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.