My Sixth Blog Post: Visit From The Occupational Therapist

Over the last 11 years I had quite a few helpful meetings with my occupational therapist, this post documents the first visit, when I was full of optimism:

I had my first visit from an occupational therapist today.  I have been referred to her to assess the type of work I do and how that can best be adjusted to make it easier for me to cope.  She arrived 2 hours late and stayed for 4 hours.  The visit itself tired me out but it was very useful.  She helped me to see my condition in terms of its affect on my work, and the affect my work has on the condition.  The process she went through was enlightening, and should be useful.  Not surprisingly she has not worked with anyone with AOSD before but she says that the symptoms and affect on work are similar to those that people suffering from chronic fatigue go through.

She wants me to start an 8 week controlled trial, where I will work from home on well bounded tasks and keep lots of records.  For the first 4 weeks she wants me to increase from 20 hours a week to 37.5, my normal hours in gradual steps.

All in all 4 hours well spent.

It’s noteworthy that she came to my home and that she spent 4 hours in the first consultation, an experience that’s pretty unique among the medical profession.  I’m sure that if I’d had a quarter of this time with my consultant, and if he’d taken the same holistic approach to treating me, rather than just treating my blood tests, then the last 12 years would have been a bit easier.

Unfortunately although the approach my OT described was well thought through (focus on well bounded tasks) I rarely achieved this.  It’s not in my nature to work within bounds, I see issues and opportunities and I follow where they lead and they draw me in, engage me and frustrate me.  This ‘problem’ of becoming to engaged in my work, too committed to success has been a defining characteristic of my working life.  When I was healthy enough to cope it was great, but it’s totally incompatible with chronic illness.

Back to my OT, who was employed by my extended sick pay insurance company and so she was also highly motivated to get me back to working full time but I never managed to sustain this.  Several times over the last 11 years I did manage it, but always during a pain free period.  I’d be euphonic as a result of being pain free, full of energy and optimism, I’d over-commit and start taking on more responsibility and working more hours.  Gradually though the pain and fatigue would return, I’d keep working full time though by propping myself up on meds (lots of pain killers, Red Bull, sleeping tablets…) I’d keep struggling on, performance would slide and then I’d crash with a bad flare that would take months (sometimes years) to recover from. 

Gradually my occupational therapist recommended reducing my hours further, and then further still and eventually I settled into my one week on, one week off, afternoons only, working pattern which I managed to sustain for several years and it worked very well.  Unfortunately while this pattern was perfect for health, it wasn’t enough hours to sustain me in my job, gradually it became too difficult to keep up to date with all the changes in my company and the changes in the industry and do some useful work as well.  So I had two choices, work more hours and let my health suffer, or go full time sick, I chose to work more hours, and suffer I did.

There’s no easy solution unfortunately, even being permanently off sick would have it’s costs and provide no guarantee of avoiding flares and so I struggle on as best I can.

I wrote this post sitting in Caffe Nero Blackpool (pictured), which is a nice change for me from Lytham or St Annes.  I’m here because I plucked up the ‘courage’ to cycle here and it was hard work against the wind, and I’m exhausted from another difficult night with my itching, burning legs.  Anyway I made it and I feel great, especially because I’m anticipating ‘flying’ home.