Our post today comes from Anya de Iongh who authors The Patient Patient blog. Her inspiring story shows how helping others can sometimes be the best medicine for ourselves. You can find Anya at her blog and on Twitter she goes by @Anyadei.
Anya’s Story
As a self-management coach, I often talk to the people I support about managing our health conditions within the day to day lives that we lead. For me, this is about two things – not having our days determined by our health, whilst also adapting what we do according to our conditions – a difficult balance.
So for me, with my long term health conditions, Elhers Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS) and a Chairi Malformation along with residual effects of Guillane-Barre Syndrome (GBS), what does a day look like as I ‘manage’ that with being a patient leader and holding down a part time job as a self-management coach?
Morning start slowly since this is when my legs are often at their most painful. It makes facing the day seem like a mountain ahead of me, but a little scroll through Twitter keeps me feeling connected with other ‘spoonies’ (see The Spoon Theory).
I try and avoid too many early starts with work, so often start with emails while eating breakfast, to enable my autonomic nervous system to get settled. Working from home, using Skype and other technologies, mean that I can contribute to national programmes and lecture and give seminars in universities without having to risk exacerbating my symptoms with travelling too much. Being able to have a career and professional identity is a pretty good medicine – no RCTs done yet but trust me! Often, I do these in my PJ’s – having a shower half way through the morning is a way I pace myself. The support of colleagues and bosses is essential for this.
If I have been out during the day, either running a course or a clinic of one to one support as a self-management coach, or other meetings, coming home when I’m finished often means nap time! I might find myself working in the evenings, but juggling the hours around like that means I can cope, still get the work done and the ‘work’ needed to manage my health conditions. This has proved particularly useful when trying new medications and battling with the almost inevitable side-effects of even more fatigue!
In between all of this, I have to schedule what seems like far too much trying to get repeat prescriptions each month which always seem to have some sort of problem or delay. I often joke with the people I support that being a patient is a full-time job, but some days it doesn’t feel like a very funny joke. Regular walks and stocking up at the supermarket get slotted in – as long as I have time to recover afterwards and enough energy to go in the first place. I’m still waiting for a tablet or pill that addresses the fact that my ‘get up and go’ sometimes ‘gets up and goes’!
Like anyone with good health, enjoying myself is important. For me, this involves seeing friends for walks and sailing with my local Sailability group (Chesil Sailability). Although physically, these leave me more fatigued and increase my pain, they are wonder drugs for my mental health. And managing my health is just as much about that as the TLA I listed above.
As everything I have described above, managing a health condition is about the symptoms that affect our functions and the knowledge, confidence and skills we have to cope with them. Pharmaceuticals are an undeniably important part of this – beyond the biochemisty, its about my understanding of them, the trade off of side effects and how they fit in with everything else we need to do to manage our health, and the support we get to do that.
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Thank you, Anya, for sharing your positive insights with us!
If you have a story to share with our readers about participating in a clinical trial, overcoming adversity or living with a chronic condition, please let us know. We’d love to have you guest blog for us. Guest blogging helps others outside of your disease area learn about your struggles and discover your passions. We will help promote your website and social media accounts, as well as your favorite advocacy group. Contact us to get started sharing your story now!