Cassandra has Chronic Fatigue Syndrome (CFS) and Fibromyalgia.
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It has taken her a decade, hundreds of tests and dollars to get a conclusive diagnosis which is simultaneously comforting and challenging.
So much is not known about CFS. Last year, Australian researchers proved for the first time, that CFS is linked to a faulty cell receptor in immune cells confirming that it is a 'real' illness - not a psychological state.
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Facts:
*Chronic Fatigue Syndrome causes widespread pain throughout the body.
*Cell function is impaired affecting the brain, spinal cord and pancreas.
*Chronic Fatigue Syndrome often follows a traumatic event or serious infection.
*Women are 2-4 times more likely to develop Chronic Fatigue Syndrome.
Besides chronic pain, OTHER Symptoms include:
*Extreme fatigue & poor quality sleep
*Depression
*Brain fog; a blunting of thinking and memory that impacts concentration.
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Historically two most commonly prescribed treatments for the condition are cognitive behavioural therapy and exercise. Neither have any evidence to support they work in fact there’s probably more evidence suggesting both could do more harm than good. Some school of thought is that exercise may put the body under more stress and hinder recovery.
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You can read information on CFS for days and as an Exercise Therapist it is extremely hard to know how to approach this for the best possible out come for a client. And here she is jumping balls for fun… it’s not exercise ☺
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About 2 months ago Cass contacted me requesting some kind of physical activity program because she hates being so sedentary and her psychologist recommended she see an exercise therapist. She told me she’d recently been for a massage which was incredibly painful as her muscles had atrophied so much, there was not a lot the masseuse could do.
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Cass had stopped being active at the end of last year. She also had to give up her job as a lawyer for a government department after gradually reducing her hours over the last couple of years. The fatigue, the brain fog and constant pain took its toll on her and exhausted the efforts of her most supportive work environment. She mourned the loss of long walks and yoga classes. She could no longer push herself physically without having to spend the rest of the day in bed. ‘Exercise’ wasn’t encouraged by the CFS experts and hours of ‘cognitive therapy’ had run its course. Her once busy social life recoiled to where she could only observe from the periphery friends and family evolve via their social media updates of career progressions, exotic holidays, milestone birthdays, hook-ups, break-ups, marriages, and babies.
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Cass, determined to find the cause and cure of her condition searched for as much information as possible. She tried Western, Eastern, Modern, Ancient, and every Alternative medicine she could find. She tried all kinds of remedies, therapies and programs for mental, emotional and cellular rejuvenation. She sought out experts, read scientific papers, went on retreats and slowly, slowly all the information came together. Like one of those mind maps on a white board where all the elements of an issue are presented under one heading, listed and visible but separated from each other by font style and size, lots of valuable information but no one solution. Her final medical tests confirmed the diagnosis of Chronic Fatigue Syndrome which has no cure, magic pill, anti-venom or antidote. And that has been both healing and challenging for Cass.
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Our first session was at her home. I planned some simple stretches and movement. I read up on the syndrome and contacted some colleagues for advice. I knew exercise was not a cure for CFS and decided I’d be guided by her and how she was feeling. We agreed she wouldn’t do anything that felt too much or too fatiguing. We agreed to play it by ear, session by session and we agreed to have no expectations. In the first couple of sessions Cass would hold on to some furniture or lean against the wall for balance and support through the movement. She was always up for the challenge. We started with basic side to side stretches, quarter lunge steps and squats, movements you’d do in a normal day. Like stepping and bending and picking up the odd thing. We did some rotations and spinal movement, some shoulder strengthening things and core stability. It was short and simple and didn’t seem to cause too much stress and we’ve gradually progressed form there. Cass now squats and lunges independently, can hold a light dumbbells for shoulder and scapular work, does a mean hollow rock … and now jump! Her attitude is inspiring. She is positive and upbeat and we laugh and chat through much of our time. She’s realistic and positive and manages her condition with hope for a full recovery in time.
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Sometimes she comes to the gym like today, in this video, and I push her a bit with some weight or jumping which she is always surprised she can do.
Cass tells me she will sleep for a couple of hours after the session but the bonus of greater mental clarity she experiences after a single session is worth it and it makes her feel good about herself. I send Cass weekly programs of 3, 10-12 minute sessions and she does them as she feels it, sometime all at one time and sometimes she’ll break it up through the day. She rests on alternate days and walks as much as she can tolerate. It’s a day to day proposition.
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There’s no pressure and no real goal. Perhaps the one goal for me is to provide some regular physical activity that is varied and sustainable. And if exercise is considered harmful, then we’re not calling this exercise. I know she likes what we are doing so far so we will continue to take it session by session.
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