The 48 hours when I didn't think self-management worked...

I had about 48 hours mid-2016 when I honestly thought self-management didn’t work. Everything that I had based the last 5 or so years of my life (personally and professionally) was a lie. Those 48 hours painfully passed, and left me with a reaffirmed understanding of self-management and belief in the process.

That invisible way stress accumulates, that way you start to be aware of it and think that you can cling on until X or Y and then you can rest and sort it all out… and then very suddenly, you can’t and it all crashes down around you. I had what I can only describe as a the worst panic attack, but it was nothing to do with panic and more a depression attack, but with all the standard panic attack symptoms. Typical for me, with my history of major medical events, this happened whilst I was out sailing. Whisked away by my (utterly brilliant and unconditionally supportive) parents to my grandmothers house, a real safe haven for me, I was in shock and quite numb. Everything had just got a bit too much, and I had burnt out. 

The cost of emotions on our spoons

Before reading further, if the term 'Spoon Theory' is unfamiliar, please read this post by Christine Miserandino!

I use the Spoon Theory personally to help me think about what I do each day and how I use my energy. I also share it as a resource in my role as a self-management coach with the people with long term health conditions who I support.

Recent personal experience and that of the people who I support has made me see that I need to consider more broadly how I use my spoons. This has been a very interesting thing for me to be aware of - seeing as I spend so much of my time talking about (in less theoretical terms) the biopsychosocial model. Managing my health is about the physical things, but equally, the emotional and social (or day to day) impact that my health has.

Tate Modern, Mattise and self-management

A few weeks ago, I treated myself to the Matisse Cut-Out exhibition at the Tate Modern. My interest with the exhibition began with a quote of his I caught in a weekend paper, saying "only what I created after the illness constitutes my real self: free, liberated." Fascinated by the idea that someone could create their best work when ill, I booked a ticket.

Sink or Swim... or Sail!

Sailing was a central piece of the jigsaw of my life. Being on the water, socialising with sailors and everything about it defined me. Following a particularly bad relapse triggered by a neck injury that happened whilst in the middle of the Solent, my doctors (who incidentally didn't sail) said a categorical NO to sailing. The jigsaw that made up my life was falling apart.  

From where they were sitting, and having had to pick up the pieces of me being transferred from a boat in the marina to dry land then whizzed with blue lights into A&E strapped to a C-spine board unable to move or speak, sailing seemed risky. I agreed with them. 

But I also began to realise there was a risk to my mental health if I didn't go sailing, as I plunged into despair and depression. Then I watched the Paralympics, and realised that there must be a way. The simple mechanics of what happened to my neck (which because of the extra bendyness caused by the EDS and my Chiari squishing my nerves a bit) could happen if I trip walking along the pavement. Just living seemed pretty risky, but I wasn't going to stop doing that was I?! 

Extreme contrasts: a life in two halves

I have recently commented on Twitter a few times that I felt like I was leading two very different lives, as a patient and as a professional...

Talking to others patients who are working in this area, I don't think I am alone with this feeling. Anyone (in whatever line of work) will feel separation and connection between their personal and prefoessional life, but I think the separation and connection are both more extreme and somehow simultaneous when working in this area.

Personal Reflections on The Future of Health

The two days I spent at Future of Health (and the following few days recovering) have been the hardest, busiest, most challenging, intense, overwhelming and exciting couple of days I have ever had.

Let me explain...

Hearing it for the first time all over again

I live with several long term health conditions.

I am going to be living with these conditions for longer than it takes to get to the edge of the solar system (according the recent NASA Voyager announcement at least!)

Whilst I know that my conditions are neither terminal nor degenerative, I know that I am going to live with them for the rest of my life. 

I introduce myself to students I am teaching, fellow patients I support via Expert Patient Programmes and delegates I talk to at conferences as someone who lives with long term health conditions. 

It is even on my Twitter bio.

So why, when my doctor mentions that my conditions are "long-term" or that I am going to having to face this for the rest of my life, does it feel like he is telling me for the first time again?! Why does my heart break all over again, and all those emotions come flooding back?

Do you believe in Silver Linings?

I recently spent a quiet Saturday night in catching up with a friend on Skype who was complaining about how expensive having a social life was in London. I half jokingly said "at least that's not a problem I have to contend with living with my parents in Dorset" (where a rare sheep breed is more common a sighting than a young person!)
"Silver linings!" She said!
You either have to laugh or cry, and I chose the former.

When I lost a job on health grounds over a year ago, I knew that there would be a silver lining somewhere, and I made it my mission to go and hunt it out, to make it as thick and silvery as possible. It took a while, but I found it!

Suffice to say, I believe in silver linings, just like Pat in Matthew Quick's The Silver Linings Playbook (the #spooniebookclub read this month). As a book, it was everything I needed it to be: escapism, a quick and easy read, thought-provoking and heart-warming.