Meet Jo Southall, the occupational therapist who has to constantly consider how best to keep cool in a wheelchair.
Simply staying cool & functional at room temperature should be easy, unfortunately for me it isn’t. My name is Jo Southall and I’m an Independent Occupational Therapist. I live with a number of complex medical problems but the main ones are Hypermobile Ehlers Danlos Syndrome (hEDS) and Postural Orthostatic Tachycardia Syndrome (PoTS).
hEDS is a connective tissue disorder, my body produces faulty collagen. The effects of this include lax joints, digestive troubles, chronic pain, fatigue and stretchy blood vessels.
PoTS is a fancy name for a wonky autonomic system. I struggle to regulate my pulse rate, blood pressure, temperature and digestion amongst other things. Changes in posture cause my heart rate to increase beyond the norm. At my most unwell the simple act of walking upstairs would leave my heart rate in the low 200’s as opposed to a healthy 60-70bpm.
I’m seriously intolerant to heat.. and mildly intolerant to cold too. It’s a vicious circle, my wonky autonomic system stops me regulating my body temperature and being too hot or too cold causes my autonomic function to get worse.
Worst case scenario? The summer heat leaves me staggering around like Capt. Jack Sparrow in pirates of the Caribbean. I exhibit all the signs of heat stroke but this happens at what should be very pleasant temperatures. Throbbing headache, light-headedness, flushed & blotchy skin, muscle weakness, cramps, nausea, tachycardia, confusion, disorientation and if I’m not careful… unconsciousness.
Managing heatstroke symptoms
Over the years and with a little help from friends with equally wonky bodies I’ve learnt to manage the worst of my symptoms. I now, through my work and blog, get to pass these tips on to others who are struggling.
It’s often the simplest things that make the biggest difference. I try really hard to stay hydrated and I always have a drink on the go (no I don’t mean booze). I always wear layers so I can either bundle up or strip down as I need to. In the summer months, I carry a spray bottle of water and a folding fan. Evaporation cooling works brilliantly. Spray water on your skin and as it evaporates it lowers your skin temperature nicely.
In desperate times, I’ve resorted to wearing a phase change cooling vest to help regulate my body temperature. Expensive but worth it, phase change material is sort of like ice. Solid when cold but liquid when warm. It stays at a cool (but not cold) 16 degrees for about 3 hours and you wear it just like a Kevlar vest… sort of looks like one too.
It’s been an interesting journey and one that is shared by many, temperature regulation issues are common with a variety of conditions. Multiple Sclerosis, Fibromyalgia, diabetes and neuropathies to name a few.
How wheelAIR® could help
It’s one of the reasons why I’m so excited about ideas like wheelAIR®. Think how much easier life would be for people like me if my wheelchair could manage my temperature for me? Maybe, just maybe I could go out in the summer without a medical kit as big as me… I could go out without planning how many times I’ll need to lay down or how many places I can buy a cold drink.
I could be spontaneous again… at least a little bit.
To read more about my journey and my work as an Occupational Therapist please pop over for a visit or find me on social media @JBOccyTherapy