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Activity

PWME can rarely tolerate, never mind reap the much celebrated benefits of, conventional physical exercise and related rehabilitation efforts. Our idiosyncratic, paradoxical relationship with exercise, a la post-exertional malaise (PEM), unfortunately renders such activity tantamount to a direct (physiological) and indirect (psychological) further source of trauma. That said, virtually every PWME who has recovered or is in remission will tell you that restoring physical functioning and strength has been important. Although we are only just beginning to understand the nature of PEM, and the best ways to approach physical therapy (PT), I firmly believe the following to be valuable insights that may help others progress with their health and physical functioning too:

The Groundwork

• Exposure | All plausible (neuro)immune stimulatory environmental exposures (e.g. PIP/POP, EMF/EMR, and damp/mould) must be addressed
• Grounding | Also known as ‘earthing', this has been shown to boost general health in a number of important respects and helps the body to mitigate PEM
• Restrictions | Neuromuscular tension may be mitigated with manual physical therapy and light functional/nerve mobilisation (direction of ease) exercises
• Breathing | Hyperventilation/hypo-inflation are common issues, with ‘chesty breathing’ habits and hypocapnia a corollary. Buteyko method is recommended

The Bare Minimum

• Fresh air | Get some fresh air and sun light each day if possible, particularly in the early afternoon (Vitamin D is vital and boosts the immune system)
• Posture | Maintain an uplifted posture and move about as often as possible. Seriously consider using lumbar support belts/cushions when seated
• Flexion | Avoid allowing your upper leg(s) to rise past 70 degrees from straight extension and stooping/craning your neck or tucking your chin
• Seating | Use either an air cushion (to provide mobility), in combination with a kneeling chair or a high stool, or else a reclined seat with lumbar support
• OH-SH Paradox | Some PWME experience supine hypertension (high blood pressure when lying down e.g. manifesting as head pressure/ache) along with hypotensive/tachycardic orthostatic intolerance (relatively low blood pressure/high heart rate when standing [NMH, POTS]). These individuals ought therefore to take a two-pronged approach to managing OI: avoiding prolonged periods spent standing still and avoiding lying down as much as possible during the day

Activity Options

• Delicate dorsal rotation | Improves neuromuscular tension/lymphatic drainage
• Gentle stretching | Helps replenish muscles/remove acid/toxins
• Slow marching | Improves circulation and physical functioning
• Light home exercises | e.g. Pranayama breathing exercises ~ may aid vagal tone, and Pilates, Yoga, and Tai Chi ~ may mitigate neuromuscular tension
• Walking & Swimming | ‘Sculling’ is one of the least exacerbatory techniques, and being horizontal, in water, imposes less blood pressure (BP) strain
• Gentle cycling | Try to ensure this does not involve significant hip flexion e.g. avoid using a racing bike, and ideally use a recumbent bike (less BP strain)
• Resistance training | Steady resistance band leg exercises may not be well tolerated by everyone but can help to build strength
• Light jogging | In proper running shoes and on a soft surface, and only once neuromuscular tension and orthostatic intolerance have improved sufficiently

G.E.T & Pacing

Graded Exercise Therapy (GET) has come in for a lot of criticism as it often delivers little in the way of objective benefits vs. precipitates pronounced relapses e.g. when individuals are not adequately conditioned to be able to begin, never mind sustain, graded exercise programs, and/or when it is applied too intensely/inflexibly. Beyond doing ‘The Groundwork', when undertaking relatively strenuous activity (both physical and psychological) it is very important to listen what your body is telling you and to pace yourself/manage your ‘energy envelope’ accordingly. This doesn’t just mean planning for activity, it also means actively planning/making allowances for periods of rest, important for muscle recovery, energy replenishment, and the lowering of systemic stress

Always take small steps when working out sustainable levels of activity and never try to hit the most you feel you could manage, always ‘leave plenty in the tank’ for tomorrow. I aim for short periods of anaerobic exercise e.g. 30 seconds to a few minutes in duration, followed by rest/recovery periods twice the length. Going beyond 50-60% of your maximum normal potential heart rate (typically around the 100 bpm mark) is to be avoided at all stages of recovery. PWME rarely tolerate upper body strain/torque inducing activities like rowing, gymnastics, horse riding, weight training and tennis

After a relatively good night of sleep all fatigue (mental and physical) symptoms should be near enough back to a baseline level following activities (baring a bit of achiness which should dissipate over the course of the day); if, instead, you experience significant ‘payback’ then re-evaluate ‘The Groundwork' sub-section and, if you're convinced you've ticked all those boxes, then perhaps commit to ‘do half’ next time

Muscle Recovery

• Warm up | Always gently warm up and stretch prior to activity, taking care not to evoke any neural irritation by way of nerve mobilisation (direction of strain)
• Oxygenate | Spend 5 mins or so taking slow deep breaths to ensure good oxygenation as you do so
• Warm down | Always warm down and stretch post-activity, then ideally: A) Have a light sports massage; B) Apply cold compress (esp. to back); C) Warm wash

Intro | Location | Detox | Diet | Rest | Activity | Psyche