It starts with a knot in my head: fatigue

Fatigue is in the news, as a serious long term effect of the COVID-19 virus. It’s a familiar experience for me and I thought I’d track it for you, today.

I felt ok this morning: stiff fingers, a little tingling from my neuropathic pain but no stabbing or throbbing; the usual cough but no wheeziness. Refreshed from sleep as the medication controlling my pain had worked well and the dog was settled.

Now I am slightly shaky, sweaty, it’s hard to think about anything. I have to sit down. The sounds of school children and men working on the house across the road feel like burning, piercing sensations. Every usual pain is present: my feet, ribs, hands, wrists, neck, back, forehead, ears, eyes, bridge of my nose. Pains I was not aware of when I was eating my porridge 2 hours ago. The whining sound of the drill, working on the mortar between the bricks of my neighbours’ house is so painful I take my hearing aids out. Ah, that’s a bit better.

Today I felt the fatigue build slowly, realised I was pushing myself too far, but wanting to get there. Where? To this point now, with my hot drink, in my armchair, feeling like I’d done something worthwhile. But what have I done? What happened?

I got up, remembered the mechanic was collecting my car for its MOT. Grabbed the keys and found the MOT paperwork from last year, left them in car for him (to minimise face to face contact). Dog walker came for the dog. Sat for a while with cup of tea, so far, so good. Ate breakfast, realised I was feeling determined. Not a good combination with fatigue, but that didn’t occur to me then.

I was curiously oblivious this morning. Probably the car MOT and builders across the road distracting me. Had a shower. Had to sit for a while on my bath board to rest. I didn’t notice the knot starting in my head. The pain intensifying. Got dressed. Sat for a while, noticed the rubbish bin and remembered the recycling. It would be good to get that done, too.

Downstairs, had to rest again. What was it that made me get up and keep going? A sense that this day could be good, that the increasing pain in my head would be fixed with distraction, what better than to get stuff done? Clearing breakfast, I noticed I didn’t really care how effectively I did it, so long as it was done. Keep ploughing on, keep on. Tying the recycling bags was painful for my fingers, brutal. I got my penknife to cut through the strong sticky tape on cardboard boxes, to flatten them, and noticed the recklessness again. The knot in my head was expanding like a strange shaped set of balloons, no space to think. I was starting to tremble.

I held my breath on my front path when I saw the dust and heard the drill, nearer, screaming. I froze. My fragile lungs, nose, throat. I must get indoors as soon as possible. Slowly, slowly now, don’t rush, be numb, it’s ok. The balloons in my head knotted and swelled some more. I was sweating. Carefully I made my way, doing little tasks automatically so I knew once I was sitting, I could stay sat till the sweating and trembling and throbbing and all that and more stopped.

Then my online shopping order arrived, delivered with a welcome smile and kind words. Gave me a flurry of warmth, which cleared some of the knots and made me decide that the shopping could wait, there in the hall, till I was ready. And so I sit and wait for the warmth (of that smile, the words, my coffee, the gentle breeze) to lift fatigue heaviness, lighten fatigue fear, stroke painful edges.

Since fatigue became a big part of my life, I have learned to look out for the knot, the trembling, the pain. I’ve learned to sit and wait, often for hours, for it to pass. Sometimes it is alleviated by watching a film. Other times by watching the trees. Curiously, sleep does not necessarily help: you’d think it would but it doesn’t always. Since lockdown, I’ve learned that a quiet life is more satisfying than a rollercoaster of things I used to associate with a good life, followed by fatigue crashes. I’m still learning: still getting it wrong. I’ll be wary today.

Preoccupied and in pain

Here are some thoughts, about pain: familiar, unbearable and new pain. How I twist myself through preoccupations: with pain, ignoring pain, soaring above pain. I’ve done a quick scan of my current pain: there are familiar messages coming from my feet, right knee and the side of my head, like irritating adverts for products I will never want or need. There’s a newish twinge in my right elbow, down to my wrist. My neck whines as I look upwards, to pause and think. The sweet acid taste of reflux, as if I have eaten fruit sweets all morning, lurks around my throat and burns down, to very sore part I fear, deep inside me. My ribs post their presence too: I forget about them. My back grumbles. I clench my fists and my hands obligingly shoot their arthritic reminders. Whatever I do next, my hands set the pace. I have been feeling sad, revisiting memories of people who are leaving or who have left my life, and thinking about how my life will end. This, too, is painful.

Holy Trinity Church, Blythburgh, Suffolk. Medieval carving of Sloth, one of the Seven Deadly Sins.

I am preoccupied when pain starts to get unbearable. The pain seizes my thoughts and freezes my feelings, except for aching, stabbing, gnawing, throbbing and pressing sensations. The thoughts are catastrophic, drawing on every awful experience I’ve had with my ANCA vasculitis, mashing them together in a horrific prediction, such as an unscheduled hospital visit boiling out of control. With effort I can shake off this pre-occupation. I fetch camomile tea, headphones and my crochet, forcing the fears and pain away as I loop wool over my crochet hook, sip the tea and listen to a radio programme. In bad times I keep these things close by, so I am prepared. The trouble with these occupational remedies is they work for me but they probably won’t work for you, or someone you know. After all, I’ve been drinking camomile tea all my adult life to soothe, relax and comfort myself. But I’ve never forgotten that others are repelled by the smell, and some by the tea bag. It looks like baby’s poo, I was told once.

New pain demands thorough exploration, a different kind of preoccupation, with creating questions and testing them out. In the clinics, I find myself suggesting to my friends that they leave me for a while. Partly this is due to the thinking I am doing, to summarise my findings for the doctors. Did this make it worse? Did that make it better? How long? How often? It is so frustrating when it’s difficult to answer these questions. Subtle shifts in routine often give clues about how new pain has affected me. Recently I stopped retreating back to bed with a cup of tea in the morning because the stairs were so painful to climb. I stopped using the local train for a while, because waiting on the platform pushed suicidal thoughts into my head, unwelcome painful thoughts. Even so, I am frequently disappointed by my own lack of occupational focus in creating questions. So often I think first of medication changes, diet, the weather.

Yet an occupational focus is profoundly helpful. Analysing changes to my habits and routine helps label a new pain. Heaving myself out of preoccupation with unbearable pain is possible with my occupational rescue kit. And there’s another kind of preoccupation that moves beyond pain, soaring to enjoyment and engagement in something different. For me, this works best if I am with other people, in a friendly and focused place like an art workshop or a cinema. Often when I’m out with my dog, I will be preoccupied by the grinding pain in my feet and ankles, or painful thoughts about having an incurable disease. Another dog walker will join us for a while. And when I get home to rest, I realise that I’ve forgotten the pain. It hasn’t gone away but I have been otherwise engaged.

Rest:Do Days.

2018-10-10 16.56.57Rest:Do Days

Although I didn’t know it, I was doing Rest:Do Days before I got ANCA associated vasculitis, to manage chronic pain from osteoarthritis. This year I needed to give them a name, to make them a Thing. A shortcut if you like, to a particular way of doing things. A friend told me about the Drill, an approach to managing crises, and to us the Rest:Do Cycle was similar. I am in constant pain, with stiff joints. My thinking can be distorted by the drugs I take. I am weak: vulnerable to infection because I am permanently immuno-suppressed and tired because my sleep is disrupted by side effects. I long for the stamina to do something from start to finish in one go: but I have to rest frequently, to relieve pain and recover my breath and my thoughts.

What are Rest:Do Days?

Rest:Do Days are days when I take control of how and when to do important things. They are different to sick days, when I’m focused on keeping safe, warm, fed, clean, and connected with people. They are also different to hospital days, when I yield to the routine of the clinic or the ward. Rest:Do Days are made up of cycles, so some days it’s possible to have partial Rest:Do Days. On Wednesdays I go to an art class in the morning, so if I am not too tired I will do some Rest:Do Cycles in the afternoon, to do other things that are important to me.

Mostly I decide in advance that I’m going to have a Rest:Do Day and how long the Rest:Do Cycles will be. A favourite one is 20 minutes rest for every ten minutes of doing. Sometimes I will have 50 minutes of rest and ten minutes of doing. Recently when out with friends I could do 10 minutes of rest to 50 minutes of doing, but the doing involved very gentle strolling around a beautiful garden in perfect weather with lovely people, so it was a very easy, enjoyable kind of doing. And we had three very long refreshment breaks: before, during and after. The key point is to schedule in regular rest, whether I feel I need it or not, before I get exhausted. Setting up a ratio in advance means I don’t have to think whether I need a rest. Sometimes I’ve had 5 minutes of doing and an hour of rest: this is useful for Sick Days when I’m starting to get frustrated but know I need to be careful, so I start myself gently. On Rest:Do Days, I change the ratio during the day, so I might start with a Rest:Do cycle of 20:10 minutes, and switch to 50:10 as the day progresses, because I am getting fatigued.

What’s the difference between Resting and Doing?

To get the full benefit, it is worth thinking about this. It is confusing because both resting and doing involve doing something. Sometimes to rest, I will be sitting in a chair apparently completely inactive. Sometimes I go to sleep. But the difference between Rest:Do Days and Sick Days is that I choose to go to sleep. On Sick Days I am too ill to make active decisions. On a Rest:Do Day, I will make a decision that in this cycle of resting and doing, I am going to go to sleep for a rest. Or that I am going to sit in a chair for a while, get control of my breathing and watch the birds/flowers in the garden. Or think about what I have been doing and what I’d like to do next.

Similarly, in the Do part of the cycle, I might be doing something impressive such as sorting out the recycling for collection, but I might also be reading a book. Reading is interesting: it could be Resting or it could be Doing. It depends on how fatigued I am, what the book is and why I’m reading it. So Doing is not about movement, but activity: doing something purposeful. I try and move because I like to and I feel better for it, but the purpose is not to move. It is to experience satisfaction in getting things done despite considerable challenges, without exhausting myself.

As I come to the end of my rest, I think about what I’m going to do. Sometimes this is easy: I have to go to the toilet, take my medication and get a drink. That will take up the time I’ve allowed for doing. I wanted to make soup the other day and I did it in several cycles:

  1. REST: have a snooze, then decide which recipe and remember where the book is
  2. DO: find the book, read it, leave on table (plus take medication, get drink)
  3. REST: sit and drink, message friends
  4. DO: get all the ingredients and utensils out (go to toilet, put cup in dishwasher)
  5. REST: sit and breathe, maybe crochet or snooze
  6. DO: prepare the vegetables
  7. REST: sit and sweat! The joys of prednisolone…
  8. DO: start cooking (maybe put a podcast on, feeling reckless)
  9. REST: sitting stirring the soup and listening to the podcast (maybe)
  10. DO: get bowl, spoon, plate, bread ready for eating (clear table of other stuff)
  11. REST: sit, talk to the dog (less tiring than talking with people)
  12. DO: eat soup, yum. In silence. Sometimes I feel like I’m living in a monastery.

Some more details

Why not just buy soup? Why bother with all this? Of course, that would be much easier. It would be even easier to live in a hotel and have room service, with staff bringing me soup in bed. But this isn’t about making life easier in that sense, in doing less, it’s about doing more, so I feel more satisfied and powerful. In that sense, rest is as important as doing: I’m deciding what I’m going to do. Before I got the hang of this I would do too much and then collapse in a heap, feeling despairing and hopeless. Sometimes I still do that, but as soon as I can I invoke Rest:Do and I feel in control again.

To keep that sense of control, I have a basket of things to do when I’m resting. That’s where my current crochet project is stored, plus my ipod and headphones, a magazine, some handcream, a book. I don’t watch much TV because it hurts my eyes, but I listen to the radio, audiobooks and podcasts. If I’m resting and I’m out, I watch what’s happening around me, enjoying details and little dramas. If it gets too noisy and I’m beginning to feel fatigued, then I’ll take my hearing aids out, put my headphones in to muffle the noise, get absorbed in my phone and maybe move somewhere quieter. I try to choose spots to rest where it is going to be quiet, but that’s not always possible.

When I’m planning what to do, I try not to plan too much. If my mind is racing (another unwelcome side effect, but sometimes just my enthusiasm surfacing because I know it could be a good day), this is very important. I limit myself to three things to do. To get control of my thoughts, sometimes the three things have to begin with the same letter, such as get Drink, feed Dog, take Domperidone (one of my drugs). Then I can mutter to myself Drink-Dog-Domperidone, to keep focused. I wanted to plant 12 new plants in my garden, so I counted them to make sure I’d got them all (1), put them in position (2), then started with the biggest one and did them in batches of three (3-6), then put my tools away (7). That took seven short Rest:Do cycles of about 5:5 minutes, with long rests at the beginning and end.

I use my phone timer if I need to be in firm control of the Rest:Do cycles because my mind is racing or I feel daunted by what I’ve got to do. Sometimes I start by using my phone timer and then I get into a rhythm and I don’t need to. I tend to set my timer for Rest, to make sure I Rest long enough. Usually I know when I’ve had enough of doing, because of pain or getting brain fog. My phone is packed with alarms for my drug regime, which is particularly complicated, so I can synchronise my Rest:Do cycles. I prefer not to be clock-watching, so will make a decision about how long to rest using other cues, such as how much crochet to do. 15 and 30 minute radio programmes and podcasts are great. The point is to be in control, to make decisions in advance.

Why Rest:Do Days work

I have systemic vasculitis: any small or medium blood vessel in my body can become inflamed, causing pain. Rest:Do days have become a way of taking control. I think that’s why they work for me. I’m focused on what I’m doing and how I’m doing it. This is an occupational focus. It’s different to focusing on my feelings and thoughts (psychological), on managing my bodily symptoms (physical) or on the situation I’m living in (social). It’s a combination of all of those things. Some would suggest it’s a biopsychosocial focus, but I think it’s more than that. It’s simpler and more complex at the same time: more than the sum of the parts.

Historically, people have always categorised what they do: often there’s a moral judgement (good/bad things to do) or a social expectation (things children do v things older people do). When people are sick, there’s a focus on doing things that make you better, and things that don’t. One of the most frustrating things about my vasculitis was that it didn’t matter what I did: I could not stop the vasculitis. Early on, I discovered that rest helped significantly with pain, but this was an all out, not moving, kind of rest. I was disconcerted by that. As an occupational therapist, I felt my theories had let me down. I believed that survival was all about what we do, yet I had been reduced to taking pills and sleeping to survive, and still the disease marched on. When the prednisolone and chemotherapy started to work, I found I could not do things like I used to.

Many people have tried to categorise occupations or activities. You’ll see it now in efforts to promote more activity to reduce obesity: there are different categories of “exercise” with some rather patronisingly saying that even housework counts (although not so much of course). This simplistic way of viewing occupations is very irritating to occupational therapists, who analyse what people do in great detail to understand the difficulties. Yet they too have shortcuts and categories, such as self-care, productivity and leisure, to make the job easier. I rejected those categories long ago as gendered and neoliberal, but that’s another story. I’ve been very influenced by the work of Wilcock (2006) and her distinction between activity and rest. It underpins my Rest:Do Days. Rest is restoring and refreshing, preparing you for the next activity. Activities can also be refreshing, because of the sense of achievement, but also draining, because you’re making active use of many of your capacities. So the distinctions are in the purpose and the qualities of the occupations, or what you do: it’s what you’re trying to achieve (function) and how you’re doing it (form) that is important.

Let me know what you think about all this: I’m very interested to know.

http://www.vasculitis.org.uk/about-vasculitis

Wilcock A (2006) An occupational perspective of health. 2nd edition. Slack: Thoroughfare, NJ. (there is a later edition of this book, but this is the one I know best).

 

 

The inflamed mind: book review

The Inflamed Mind is about depression and inflammation, written by Ed Bullmore, a research psychiatrist interested in immuno-psychiatry. I found it accessible and intriguing, raising many questions about how and why people with chronic illness experience mental health issues. There’s a careful analysis of how the split between body and mind, or physical and mental health, is particularly unhelpful for understanding the effects of the immune system, which are described clearly. Paying attention to the impact of the inflammatory action of the immune system could open the door to new approaches, for mental health problems which are resistant to other forms of treatment.

And that’s where it was less clear: for me, the treatment of inflammation has been brutal and I wondered at what point psychiatrists would decide immuno-suppressive treatment would be necessary for someone with depression. There was no mention of prednisolone. This is commonly used to reduce inflammation, yet many people experience long term mental health side effects. Towards the end of the book, Bullmore is careful to reject the idea of a panacea, suggesting this fuels divisions and masks complexity. He aligns his argument with individualised or personalised medicine. He points out that guidelines are great for emergencies, first aid and common ailments, but are not sufficiently sophisticated for targeting issues arising from complex, chronic health conditions. Thus immunotherapy might be for some people with depression, in some circumstances. I wished he’d been more targeted himself, perhaps on people with autoimmune conditions like me.

The focus on Cartesian dualism (body/mind split) interested me as an occupational therapist, for dividing health services according to body systems causes problems for my profession with our functional focus. Bullmore points out how mental health service users struggle to get good treatment for all their health problems, because a psychiatric diagnosis overshadows everything else. In that sense, his book is radical: routine blood tests for inflammatory markers might broaden the focus of routine practice in psychiatry. But only if there’s acceptable treatment to offer when markers are raised, surely?

Bullmore’s critique of the pharmaceutical industry is fascinating, useful for understanding how Prozac came to be so successful and why nothing has matched it since. It’s frustrating that there’s just two approaches to depression considered (Freud/psychotherapy and drugs), and only a very brief passing acknowledgement of injustice and inequality. But a more detailed analysis of the causes of depression, and different approaches, would have resulted in a longer, more complicated book. As I read it, I thought of another book which takes a more neutral stance but offers some equally fascinating insights which transcend the body/mind split (Enders 2015) and wondered what might be written next. I will be watching with interest.

Bullmore E (2018) The inflamed mind. London: Short Books.

Enders G (2015) Gut: The Inside Story of Our Body’s Most Underrated Organ. London: Scribe Publications.

 

 

Mrs Clucas and Peggy’s Revenge

A few years ago in a lecture, I used the film Belleville Rendez-vous (Chomet 2003) to make the point, among others, that what we do shapes our bodies. The cyclist in the film is almost like an insect, with huge limb segments (thighs) built up to take him through the Tour de France. I still do not know what I have been doing, if anything, to make my immune system so mutinous and murderous. But I was intrigued by a recent CT scan, done to explore my current breathing difficulties, which showed two of my thoracic spine vertebrae had started to crumble: wedge compression fractures. Another gift from the wonder drug prednisolone, maybe? Or a jolt from the past, preventing nostalgia for supposedly happier times? Spending so much time in hospitals made it easy to think what one of the jolts might be, but the other? What about that?

I have thought about Peggy on and off since 1984, whenever my upper back has echoed our encounter. I have also been intrigued by the cultural tendency to define and categorise people, like superheroes with superpowers. Peggy’s superpower would have been petulance, being unpredictable with an emotional overlay that made us all wary of her. In an institutional setting, this was possibly a helpful strategy but I can’t think that she knew what she was doing. She was unable to stand without two people helping her, one on each side, spending her final days on a long stay hospital ward without really knowing how soon the end would be. In contrast, I was new enough on the ward to notice its smell when I entered, but swiftly and sufficiently institutionalised to know how long I intended to stay each time I went there. I worked with two occupational therapy assistants to do washing and dressing practice: where rehabilitation started each day with us painstakingly encouraging weary older people to get dressed. With Peggy, one challenge was getting her knickers on. Some days she would help us as we supported her to stand, reaching down to pull her knickers up the last few inches of an upper thigh. Other days she didn’t. One such day she appeared to be stuck in her wheelchair, so we wheeled her over to the wall, in the hope that the hand rail on the wall would inspire her with confidence, as we had clearly failed. Our lifting technique involved counting to three and heaving. Suddenly Peggy decided to help, propelled herself forward and banged her head on the wall in front. My back seized in response, Peggy’s revenge.

When I saw the doctor in occupational health, I told him about Mrs Clucas, whose superpowers would have been the eyesight of an eagle and the organisational capacity of a head ant, if there is such a thing. Being a school teacher in the 1970s, she would have needed at least two superpowers. For some reason one week, we could not have our needlework lesson in the usual classroom, with its high ceilings and wide smooth tables. Or even in the classroom next door which smelt of chalk, a smell which could be enhanced by sniffing the curious triangular piece of tailor’s chalk, a mandatory item in our needlework kit. We were in a classroom downstairs in our usual state of fear, waiting for Mrs Clucas to organise us before criticising our stitching, no matter how far away we tried to sit. Like ants, soon we were segregated, and I was in a patient little group who had to go upstairs and fetch the sewing machines, which were heavy and awkward to carry. Later, at home, I complained that my back hurt and my father furiously wrote to the headmistress, complaining. We never went in that classroom again, but my needlework was never right for Mrs Clucas.

Now I wake up, consider my pain relief options, recall the CT scan image of my spine, and remember Mrs Clucas and Peggy. Feeling powerless to put my body right, mulling over who was powerful back then. Could it have been different? Of course, with legislation on moving and handling still to come, bringing technicians and hoists. But in other ways, maybe not. Negotiations lack subtlety when options are restricted: my body is evidence of that.

Chomet S (2003) Belleville Rendez-vous/Les Triplettes de Belleville. France: Les Armateurs.

Using social media for support

Using online social media, to give and receive support, has evolved for me through a disorientating real world journey of ill-health which has thrown into question every aspect of my life. My online life has evolved as my needs and networks have changed. This blog is an exploration, a glimpse back over my shoulder and a glance at the maps.

A year ago, when things were beginning to get very confusing, I was using email, Twitter, text messaging, Instagram and Facebook. Since then I have added Whatsapp, Facebook forums and Facebook messenger to this list. My joints and eyes were the initial targets for my disease (granulomatosis with polyangiitis, GPA, a form of vasculitis). This made using screens and keyboards challenging so I varied which device I used, and kept sessions short, important because of the systemic effects of the disease which made me very tired. But I didn’t know then what was wrong: all I knew was my world was rapidly becoming restricted. This made Facebook particularly irritating. Photographs of people enjoying holidays and nights out became difficult to take in. I’d always restricted Facebook and now I moved the icon to a different window so I had to decisively swipe to see it.

At work, the volume of email was an issue. When I returned to work after sick leave, I did a massive session of unsubscribing which was very satisfying. Now, to further reduce the volume of email, I ring people up if I can’t see them in person. I use the online calendar for scheduling meetings. Email is slowly reducing to being a tool for sharing information and confirming what has been agreed. At home I send an information email out to friends and family every few weeks, and enjoy the responses. I speak to people on the phone when I can as it feels more supportive, using my headphones when my joints are bad.

I had to decide how to disclose my diagnosis online. I had been using Twitter to share my experiences of the different clinics and tests, and continued this. As a health professional, I had many conflicting feelings about receiving NHS services, especially when I felt vulnerable and unwell. But I haven’t put my illness life on Instagram – there may well be a community there, but I like Instagram as a kind of online soothing and intriguing gallery. I decided to share my news on Facebook to reach friends and family who did not use other social media. My daughter suggested posting a nice photograph alongside my news, so that people could “like” my post without appearing to like the fact I was sharing bad news.

I searched on Facebook for a specific forum for my disease, which is also known as Wegener’s Granulomatosis. The disease is rare and I had never encountered anyone else with it, so it was fascinating to meet others. But then it became quite frightening. Many members were based in the USA and I realised their experiences were particularly difficult because of the healthcare system there. It was also a very lightly moderated forum and some of the information shared seemed inappropriate. Slowly I switched my allegiance to the Vasculitis UK Facebook forum, which is much more actively moderated. There are still scary stories and it can be upsetting to hear of people’s struggles, but it is somewhere I can be open about my experiences knowing people will understand. I am learning so much too: partly from being prompted to retrace my steps through the information I have been given by my consultant, as slowly the realities sink in.

2017-04-28 12.01.14Most recently I’ve been using Facebook messenger, encouraged by local friends who I actually see in person. Yes, more real people! It is a bit like Whatsapp to me which I find very useful. Initially my children got me to use Whatsapp to organise arrangements for my chemotherapy sessions. My work colleagues were an extraordinary support via Whataspp for those sessions, posting photographs and messages throughout the long days. Again, photographs were particularly helpful: one close friend posted simple images of flowers in her garden which were a welcome distraction in the infusion ward. In return I posted short films capturing the strange sounds and sights of the ward, carefully avoiding people and focusing on the infusion machines. It’s bad enough being there without having other people taking photos of you!

In the early days I restricted my screen time,  so I asked people to send me cards in the post with their news and these cards are very special to me. To see a card on my doormat is a particular joy: I can’t wait to see who it is from. Now I am back at work I have less time to respond, but for a while making cards and writing responses became a useful thing to do. The cards also seem to be a way for people to say things they might not say on social media: really helpful personal messages urging me to keep strong and to keep going. Sometimes I really need to hear that.

I continue to receive much support from a wide network. It’s essential. But it’s also essential for me to be able to give support, too. I resent the idea that this could be reduced to a transaction or exchange: it’s more complicated. My neighbour, who has been walking my dog for me, told me she did not expect anything in return: she was going out with her dog anyway. Many people had supported her in the past, through difficult times, without expectation of her returning the favour. Pass it on, she said. But I have been enjoying exploring how I can support her, as a friend and neighbour, and sustain our connection. For the online communities I belong to, I hope there is a similar process going on: it’s more difficult to tell, but I look out for the signs. Maybe we could be more aware of these supportive aspects of online social media.

 

The PhD: my next stage as an occupational therapy researcher — Living in a glasshouse

In the previous two blog posts, I described how research slowly infiltrated my working life to the extent that, for a short while, I was doing little else. This next stage is about how research took over, which was not as bad as it sounds. There were concerned enquiries about my “work-life” balance, enquiries I dismissed conceptually […]

via The PhD: my next stage as an occupational therapy researcher — Living in a glasshouse

How I’ve done occupational therapy research: early days

I have been following #OTalk Twitter discussions about research and reflecting on my own experiences. This blog is the first in a short series, reflecting on my story of being an occupational therapist and a researcher, starting with the early days of my career.

It’s over thirty years since I approached the hospital library and asked for help, to find publications to shape my practice. At that time I worked in a hospital where teaching and research were evident in the constant presence and promotion of students, seminars, short courses, lectures and conferences. My request for time to find relevant publications, and read them, was welcomed and encouraged. Our workload was so great we could not hope to cover it: it was recognised that we did what we could, paying careful attention to what we were doing, so our practice could develop in a way that was consistent and informed. We constantly made difficult decisions about who we worked with, being such a scarce resource, which had to be justified. Many people missed out, because there was just not enough money to fund enough occupational therapy or people to fill vacant posts. Sounds familiar? It’s hard to give research priority but the institutional environment was helpful in this setting.

From 1987-1990, my research took a form which might be considered unconventional now, as it emerged from my developing practice rather than a protocol subject to institutional approvals (Bryant 1991). Ethical approval was not a formalised process, because it was assumed that ethical conduct was part of everyday practices. This is, of course, a questionable assumption, especially in the context of inpatient mental health services for older people, which in those days included continuing care with very low staffing levels in old Victorian wards (Brindle 2013). As a researcher, I gathered and worked with varied data, or information: from my own professional practice; the research and practice of others reported in articles and books; and continuing reflections on what I did and what I read. In joint work with colleagues, the ideas evolved and started to synthesise. We presented them at conferences and workshops, which provided further information about possible applications elsewhere. I believe the research was as collaborative as our professional practice was: we worked together to try and understand the challenges faced in the hospital, sharing our different perspectives. Some of the questions that drove the inquiry and innovation reflected my own interests, while others were being explored by my colleagues.

The hardest part was the effort to publish the findings (Bryant 1991). A number of things helped. I had moved to another job in another setting, miles away, so the research had finished from my perspective and I could reflect on it. I really liked writing.  I knew people who had published in other fields, who encouraged and guided me. A colleague lent me her word processor. I went on maternity leave which gave me some time to get the final version refined, with more advice and guidance from experienced people including the reviewers of the first draft. Five years into my career as an occupational therapist, I was beginning to recognise my expertise which was a good and a bad thing. I had to work very hard to get into the right headspace where I could ask for advice and actually use it. Sometimes that was, and still is, just too much effort. That is why I really like collaborative research: it’s easier to exchange ideas and thoughts. I have learned how to get a balance between exploring my own ideas and working closely with others to take research forward.

So I was more organised with the next research project (Bryant 1995). I’d been involved in innovative practice from 1990-3 in a community mental health team: we developed sessional day services in places like arts centres, cafes and leisure centres. We could not find relevant literature to inform what we were doing, as the closure of the large asylums and the emergence of day services was ongoing. Later, for my PhD, I was able to find out more research articles relating to day services (Bryant 2011), but at the time we improvised, exploring community resources. After I left the team I wanted to explore what we had done. I created a simple multi method design and asked my boss if I could work some additional hours to do the research (I was part time). With an outline proposal and local ethical approval, I was given the go ahead and was even assigned a psychology student to help me. I implemented my research design, gathered the data and by my next maternity leave was once again refining a final version of an article publishing the findings (Bryant 1995). This makes it sound easy but it wasn’t. I was acutely aware of the limitations of my design and therefore the findings. For years afterwards I expected people to tell me their criticisms but it never happened. I assumed, probably wrongly, that the project was therefore irrelevant and forgotten. But I had enjoyed doing it and resolved that next time I did research, I’d make sure I got my MSc for my efforts.

Brindle D (2013) Why whistleblowers’ voices must continue to be heard. The Guardian. Wednesday 27th November 2013 https://www.theguardian.com/society/2013/nov/27/whistleblower-voices-heard-nhs-elderly-care-graham-pink (accessed 7th April 2017)

Bryant W (1991) Creative groupwork and the elderly mentally ill: a development of sensory integration therapy. British Journal of Occupational Therapy, 54(5): 187-192.

Bryant W (1995) The Social Contact Group: an example of long term group work in community mental health. British Journal of Occupational Therapy, 58(5): 214-18.

Bryant W (2011) Mental health day services in the UK from 1946 to 1995: an “untidy set of services”. British Journal of Occupational Therapy, 74 (12) 554-561

 

The PhD: my next stage as an occupational therapy researcher

In the previous two blog posts, I described how research slowly infiltrated my working life to the extent that, for a short while, I was doing little else. This next stage is about how research took over, which was not as bad as it sounds. There were concerned enquiries about my “work-life” balance, enquiries I dismissed conceptually as much as anything else, for until then I had never felt more alive at work than when I did my PhD. I had resolved to delay it until my daughter started secondary school, but the new local mental health day services manager approached the university following the previous research (Bryant et al 2004, 2005). She was setting up a forum for service users and staff and could we, the researchers, be involved? I joined the first forum meeting as a guest. I was aware of the limited conclusions we had drawn from the previous research, as the data were gathered from focus groups, focused on evaluation of existing services. How could collaboration with service users and staff delivering services (not strategic leaders) shape a research design and take findings forward in cycles, exploring and reflecting? This meant doing participatory action research.

There is a tension between participatory action research and formal approval processes: it is easier to get approval for designs that are well defined and constructed, but in participatory research, design is part of the research process (Banks et al 2013). There are many ethical issues to consider when doing participatory research within mental health services. At the time, it worked best to refine the design before obtaining approval, but since then I have supervised similar projects where researchers have gained provisional approval to get started and I think this is advisable. To give an idea of timescales, I attended the first forum meeting in summer 2003, registered for my PhD and got my honorary contract by spring 2004, and had the design agreed and all my formal approvals in place by Autumn 2005. The main data gathering took place from late in 2005 to spring 2007, and then I spent a year writing up. My viva was in July 2008. And yes, it was a part time PhD. As a lecturer, I was nominally allowed one day a week for research and scholarship, which included gathering information for teaching. There were benefits in working with colleagues who had also been through PhDs, and in having time to discuss my ideas with them and with students.

Being a PhD student is a bit special in some people’s eyes, but not everyone’s, and I enjoyed exploring the insider/outsider dynamic as I progressed. I was an occupational therapist who had worked in day services but was now an academic; a mum who had a book on critical ethnography to read while my children had swimming lessons; as a person who had never experienced severe mental health problems but had a PhD turning point after a serious car accident. Initially I struggled to know what was important or relevant. I did not know how to pace myself or manage the routine of supervision, even though I had been supervised as a clinician for years. I really enjoyed gathering the data but getting to grips with the findings was more challenging. In the final months of writing up, it felt like my PhD took over every part of my life which did not involve essential self care for me and the children, or my day job. Right at the end, I went to stay with my parents and spent the weekend eating and sleeping on their sofa, just like a stereotypical student. I would have brought the laundry too, if I could have got organised.

But it was the best thing, doing a PhD. I am envious of occupational therapists now who have the opportunity much earlier in their careers. I relish supervising people through PhDs: it is such a privilege to be able to focus on research, even when balanced with the rest of life. You can read about what I researched in the publications listed below, and in the next blog I’ll explain how the themes of my PhD led to my postdoctoral research.

Banks S, Armstrong A, Carter K, Graham H, Hayward P, Henry A, Holland T, Holmes C, Lee A, McNulty A, Moore N, Nayling N, Stokoe A & Strachan A (2013) Everyday ethics in
community-based participatory research, Contemporary Social Science, 8:3, 263-277

Bryant W (2011) Mental health day services in the UK from 1946 to 1995: an “untidy set of services”. British Journal of Occupational Therapy, 74 (12) 554-561

Bryant W, Tibbs A, Clark J (2011) Visualising a safe space:  the perspective of people using mental health day services. Disability and Society 26  (5) 611-628.

Bryant W, Vacher G, Beresford P, McKay E (2010) The modernisation of mental health day services: participatory action research exploring social networking. Mental Health Review Journal 15 (3), 11-21

Bryant W, Craik C, McKay EA (2005) Perspectives of day and accommodation services for people with enduring mental illness Journal of Mental Health 14(2): 109-120

Bryant W, Craik C, McKay E (2004) Living in a glass house: exploring occupational alienation. Canadian Journal of Occupational Therapy. 71(5):  282-289.

How I’ve done occupational therapy research: becoming an academic

I’ve been following the #OTalk discussions about research with interest. This is the second in a short series of blogs reflecting on my own experience. It is about the transition to being an academic, from doing research alongside the day job of providing occupational therapy. Studying for my MSc Occupational Therapy made this transition possible and gave me another experience of doing research in mental health day services. The MSc refreshed and formally introduced me to occupational science and professional reasoning. As well as my part-time work in social care, I was soon working regularly as a sessional lecturer, discovering the complexities of pre-registration occupational therapy education. That is a separate career change which I will not focus on here.

I was very keen to focus my MSc research on social care. However in a session about funding for research, we were shown a real life example, a letter inviting a tender to evaluate local mental health day and accommodation services using focus groups. I did not hesitate: as soon as the session ended, I announced that I wanted to do this research as it involved mental health service users and built on my previous research. A swift and positive response from my lecturers got the project going. They won the tender in March 2002 and soon got university and NHS ethical approval, which was a quick process in those days. I was appointed as research assistant. Recruitment and data gathering via the twelve focus groups took place in May. We had funds for a transcriber and as she sent the transcripts through, I reviewed them. I had completed the data analysis by September and wrote up two reports on the findings (later published as Bryant et al 2005). In October, for my MSc dissertation, I returned to the data from the four service user focus groups on day services for further analysis. Some ideas about occupational alienation and living in a glasshouse emerged, which shaped my dissertation (Bryant et al 2004). I handed it in just before Christmas, exhilarated and exhausted.

That project had many aspects which were easier because of the hard work and commitment of everyone involved. The local occupational therapy manager had secured the support of her senior colleagues to fund an independent evaluation, seeing this as an essential step for developing and improving the services. The local partnerships were well-established, making practical arrangements easier. The formal approach to the university and the funding made it possible for a small university team to be formed, consisting of Christine Craik, Elizabeth McKay and me. We worked closely together, sorting out the details of the project and negotiating with the funders before gathering the data. Our team work lasted well beyond the project, as we co-authored two articles  (Bryant et al 2004, 2005) and collaborated on further research. We were also all very experienced in working in mental health settings, which informed our decisions for setting up and facilitating the focus groups. We carefully structured how to work together, but also had fun discussing which stars would be involved in our story in “Focus Groups: The Movie”.

I gave up my part-time job as an occupational therapist which felt a very significant decision, although by that time I was also doing sessional teaching at the university and other projects elsewhere. The timescale was so intense that I felt really stressed. Now, having supervised many MSc and PhD students, I’m not surprised when others experience this, but at the time I was disorientated. I probably didn’t recognise the impact of being a novice researcher. The sense of responsibility was overwhelming, not just to meet the deadlines but to try and do something worthwhile with the data. The voices in the data were potentially more powerful than those of the people I’d worked with for so many years.

Analysing the focus group transcripts as qualitative data was initially challenging as it was difficult to know where to start. I hadn’t really been convinced by the pseudoscientific approaches offered in some of the textbooks which emphasised structures for analysis. But I loved David Silverman’s work: his writing suggests how doubts can be used creatively to think and make decisions, which can be constantly revised and revisited (Silverman 2013). This helped me see that as an artist and as an occupational therapist, the process of analysis was familiar as the creative process itself: scrutinising, coding, decoding, making links, synthesising, testing, resynthesising. I taught myself to use N6, an early version of NVivo, a qualitative data analysis software tool, so I could streamline the process initially.

Looking back now, I wonder how I did it. My children were primary school age and my husband worked away from home a lot. We had one computer and a dial up modem connection. We had spent savings on a laptop for me, an expensive purchase in those days. It felt like I had to keep the MSc firmly in its place, to minimise the impact on family life, but still my daughter came to me saying her feet were really hurting when she had outgrown her shoes and I had not noticed. I thought about occupational alienation when sitting in different school halls, choosing a secondary school for my son. I wondered about day services and where things were heading, but had no idea that my next step in research would be focused on this.

Bryant W, Craik C, McKay E (2004) Living in a glass house: exploring occupational alienation. Canadian Journal of Occupational Therapy. 71(5):  282-289

Bryant W, Craik C, McKay EA (2005) Perspectives of day and accommodation services for people with enduring mental illness Journal of Mental Health 14(2): 109-120

Silverman D (2013) Doing qualitative research. A practical handbook. 4th edition. London: SAGE Publications (I used an earlier edition).

Some useful advice on choosing a software package like NVivo is available from here http://www.surrey.ac.uk/sociology/research/researchcentres/caqdas/support/choosing/