Peace: Quarter year review

 
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You may remember back at the beginning of the year, I chose the word peace for my year, a la Susannah Conway.

So, three months on, how am I making space in my life for peace?  Well, firstly, I guess it’s expanded.  The underlying essence is still about making a life more peaceful but it’s uncurled to include exploring spirituality, getting in touch with myself, getting in touch with nature, the seasons, the moon, the stars etc and doing lots of creative stuff.  It also includes letting go of judging myself, building up self care routines and letting go of things I cannot control.  If I am waging war on myself, I can never been at peace.

I have a pinterest board which is helpful in reminding me that I am cultivating a more peaceful life as well as for pulling together ideas to explore.

I am doing regular tarot readings and I’ve completed the Alternative Tarot Course which was really interesting and helped to develop and hone my skills at reading the cards.  As I’ve mentioned before, this is a really good way for me to check in with myself and figure out what’s going on in my subconscious.  I’ve also got a pack of beautiful medicine cards, I’ve not used them much but the idea is the same.

I have got a few crystals which I’m using to set intentions and to help me remember those intentions.  For example, I had an important meeting this morning and I wanted to be calm, articulate and level headed.  Last night, I lit a candle, held the crystals and said that was my intention for the meeting.  I put the crystals in my pocket and they just acted as a reminder.  So when I started to ramble, they prompted me to stop, breathe and start again more clearly.

I’ve had weekly check in sessions with myself, mostly at a local cafe.  I have a stack of question cards to use as prompts to help me reflect on the week, how I’ve coped, what went well and the week ahead.  Ensuring I keep space in my week for this is really important in helping me to process emotions and keep my life ‘peaceful’ or more balanced.

As part of my checking in with myself, I have also done some work around fighting (systems mostly) and trying to find a way of moving out of the state where fighting is my default mode.  I’ve done some work to let my ‘inner warrior’ rest whilst knowing that when I need to fight, she’ll be there (and be well rested).  Staying on fight mode is not sustainable.  Its not a criticism of myself, I had hell of a lot of things to be fighting for; house, wheelchair, work, physical health care, mental health care, benefits… so many things you’d normally take for granted… But I have a house, I have a wheelchair, I’m going through the process to leave work so I’m in a much better position now.

Cultivating peace is also about the little things, noticing a bird singing outside the window or managing to find the time and energy to read and enjoy reading.

Challenges to my peace include the upstairs neighbours’ dogs. There are two and they bark whenever their owners are out.  When I catch myself tensing up and getting particularly irritable I notice it and physically uncurl and take a deep breath.  The dogs are still annoying but I’ve interrupted my unconscious reaction which helps stop it from building.  I think knowing my word is peace is helping me to notice when I am getting wound up by this kind of thing.

I know I have a long way to go with this but I do feel I’ve made progress since I set the intention to bring more peace into my life.

Did you set any intentions at the beginning of the year? How are you getting on?

 

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Freedom!

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Today I got my wheels which is so much more exciting than when I passed my driving test. My new wheelchair is amazing. It’s smooth, fast, comfortable, adjustable in 101 ways, has purple rims… But most importantly it’s going to give me back some of my freedom (once the council have fitted an electric door opener so i can actually get out the building…).

HOWEVER it cost me £7000.

Until me and my sister got sick, I’d assumed that the NHS provided things like wheelchairs. How wrong was I?! Each NHS area is allowed to make up their own policy but for York, and other areas as far as I can tell, it’s ridiculous.

Can you safely self propel? No? You can’t have a manual wheelchair. Fair enough I guess, but having a transit chair would be better than no chair. At least then people could take me out.

Can you get around your home without needing a wheelchair?  Yes? Then you can’t have an electric wheelchair. Even if you also can’t have a manual chair and can’t walk outside your home.

Yes. This is the head scratching, puzzled face moment. If my shoulders and hands were better I could get a manual chair. If my legs were worse I could get an electric one. But right now, I can’t have anything.

I’ve been lucky and borrowed my sisters old electric wheelchair for six months which means I’ve been able to continue working and having some kind of a life outside my flat.  I also got given an old manual chair by one of my carers. She had it for a relative who passed away so it was no longer needed. This has meant I can go out with friends and carers on day trips, shopping, hospital appointments etc.

I was also lucky enough to inherit a little bit of money so have used up my savings to buy my electric wheelchair and a more suitable manual chair.

But I know that so many people won’t have had these resources and will be facing day after day stuck inside their home with no end in sight which is horrific.

If you’re having problems funding a wheelchair the main options seem to be Access to Work (you’ll be required to pay a proportion as will your employer) and charity grants (search http://www.turn2us.org.uk to find out what you can apply for).

If you’re concerned about the state of wheelchair services in Britain, you may like to visit Right Wheelchair and pledge your support.

Interview!

Check me out over on Ever The Crafter! The lovely Jessica has interviewed a number of crafters who have chronic illness. She talks to them about their pain, their craft, adaptations etc. She’s also looking for more people to interview if you’re interested.

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Awareness overload… Self harm awareness day

Trigger warning: self harm!

At the risk of flooding my blog with awareness overload I would like to just mention self harm give that it’s self harm awareness day…

Talking about self harm is something I find so much harder than talking about my eating disorder. It feels like people have a stronger reaction to it and tend to focus on the injury rather than the stuff behind it.

Why do people self harm?

Obviously this is for many many many different reasons. It varies from person to person but it also varies for that person. However, as a generalisation (remembering that generalisations aways miss out something), people self harm for two reasons:

  1. Because they are feeling too much, self harm brings that under control. For example, I really really struggle with feeling angry. It completely overwhelms me and I currently have no (healthy) way to cope with it. Self harm is a way of turning the anger down, or off, so I can continue to live.
  2. Because they aren’t feeling anything, self harm gives them something to feel or validates their existence. For example, over the years I have had periods of disassociation, where i’ve felt invisible and completely cut off from myself. It’s like  watching your body live but you haven’t really got anything to do with it. Self harm has allowed me to break through the disassociated state. In feeling pain and seeing the injury, I’ve got myself ‘back into my body’ and confirmed to myself that I’m real.

This is obviously incredibly simplistic and is looking very much at the core reasons. I’ve given it a lot of thought over the years though and my reasons for self harm, do fit into this model. Self harm has allowed me to see my pain (reason 1), to care for myself (reason 1 or 2, in both cases what you’re really trying to get to is something which makes you feel better), to cope in difficult situations (1), to avoid suicide (a risk for me of reason 2)…

Self harm and suicide

They are generally not related. Of course more people who self harm attempt suicide because they are already a group of people at risk of emotional pain. (I’ve struggled with the wording of that but I hope it makes sense.) however, self harm is generally a coping mechanism, a way of dealing with something so that you can continue to live. For me, self harm and anorexia both prevented my suicidal feelings from reaching the point where I made an active attempt to kill myself. I was drowning in depression and self harm and anorexia numbed that pain which meant I could ask for help.

What can I do if I’m self harming or I’m concerned my friend is?

I didn’t really feel I could write this without a little bit of signposting (my day job is all about signposting people to support…).  As I’m in the UK, this is what I know however there’s lots of support elsewhere.

  • Talk to a friend. It’s hard. It’s scary. But having someone know you are in emotional pain helps. If you’re unsure about talking about self harm, focus on what it is that’s making you self harm.
  • If a friend tells you they self harm, stay calm, check if they need medical assistance but don’t make it all about the injury. “I imagine you are feeling some pain, or are finding things difficult, would you like to talk about it?”
  • If you know the core reason you self harm, approach appropriate support. That’s a bit vague but what I mean is, if you’re a young carer who’s self harming because of the pressure of being a young carer, talk to your local carers centre. If it’s because you’ve experienced domestic abuse, try your local domestic abuse charity. But you might not have a core reason and that’s ok too. It’s just if you do, getting support for it will help with the problem rather than focusing purely on self harm which is more of a symptom.
  • Talk to your gp. I wanted to include this but with a note of caution, some gps are better than others… Check if your surgery has someone with an interest in mental health. In the UK, your doctor is required to keep your appointment confidential unless they believe you or another person are at risk of harm although they will encourage you to speak to your parents.
  • If you’re in education, try a teacher, school nurse or counsellor.
  • Online support can be fantastic if you’re not ready to speak to someone you know. Just remember, the internet has good and bad and you are looking for support not people to drag you down.Try the NSHN forum for example or some of the organisations below.
  • National organisations: Mind, Young Minds, Young Minds Parents Helpline, Samaritans, Self Harm UK, Life Signs

The Fool’s Journey…

Apparently the Major Arcana are said to tell the story of the Fool (card 0) and part of the Alternative Tarot Course is to look at the cards and find a story.  Here’s my, almost complete, story.  The more experienced of you will notice that I have missed the last four cards.  When I reached the Star card, it felt to me like pushing the story would be a bit like the time when I was 7 that I wrote “and they walked for a day and slept for a day and then they walked for a day and slept for a day…”.  It felt like I was trying to pull out the story just to make it longer.

NB. This is using the Wild Unknown cards which I believe have Strength and Justice in a different place to some decks.


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The Fool starts off naïve, innocent and curious about the world.  As she starts to look around her, she meets five interesting people.  The Magician is exciting and inspires in her a sense of purpose and a need to get moving and doing.  The High Priestess tempers the Magician with her calm, collected and reflective aura.  Where the Magician is full of energy and dives into new projects, the High Priestess prefers to consider and looks within for answers.

The Empress and the Emperor make a powerful pair. Sometimes considered to be Mother Nature, the Empress is a warm woman who creates and nurtures life.  The Emperor is more of a traditional stereotypical father figure who wants to protect life.  He is more logical and mind focused where she is more focused on caring and emotions.

The final person of the five is the Hierophant.  He is a Wise Man who has spent many years reflecting and thinking about the world and is full of teachings that he enjoys sharing.  The Fool respects and admires him.

In fact, she builds strong friendships with the five people she has met, each offering a different aspect of support and as such, she experiences the union, partnership and joy of the Lovers.

After this, the Fool starts to experience the world and sets off on her path.

Setting out with the action of the Magician in mind, she is filled with purpose and adopts the strength of the Chariot.  However all adventures reach a point where decisions are required or karma unfolds.  As Justice makes itself known to the Fool, she decides it’s time to make use of her friends the High Priestess and the Hierophant.  Pulling on their reflective ability and knowledge, she learns about the Hermit, his life of solitude, self reflection and meditation.  Still overwhelmed by the looming decisions, she spends a period in solitude, reflecting and meditating on her life so far.  Her meditation leads her towards the Wheel of Fortune and she realises it is necessary to change course, to move towards her destiny.

Stepping off the easy path takes courage and strength and the path she has chosen is often unclear and unnerving, to continue on she must be patience and master her emotions so that she doesn’t lose faith and revert back to the easy path.  She also feels the Hanged Man pressing on her.  Changing course, however minor, requires letting go of a future you had envisioned, more dramatically, it can require letting go of believes, friends and security.  However this is necessary sacrifice, a necessary death.

Once she makes the sacrifice, she is able to bring closure on the old path and use the energy spent battling the path to instead move forward more easily and transform into the version of herself she felt drawn to whilst living like the Hermit.  As she does this, with the help of Temperance, she continues to heal her wounds from her old path.

As with all stories, there comes a point where the balance is knocked and negativity enters.  As she has walked on her new path, she has picked up glittering objects which have slowed her down and detracted her from her intention. She has become more focused in gathering shiny trinkets than following her path. Indeed, she has built herself a home of lures from the devil and no longer follows her path at all.

Suddenly, her home is robbed, all her shiny trinkets are stolen and she has no place to live. She is panicked and in her crisis, she turns to her five friends.  It is the hierophant who reminds her to take a step back, reflect and meditate as she had done earlier in life.  He guides her to the wisdom of the Tower.  Through doing this, she realises how off course she has become and vows to find a way back.

The crisis has forced her to look up and around her, and she now sees the shiny, glittering stars, trinkets which she cannot collect and which instead she can use to guide her.  Reassured by this, she sets out again, with hope of her new life and peace of mind that the stars will show her the way.


I just got my deck out to photograph the fool and some of the cards got stuck in the box, with the fool on top.

Eating Disorder Awareness Week

TW: Eating disorders(!)

As well as being Hypermobility Awareness Week, it’s also Eating Disorder Awareness Week.  I hope you’ll all be feeling very aware by Friday!!

This year’s Eating Disorder Awareness Week is focused on eating disorders in the workplace and having had an unusually positive experience, I wanted to write about it.

Respondents to B-eat’s Eating Disorders at Work Survey 2015 reported:

  • More than 30% of people felt they were stigmatised or discriminated against because of their eating disorder at work
  • Nearly 2 in 5 people said their employers’ impact on their recovery was ‘unhelpful’
  • Two thirds of people were unable to access a formal or informal mechanism of support for their eating disorder at work
  • 38% told us they were forced to or felt they had to use their annual leave to attend medical appointments for their eating disorder
  • More than four out of five said they didn’t think or didn’t know whether their employers and colleagues were ‘informed’ about eating disorders.

My manager

I am very lucky to have an amazing, supportive manager who didn’t make me feel stigmatised, who did all he could to help me access treatment and who didn’t insist I use annual leave for appointments(1).

I am lucky in that I have been employed at the local authority in various jobs since 2010 with the same manager so he has seen me at my best and my worst. My anorexia has been on and off but the worst period was in the last three years. My friend and colleague helped me tell him shortly after I became ‘public’ about my depression and eating disorder. My manager was very supportive, he acknowledged that he wasn’t sure what the best thing to say or do was but that I should keep him informed and he’d do anything he could. Other than my manager and friend no one else at work has been aware of my illnesses.

After opening up to my manager, I had a long period where I was unable to access NHS help and my manager approached HR and Occupational Health to see what support could be provided through work. To start with I was told I was too complicated and to go to my GP. Again, my manager got involved and negotiated a 6 week plan of weekly sessions with a counsellor. Unfortunately this turned out to be mindfulness only, which at that stage in my illness wasn’t appropriate. Having run out of options, I was getting desperate and my manager actually wrote to my GP expressing his concerns. Shortly after that, I finally managed to get a GP to take me seriously (GPs and eating disorders is a topic for another day…).

When I finally started to get to the appropriate NHS support, my manager was clear that I could take all the time I needed for appointments including time after to ‘decompress’ before returning to work. He let me work at home when I needed to. We have an online messager system and he encouraged me to use it to let him know if I was having a bad day or needed anything (we are in an open plan office so telling him wasn’t easy and I find it harder to speak when I’m having trouble). He would always ask how I was doing and what support he could offer me and when I told him I found office diet talk overwhelming, he made an effort to redirect the conversations.

Knowing he was aware of the anorexia meant that he was able to give me more flexibility and more leeway than normal whilst still ensuring I was performing well enough (I was worried he’d not pick up anything that was wrong with my work for fear of upsetting me but he reassured me otherwise). He encouraged me to apply to access to work for support and when I hit walls with that process he helped as much as he could.

He has been incredibly supportive, encouraging and approachable throughout my illness. I am now applying for retirement through ill health (for physical health reasons) and he continues to offer support above and beyond what I would expect.

The rest of the organisation…

Generally, I’ve found that whilst my manager is amazing, the rest of the organisation have been less so. There seemed to be little in place to support staff with severe mental health issues, although there is support for mild depression, anxiety and stress. It was really important to me that I continued to work and I believe if I had had a different manager within the same organisation, I wouldn’t have been able to. I have spoken to other people with mild to moderate mental health issues in the organisation who’s managers have been far from supportive.

Other workplace issues have included the constant diet talk that comes with office working. On a number of occasions I’ve rushed from my desk to sit on the toilet floor crying. I find it so triggering to hear and especially things like the 5:2 diet where people were comparing starvation meals and I was there trying desperately to keep myself on track with recovery. There are also very few places where you can eat alone and I can’t leave the office because of a physical disability so generally end up eating at my desk. I’m ok with this most of the time but it can feel like what I eat is on show. I’ve missed Christmas meals, leaving meals and sat through incredibly anxious nights out with my anorexia as so often our work social activities include food and drinking, generally alcohol, all of which can be difficult for me.


  1. In terms of appointments, to start with I had fortnightly appointments which my CPN which required me to travel – by the time I’d got the bus there and back, I’d lost about 3 hours of my work day.  More recently I’ve been having weekly appointments with a psychologist which takes a morning out of my work day.  I don’t work full time but the only availability was on one of my work days.  It would have been well within his rights to insist I wait until I could go on my day off but he prioritised my recovery.

 

Hypermobility Syndromes Awareness Week

As Hypermobility Syndromes Awareness Week starts tomorrow, I thought I’d do a bit of a round up of, what I think, are some of my useful posts about it.

Hypermobility Syndromes (HMS) includes Ehlers Danlos Syndrome (EDS) although various professionals argue about it and some say it’s the same thing and some say it’s different… For all intents and purposes I use them interchangeably.

  • EDS Awareness Month: An Open Letter – this is a bit of an intro to EDS/HMS and I think it’s a helpful place to start if someone close to you has been diagnosed.
  • A day in the life of me and EDS – I’m not an expert, I’m a person living with EDS/HMS and my experiences will be different to other people’s but hopefully it’ll give you some sense of what having the condition means.
  • Eating and drinking with EDS – because not everything is as straightforward as it seems… see split drinks, being unable to hold a fork etc etc…

For balance, because that all sounds a bit doom and gloom…

  • Stuff which makes my days a bit better – for me, this includes twitter and my friends (any kind of chronic illness seems to be a great barometer for figuring out who your true friends are)
  • Travelling with EDS – it is still possible to do things like travelling, they just require more planning and depending on how HMS/EDS affect you, they may require more support.  This post was written when I was using crutches and still able to dress myself.  I am desperately hoping that I’ll make it to New Zealand at some point and will be able to write an updated version which includes wheelchairs and carers.  If anyone has any tips about that, I’d love to hear from you!

Overall, throughout my journey with EDS/HMS, one of the things I’ve found most helpful is other people and their experiences.  I remember a day fairly early on when I asked twitter for advice about bottle openers and I was overwhelmed with kind and supportive suggestions.  If I hadn’t had twitter, I’d have ended up trying lots of different products until I got to the ones I find best.  It seems a trivial example but knowing you can tap into that kind of support from people who really understand what you’re going through is so important.  Whether you find that space on twitter, facebook, online forums or face to face groups, do try to find someone who really does get it.

Useful links

HMSA – lots of helpful information, an online forum, active social media and regional meet ups

EDS-UK – also has lots of helpful information, an online forum, active social media and regional meet ups