What’s it really like to live with chronic health problems every day? How do you deal with the physical symptoms, emotional turmoil and practical problems? In this interview series, real life ‘spoonies’ share their experiences and tips.
Zoe is a 28-year old physiotherapist from England who lives with multiple chronic illnesses. On Actively Autoimmune, she shares spoonie-proof exercise videos that don’t cause a flare-up of symptoms.
Tell us a little about yourself.
I’m Zoe, 28 year old living in Essex in the UK. I am a physiotherapist, Pilates instructor and personal trainer. I set up my own company called Actively Autoimmune to help others with chronic illness manage their pain and find a way to exercise through fatigue and pain that doesn’t flare their symptoms.
I have multiple chronic illnesses myself, hEDS (hypermobile Ehlers Danlos), PoTS (postural orthostatic tachycardia) and Lupus (SLE). These lead to gut issues with gastroparesis, chronic migraines and Fowlers syndrome (urethral dysfunction so I have to use a permanent catheter).
When did you first get sick?
I first got sick aged 12, when I had multiple injuries and dislocations and ended up in a wheelchair. I was later diagnosed with EDS and learnt how to walk again. From then, I started having more issues with my joints, chronic pain syndrome and my gut started to be affected.
I also struggled with headaches and migraines. However, I managed school and university (just!) and managed to work as a physiotherapist okay until 2017. I became acutely unwell and two months later became diagnosed with Lupus.
Alongside coping with lupus, my other conditions flared as I became deconditioned and in particular my bladder function deteriorated. I now cannot pee without my supra pubic catheter.
In what ways does having multiple chronic diseases affect your daily life?
I had to move back home to the UK as I was living in Australia with my partner. I had to quit my job and have been unable to go back to working at the same capacity. However, I am grateful for being able to work on Actively Autoimmune, releasing my first e-book earlier this month and launching my online services this month. I can now see clients online for both physiotherapy, online Pilates sessions and exercising coaching plans.
I am still very limited physically, both in my energy levels and also with the constraints of pain. It’s very easy for me to ‘over do’ it, so it can be frustrating to pace every aspect of my day, from when I can shower to the time spent on my laptop.
How do you handle everyday practical problems?
I have either lived with my partner or with my parents, so I have a lot of practical support. Although I can now do more than I could the last few years, for me it is all about energy management. For example, I could do the vacuuming or I could do my exercises, so I pick exercises which are more beneficial for me and my health. So I constantly pick and choose my activities and grateful for my family that can help me do the other things.
I struggle cooking dinner and making meals partly due to the energy and physical side of it, but also struggle with nausea and strong smells. So I am grateful for my mum in particular for helping me with that.
I try to keep independent where I can though, as I believe the less you do, the less you are able to do. I am also a lot better at prioritizing basic self-care than I used to be – the more I look after myself the more I can do.
Do you have any tips on coping with symptoms? Is there anything you can do to prevent relapses?
Listening to my body is key. Trying to be in tune as possible as to what is going on and try to be one step ahead of it, I am constantly trying to watch for a Lupus flare and on migraine prevention mode.
I am never without my hot water bottles, heat pack and ice packs. These help me manage my pain alongside pain meds when I really need them. Exercise is really important to me, the stronger I am the more I can function. It helps improve many of my symptoms too as when I am deconditioned I get in a negative spiral.
Being chronically ill comes with a lot of psychological challenges. How do you deal with the emotional and social side of having multiple chronic illnesses?
The first year since my Lupus diagnosis I didn’t really cry, or deal with the emotional impact. I felt I need to be brave and just ‘get on with it’. I had unhelpful coping mechanisms like thinking crying made me weak, which definitely wasn’t true!
With EDS when I was young, I was told I had to keep pushing through, ignore the pain etc and then with Lupus I was told to rest, take my body out of fight or flight mode. I think it took me a while to find myself happy with some place in the middle and not shut out negative emotions. Now I feel it’s okay to have bad days and let myself grieve for my past or my health, or feel frustrated or fed up.
How do you keep joy in your life on a day-to-day basis?
I find living in the moment as much as possible helps. Appreciating the good moments, even if it is a small moment such as being comfortable with a hot water bottle watching tv or listening to a podcast, or being grateful for being able to go outside to get some fresh air.
I’ve learnt to appreciate the small things, and focus on what I can do versus what I am unable to do. Trusting that the worst moments will pass also helps!
What would you like to tell others who are diagnosed with chronic illness?
It’s amazing what we can endure and live alongside. Although at times it’s really hard, it won’t always be like that and somehow you end up finding a way to live alongside it. Although I never planned my life to be in this direction, in many ways I do feel like it was meant to be, well ideally with less pain! You can still do what you want, but you just have to adapt it!
I strongly believe exercise is for everyone and there is a way to move your body without flaring your symptoms. Exercise also helps to reconnect with your body and feel in control of it, when at times it feels like chronic illness is running the show!
Check out the accessible Pilates ebook with safe exercises or work 1-on-1 with Zoe to help you reach your recovery goals with a tailored exercise program. You can also follow Zoe on Instagram for more tips.
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