chance of having a crime committed against me is quite high. I’ve had people get annoyed (thankfully only in that British way of grumbling loudly to their friend so far) when I’ve not played the game and not apologised for the few seconds I inconvenienced them. I’ve had people grumble that I shouldn’t go into town on a weekend because it’s busy. I try to avoid this anyway as I hate crowds but that is my choice.

My wheelchair takes up space but I should still be able to go where I want when I want. Except again, this isn’t a reality. Because there are places where no amount of apologising will help me. I can apologise all I want but I’ll never get into the corner of the shop which is crammed full with displays in the aisles; “If you tell me what you want, I can get it”…”I’m sorry… I don’t know what I’m after…” and I leave.

 

With every half-finished sentence, every statement ended with a question mark, with every apology we offer to someone who has wronged us, minor or major, we deny ourselves, we deny our value.

With every tentative whispered proclamation, with every “I think…” when we know, we deny ourselves the space we are owed.

We are so socialised to believe we are not allowed space that we are complicit in our own erasure.

We make ourselves small so others are more comfortable. If I make myself small, people don’t have to face my disability and with it their own mortality, their own imperfect infallibility, the imperfection of me, the guilt I seem to impose on them. If I make myself small, they don’t have to face themselves, their lack of consideration when I turn up at the party and there’s a step into the house or the bathroom is upstairs.  “I didn’t think…” they mutter…as if I’m the one who should be embarrassed.

 

Every time I tell a shop that it’s ok when they don’t have a ramp, I’m letting them off.  I’m telling them that I’m not important and it’s ok that they aren’t accessible.  I’m giving them permission to reduce the amount of space I can take up.  Whether that’s in their shop or in their minds.

Every time you have to ask for the key to the disabled toilet or get a stranger to go into a shop to ask a member of staff to bring out a ramp or get told to go in the back entrance by the bins, you are told that you are not important.  You are not as valued or as worthy as other people.  You are told that you are a burden, a nuisance, an ‘other’. That you should not be there.

Letting yourself be who you are and owning that in a society which does all it can to prevent this is a powerful act.  Without it, the issues which make us feel unable to take up space will be perpetuated and will continue to reproduce.  We need to challenge the physical issues which keep us “in our place” but also the attitudinal issues.  Why should I apologise because you need to let go of your boyfriend’s hand in order to pass me on the pavement?  Why should I be embarrassed when I ask you to pull a chair in so I can get past?  All I have done “wrong” is to exist with a disability.  If you can’t deal with it, you should be the one apologising to me.

Taking up space is a truly political act.  When I was at my worst with anorexia, I had no capacity to question or object to the way society treats women, the patriarchy was having a great time. When I can’t access buildings or facilities because of my disability, I can’t easily or effectively object – I can’t physically get to the people I need to complain to.  I can’t make them see me.  They’ve engineered that well.  Preventing us from taking up the space we’re entitled to is a fantastic tool of an oppressor.  Let’s try and break that.

Take up your space and take it up proudly.  We are all human. We all deserve to take up space.

Check out Vanessa Kisuule’s “Take up space” for some excellent poetry about women and space.


 

*I’m going to use the word space a lot.  I mean literal space as in the physical footprint I have when I stand or sit or lie down.  I also mean audible space – the space that is inhabited by noise.  Like all ‘spaces’ there is a finite amount available. In this case, people who are shouting take up more of it.  Similarly, I might be referring to the space in societies’ consciousness.  Or the space for ideas and thoughts and opinions.  This idea of space as more than physical is talked about by Rosalind Jana.

**not all disabilities are visible but I’ve had a lot of cases of people who misuse disabled toilets, normally because they are getting changed or want a shit…