Optimising my self-management

I try and go on my recumbent exercise bike (a godsend for those of us who are orthostatically challenged like us POTSie's) regularly and normally manage several kilometers while reading the paper. I often wear my slippers and PJs.

So I do get on a bike, but what have I got in common with Froome and Cavindish et al of Sky Cycling Team? 

Time to Talk

It has been more debilitating that any of my physical symptoms (including loosing movement in all limbs).
The side effects from the medications have been among the worst I have had.

It has flattened my ability to look after myself and self-manage my other conditions. 

The other 'treatments' have been the hardest things to do.

Maintaining the helpful management techniques each day often take all my energy & willpower.
I can't look after my other health conditions without addressing it., 

I find it surprisingly hard to utter the word itself out loud when referring to myself.

Getting my head around 'functional neurological symptoms'

I have a number of firm 'medical' diagnosis to explain the bulk of my symptoms, but one of my symptoms is currently free falling into the category of "functional neurological symptoms" and I'm facing the medically unexplained head on. Gulp.
 

I say it like it is something new. It isn't. Ever since I have has these particular symptoms (intermittent weakness in my limbs), the doctors have been at a loss to any reason why. I think I knew deep down that there probably wouldn't be a nice tidy diagnosis to explain it, but it has taken a year or two for that feeling to bubble up from my sub-conscious. But here is it in clear daylight.  

The aim of this blog post isn't to indulge myself, but to raise awareness and try to explore some of the stigma associated with this area of neurology. I know there is low awareness and high stigma, because it has been a step learning curve for me and I have stigmatised myself about it frequently.   

Hugs all round

I have been really struggling to feel festive this year. A bad cold, a couple of rough weeks health wise and a very low mood few weeks certainly haven't helped. But what I have found to so hard in recent weeks is the relentless negativity around the NHS. I don't read the Daily Mail. This negativity is from my Twitter feed - a collection of health care professionals and NHS people who are normally passionate and enthusiastic but overcast with the media portrayal, privatisation and reality of our wards and clinics. 

I know the weather hadn't been great (we've had very few of those wonderfully crisp and fresh winter mornings) and that by Christmas every year everyone feels a bit run down. But this year feels more than that. 

Integration Pioneers, Personalisation and Self-Management

Unfortunately, travelling is something I find very difficult, and a trigger for my relapses. But fortunately, I have been lucky enough to work with some very accommodating and understanding people such as Don Redding from National Voices. I have been able to contribute and take part in conferences by video, instead of having to travel and risk a relapse to be there in person. If I'm going to be talking about self-management, its important that I self-manage myself too!

I was flattered and delighted when Don Redding asked me to contribute to the NHS Improving Quality Integration Pioneers event, and below is a transcript from my talk that I delivered via video to the event on the 3rd December 2013. This is also available via the National Voices website. 

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?! 

Transforming patient experience, WITH patients

I had the privilege of speaking yesterday at the King's Fund Transforming Patient Experience conference. The opportunity to speak about the role that patients can play in improving this has made me think more deeply about both what we can bring to the improvement process as patients, and what some of the challenges are. This post is a summary of the topics I covered in my talk. An abridged video of my talk is available here, thanks to the King's Fund.

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.

The worst kind of retail therapy

I have been shopping recently, and it was the worst kind of retail therapy I have ever done. 

I bought a wheelchair. A wheelchair that I am going to be using. 

And while it was far from therapeutic as an experience, it was also far from simple...

There are so many things to consider when it comes to getting a wheelchair - seat width, depth and angle, type of footrest, height and style of back support, type and height of arm rests and the type of wheels, their heights and camber and the tipping point of the chair. It has been a very steep learning curve. But there have been some really good resources that have helped me along the way, and that's the point of this blog post really! 

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...