The uncomfortable truth

Today I went into work for the first time in six months. 1st April will mark a year since the first day of my sick leave, and my employer needed to discuss my most recent Occupational Health report. The report suggested that it had taken some time for me to become reconciled to the fact that I was experiencing a very lengthy, serious episode of bipolar disorder, and that I would be quite disabled by this. At the assessment appointment the Occupational Health specialist had helped me to see that all the times I had planned a return to work – sometimes even fixing a date and agreeing the structure for a phased return – showed creditable motivation to remain in employment, but were actually indicative of denial about how bad things really were. Given my circumstances, the OH doctor suggested that while I would most likely be able to work again in the future, no-one could predict whether this would be in 3 months, 6 months, a year’s time, or even longer. Today’s meeting was to discuss how go forward from that position.

I started off being quite composed, but as soon as I saw my manager I began to feel very tearful. She and I have a long history of working together; she was my practice assessor during my professional training, and cheered me on as I completed the vocational component ahead of my peers and achieved the best degree mark of my cohort. She interviewed me for my first specialist post a year after qualifying, and made sure to provide me with developmental opportunities on a regular basis. A year later, she encouraged me to apply for an acting manager post, and continued to offer me great support from within the management team. She knew me as a person who had an active social life outside of work, who often stayed late to go on to one of the three choirs I sang with, or who went from work into central London to meet a friend for dinner. Neither of us understood at the time that this was remission, that it wouldn’t always be like this.

This morning, feelings of shock (maybe even horror), alongside compassion and sympathy, were evident on her face as I described what life is like for me now. How I have come to recognise that I have two choices, and I don’t like either of them. I can refuse the drugs and live with the symptoms, which will include broken sleep if partially medicated, or complete sleeplessness if not medicated at all. I still have not had a single night where I have been able to sleep without the help of antipsychotics since late April 2011. Unmedicated, my mind will move from busy, to racing, to something with the uncontrollable quality of a runaway train. This train can bring hallucinations and unbearable loops of music that play over and over again in my head, quickly leaving me feeling exhausted and frightened. Then I will want to kill myself. Or I can take the drugs, and tweak the dose ever upwards until I get to a level which will just about control my symptoms (I thought I was there, but actually maybe I’m still not). To achieve this control, the drug acts on my central nervous system, so I feel sleepy, get confused, forget words, forget names, lose things. I explained how I managed with difficulty to take my children to an activity at the weekend, but forgot to bring with me a critical item, and was informed by my partner on my return that I had left the iron plugged in. My manager has known me for years as an enthusiastic and dedicated caseworker, sorting out clients’ benefits, housing problems, drug treatment packages, employment advice. Today she heard that I am reduced to tears by letters from the DWP and was incapable of filling in a claim form Disability Living Allowance without the services of an advocate. I have to use my mobile phone and my partner to remind me to take the drugs, pick up prescriptions and request medical certificates. I explained that the drugs also have unpleasant physical side effects; how right now my Consultant is searching for explanations for involuntary muscles spasms (which can be a twitch in a tiny muscle somewhere in my finger, or a huge surprising jerk of an entire limb) and sudden hair loss.

Overall, the choice between bipolar disorder symptoms and bipolar med side effects just about falls on the side of the meds. I choose the cognitive impairment and the ridiculously long hours in bed and the handfuls of lost hair over the awfulness that is a dysphoric high and the urge to end my life. But either way, I am disabled; disabled by the illness, or disabled by the treatment. My priority used to be getting back to work, but now it is simply to prevent situations which increase my risk of suicide and/or might lead to hospitalisation. Often that feels like a full time job in itself. Most of the time I am used to the bargain, but seeing the realisation of my situation dawn across my manager’s face, I was hit hard by disparity between how I used to be and how I am now. I cried through the rest of the meeting. When other people were speaking, I looked down at my hands and watched them shake under the table. Not because anyone was nasty to me. Far from it, I felt that all participants were incredibly sympathetic to my situation. But we all understood that with the best will in the world, I am not going to be going back to work any time soon. The organisation is just going to have to decide what to do with that. Despite the tears, I felt a sense of relief. At least I can stop pretending everything’s going to work out fine and I will pick up my life right where I left off. I can stop feeling guilty each time I send in another medical certificate. There will be no more dates to return that I fail to keep. My recovery feels like a full time job, and maybe now it can be.

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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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35 Responses to The uncomfortable truth

  1. I feel for you and though I cannot know your unique experience, I am going through the “I will work again soon” denial. Work was so much of who I was prior to my experience with mental illness. I am now struggling with the “death” of my old self and the labour pains of birthing my current self who has limits that in no way would be appealing to any employer. I can’t figure self-employment either though it seems to be the best option for my circumstances (is that denial talking again?) You have motivated me to try and let it go and see what relief comes with knowing that I won’t be working any time soon and I will no longer be breaking commitments to myself to generate income to support my financial independence once again.

    • I am trying to look on this as “an opportunity, not a challenge” in terms of thinking about where I could go from here. I totally agree with you that losing my old self has beena death; the Occupational Health specialist said I was in denial but am not going through bereavement. I have been fixated on there being ONE path – back to my old employer doing my old job. Once I am stablised I probably need to review the many potential paths that are probably out there.

      • Louise says:

        It can be such a long road to recovery after a long period of illness. I had what I’d term a breakdown in Autumn 2008 and was manic followed by a period of depression for about three months. I’d been up and down that year anyway and couldn’t face the OT, the phased returns, the crisis meetings and all the stigma and worry that goes with it, so asked for voluntary redundancy. I took three years out of work and slowly mended, got to grips with my bipolar and the medication and got strong. It was tough, I did have to rely on benefits but it was truly the best thing I could have done for me and my two young daughters. I’ve been back at work now for 5 months and it has been a struggle but I’m coping, just as any working mother copes with no serious signs of relapse. Give yourself time to heal – there’s nothing to be gained by piling on the pressure. Your professional life will change but mine is now better than before and for the time being, I’m holding on to that!

      • I think it will be best for the pressure to be off. Long term, though, there are financial worries. We live in a part of London where housing costs are very high, and our finances are based on the assupmtion that we will have two incomes. I have two children who live with their dad the majority of the time, and I am not able to contribute; my current partner has two kids at university to support. My inability to earn puts a strain on everyone else. I try not to feel guilty about it, but it’s a fact 😦

  2. I understand all that only too well and can only feel for you deeply. I too tried to go back to work – several times. I got labelled a handicapped worker, I got labelled partially invalid but eventually it was obvious that my employers didn’t want me around and it was with great relief that I was declared totally incapacitated even though medicated. Great relief to everyone but me – because even by that time I was still under the impression that I was capable of holding down my stressful and over-charged job. I was wrong. I know that now and finally I can look at things differently – good luck and best hugs on your own road. It’s a stony one but you have friends xx

  3. Greg says:

    I think that you are very brave writing about your experiences.

    On the subject of muscle spasms, I’ve been having eye twitches with my meds. Well, it’s either the meds or a lack of magnesium due to stress. Bloody annoying either way!

    Just thinking, do you listen to much music? It has helped me, both with grieving for my son and my “mild” bi-polar.

    • Hi Greg, I am waiting for the results of my last lot of bloods which among other things was a check of my calcium levels to see if that’s behing all the twitching (argh! there goes my lege even as I type!). I do listen to a lot of music, but I have to be *really* careful with it. When I am a little high I start getting the urge to listen to high tempo much, often dance music which is not normally the type of thing I tend to listen to. If I give in to this it really increases the feelings of elation and winds the hypomania up another gear. Also the melodic hook can easily get trapped in my brain and go round and round, which I find very distressting. So I have to force myself to do the opposite of what I want, and listen to very gentle classical or relaxation type music, something without a beat and preferably without a repeating melody. Music with strong associations, for instance music I lstened to a lot as a student or in a particular relationship, is not too good for me either. I wish my relationship with music were not so complex! But there it is. C

  4. Greg says:

    I think that you are very brave writing about your experiences. Speaking of muscle spasms, I’ve been having eye twitches with my meds. It’s either the meds or a lack of magnesium due to stress I’ve been told.

    Just thinking… do you listen to much music? I have refound music after the death of my son and in dealing with my bi-polarity (diagnosed after his death). I often wake up in the morning with my headphones still on.

  5. I have tears in my eyes and my heart is heavy for you, it must be incredibly difficult to live through such things – the highs, the lows and the pros and cons of treatments that just bring their own host of symptoms. Thank for continuing to share and for being such an inspiration and role model to us all. 🙂

  6. emma says:

    u are a brave women who has alot of courage to post your events , my meds make my leg shake and even when people say stop i cant as i dont know i am even doing it . i am thinking of u hun emmsx

    • Sometimes the sharing helps. Just chucking it all out there into words instead of holding it inside. I hate not feeling in control of things, but when it comes to stuff like med side effects we are really not. Thanks for reading my blog, I really appreciate it. C xx

  7. Claire says:

    That really sucks for you. I’m sorry to hear it.

    You do a fantastic job of raising awareness for a much misunderstood illness. I don’t understand how anyone can call it mental when the symptoms are so clearly physical. Our brains are as much a part of our physicality as our noses or feet.

  8. showard76 says:

    Thinking of you, I don’t know what to say, but I’m thinking of you 😥 xx

  9. I am so proud of you for writing this, and for acknowledging the truth of your situation. My own journey to recovery (albeit not from bi-polar) has been and will be fraught with obstacles and set backs, but knowing you are there is an immense support. I wish you the best of everything xx

  10. Incredibly moving post, C, but also really quite positive (though I guess you might not see it that way). That the people in the meeting were sympathetic shows that there are some out there who understand or – at least – want to/will try to understand.
    I hope things improve for you soon.

  11. Henry Dunn says:

    Must be an ambivalent sort of feeling for you – relief that you are no longer fighting to get back to work, disappointment that work is not possible for you at this time, and may not be for a very long time. I love my work, but it also can make me ill, which is why I’m at home and taking 225mg of venlafaxine a day. Seemes to be helping – that and a lovely weekend in Cornwall in gorgeous weather. I’m confident that I’ll get back to work, but I will need to look at reducing my clinical work somehow.
    I think you could write an amazing book about your experiences. You are clearly a talented writer and communicator, and your blogs could give you the basis for something a bit longer. This could also earn you a bit of money, which would feed your self-esteem. I’m pretty good at proof-reading if you need help!
    Your comments about music make me think twice about recommending music therapy to you – it is clearly very powerful for you, and sometimes not in a good way. However, in Music Therapy you do at least have control over the music you produce (well, the unconscious can take over, but at least it comes from you, not the radio or a CD). Something to ponder perhaps. In the meantime, take it easy, get used to being someone who is not going to be in employment in the foreseeable future, and spend time with friends. As you say, that is the most important thing. Hope you find the balance between meds and your own ways of combatting the debilitating symptoms. Take care, Henryxx

    • Hi Henry, always great to “see” you 🙂 Yes, it’s a very ambivalent time, I feel a sense of release that this period of employment is probably going to come to an end, but a lot of sadness about that too. I think there are a lot of us who work in therapeutic relationships and then get ill; something about us makes us good practitioners, but also dealing others’ suffering can make our own issues become unmangeable. My instinct right now its to steer clear of frontline client work at least for a while. And I will think about the book! I am interested in music therapy now that you mention it – I never really thought about it before. The music that I make in my choirs can also have positive or negative effects, but I think that would be a lot different because again it’s something someone else is in charge of. I’ll think about it! xxx

      • Henry Dunn says:

        It would be lovely to see you properly one day. I sometimes pass through London, and will be there with my odlest daughter (10) on April 10th, visiting the National Gallery on our way back from my parents. If you fancy joining us for coffee, let me know! She loves art, and shows a lot of promise, so I thought this might inspire her a bit. If you want any contact details to find a music therapist in your area, I can supply that for you as well, but don’t rush into anything just yet.
        Did I ever share my Wounded Healer conference paper with you? It talks about how clients can affect us, and how we can use that positively. Its in this journal, and there are some audio excerpts too. http://approaches.primarymusic.gr/approaches/content/view/19/37/lang,en/
        You may have to copy and paste that into your browser if it doesn’t become an auto link. This makes me sound like an IT geek, but I’m not really.
        Best wishes,
        Henry

      • It would be great to meet up, but I will have both my kids with me all Easter holiday so it might be a bit of a crowd! Another time maybe. I will definitely check out your link! Cx

      • Hey Henry, I ran this by my son and actually he’d like to go to the gallery (this is new, despite GCSE Art!). Are you still going to be there on the 10th? We could have a look round then meet up with you and your daughter? C x

      • Henry Dunn says:

        Hope you have a good Easter with the children. I’ll let you know the next time I’m passing through. Would love to hear your comments on my paper sometime.

      • Henry Dunn says:

        I will be at the Tate Modern about lunchtime Tuesday (we’re going to take a look at the Picasso exhibition), but my Mum will also be in tow! She has also suffered mh probs, but I will understand if you’d rather not meet her.
        My contact details are here if you want to text/call me http://jazzmanhenry.vpweb.co.uk/ or via Contact me link on my blog.

      • Henry Dunn says:

        Further to previous comments – still heading for London today, but minus my Mum. Probably head for Tate Modern first, then maybe Tate Britain later. Mobile running out of juice (forgot charger!) but hopefully will be on. Aiming for Tate Mod about midday. Hope you are well, may see you later.

  12. botzarelli says:

    Thank you for writing this candid account. I hope you manage to come through.

    From the other side of the fence, I’m currently advising on how my employer should deal with a new employee who within days of starting work has been off sick with pre-existing depression. We’ve been told by their GP that they are likely to harm themselves if they lost their job (they’ve tried unsuccessfully to return to work a couple of times). On a human level neither I, the HR manager nor the employee’s line manager want to risk this. At the same time, while the employee is still on our books we are unable to recruit someone to do their work in this time of limited budgets and redundancies.

    There are no easy or even clearly right answers. Good luck in finding the best answer to your problems that you can.

    • Hmm, that must be very difficult. This episode happened for me after over 6 years of full time service with my employer, but one of my biggest concerns for the future is how to know when I am ready to return to the workplace. Sounds like your employee either misjudged their readiness or felt compelled to go back anyway, maybe for financial reasons, who knows. Anyway, I have a real fear of deciding I am better, applying for and accepting a job, and then finding out I was wrong. Having worked for many years with people who are risk of suicide, I guess I would have to say you must do what you must do. I am not meaning to sound harsh, but you as employers are there to deliver some kind of business objectives. You have a duty of care to manage an employee as sensitively as possible, but you have a process to follow and you couldn’t not follow it “just in case” – otherwise that would be unfair to all the other staff who have been taken through the process. You have already said this is just the last in a number of unsuccessful attempts to return to work – it is the person’s on-going situation, not your actions per se, which is causing their pain. And quite frankly, if the GP thinks they are a self-harm suicide risk, what are they doing about it??? Employers can never guarantee to keep people in work, and it is primary care and mental health trusts,not people’s employers, who are supposed to help people who are struggling to deal with difficult life situations. A long and muddly way of saying make sure you keep your boundaries and remember what is the health service’s role, and what is yours.

      • botzarelli says:

        Thanks – the employee is a new hire so is someone who clearly misjudged the point at which they were ready to go back to work. From a purely business perspective I know that we could (and ultimately probably will), as sensitively as possible, dismiss them for lack of capacity during their probation period. We have probably gone beyond any duty of care we might have owed given how tenuous a link they had with the company having done perhaps 2-3 days of work in total, but from a human level it is difficult to keep those boundaries even knowing that it isn’t our job to make him better.

        I thought it was worth putting the employer angle on your experience too – you clearly have had support from your colleagues and I wanted to show that this was not an isolated experience. Particularly as there was recently a guy on twitter who was fired for non-performance in a sales role during their probation who was suffering from depression and the general consensus was that his employers should be sued and vilified for this!

      • I saw that young man – it was the way it was done that generate anger. That’s the key, I think – employers can be supportive and sympathetic even if they have to do the worst, or they can act embarrassed, uncomfortable or just plain discriminatory and add to the employee’s sense of discomfort around the issue of their mental health. I know I am lucky that everyone at that meeting was so sympathetic. The bit that make me cry even to thing about it is when the HR guy – who I don’t know well but have always got on with – put his hand on my arm because I was crying so much. It was such a human gesture, and said so much about how he related to me as a person in distress, rather than feeling that we were on different “sides” I just felt how badly he felt for me about how things have gone. I don’t know what the final outcome will be, but I feel confident that the union rep, HR guy and my manager will all do whatever’s in their power to wrap things up without putting me through yet more pain.

  13. p.picasso says:

    That was surely a sad meeting. As a friend it is heart-breaking to watch you go through these kind of situations. Luckily it is now behind you. You never know what may happen in the future but in the end the most important thing is to survive. I respect a lot your ability to despite of all stay analytical about the illness and spread awareness of it with your excellent blog. Many people would bury themselves in sorrow, self-pity and depression but you are actively searching for ways to cope and beat the symptoms which in my eyes makes you a winner.
    On the other hand there are nowadays much more work opportunies around that allow working flexibly taking your situation into account. You may find unexpected possibilities if you keep the eyes open. When will you publish a book, by the way? With your experiences and writing skills you might produce a bestseller, but more importantly, help others to find ways to cope as well.

    • I am trying to view this as an opportunity, and in many ways I do… I just also need to go through a process or grieving and letting go first, I think. I have spent over 8 years building a career from unqualified officer, to trainee post, to qualified officer, to team manager before this episode struck. I as proud of what I had achieved in a relatively short time. That’s hard to say goodbye to. I will think about the writing… not sure I’m ready to attempt a full length work, but I do have some thoughts, so watch this space, I guess 😉 x

  14. cameronlawton says:

    Hello, me again. Skipping back a few comments – I’m glad you said that about music – I find I use it often and it can be a terrible mood-trigger. Either I end up chair-dancing at my computer going into hyper-mode or sobbing uncontrollably at a piece of classical. Either way I have to be very careful to take my music “in moderation”;

  15. deasgriff says:

    I really enjoy your writing. So happy we had an opportunity to talk today via Twitter. I’ll keep watching your blog.

  16. deasgriff says:

    I really enjoy your writing. So good to talk to you today via Twitter. I can understand the long process of recovery and not knowing what will come next, what life holds.

    @clearlysz

    • Hi! Thanks for coming over to my blog. I am feeling a lot more optimistic now, much more “this can be an opportunity” rather than “this is the end of my career”. Been a really strange time for me.

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