Working With Chronic Illness

2014-07-09 11.58.19On average I’m meant to work 4 hours a day, 4 days a week, every other week.  It’s a carefully crafted working pattern designed to reduce stress and break up my working time to stop me being drawn into time critical work commitments and exposed to too much stress.  In many ways I am my own worst enemy at work because I love the challenge, I get excited about solving problems and get too drawn in, too engaged.  This is great for a few weeks and then the pain and fatigue start to build up, I start needing pain killers every day, the migraines come back.  My sleep starts to suffer, the pain gets worse, the migraines get worse and then I crash with massive pain, crushing fatigue and brain fog.  Weeks or months later I gradually work my way back to health and repeat the cycle. During the weeks that I’m suffering I do almost no work which makes it hard to keep on top of key events, more depressing when I’m off work and more stressful when I do finally get back to work.

It’s taken years to figure out how to stop myself being drawn into work in this way and to provide enough breaks and rest and recovery time to keep me on an even keel.  I still seem to get as many flares as I ever did, but with this working pattern they are short and I work my way back to health within a few days instead of weeks or months.  It’s been much better, my life is in balance.

The insights that led to this work pattern were:

    1. It takes a lot of willpower, time and energy to do the things that I need in order to do the things that help me live well, that willpower, time and energy needs to come from somewhere
    2. I need to work with a small number of people that I know, people who respect me and value my contribution but also understand and can live with my limitations
    3. Work almost always brings with it stress, the less time I work the less stress, the less stress the lower the pain and the better the sleep, the better the sleep the less pain ….
    4. Although pain in and of itself doesn’t stop me working, it wears me down, pushing through the pain works for a while, but in the end it catches up with me
    5. Failing people or looking stupid and worrying about both is very stressful in it’s own right.  When I do time critical work, an important presentation, a key report, then there’s a 20-30% chance that I will do it badly or not be able to do it at all.  I worry about this and the worry makes my health worse.  There’s little worse than trying to deliver a presentation when you can hardly think straight, can’t remember what you wanted to say and can’t talk coherently.  You wouldn’t believe how long it sometimes takes to write these blog posts, the number of re-reads and re-writes needed and even then I don’t catch all the mistakes!
    6. I am much healthier when I have plenty of time in motion, working half days means I get to alternate an hour of sitting and an hour of moving for most of the day.  Doing my moving mostly in the morning is important as I fatigue quickly and by late afternoon I am getting very weary no matter what I’ve been doing
    7. Getting drawn into time critical work is the biggest risk to my health, it’s stressful and hard to disengage from, but it’s also such great fun.  It’s hard for others to pull me in and for me to draw myself in when I have an irregular work pattern.  My fragmented work pattern pretty much guarantees that I only work on non-time critical activities
    8. Flares creep up on me, once a negative cycle starts each day I am a little bit worse, but I push that aside when I am engaged in work and just pop the pills, that works for a while, until it doesn’t.  Forcing the 3 day weekend and the alternate week breaks into my schedule prevent this creeping pattern
    9. If I do the right kind of work there’s little correlation between the hours that I work and the value that I provide
    10. Any kind of ‘work’ counts, if it involves some combination of  immobility, stress and intensity.  So hiking too much, sitting by my daughters hospital bed for 2 days or watching an entire series of 24 over a weekend are all equally as bad as spending a week writing a difficult report.
    11. Even with all this careful work design, I don’t expect to be able to work until I’m 67 so I am gradually learning how to fill my time with fulfilling non-work activities, when I stop working this means that I’ve reduced the risk of a big bang transition going badly

    By far the biggest challenge in my working life has been on how to respond to the good days.  When I feel good I want to work, I make progress, I get excited by that progress and others recognise it.  I draw more work to me and get drawn into that work and it’s very rewarding.  Feeling good is euphoric (especially when I’m used to feeling bad) and I tend to over-commit myself, at the time I find it hard to remind myself of the risk, until the crash comes and I feel stupid. 

    The critical insight though I’ve saved for last:

    The most important thing is to remember that I am chronically ill, even when I feel good.  On the good days I need to focus on building up my physical and mental reserves, not on burning them up!  When the bad days come around again, as they always do, I will be stronger.  This is the key lesson that the last 10 years have taught me.

    There are dozens of subtle elements to my work style that help me maximise business value and maximise health, but one is key:

    Working alternate weeks has been the breakthrough strategy.  One of those weeks is holiday (I buy extra days from my employer) and is a complete break from work, the other week is a ‘think week’ a time for rest, study and reflection.  This think week is of value to my work, although to be honest I probably have just as many good ideas while on holiday.  It’s the alternate week pattern that maximises my recovery time, helps me build my resilience, stops me getting too engaged in work and provides a rhythm to my life that used to be so unpredictable.

    There are some major challenges and frustrations with this working pattern though.  If you add up the total hours that I’m working and divide by the number of weeks in the year it averages out at 8 hours a week, once you subtract from that the stupid emails, mandatory briefings, time sheets and other routine admin we are talking about 7 hours a week.

    To do something useful in 7 hours I need to be very disciplined and do only very specific types of work:

    1. Coaching — is probably the best type of work.  It’s not time critical, it provides the person being coached with a different perspective, it’s a way of leveraging my many years of experience and the insights and ideas from all the research I do
    2. Reviewing – comes a close second, especially reviewing things early in the lifecycle, when it’s possible to shape outcomes without too much time commitment
    3. Challenging – as I’m using it here challenging means providing an alternative viewpoint.  I normally do this by developing my own independent view of the answer to a problem from first principles.  This alternative view can be especially useful because it’s been created without the influences of conventional company wisdom and group think

    All of these activities though have their downside, they provide an ‘outside in’ perspective, which is not always welcomed by those receiving it and I’m often doing it based on very little knowledge of the thousands of hours of careful work that have gone on behind the scenes of the projects that I’m reviewing or challenging.  This outside-in work can be a bit isolating and lonely and I greatly miss working closely with a high performance team day in day out.

    It’s been a long process of discovery, but as this progress report shows, I’ve come a long way.

    In closing despite all the carefully designed ‘safe guarding’ that I’ve designed into my life sometimes it’s important to just say ‘sod it’, I will attend that 4 day conference, I will host that 2 day workshop, I will do that 12 mile hike and live with the consequences later, just not often.

    The photo is of a tarn just to the south of Windermere town,  I took this photo a week after a bad flare, my pain mostly dissipated.  So I was working on my physical fitness and listening to a great business book “The Hard Thing About Hard Things” a title that inspired this post.

    For reference I have Adult Onset Still Disease, Reactive Arthritis, Secondary Fibromyalgia and Hay Fever, sometimes it’s the Hay Fever and heat in summer that’s the last straw!

Steve Richards

I'm retired from work as a business and IT strategist. now I'm travelling, hiking, cycling, swimming, reading, gardening, learning, writing this blog and generally enjoying good times with friends and family

2 Responses

  1. September 18, 2014

    […] Keeping working.  I found it very difficult to keep working at first and I still have a few days a month when I’m ready to quit.  No matter how hard it it though work provides purpose, social contact and finances that are hard to obtain in other ways.  I’m pleased that I kept working. […]

  2. September 23, 2014

    […] though I only do traditional ‘work’ for 4 hours a day my life is still packed full of activity, often too much activity!  Over the years I’ve […]

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