Adventures in home working » AOSD

Concentration & Music

Steve Richards — Sun, 26 Nov 2006 23:34:00 +0000

When my Arthritis is flaring I really struggle to concentrate, I have tried a wide range of things to improve it including:

Meditation
Exercise
Work Variety
Stimulating work locations
Music
A couple of supplements that were recommended in “Making a good brain great“

I have made some progress, but not enough. Just by chance last week I was listening to music set to random and some meditation music started playing, I rapidly noticed that my concentration improved, particularly the time I could concentrate for increased any my typing speed nearly doubled. I was pretty shocked that music could have such a significant effect so I tried again a couple of days later and it worked. I am now planning to build it into my normal working practice.

The strange thing is that my Sister in Law bought me this music last Christmas because she knew I had started meditating, but at the time I didn’t meditate to music and in fact still don’t use this music so it had just languished on my hard drive and it certainly isn’t the sort of music I normally enjoy. However while I am working it seems to have a sort of hypnotic effect.

I had a quick look for the music online but failed to find it, however it sounds pretty much like this.

Challenging Arthritis

Steve Richards — Mon, 25 Sep 2006 02:58:00 +0000

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
Fatigue
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.

The Challenge

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

My approach

To break the cycle I needed to find ways to combat the following:

Pain
Concentration
Fatigue
Stress
Migraines
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:

Pacing
Meditation
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.

Health Update

Steve Richards — Tue, 15 Mar 2005 21:54:00 +0000

As readers of my blog know I suffer from Adult Onset Stills, a rare disease that affects 1 in about 200,000 people. Since my last major flare about 13 months ago a combination of Steroids and Immune System Suppresents have managed to get the primary inflammation under control leaving me with chronic pain and fatigue which varies from day to day. I cope pretty well with this by working from home etc, and its all well documented in this blog.

Right now I just slowly turning the corner after a couple of bad months, but the recovery is very slow and is going in fits and starts.

The graph shows the daily symptom levels for the last 6 months. However progress has been made as follows:

I have reduced my Prednisolone levels to 5mg, which is a safe level
I have increased my Methotrexate level to 15 mg and the 2 weekly blood tests are showing that I am tolerating it well, ie its not having a toxic affect. It has however given me migraine headaches every week that last about 48 hours.
Luckily my GP also gave me Amitriptyline 35mg for the pain, which also has a common side effect of reducing the intensity and frequency of my migraine. Although it’s not done much for the joint and muscle pain.
I have reduced my dependency on sleeping tablets as well to 5mg a day of Nitrazepam, I was struggling to get to sleep because the throbbing pain in my joints was keeping me awake, but that is not quite so bad now.
When I do get migraine I am now taking MigraMax which is a special formulation of Aspirin which I take as soon as a sense a migraine starting and so far it has worked like a dream.
I saw my specialist today and he wants me to also start to take Mobic, which is an anti-inflammatory drug, which he hopes will also help with the pain.

Overall I am feeling pretty positive and after having a couple of weeks off sick and a gradual return to work (4 hours a day on average now) I am hoping to get stuck into a new job within the next week or so. Hopefully the motivation of the new job will also help me work through the pain.

As always exercise continues to help, but its hard to motivate myself to do it when I hurt, so getting a new mobile media player for walking and swimming is a key investment to that end.

Working while you swim

Steve Richards — Sat, 08 Jan 2005 05:01:00 +0000

I have recently restarted swimming. It’s a great way to keep fit and it really helps ease my aching muscles and joints, but it’s really boring! I recently found the solution though. I purchased a waterproof MP3 player, that looks like this:

and it works by bone conduction of sound. When the device is placed on any bones of the skull (i.e. the cheek bones or the mastoid tip) it leads to vibration of the fluid in the inner ear. Thus I can enjoy clarity of sound with the SwiMP3 device that was never before possible. Jon mentions it in his blog as well.

At first I thought I would use it mainly for music, but then I discovered the IT Conversations web site, which is chock full of really interesting downloadable talks, many of which are so relevant to my job that I can make a valid claim to be doing research while I am swimming!

I found a slight glitch in that there is no way to bookmark the point you get upto in a talk and restart at that point the next day, so for longer mp3’s I have had to split them into 20 – 30 minute segments, and after trying quite a few splitters I finally chose Cool MP3 Splitter mainly because it’s the only one that worked without admin priv on Windows 2003 Server, and it was really simple and cheap and fast.

All in all a great contribution to work life balance, and a great talking point as well!! Oh one final tip, I find foam ear plugs much better than the fancy molded versions that are supplied and if you buy them off the web in bulk they are really cheap, great of your wife snores as well!

After a good swim, I often sit by the pool (there’s a great chill out area) watching the kids play while I continue working on my Tablet PC, which is great at night when they put the lights down (too dark to read otherwise) and of course I can continue listening to talks on the tablet as well while I read cached web pages or do document reviews!

Workspace modifications I have made to accomodate Stills

Steve Richards — Tue, 02 Nov 2004 01:10:00 +0000

Summary	Status	Description	Efficacy
Working from home	Approved and implemented	Allows me to work when I would otherwise be too ill to travel. Allows me to spread the workload throughout the day reducing intensity. Reduces exposure to infectious agents. Allows more frequent and effective breaks. Reduces stress Allows distraction and relaxation techniques to be used more effectively Allows workplace to be personalised, see later	Very effective, has increased the number of working days from 1-2 days a week to 4 days a week.
Speaker phone	Approved and implemented	I am not able to hold a phone for extended periods so it allows me to conduct conference calls and extended telephone conversations which are vital to effective home working	Very effective
Multiple monitors	Approved and implemented	Allows me to distribute applications across multiple screens, greatly reducing the amount of keyboard to mouse movement (switching applications etc) and makes it much easier to concentrate and results in less fatigue.	Very effective
Gel wrist support for mouse hand	Approved and implemented	Provides support for my wrist when using the mouse	Very effective. Mouse use would otherwise be very difficult however mouse to keyboard transitions are still difficult.
Local heating	Approved and implemented	My hands get very cold when using the keyboard. I use a local room heater to keep the room temperature high, also use fingerless gloves.	Fairly effective, but not a solution. I also use hot/cold water baths to stimulate circulation and a Tablet PC which has a heated screen that you rest your hand on.
Tablet PC	Approved and implemented	For reading and note taking I use a tablet PC. This allows me to write and have the text recognised. The screen is warm so when your hands rest on it the cold hands problem is eliminated. The alternative input model – i.e. no keyboard – provides my hands with a rest.	Fairly effective, but not a complete solution as different hand pain results after extended use. But as a complementary input method it works well.
RSI Guard	Approved and implemented	Software monitors PC usage and enforces breaks and sets limits on usage per day. Prevents me getting to stiff, forces stretching exercises and daily use limit stops good day/bad day extremes by stopping over work on good days causing a bad day the next.	Very effective especially as the stretches are demonstrated and can all be performed seated.
Adjustable chair	Proposed, see Osmond group report.	A more adjustable chair is required. The current chair does not have back adjustment, neck rest, arm rest adjustment. In addition arm rests need to be short so as not to obstruct desk, and needs gel pads for elbows.	Expected to make extended work 4-5 hours per day at PC more viable.
Ergonomic keyboard	Proposed, see Osmond group report.	Keyboard with less key impact to reduce stress on fingers and wrists.	Expected to make extended work 4-5 hours per day at PC more viable.
Keyboard support with gell pads to support wrist and integrated mouse	Proposed, see Osmond group report.	Gel pads support wrists which always get very painful after an hour of typing, and sometimes much less. Integrated mouse reduces keyboard to mouse transitions.	Expected to make extended work 4-5 hours per day at PC more viable.
Voice dictation SW	Trialled, difficult to use	Translates voice dictation to text	Due to the technical nature of the content and the number of complex layouts and diagrams this has proved difficult to use without extensive corrections being required that result in even more hand stress. May try again but not considered a high priority.

AOSD Update

Steve Richards — Tue, 02 Nov 2004 01:04:32 +0000

When I provided my last update I had just gone back onto 10mg of Steroids and was feeling quite a bit better. It didn’t last very long and have been having a pertty wild time over the last month as my symptoms have been so variable. I have also noticed that more “bits of me” are in pain, now added to the long list are Toes, Back, Chest, Jaw. I have also been working pretty hard trying to get a project finished which turned out pretty well by all accounts so that was quite encouraging.

Unfortunately it did me in so I took last week off as a holiday to recover, but ended up spending most of the time writing and on the phone trying to sort out extended sick pay, dispability living allowance and grant assistance for a special seat and keyboard. I also took the opportunity to write up some of the most frequently requested information, so I don’t have to keep writing it out, or more likely forgetting important information when people ask.

I have attached the files for anyone who is interested in the drugs and non-drug treatments I have been using.

How Still’s has affected my life – the answer suprised me!

Steve Richards — Sun, 24 Oct 2004 20:45:18 +0000

Lifestyle effects of AOSD/CFS

I visited my specialist last week and he asked me how Still’s affected me, focussing on issues like could I dress myself, cook etc. I am fortunate that Steroids seems to keep the major inflammatory affects of Stills reasonably under control so I am not completely house bound, when I don’t feel too good I just don’t do certain things, or get one of my 4 girls or my wife to help out.

After I had left though I got to thinking how I have modified my life to work around Still’s and I realised what a major effect it has had, it’s just that I have adjusted in such a way that it does not seem that I have given too much up overall. In fact taken as a whole, I think I am happier post Still’s, but that is probably as much to do with my positive outlook on life as anything else. These are some of the major changes:

I cannot do all sorts of things I used to do:

No DIY
No climbing
No weight training
No hiking
No heavy lifting
No stressful projects
No vacuum cleaning
No bread making

2. I sometimes get depressed and suffer from anxiety:

I almost never got depressed before Stills, maybe 2 down days a year. Now I probably have four or five of real down days a month. This normally happens when I have had a few good days and then relapse. I try to train myself to expect the good days not to last, but it is difficult not to get my hopes up. The good bad cycles have happened about 10 times now in the last 9 months so I am getting better at coping with it.
Anxiety is something new though, I get anxious over lots of silly things and so try to avoid situations with too much uncertainty

2. I need to avoid trauma or infection:

I have noticed that my symptoms flare with every infection from colds to tonsillitis. My worst flares (where I have ended up in hospital) have all been triggered by Strep throat.
I have also noticed that even trivial trauma, for example, a tooth extraction, injection, or bad cut also seem to trigger a mini flare. This tends to make me pretty cautious and I suspect that strenuous exercise, (if I had the energy to do it) would also cause a mini flare

3. I don’t travel much:

I never drive more than 30-40 minutes away from home; I get these very localised very painful muscle inflammations that mean I am unable to move my arm, jaw, knee, foot etc. It general takes about an hour for this to happen so I have time to get home.
Sometimes though when I get these localised flares I need to be rescued, so I am often ringing my wife to ask her to come and get me from wherever I am. Because of this, I don’t ever go very far from home.
My wife or friends drive me long distances, I hardly ever sit in a car for more than 30 minutes because I get so stiff and achy.

4. I get very tired:

I used to be very energetic and driven. I would often work for 12 hours at a stretch and hated to start a job that I could not get finished or at least make real progress on in 24 hours
I have had to adjust in a major way here. My expectations are set much lower. A task that is going to takes 3-4 hours needs a lot of preparation, I rest the day before, make sure I can have breaks in between etc.

4. I need help and supervision:

I often find that I am unstable, or the pain is so intense that a joint gives way when I put weight on it. When this happens, I am housebound and navigating the house is a real trial
During these periods I am often restricted in daily activities like dressing and bathing but my wife is a usually around and can help as can the kids.
Due to the poor concentration, I need to be careful, sometimes when not thinking straight I will need someone to drive me, cook for me and check my meds.

5. I struggle to concentrate:

It’s no longer possible for me to work for hours at a time. Most of the time I do well to concentrate for an hour or two and on a bad day that can be reduced to 20 minutes. I spread my working day out with lots of breaks.
I do try to do very gentle exercise like slow walking, cycling and swimming. When I swim, the hot Sauna and Jacuzzi help a lot as they allow me to have breaks whilst I try and build up my stamina. The exercise helps a lot with concentration. After 1/4 an hour of exercise, I am often able to concentrate for an hour maybe even 2 on a good day. On many days, I struggle to exercise though.

6. I am unable to plan to do anything:

Within 24 hours I can go from a reasonably normal state to almost crippled, even with the daily steroids, (and Methotrexate).
As an example on a really good day I can walk 2 miles and swim 40 lengths, within 2 days 8 lengths is a major achievement and a 50 metre walk is a triumph
We tend to leave holidays until the last minute, even then, sometimes I have to stay home and let my wife and kids go alone, but often we manage it so that I am able to go as well and I always feel better for the change.

7. I spend more money and earn less money:

Frustration used to be a natural part of life. Now I avoid it like the plague, I have enough to deal with! If something annoys me, or I want something that my company won’t provide, or I need something fixing round the house and I don’t have the energy or strength to fix it (most things) I just spend the money now. I used to be much more of a saver.
I have bought more holidays from my company, (I get paid less but get more holiday), which gives me more opportunity for a thorough rest.
I only manage to work about 25-30 hours a week, so I will soon only get paid (via my insurance company hopefully) 75% of the hours I am unable to work.
I spend more on experience and less on things. I am not sure how my experience with Still’s will pan out in the long term so whilst I am still somewhat mobile as a family we are spending a lot more on experiencing things than accumulating things. We all feel better for it!

8. I have become much more relaxed and positive:

I live with daily uncertainty, pain and fatigue. I have had to learn that I can still enjoy life regardless of these external elements that often fight against me.
I have learned that most people when they understand how Still’s affects you help you to live with the variability and accommodate you.

9. I have learnt more discipline:

My days used to be governed by meetings, to-do list and diary. I hardly had to think about what to do.
Now I work on longer-term research and my health depends on forcing myself to do things, like exercise, that I often don’t feel like doing and working when I feel like slumping in the chair and watching TV or sleeping. That has taken a lot of discipline but I have had a lot of support from work and family

10. I do a lot more housework:

Now that I work at home, I have included a lot of housework into my routine as it provides a good way to take a break and with 4 kids gives my wife more time to pursue some of her interests at last.
I really like washing up, it’s great for the hands
I wash and put away all of the clothes, and with 4 girls that’s a lot of washing! Although I cheat because I can’t put things on the line so I use a tumble drier for everything!

11. I have much more time for the kids:

I am always around and able to take a much more active role during the week than I was able to before. Previously I was a very attentive weekend Dad, but now I might be a bit slow, but I am a 7-day Dad again.

12. I take time for myself:

I realise that looking after myself is a high priority, so making sure I get plenty of fun, rest, good food, lots of exercise and the minimum of stress are all top of the agenda

13. I have learned to say no:

I used to accumulate work at an alarming rate. I don’t do that now, a friend of mine, in a similar situation, said recently “don’t do anything you are not paid to do”, sounds simple but prior to Stills working a 60 hours week was common, now 37 hours is impossible so I work hard when I am able to, but when my health is at risk, I don’t find it hard to say no. This also applies at home my family have been great in understanding that there are lots of things I can do but often I need to say no on particular days, and there are just some things that they have to do with Mum.

AOSD and work

Steve Richards — Wed, 06 Oct 2004 18:47:00 +0000

One of the responses to my post on the Stills Message Board was about AOSD and Work, and the difficulty some people have with communicating with their employers about the disease, and in fact with some health industry workers. I thought this was interesting because it’s similar to my experience so I thought I would write a bit about it.

First off you need to be able to explain why Still’s affects your ability to work. At first I just tried to describe the pain, but in my case the pain is really not that extreme and others do manage to work with that level of pain. I am a pretty motivated guy normally so that got me thinking a bit more about why I struggle to work when I am in a flare and why even when things have stabilized I don’t have the stamina I used to have. This is what I came up with:

Although I suffer from Joint, Muscle and Tendon pain these in themselves I can put up with and generally work through provided my arms and hands are not too bad, (as I spend a lot of time typing) and I take a break every hour.
Every couple of days I will get extreme pain, often very localised, for example in my Jaw, Knee, Elbow, Finger etc. Normal pain killers have no effect. It’s very difficult to find work to do when in this sort of pain. I have found that only things that are very easy, or very absorbing (but not complex) work because they are distracting. In my job I try to watch recordings of technical conferences during these periods.
The main things that affect my ability to work are, the fatigue, difficulty concentrating and mental fog that seriously affects my mental acuity. These things don’t stop me dead, for example I am still able to read, have a discussion on the phone, type a couple of emails, but they limit the amount of time I can spend working, the intensity and the quality of my work. I tend to find the error rate in my typing increases 10 fold, that I struggle to find the rights words, or make difficult decisions. These symptoms rule out most of my work activities.
An associated problem is the depression, the combination of the pain, the mental affects, the lack of sleep, the fevers, the itching etc don’t make me that positive and the slightest issues seem to make me anxious and frustrated. When I feel like this I have to avoid certain situations, such as document reviews where the conclusions impact on people firmly held beliefs, as these discussions quickly degrade into arguments.
I have noticed that hard work tends to increase the likelihood of a flare and affects the duration of a flare, so my Doctor tends to encourage me to rest
I have pretty reliable evidence now that whenever I get an infection it triggers a flare, and this tends to wipe me out for about a week

However I have found that home working combined with a carefully designed work mix makes this all a lot more bearable for the following reasons:

It’s much easier to take a real break when I get tired, because there are plenty of other things to do at home
I am less likely to get drawn into working for too long, or to get sucked into solving problems that are not my responsibility
I am able to work an extended day, lowering the intensity of my activity
I don’t have to worry about my ability to drive safely
I have more flexibility in what I do at particular times, for example if my arms are hurting I can sit in a comfy chair and do some reading, or go for a walk or a swim

I am trying to develop a mix of work that is as flexible as my condition is variable, my ideal work mix goes something like this:

Work that does not have short term deliverables
Work that does not involve me being available at specific times during the day
A mix of work in the following proportions, 2 hours of research, 2 hours working on long term deliverables, 3.5 hours medium term project deliverables.
Even on bad days I can normally manage the 2 hours of research, on better days I try to work on the medium term project deliverables and on the best days I also work on the long term deliverables.
My current experience is that I have gradually increased my work from 3-4 hours average to 5-6 hours average. Whenever I have got beyond 6 I have had some sort of relapse for a whole variety of reasons, which may not be work related for example an infection or a dosage change.
I have also noticed (not suprisingly) that the worse I feel the more research I do and the less I work on deliverables.
On the plus side I have found that my grasp of concepts and my intuition are still very strong (probably stronger than they were before) as is my ability to review and help bring shape and structure to work.

Finally how to help people understand:

I have kept extensive records, which have helped me understand much better! In particular I found keeping records of things like fatigue and mental acuity particularly useful
It’s key to think not in terms of symptoms in their own right but how these symptoms affect your ability to do things
Its key to think about how you feel, not just about the things that the doctors can measure
I have found it very difficult sometimes to understand why I struggle to get beyond 6 hours average work. What seems to happen is that hours just drift by in a mental fog. So I might sit at my computer for more than 6 hours but more than 6 hours of work does not get done. I often find for example that I have sat for half an hour reading a report and can not remember what I have read and have to go back and start again (when this happens I count that as 1/2 an hours work not an hour).
There is very little available to help Still’s patients but one of the most useful things I have found is the wealth of material to help sufferers of Fibromyalgia. This is particularly helpful because this disease has similar pain, fatigue and mental affects to AOSD so its impact on work is similar. Search the web and you will find loads of advice on disability, coping with fatigue etc. You can start here:

http://www.fmnetnews.com/pages/Disability.htm

http://fmaware.org/patient/disability.htm

http://www.nfra.net/fibromyalgia_disability.htm

AOSD Update

Steve Richards — Wed, 06 Oct 2004 17:58:00 +0000

Well it’s that time again. A quick look back at the last month and how I have coped and what I have learned about AOSD. Here is a summary chart showing cumulative symptoms:

At my last visit to my specialist I was on 20mg of Prednisone, I was doing pretty well but my bone density scan showed I was below normal.
We agreed that I would reduce to 10mg and then taper off to zero and transition to Methotrexate.
Just after this visit I came across some articles that suggested that sustained medium intensity exercise produced natural Cortisol and I began to get excited about the prospect of substituting exercise for Prednisone. This didn’t work and I blogged about that in much more detail here
As I reduced the Prednisone I introduced a NSAID Celebrex
Anyway I slowly came off Prednisone, I seemed to be doing reasonably OK and I initially put the gradual increase in pain down to Prednisone withdrawal.
Then all of a sudden I was hit with really bad waves of fatigue, very poor concentration, plenty of tendon and joint pain, headaches etc. I was feeling really rough.
At first the doctor thought this was an infection, so I started monitoring my temperature but there was no sign of fever. Even so he was reluctant to put me back on Prednisone. After a while we agreed it was unlikely to be an infection so I went back on 10mg Prednisone.
Within about 5 days I was feeling quite a lot better. That’s where I am now; I have just had the blood tests to check that I am OK to go onto Methotrexate, and am expecting to start tapering the Prednisone in about 6 weeks once the Methotrexate has kicked in.

I did discover something interesting though during this flare. Over the last 9 months I have not suffered from the high cyclic temperatures. I put this down to being on the Prednisone. I did however notice that my normal temperature (which used be bang on 98.6 ) had reduced to about 98. For this short period while I was off Prednisone I monitored my temperature and I had a typical daily Stills temperature cycle, but from 96 to 98, whereas previously with Stills my cycle had been from 98.6 to 101-102. I also plotted my fatigue/concentration levels against my temperature and not surprisingly when my temperature was low I felt very fatigued and had difficulty concentrating. Strangely I never felt cold, in fact when my temperature got near normal it felt as if I had a fever, (sweating and shivers).

This is what my temperature looked like:

Thank goodness for swimming!

Steve Richards — Mon, 13 Sep 2004 03:01:11 +0000

I have always loved swimming, and since I have started to suffer with AOSD, it has become all the more important to me. Right now I am not able to swim at all, but hopefully within a few days I will be swimming ten lengths, within couple of weeks I may get up to 40 lengths a day again. Hopefully I will get back to 60 within a month or so, (which is what I was doing last year before this last flare).

The kids love swimming even more than I do and would go every night if they could. When I am ill this posed a bit of a problem as our pool, above, is not supervised and I rarely felt like taking them. Now however they have just opened a new extention with splash pool and Jacuzzi, even better there is a great seating area. So now no matter how I am feeling I manage to take them 3-4 times a week and am able to sit and read in confort whilst still keeping an eye on them. I feel much less guilty, and its easier to ease myself back into trying the Jacuzzi and then those first 10 lengths!

I have a throat infection

Steve Richards — Sun, 12 Sep 2004 19:32:00 +0000

Well the reason for my relapse again last week appears to be that I have a throat infection. White spots on my Tonsills and a sore throat and mild temperature being the evidence. As always whenever I get an infection the Stills symptoms come shooting back, but this time I am resisting increasing the steroid dose and just putting up with it. Its taken me a while to get down to 5MG and I don’t want to go through that process again.

At the moment I have pain in all my main joints, wrist, elbows, shoulders, ankles, knees, lower back, am aching pretty much everywhere else and am feeling very tired. Concentration is poor and I am not in the best of moods!

Ergonomics review

Steve Richards — Sat, 11 Sep 2004 00:37:00 +0000

The Osmond Group, no not the pop group! are coming round to do an ergonomic review of my working environment. I have specifically asked them to look into the following:

Suitability of current seating, I want something that lets me change position to suit what’s hurting

Issues with keyboard use, finger, wrist and elbow pain issues. Pressure on lower arm issues

Issues with mouse use, as above

Keyboard to mouse movement difficulty

High hopes dashed yet again …

Steve Richards — Fri, 10 Sep 2004 14:39:00 +0000

In a previous post I had analysed the possible reasons why I seemed to get better whilst on holiday. I concluded the following:

1. I did not go on holiday in the first place unless I was feeling a lot better.

2. I did loads of exercise whilst on holiday.

3. When I get home I get much worse again

I looked into the exercise theory and found:

1. if you do moderate exercise for 45 minutes or so, regularly throughout the day on an empty stomach this stimulates the stress response

2. This results in natural Cortisol production

3. Natural Cortisol is about 1/5 of the Steroids I am being prescribed but could account for maybe 5-10mg dose

4. Exercising in this way is known to cause immune system suppressing effects, normally a draw back, which is what I need

So this week as my symptoms were not too bad I started so such a regime:

1. ½ hour cycling

2. 1 hours walking

3. ½ hour swimming

The effects were just like when I was on holiday and soon I was pretty much symptom free. Unfortunately it only lasted for 3 days, and then all of a sudden my elbow started to hurt, then my kness and then my ankles etc etc. I could not sleep because of the pain so I took sleeping tablets. By the next day I was exhausted and most of my joints were hurting and concentration was typically poor. So what have I concluded?

1. I haven’t given up on the exercise theory, I will have to wait until symptoms subside before I try again though

2. It may be that it works for a few days and then something triggers a new flare, this is consistent with this trial and the holiday experiences, none of which have left me symptom free for more than 3 days.

AOSD Update.

Steve Richards — Fri, 20 Aug 2004 19:02:00 +0000

This is another of my regular updates on how I am progressing/coping with Adult Onset Stills Disease. The following graph gives you an overview of symptoms:

Here are the highlights:

For most of this period I have been on 20MG of Prednisolone
I have continued to have good and bad days, more bad than good until recently
Then I had a period of 18 good days, the longest period of good health for 7 months, I put this down to the Steroids finally kicking in. Of course during this time the sleeplessness got worse so I was still pretty tired, but when there is less pain life seems so much better!
I went to see my specialist last week he said given the fact that I am feeling much better I need to cut the Prednisolone to 10MG and then drop it by 1MG per week. As I have now been on Prednisolone for well over a year I needed a bone scan as well
I had the bone scan and it reveals that there is some cause for concern, but it not too bad at the moment. I was pretty disappointed by this as I have put a lot of effort into my diet and exercise to try and maintain bone density.
My specialist has also said that he wants me to consider going onto Azathioprine or Methotrexate and that I need to decide which set of side effects I fancy having the most L. Neither looks very inviting.
Feedback from the Stills Message Board seems to favour Methotrexate but I am keen to avoid either, I just don’t know what to do to achieve it, but I am trying as many lifestyle, and diet options as possible.
I have just got back from 3 nights away in Scotland. Something strange happens on holidays I always seem to feel much better, in fact twice on holiday I have been completely symptom free for 2 days!. This has had me thinking that there is some miracle cure waiting to be found and I have thought through the options.
1. Less stress; I don’t think this is the reason, holidays are actually quite stressful, lots of time cramped in the car and caravan with 4 squabbling kids etc.
2. Different diet; I thought this was a factor as on one holiday by chance I had a dairy free diet, but I have tested that since and it didn’t have a huge effect, certainly not significant enough to account for the variation I see in symptoms
3. More exercise; when we are on holiday we walk a lot; of course I only go on holiday when I am feeling pretty good in the first place. I think there is something in this, the continued low intensity exercise does seem to help, and I have noticed this at home as well. The problem seems to be when I stop even for a day symptoms spring back and then it takes a while to build up the exercise levels again. I am talking about 3 hours of walking a day here, that’s a lot of exercise! When my symptoms spring back 10 minutes is too much! When I am, flaring getting down the stairs is way to much.
4. I eat more, because I exercise more I allow myself to eat more snacks, mainly in the form of fruit or dried fruit bars. It’s possible that there is something to investigate here.
5. Weather; we have been pretty lucky this year in that we have had really good weather, very sunny and not too humid. I think there is something in this as well, partly mental and partly physical. Also good weather tends to encourage exercise, so it reinforces the point above
6. No work on the computer; I hope this isn’t a factor, (because its my job), but its possible that the sitting around for a lot of the day is a factor. I use RSI guard on my PC that forces me to keep taking breaks and this does seem to help.
7. I sleep better, I almost always take sleeping tablets on holiday as the caravans are so hot and the beds uncomfy etc, so I get a very good nights sleep. I think there is something in this as well. When I feel really bad I do find that taking sleeping tablets for a couple of days helps.
Anyway I am back from holiday and my symptoms are back again, (I have also been under more pressure than usual at work for a few days). Wrists, Ankles and Knees are the worst. I have a sore throat again, headaches every day and difficulty concentrating. I am hoping that some of this is Steroid withdrawal.
I am going to try the sleeping pill trick again for 2 nights, and try and exercise but its difficult. However I have learned that the symptom pattern is very variable and it may be at the end of the day that I never find a pattern of external events that cause a trigger. I am just not at the point where I give in to it being something I am unable to influence.

Nic asked for some more details on my early history of Stills.

Steve Richards — Thu, 05 Aug 2004 18:46:00 +0000

There is a great message board available for people who suffer from Still’s. Nic responded to one of my articles asking for more info on my early history. Here is my answer:

It just started out of the blue. I was in London at a conference, I started with a sore throat in the morning, by lunch time my legs were hurting, I managed to walk to the train in the evening, but could not get off the train by 10:00. The doctors had no idea, and just gave me anti-histamines for a week, but they had no effect, after a couple of weeks I was mobile again, although it took 6 weeks for symptoms to really damp down. After which I was essentially symptom free for 18 months. I had a few aches and pains but I did not really relate these to the Stills flare.

When I had my second flare it too was triggered by a sore throat, again it was not diagnosed, but this time died down after about 2-3 weeks without medication.

My third flare was about 12 months after and was also triggered by a sore throat. I managed to get into hospital this time, it was much worse, and they said I had strep throat. It took about 3-4 weeks to get a diagnosis, of Stills and then they put me on the steroids. Within 2 days I was out of hospital although it was a few weeks before I was well again.

Last year and early this year I had 2 flares that were not triggered by a sore throat, interestingly they did not have the high temperatures either, just the pain and fatigue and loss of concentration.

However the last of these flares has taken a very long time to clear, its been over 6 months now and I am still on 20MG of steroids, and still in a bit of pain. Also every time I get the slightest bit of a sore throat, or cold or cough I have a mini-flare again.

There is more detail in by blog. I have a category specifically on Stills.

http://radio.weblogs.com/0135175/categories/aosd/