Speak louder (or why I’m talking about my mental health)

DSC_0294 edited

I’m talking a lot about my mental health at the moment (more so on twitter than here) and I feel a need to explain.  One of the reasons I think I have ended up where I am is because I didn’t talk.  Therefore talking is important to my recovery.  Also, having a way of externalising bad thoughts and feelings and acknowledging the good days and behaviours is a healthier way for me to validate my experience.  I have an overwhelming need for validation and I know this is something that drives my destructive behaviours and keeps me trapped in their vicious cycles.  Eating disorders and self harm can be incredibly secretive and talking about them is helping to free me from them.  Talking (or tweeting as is more often the case) helps to keep me accountable, even if it’s just being accountable to myself.

I also think that we should talk about mental health and one of the ways that some good can come out of where I am is by raising awareness of depression, self harm and eating disorders.  Even if it’s just normalising the fact that someone is talking about it.

So, if you happen to speak to me you may find I mention my psych nurse, my eating disorder appointments, my weigh ins or my dietitian in passing.  These are part of my life at the moment and the fact that they are means I am fighting, I am trying to recovery.  The fact they are part of my life is a positive thing.  If my talking about it makes you uncomfortable, ask yourself why.  I am not ashamed.  Are you?

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Poetry and illness

The Centre for Chronic Diseases and Disorders is exploring poetry and illness.  As part of this, they have been running a series of workshops aimed at health care professionals, and people affected by chronic illness.  In addition to the workshops there are a couple of events coming up in York in June and an anthology of poems is going to be put together.

I went along to one of the workshops this week, not entirely sure what I was walking into.  I really enjoyed the two and a half hour session led by Peter Sansom who has contagious enthusiasm.

The afternoon was generally took the form of a poem being read aloud and then a few minutes for us to write, generally based on a similar structure or prompt from the poem.

The following are some of my unedited scribblings from the afternoon.  I do plan on revisiting and revising them.

Prompt: Where am I?

I’m under the duvet hiding from my life
I’m twisted, contorted around a waiting room chair
I’m in every joint of my being, feeling the blurry edges of pain
I’m stuck in my mind, trapped by mental illness, freed by imagination
I’m sunsoaked, by the sea
I’m where I want to be

Prompt: Julia Darling’s Chemotherapy, “I did not imagine…”

She did not imagine that at twenty seven she would have shrunk
Smaller than her eighteen year old self
She thought there was a world, awaiting her
Free from the black that clung to her

She had moved one hundred miles
One hundred miles, nine years
More scars, new pains
She hadn’t had a plan but she did not imagine this.

Prompt: I’ve not done… but I have… (I think this was based on a poem by Simon Armitage)

I have not climbed Mount Everest
But I have reached the peak of Pen-y-Ghent
My own, overwhelming challenge
The same aches in my painful joints
The same sense of achievement
And once in a lifetime-ness

Prompt: Imagine a time you were in a hospital

Hurry though automatic doors
Trying to find her
Eyes searching
No one helping
Heart racing
Hospital induced panic

From a seat, next to her bed
We pass an iPad between us
Her morphine mind grappling
With scrabble words, scrambled words

One room, four patients, one visitor
Loneliness cast over the elderly woman
The nurses say they were unable to reach her children

Clatter of life outside rattles into the ward
Her phone alerts her to a friend’s concern
Ours are the only voices
Disrupting the symphony of A&E.

Later, I hear how the laughter has brightened
Her roommates’ day and how lovely my sister is
She’s always been a charmer
Even from her hospital bed

Prompt: Write to something eg jogging, stammering, piano lessons

A letter to my chronic illness:

Why did you come into
My life and start stealing from
Me? What had I done to
Provoke you? You are
Stripping back my independence.
I’m clinging tightly but it’s
Exhausting when you throw toddler tantrums
How can I hold my
Grip on myself when you scream
At my ankles, at my legs, at my body?
You’ve taken so much and
Given so little.  If you were a
Friend, I’d have crossed you
Out of my address book years ago.
You’ve ripped my dreams to pieces
Whilst laughing in my face.
You’re always and forever there.
Please tell me
How can I get a divorce?

Yours, in shackles and chains.

This is my life. This isn’t a life.

Wake up, run hands over body to check for overnight weight gain.

Drag self out of bed. If I stand up and the room goes black then I know I’m on track.

Put on the kettle.  Make coffee.  A taste acquired through anorexia .

Strip off.  Weigh self.  A good day will see weight loss.  A bad day, weight gain.  You have to weigh yourself before you can eat or drink anything.  You have to weigh yourself naked.  No more pj days for me.

Slowly get dressed.  Exhaustion makes it difficult to do everything.

Wearing seven layers and still not warm.

Drink coffee.  Possibly have dry cereal for breakfast.

Then drag self to work.  Walk seems like forever.  Have to take the lift one floor.

More coffee.  Mainline diet pepsi.  Countdown minutes till lunch.  Lunch, which can barely be called that.  Constant counting of calories.  Working out the possibilities of food combinations.  What can I have for tea? If I have that then I can’t have the other thing.  How can I reduce calorie content of foods?  Constantly thinking.  Constantly counting.

Countdown minutes till I can leave.  Struggle to get to the end of the day.  Trying to remember how to hold conversation.  Pretense of normality.

Dragging self home is almost impossible.  Miles and miles of painful exhausted steps.

Surrounded by mess and dirty dishes, force self to cook.

Eat watching dvds.

Stay, stuck, on the sofa.

Bed. Dreams of food.

Start again.

This is my life.

 

This isn’t a life.

 

Off Topic – Part 4

I was going to sit and write about where my mental health treatment is up to.  Treatment is probably not the right word.  Treatment suggests that someone is doing something.  I also draw a blank about where to start.  For months I have been sending up flares, trying to get help from healthcare providers.  I have friends who are supportive but I need more than they can offer.  I need someone else.  Someone who knows what they are doing with this.
I’ve tried to map things out to outline my journey.  Partly for myself.  Partly because I keep getting asked to retell my story so that the next person can give me a piece of the jigsaw.  I feel like I’m getting to a point where I have enough jigsaw pieces to get a feel for where I’m heading.  This doesn’t sound like much but it’s been a lot of struggling to get that much.  Apparently I still need a few more jigsaw pieces before I can actually get help.  Instead of where I am at the moment which is getting help so that I can get help.
Winter 2012 – Began to feel depressed
Spring 2013 – I approached employee counselling who refused to see me because I was too complicated
May 2013 – GP referred me to the Community Mental Health Team (CMHT) who refused to see me because I have chronic pain and suggested the pain clinic.
June 2013 – GP prescribed antidepressants and referred me to the pain clinic
Summer 2013 – I stopped eating and successfully numbed my feelings.
December 2013 – I saw the pain clinic for an initial appointment.
January 2014 – Pain clinic carried out their assessment and my manager convinced employee counselling to see me
February 2014 – Pain clinic concluded that I need to see CMHT or an eating disorder specialist and advised the GP of this.  Employee counselling decided that as they can only offer short term help they wouldn’t go near the food stuff and would instead focus on mindfulness.
March 2014 – My GP said I weigh too much for an eating disorder specialist.  Occupational Health told me that if I was their patient I would have been signed off work as my BMI is too low.  Employee counselling wrote to my GP to express her concerns and discharged me as there isn’t anything helpful they can really do at this time.
I have managed to slowly increase what I am eating but I’m still not eating enough to maintain my weight although if I don’t there’s a very real chance I’ll end up off work sick which I don’t want.  There’s also a higher chance of death.  I wish that scared me.  (I’m not suicidal but I don’t know that I’d move out the way of a car).  What I am currently eating is resulting in stomach cramps, back pain and nausea.  This isn’t a brilliant incentive to keep pushing.  It also feels like if I maintain/increase my weight I won’t be able to access the treatment that I know I need.
I am physically and mentally exhausted.
Returning to the purpose of this blog, I haven’t written anything this month.

Off topic part 3

5 things I learned in 2013 and will endeavour to remember in 2014

  1. I have amazing friends.  The kind of friends who will travel miles to help me move house, who will clean my old flat, who will help me tell my manager what’s going on, who support me despite living on the opposite side of the world.  Where my family fail, my friends succeed.
  2. It is important to me that I keep learning.  It helps keep my mind busy and I really enjoy it.  I’m already signed up to various Future Learn courses.
  3. I (re)learnt to knit right at the end of 2013 and whilst I still need to figure out pacing and not breaking myself, I’m finding it enjoyable.  I’m also better at it than last time I tried!
  4. Keeping a notebook for quotes, poetry, art etc helps me be creative on a regular basis without overwhelming me.
  5. I can still write and writing doesn’t have to be destructive.

*trigger warning – ed*

But despite that, my head is still in a bad place.  I have an amazing holiday in 6 weeks and I want to enjoy it and be healthy and fit enough to get the most out of it.  I had said I was going to maintain my weight at x stone and I sort of managed for a couple of weeks.  I had a few reasonably good days where I really pushed myself.  Then I went backwards.  Even pushing myself at the moment I’m even close to eating enough and my head has changed the weight I want to maintain.  Obviously this isn’t good but I feel less depressed and less anxious when I am in control of food.  On the days I was pushing myself I was back to being on the verge of tears a lot of the time.  And the stupid thing is, on the days when I’m doing better, I feel like I’m making up the problem.  I feel like I could snap out of it if I tried.  And that makes me feel like I’m doing this for attention, I’m being a drama queen.  And I know that’s my mother’s voice speaking and that it isn’t true but she’s managed to get that message into the very core of my being and I can’t shake it.

This time next week I will have been interviewed for a promotion, I will either have the job or a new manager, I will have seen the OT and psych people at the pain clinic and I’ll be sitting with someone from the employee counselling service.  They may or may not continue to help me.  I have been prewarned that they may very well refer me elsewhere.

I feel like I have lost the ability to fight.

So instead of preparing for my interview, I am going to continue to sit on my sofa and watch dvds.

So it’s that time of year when people are reflected on the last twelve months, offering round up blog posts and colourful infographics.  Condensing 365 days into a few headlines.

I started 2013 denying to myself that I was depressed.  I fought against admitting it for months.  I discovered the Women’s Holiday Centre, Horton.  I gave in to the part of my mind that couldn’t cope with the idea that depression had found me again.  I had one of the worst pain months of my life.  I hurt myself.  I summoned everything I had to contact the employee counselling service who told me I needed too much help for them to see me.  I limited my food.  I returned to Horton and time in the sun gave me what I needed to see my GP.  I was referred to mental health support who refused to see me because of my pain condition.  I stopped eating.  I was no longer crying in toilets at work.  I no longer spent my evenings sobbing into my sofa.  I had been denied the help I needed so I treated myself with starvation.  I was numbed, it worked.  I reached a point of no return.  I had relinquished control to the tool I was using to stay in control.  I let people know where my head was.  I returned once more to Horton.  I am here.  I am trying to fight.

I know that 2013 hasn’t all been about my mental health.  It feels like it has.  It feels like it’s been a shadow overpowering everything else.  I know there were picnics in the park and pots of tea drunk with friends but they feel like they happened to another person.  I can see images but I don’t recall being there.

Instead of looking back on the year that has passed, maybe we’d be better looking forward, to the possibilities that are ahead.

Off topic part 2 (or things people can do to help)

Edited to add trigger warnings: self harm & eating disorder

Because the last off topic post was somewhat bleak I wanted to counterbalance it with one where I’m basically saying I am trying to fight the stupid part of my head. My GP knows about depression and self harm and a bit of eating stuff but she kind of ignored me when I told her I wasn’t eating… I’m on antidepressents and when she tried to refer me to counselling they told her to send me to the pain clinic instead. Had my first pain clinic appointment recently which was useful from a pain point of view. They are going to send me to a joint Occupational Therapy and psych appointment to look at ways of coping with pain, relaxation and stuff like that so I’m hoping that will help. I did also mentioned food stuff to them but they didn’t acknowledge that I’d said it… Seems to be a theme…

One of the things I’ve been asked a lot is how people can help me. I’m not really sure. I’ve been trying to find some answers and the following is the best I’ve come up with so far:

    • If you see me, give me a hug
  • If I ask odd food related favours, it’s probably taken a lot to ask so don’t question me too much
  • Talk to me. About anything. I’m interested in your life but I have lost almost all of my ability to have a conversation.
  • Distract me

Most importantly, look after yourself and know that I am the only person who can really help me.