I have recently been reading about Dave Pollard’s very focused attempts at using self experimentation to challenge his Colitis, so I thought it was probably time to provide an update on my progress challenging Arthritis.
First off, my form of Arthritis is a rare one, Adult Onset Stills Disease, which about 1 in 200,000 people suffer from. Untreated it manifests as raging fevers (103+), severe widespread muscle and joint pain, fatigue, lack of concentration etc. During a flare it’s impossible to do anything, except maybe watch a little TV, read a few pages and try to sleep. The pain is too bad to eat, so I also lose a lot of weight.
Fortunately it does respond to conventional treatment, in my case Steroids during a flare, Methotrextate to damp down the immune system between flares, Amitryptiline to damp down the daily pain and help me sleep and various pain killers during the day as required.
So thanks to the meds described above I am reasonably ok, I am left with the following symptoms:
- Widespread pain in my joints, that’s worst in my feet, ankles, knees, shoulders, elbows, wrists and fingers
- More localized pain in my tendons/muscles, that’s worst in my feet, Achilles tendon, forearm, fingers and jaw
- Migraines 2 or 3 times a week and headaches most days
- Very poor concentration and memory
- I catch infections easily and don’t show many traditional symptoms for a while. When I eventually do I feel pretty bad and my Stills symptoms flare
Psychologically I sometimes also get a bit depressed, normally when I get worse after a few good days, it normally takes me a day or two to fully adjust, I also suffer from anxiety, I am told that the challenge of dealing with the symptoms above is quite enough for most people and that any additional stress triggers anxiety. For a “normal” person the level of stress that needs to accumulate before anxiety is much greater.
By December last year (2005) I had noticed that I was in slow decline, I was catching an infection every month which was triggering pretty bad symptoms for at least 2 weeks a month and it was taking me a week to get moving again.
So I was getting no more than 1 week a month of reasonable mobility and I was probably only doing quality work for 10 days a month. I was pretty worried and realized that if I didn’t do something significant I would gradually decline to the point where I had no good days at all.
So I set myself a new years challenge of getting back in control of my life so far as was possible, I started keeping a daily log where I recorded 5 things:
- My symptom level (25 factors)
- How well I had scored on doing all the stuff I new from the last 3 years helped me feel better ( 7 factors)
- How badly I had scored on doing all the stuff I new made me feel worse ( 3 factors)
- How many hours I had worked
I plotted these over time. Completing the spreadsheet every day takes a couple of minutes, but it forces me to review each day and try harder the next day.
I realized throughout January that I had slipped into a pretty bad pattern of behavior: See the diagram
To break the cycle I needed to find ways to combat the following:
- Catching infections
Pain was my number 1 issue, it sapped my energy and enthusiasm. I realized pretty early on that it was my attitude to pain that needed to change, so I got a book on pain management which was fairly useful, at least it got me thinking. Here are the steps I took:
- Every morning, no matter what the weather I go out walking (at least an hour) or swimming (20 mins). I trained myself to walk through the pain, the more it hurt the more determined I was to ignore it
- I meditate for at least 20 minutes a day. I sit cross legged, which hurts, after a few minutes meditating on the pain, I can ignore it and focus on my breathing
- I have improved my diet, whole grains, fruit, veg, chicken, seeds, dried fruit etc
- I have lost a stone in weight, that takes some pressure off my knees
- Every hour I break for 5 minutes
- Every evening I go out for another walk, usually for 30 minutes
- I do strength training 3-4 days a week, this really hurts and it makes my muscles ache, when my joints and muscles ache from Stills I imagine that it’s because of my strength training, which helps me create a positive association with the pain
- During weekends I will try and exercise for 1 hour in every 2 and sometimes more
This has been very successful, I have trained myself to no longer limp for example.
Next concentration, I am rarely able to concentrate for an hour, if I am reading I struggle to read more than 10 pages and I really struggle keeping real focus for more than a couple of minutes. I often fall asleep while reading and doze off on conference calls and my balance is terrible
- I avoid concentrated periods of activity, I read short articles every day for an hour, that’s nearly 10 working weeks of reading a year when you add it up. This means that when I get a new work activity I have probably read a good deal of information on it already, so I don’t have to spend a couple of days doing reading to get up to speed.
- I read in Cafes, they are noisy and there is a lot of energy, I have trained myself to focus despite the noise but the general buzz keeps me awake
- I take a range of medications (natural) that improve concentration and they seem to have a minor effect
- I have designed a highly productive computer workstation – using three screens – that makes it easier for me to keep track of different documents, web pages emails and conversations I am conducting over IM as I analyze or assemble information
- I watch DVD versions of tech conferences and other videos for about 1 hour each work day – again several weeks of intense conference activity smoothed out over the year
- I break up my day email – walking – reading – breakfast – reading – walking – computer – lunch – watching – computer – meditation – tea – walking – reading – computer – TV – computer
- I balance on walls, play on the kids toys in the park, balance on the trampoline and play on a wobble board while we watch TV
Concentration is an issue that I have definitely not made as much progress on as the pain, it’s not helped by the migraines and the Migraine meds and by the sleepy feeling in the mornings from the Amitryptiline, but I am doing well with balance
Fatigue. The fatigue can be really bad, as I have already described I often struggle to keep awake. I have no real solutions but I try to:
- Keep active
- Keep doing stimulating activities, and switch activities when I get stuck
- Jump on my trampoline every hour or so
- Pace myself
- Talk to people on the phone
- Do fun things, balancing on walls, playing with the kids, trampoline, running up sand dunes, watching fun TV
- I sleep always try and sleep from about 11:00 PM until 8:00AM, I have tried to sleep less, but to be honest I actually think I need 10 hours sleep now
Stress. I have done pretty well with the Stress:
- Plenty of sleep
- Learning to say no at work
- Not taking responsibility for important work deliverables, but helping people as much as I am able
- Trying to keep to no more than 4 hours of desk work a day
- having fun
Migraines. I have thought for about a year now that the Migraines are related to Methotrextate, they come on about 24-48 hours after I take them, so I have changed my Methotrextate time to Friday morning, because my weekend is more relaxing than a week day I tend to get fewer Migraines that way
To avoid infections I try not to:
- Travel on busy trains
- Go into busy offices
- Travel on international flights
- Travel on the London underground
- and all the other stuff listed above helps too
This has been a pretty successful.
Overall I have noticed a slow improvement over time, to maintain this improvement takes a lot of focus and energy every day. I have noticed that it’s very easy to slip into laziness and then I start to decline again, but keeping a daily record makes that less likely. I don’t think there is much more that I can do now, without pushing myself too hard and my goal is now to stabilize myself at this level, which allows me to do some (4 hours) quality work most days and maintain a reasonable quality of life.