2011: the year that….

I lost control. I’d actually already been ill for several months, firstly without realising it, because the episode started with mild hypomania. As my mood switched to anxiety and depression, I began to be aware that I was unwell, but was still able to retain control in the sense of continuing to work and carry on with family activities. It took until March 2011 for that to unravel, and until November for me to be back in a place I had not been since 2001 and had hoped never to be in again – utterly out of control in an agitated, suicidal mixed episode, struggling to explain myself to a strange psychiatrist on a duty rota, and having to blurt out all my distinctly abnormal thoughts in from of my partner. I have had some degree of choice and control over what medications I have taken this year, but of course I have very little over the side effects. I was able to mitigate the intense lithium-induced nausea, thanks to advice from Twitter friends (don’t ever take it without a little starchy snack like porridge, cereal or crackers), but I can’t seem to do anything other than give in to the thirst it generates. The quetiapine causes me drowsiness, difficulty in waking up in the mornings, slowed down thinking, an alternately stuffy and runny nose, a dry mouth, constipation, and engorged and painful breasts that produced unwanted breastmilk. When I briefly tried sodium valproate, it made me dizzy and sleepy and gave me rapidly-changing hallucinations. By the end of 2012, I have also come to feel very out of control of my own body, and I suppose with quetiapine and lithium both noted for causing weight gain, the odds were always against me. I have found it extremely difficult to get a sensible exercise routine going, with my energy levels very much dependent on my mood state and level of sedation. Unfortunately, I also appear to find it very difficult to control my eating; old issues of “If I can’t eat perfectly, it’s pointless, so I’ll just eat anything “ and “I’m having a crappy time, I deserve to eat this calorie-laden food” have resurfaced. I am scared to go near the scales, but I know most of my clothes don’t fit.

I was no longer able to define myself by my work perhaps the biggest learning point from this entire episode. For the past few years, my job role has been the means by which I measure who I am. I’m not just talking about whether or not I regard myself as “successful”, although that is undeniably a part of it (and one of the hardest points of 2011 was when, after being off sick for a few months, my contract as a middle manager – my first ever foray into management – was not renewed). It’s also the fact that I tend to do jobs which I feel are “important” and “worthwhile” in some way, and have therefore only ever worked in the public or charity sectors. What I do with my working life is how I feel that I matter. But as my sick leave has gone on and on I have felt increasingly distanced from my job role, leaving me to face the question: without my work, what is the point of me? I love my partner and I love my children, very, very much; but I don’t want to get into defining myself as “someone’s partner” or “someone’s mum”. And I don’t really believe in any sort of higher purpose or plan for humans. So what? Why do I even bother to stick around? Surprisingly, this blog – along with undertaking small, manageable pieces of voluntary work for my Trust and some of the mental health charities – has allowed me to find some sense of having a purpose after all. Because the amazing thing about blogging openly and honestly about mental health is that even if I write about something that I’m sure nobody else in the whole world could understand/accept/relate to, even if I tremble as I hit “publish” because I think people will hate or despise me for what I’ve written, people still contact me via the blog or Twitter to tell me that they are I so glad I wrote that post because now they feel less alone. I’m not fit to work at a paid job role, but it turns out that being a sick and confused me is enough to make a difference to some people. This has astonished me more than anything else in the past 12 months.

I stopped being a reader. I used to regularly read one or two novels a week, more if on holiday and at Christmas. My Twitter bio made a point of what a voracious reader I was, and many of my original buddies there were people I followed because they had similar tastes in books. In fact, when I started this blog, I envisioned it as a place where I would talk about books and reading (starting with some of the best-loved books of my childhood); blogging about mental health was not in the plan. During 2011, my sense of myself as “a reader of fiction” has completely disappeared. Stress, anxiety, depression and hypomania have all in their own ways left me struggling to concentrate on a storyline, and the sleepiness caused by the antipsychotics has exacerbated this. I have become increasingly embarrassed by my ever-growing “to be read” pile, and by the way that books which normally take me a few days to get through now take weeks or go unfinished. The things I have successfully read are a few young adult novels, humorous books (including How to Leave Twitter and How to be a Woman) and the fantasy series A Song of Ice and Fire (recently adapted for TV under the title of the first instalment, A Game of Thrones). I have read the whole series back to back up until the most recent hardback release, A Dance with Dragons – which I received in the post this morning. With short chapters, narrative strands that jump back and forth between a group of interesting characters, and plenty of cliff-hangers, George RR Martin’s series is the epic fantasy that even those with compromised attention spans can enjoy. When in years to come I think of my reading experiences in 2011, I will no doubt picture myself on public transport, clutching a 700 hundred page paperback and flipping from the maps at the front to the genealogies at the back in an attempt to keep the characters’ movements and allegiances straight in my head.

I began to prefer my own company. Anyone who knows me in real life will tell you that this represents a massive shift. I used to loathe spending time by myself, and would sometimes joke that I am like a sociable pet dog: go out without me, and I’ll end up whining underneath the front door and chewing the furniture in a frenzy of lonely misery. In nine months of being at home alone every weekday, however, I have felt lonely only a handful of times. Partly this is because during 2011 I developed a fantastic set of friends and supporters online; but it is also true that I have come to like my own company more, and to sometimes actively prefer it to going out and meeting up with people. I began to take long walks on my own (particularly sections of the Capital Ring) and to prefer to visit open spaces such as parks and formal gardens on my own. In the past, I would have felt some sadness at being in such places by myself, but this year I have found being solitary easier to deal with than crowds (due to my bipolar superhearing and difficult anticipating people’s movements) or casual conversation (“How’s work, then?” “Errrr….”). It’s undoubtedly a good thing that I am now able to feel positively disposed towards time spent alone. However, like so much in the bipolar life, there’s a fine balancing act to undertake – being comfortable alone can easily tip into preferring to be alone due to social withdrawal, and my obsessive traits have definitely come to the fore as I have developed my own, rather fixed, routines for the day. Something to keep an eye on.

I became a mental model. “Mental modelling” was the name of the introductory piece I wrote for the photography project I worked on during October and November towards my friend Helen’s MA in Photography. I say my friend Helen, and she very much is now; but at the beginning we were strangers, introduced by a tweet from Time to Change about how Helen was looking for women with lived experience of mental illness to take part in an anti-stigma project. I have already blogged a couple of times about the process, but to summarise, the idea was to take pictures which represented my experiences of bipolar in a metaphorical way. So depression came to be represented by me as a princess who cannot laugh, stuck in a tower (linked to a blog for the International Bipolar Foundation on bipolar and fairytales); mania came to be represented as a champagne-quaffing, narcissistic debutante; the part of me that has become increasingly solitary was represented by a shoot of me seeking out quiet, undisturbed spaces in Kew Gardens. For someone who is usually camera-shy, it was a distinctly weird (but good!) experience, including the exhibition itself. I felt very odd as I stood in the gallery watching people discuss framed prints of photos of me, then move to a sofa where they could look at a scrapbook containing more photos juxtaposed with some of my blog posts, or listen to audio of Helen and me discussing how mental ill-health has affected our lives. Occasionally, strangers would say to me, “That’s you!” and I would talk to them about the process of working on the project and what we hoped to achieve. When Helen has the time, I am still hoping that she can and I can host an online gallery so people who are interested can see the results. For now, here’s the home page for Helen’s work in the exhibition: http://www.neithersnakenorlizard.co.uk/photographers/rimell.html

Twitter kept me alive. Yes, that sounds dramatic, but I’m not exaggerating. 2011 was the year when people who cared, despite have no knowledge of me in real life, and talked me through crises minute by minute. I’ve struggled mightily this year to adhere to my own mantra, “Don’t hurt yourself, don’t kill yourself, don’t run away” and I am not sure how I could have managed it in the dark of the dead of night in a mixed episode, or the stressful wasteland of an afternoon in the school holidays when gripped by depressive despair, without Twitter. When I reached a point of feeling that I simply couldn’t live with the pain I was experiencing, it was a Twitter friend I texted, because I knew she would understand. Over the course of the year Twitter friends with personal experience of bipolar and other disorders have helped me compose impromptu suicide preventions plans, make decisions about whether and how to tweak meds in a crisis, and decide what to prioritise and what to let go when I was feeling overwhelmed. There is nothing I can say to my Twitter friends that isn’t familiar to somebody, so I just don’t get the reactions of shock and dismay that “civilians” can display when I disclose a new treatment plans or your darkest thought patterns. Although I’ve found this year very hard, I cannot feel that it has been a total write-off when it had led me to meeting such fantastic people

I’m not sure what I wish for in 2012. So many things are out of my control that I daren’t do too much in the way of planning. The plans I made in 2011 were often impossible to keep to, and this has left me nervous of committing to anything beyond a few days into the future. So maybe I’m better off with broad aspirations, something which indicates hope and intent without requiring timescales. Better for me to think that I would like to get back to work, rather than to feel that I must, because worrying about running out of sick pay, being faced with disciplinary action at work or becoming completely unemployable makes a return less, not more, attainable. I’d like to return to exercising regularly and lose some of the weight, but if I set myself a target of losing X stone by date Y a mood change or a med change will intervene and leave me feeling that I have failed. So let’s keep it simple: I’d like to feel better.

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About purplepersuasion

40 something service user, activist, writer and mother living with bipolar disorder. Proud winner of the Mark Hanson Prize for Digital Media at the Mind Media Awards #VMGMindAwards 2013. Winner of the World in Mentalists Mood Disorder blog 2012. Regular guest blogger for the International Bipolar Foundation http://www.internationalbipolarfoundation.org/ Expert by Experience working with Mind training department. Working on The Incoming Tide, a bipolar memoir. Find me on Twitter @BipolarBlogger or at my Facebook page http://www.facebook.com/BipolarBlogger
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15 Responses to 2011: the year that….

  1. Sam says:

    What an uplifting and inspirational post. What’s clear to me us just how much you’ve achieved this year. Well done you! So pleased to be counted as one of your new friends and so pleased you are one of mine.

    Must admit, this post made a tear trickle 🙂 xxxx

  2. Victoria_C_W says:

    I wish you the best for 2012, you have made my 2011 infinitely more bearable 🙂

    Much love

  3. landslidegirl says:

    i’ve only ‘known’ you for a few months but i think you’re lovely and it seems like you’ve coped with everything admirably. i hope 2012 brings you the peace you deserve. X x

  4. Henry Dunn says:

    Oops, I’m not Henty, I’m Henry!

  5. Sharing your experiences openly is quite encouraging for me as I share some of your attributes. Right now I am going through a period of struggle which I hope will not be prolonged too much. Even though my level of functioning has not been high I am struggling to meet that standard. I too wonder if and when I will work again. And the world wide web is a great help and makes me feel less isolated.

    • Hi Bubbles, it’s true that there is a lot of rubbish on the web, and of course there is some disturbing content, but for those who know how to navigate it and have problems due to sickness or disability it really is a fantastic support. I’ll keep posting and tweeting and connecting with others along the way so that I don’t feel so alone either 🙂

  6. Zoë Smith says:

    Hi

    So glad to have met you and not at all surprised it was through Twitter, my own blog round up of 2011 also credits twitter for my survival. I’ve yet to decide whether my survival was a good thing or not but the people, including you, that I have 24 hour contact with on twitter tell me it is, so I keep going.

    Well done for making it through the year. Keep tweeting.

    Much love

    Xxx

    • Thank you so much Zoe, I read your end of the year post and related to that aspect of it strongly. There’s no way I’ll stop tweeting when I need to… I think my partner could do with me taking a bit of a break now and then, but he does understand that in the hard times talking to people with similar experiences is all that gets me through. xxxxx

  7. I have to say that 2011 has been similar, in that I believe it was a year of learning. The lessons were difficult and I wasn’t sure what was happening often times, but it brought me a new sense of control and awareness. I can only be thankful for that! Cheers to 2012 being a year of betterness!

  8. Ah, Henry, such a nice reply – sorry it’s taken me a while to respond, with the children on school holidays time on my own laptop becomes minimal! You have been so supportive throughout my blogging experience, I am so glad you found my blog somehow so we could connect. Re: your feelings about your wife losing patience – of course it will be a struggle for her if she is coping with things and you’re detatched from that, BUT! I also think that when we are depressed we tend to greatly underestimate our partner’s love for and patience with us. When my mood takes a nose-dive, one of the very first thoughts to pop into my head is, “Oh, God, Mr Blogger must be so sick of this by now… I can’t understand why I can’t just hurry up and get better, so I’m sure he doesn’t either. He must be getting incredibly bored with me, I’m sure it’s only a matter of time until he leaves me.” When I share those thoughts, he actually laughs, because it’s so far off the mark. It has helped me this year to get to know a friend who has become partially-sighted through illness and is undergoing a series of operations. Like us, he has a sickness/disability which is longterm; like us, he is much more limited in what he can do in terms of stuff around the house, going out, going on holiday. Although he doesn’t suffer from depression, he too has all the feelings of, “Argh, my wife must be getting fed up with me, I’m not pulling my weight practically or financially” etc etc. In other words, I think it’s a common experience in long term illness, then when you factor in the way depression makes us take the negative view, downplay our own worth to others, etc – well, no wonder we worry our loved ones are becoming fed up with us.
    Take good care! Cx

  9. Claire M says:

    You are a fantastically skilled writer who is able to articulate thoughts and experiences that many of us have had, but cannot explain. Your current job is only one part of your work potential, and skillset, there are many other professions you would succeed in if you wanted to- certainly writing would be one of them!

    • Ah, Claire, how nice of you to say so! I would certainly welcome a career change after nearly 9 years in my current field, but feel that I lack the stability to make a move right now. To a stable future!

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