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By Kingsley Forbes-Smith
Excerpts from speech (plus more) given to
AS conference in Brisbane 20th July 2002.
Later published in AS Qld Newsletter.
For me Ankylosing Spondylitis manifested itself as severe "arthritic" pain in the lower back and iritis attacks in the eyes but now, looking back (excuse the pun), I would not have it any other way ... why? Read on.
Walking was slow and steady as she goes, gently placing each foot before transferring the weight onto it. A toddler could have crawled faster. Night walking was extremely tricky and even slowwwwwwwer, effectively impossible if more than say 50 metres.
Some of the things that I didn't enjoy were trying to avoid the ruts across roads when driving the car. I used to drive for miles out of my way to stay on smooth roads. Gosh I hated those bumps and when a local road that had previously been littered with ruts was given a new coat of tarmac, you could almost hear me cheer. It was however short lived as only 1 week later somebody decided to lay a pipe across the road by you guessed it ... digging a trench from one side to the other.
I also knew the exact position of all the potholes around my area off by heart. Useful to me at the time.
Another little "challenge" was stamping my foot! In my job at the time, we used to occasionally pull up and put down false floors in a computer room. When they didn't quite fit, we would stamp on them, of course with a weak back this was next to impossible so I used to "tap" them, mostly unsuccessfully, with my toe. Oh well.
25 years later, now I can run, jump, do handstands and cartwheels, all the normal sort of stuff that a 45 year old would do. So what has changed?
The following tips were not conducted in any particularly scientific way, they were just one individuals (my) way to assist the condition at the time. There were no double blind studies, nor sample or control groups. Maybe my condition would have improved by itself, maybe it is just in remission, I have no way of knowing, but I do know that what I was feeling at the time changed at the same time as I made many of the changes suggested below. They are offered with no guarantee. Each must be assessed and decided on by the reader. I take no responsibility to their effectiveness or otherwise for your condition. I also suspect that there are many factors involved.
Keep warm, or at least avoid getting cold. I used to wear Damart thermals to keep the lower back warm. Watch out for getting a chill, for example if you perspire and then have a cool breeze on you. I was the one always carrying around a jumper in summer, in case of air conditioning etc. I used a Giro Body belt on the lower back all day every day for years. Catalogues are available by mail order from Damart in Artarmon Sydney (phone 1300 365 555)
Keep up with the stretches, as often as possible, slowly and deliberately, gently but as far as you can go - ask your physio. My favourites were:
When I was 22, on waking up, I would spend 10 minutes stretching before I could walk to the bathroom, then another 20+ minutes, several times each day. By age 27 for many years after it was more like 10 minutes per day. However I have noticed major improvements again now that I am doing 2+ hours per day (last 5 years). Stretches have been and still are a major part of my life.
Boy did I feel good the first time that I discovered swimming, here was something that I could do without pain (well not too much anyway). It felt great and I slept better, plus it kept me moving. My first time in the pool I struggled through 10 laps over a 1 hour period. Over time I gradually built it up to swim every second day without fail, up to 2 kms. Without the swimming I had great difficulty walking on day 3, so the swimming took priority ... over everything. It just happened, always.
Trying to keep the strokes varied, I did freestyle, breaststroke, backstroke, sidestroke and about half of all the laps were butterfly. For the first year or so, the butterfly was accompanied by extensive drinking of pool water and frequent spluttering. The feeling cold after swimming was a bit of a problem but the car heater was useful.
Stretch out whenever possible, eg, when going to sleep, wriggle well down into the bed then pull the head and shoulders back up to the pillow, puts the spine in gentle traction (for a minute or so anyway).
Keep moving, I found that whenever I was stationary I locked up so beanbags and comfy lounges were out. Give me a hard chair or the floor any day - that way I can keep wriggling. I still don't own a comfy lounge, lots of floor space though, makes for interesting seating when visitors come over. This article has been written while bouncing around on a "swiss" ball at my computer.
Keep straight, I found that I was often a bit "achy" when I sat in one of the chairs at work. Careful measuring showed that it was not quite flat, it was tilted to one side. Also sit square to the way that you want to face rather than twisted a little, eg when talking or watching TV. If sitting "lopsided" make sure that equal time is spent lopsided the other way.
Working: Wriggle into a job where you can move around, or make continuous reasons why to move. My problems got a lot worse when I was working as a draftsman spending long hours hunched over a drawing board, keeping still (sleeping actually, but don't tell my old boss). Things improved immensely when I was working in a job that involved part of the time walking around. A number of promotions were turned down as they would have meant long hours behind a desk again. No way!
I used to love racing small sailing boats but that all went out the window when my back gave up on me. I could however still get out in boats and onto the water by teaching others to sail and I didn't have to do anything, except keep warm!
I found that my diet made a difference to how I felt. I gave up social alcohol drinking for 3 months and it made no difference, but then when I had a couple of beers, whack, I felt really bad. I was under the close supervision of a naturapath and basically my diet was, no dairy, no processed food (or drink) of any sort, no red meat. My diet was mostly fresh vegies, cereals, grains, nuts and water. After several years when my health was improving, the pain level closely tracked the type and quantity of food eaten. It could be switched on and off depending on what I ate. A 24 hour fast left me pain free. Note: that I could not take this step while still on medication and any radical diet changes needs to be done in consultation with your medical supervisors. I still don't have any tea, coffee or alcohol and am wary of the quantity of food eaten particularly if intending to be seated for a few hours afterwards.
Keep a diary - I found that it only needed to be on a month by month basis for most things. However exercises were kept under closer scrutiny on an almost daily basis.
My diary included: medication, stiffness/ mobility, energy, exercise, diet plus other things as they occurred to me.
Are you doing what you want to do? 20 years later I realised that at the time I was studying something that I really did not want to do. Explore some of your "life" priorities, are you doing what you feel that you need to? I certainly wasn't then, now I believe that I am. This can make a huge impact but we often need others to help us in this process. Personal development, life coaching, professional guidance, all can help.
After some 6 attacks of Iritis, spread over 5 years then 1 more after 20 years, I discovered that I am a slow learner, also each attack was triggered by either something getting in my eye or other eye stress. After several attacks I realised that each had some warning signs. Often I got something in the eye, eg dust, perfume (when I went to a hairdresser, can you believe that?) or just tired after a long day outside (in the sun). The eye felt "dry" with a distinct lack of moisture and then got red.
Each time I adopted a "washing routine" that basically consisted of sloshing lots of cold tap water into both eyes to flush them, about every 5 minutes until the eye settled or got worse. The trick was to take action immediately, we have a bottle of water in the car just for this purpose. Any time the eye felt dry I would wash my face and slosh water in, probably about 5 + times per day.
Over the 20 years iritis free, I had about 50 occasions when it looked and felt like an attack was developing but after the washing routine it did not develop. If any symptoms had not settled within 12-24 hours then I would dash off to the eye specialist to get it checked out. Take action early, don't wait, after a delay of 4 days the first time (when it was incorrectly diagnosed by a GP), I very nearly lost vision in 1 eye.
I found that retractable seatbelts in the car are designed to constantly tighten a little and after half an hour or so the lower back started aching. Non-retractable belts were fine, the position could be set and it stayed the same. A wooden peg on the belt does something similar. However note that any modification to seat belts (even a peg) without permission is illegal and may compromise the effective operation and therefore the drivers safety. Talk to your Doctor about what needs to be done to get permission/modifications and do it right.
Sitting in front of the TV one day, I noticed that I could move the little toe on one foot out to the side, away from the others but on the other foot I couldn't (the things we notice in front of the TV). The challenge was then on to move the other toe the same, after 2 days and many hours of contorted facial expressions, eureka, there was a tiny bit of movement. After 2 weeks they were similar. I treat some of my exercises the same way: can't do them yet, but let me work on it and "feel my way in" to the joint or muscle required. Some people would think that I am weird! Oh well.
As any sudden movement caused considerable pain, I did not enjoy getting "surprised". I made a conscious decision to train out my reflexes. This decision was not taken lightly as our reflexes are there to help us in an emergency however considering the pain that they caused did not serve me well at the time. Many hours of thought went into this process but I knew that I had been successful when one day at the side of the pool, I was looking directly at a water polo ball coming towards me, my brain said "It may hit, it may not", not a single muscle flinched and the ball passed with a whoosh, I could feel the air rush past my ear. The guy that jumped out of the pool to retrieve the ball, gave me a funny look, like, "Why didn't you move?".
A few years later as the pain subsided, I trained them back in again, it took a year or two more before they could have been considered "normal".
I was on medication for about 6 years, there is no doubt that this helped me to deal with the pain and assisted in maintaining flexibility. Find out everything you can about your medication and work with your specialist to find solutions that help you.
Many many times I felt it almost impossible to start the exercise routines, it was so painful, but start we must and I knew that later today or tomorrow I would get the benefit of the exercise that I did now. Focus on feeling better later and provide time to rest and catch up too. Balance is the key.
Reading some of the tips above you may think that my journey with AS has been a problem, nothing could be further from the truth. Many people wander through life not knowing what they are there for or what to do.
My AS has helped me learn a heap of stuff about myself and brought many of my priorities into focus. Sure it has caused some problems along the way, however I believe that it has made me happier, more observant, more contented and probably even healthier than I otherwise may have been. How many 45 year olds do you know that sprint around the oval, play soccer and do cartwheels?
Now I am also doing what I love ... speaking, techo stuff and teaching. I have developed a system to help children learn about money, visit our website for an article on the "Perils of Pocket Money" at www.investmentkids.com
All this has happened as I have learned about myself, living with AS. Illness can be a great teacher!
If you would like any more info, please feel free to contact me via email firstname.lastname@example.org or by phone 02 9477 7979.
I wish you all the best on your journey.
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