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. 

Red flags on a Monday morning…

Before 11am on a recent Monday morning, I felt in need of another weekend.

I was chairing a group of patients and carers, who meet to review transformation programmes locally.

In preparation for the meeting, I had spoken to the speaker to check timings and they were clear about what they wanted to discuss and how to do that. I was assured all was ok!

The meeting started well, and the first item on the agenda was introduced – prioritizing areas of a specific programme for in depth co-production engagement work. With 40 mins set for the item on the agenda, the first ten minutes quickly disappeared with an introduction on the process that got the programme to where it was that day, and the questions starting flying in… and my internal chimp mind (the italics below) went into overdrive and concepts of mindfulness went out the window.

This Floats My Boat: Project Report

My two passions are sailing and self-management support, and last year I got the opportunity to run a project that combined the two! It took the most inordinate amount of work and really tested me. But I am really proud of the outcomes of the project and the steep learning curve that I've been on. 

The aim of the project was to extend the opportunity to sail through ‘peer to peer’ support for people with severe disabilities/long term health problems across Dorset, working with Chesil Sailability sailors, health and wellbeing groups and the ‘My Health My Way’ service, so supporting people to develop their confidence and therefore their ability to self-manage and take up and maintain healthy behaviours.

Whatever the question, I'm not sure leaflets are the answer...

I am a magpie for leaflets... anywhere I go, I try and pick some up. This is primarily because of my role as a self-management coach, having a 'resource table' of leaflets at courses I run and generally wanting to keep in the know about what is available in terms of information and support for the people that I work with.  I am not normal in my approach to leaflets.

Q&A from Southampton University Seminar

This week, aided by some very simple technology, I contributed to a seminar at Southampton University with Trevor Kettle about the full scope and continuum of patient involvement.

It was a privilege to talk to the students with a very interactive Q&A session. The questions were really challenging - a good sign! So here are my answers to some of the questions asked...

Patient Leaders, Posters and Possibilities....

For me, a "poster" was something like this.... And a "paper" was something like this....

But in the world of academic conferences, they mean something very different. A poster is a very visual and accessible way of presenting a piece of work and a paper is actually a 15 minute talk! The point of these at conferences is to share great work and ideas.

Bittersweet #tipsfornewdocs

I have never been a fan of the word 'acceptance', in that particular form, suggesting something completed. I much prefer 'accepting' which gives a hint of an ongoing process. The phrase "acceptance is a journey not a destination" is one I strongly believe. Some days I feel more accepting of my situation that others, and that is just the (bumpy) path of recovery.

Yesterday was one of those days where I found accepting my condition particularly challenging. Having such a health focused twitter feed, I noticed a fair few tweets using the hashtag #tipsfornewdocs and #changeover. We are at that time of year when newly qualified doctors start working as F1s. 

If I had not been ill and had to stop medical school, that would have been me. I would be preparing to don my stethoscope as Dr de Iongh. But illness got in the way. Although many of the tweets were full of advice to cope with the many physical and emotional challenge of being a doctor (try being a patient!!!), and I love my work now, I still felt pangs of jealously and anger. If only I hadn't been ill... 

Getting back on my feet

As I knew I would be, I am paying the price with a relapse, having spend a wonderful few days in Paris. But having had a very active few days and a bit of travelling, this relapse is lasting longer than normal. Still not out of the ordinary, or any cause for concern, but I am sitting here thinking how I can going to keep going through it, get back on my feet and feel recharged at the end...

When physiotherapy is more that just exercises

This week, Mental Health Awareness Week, the Mental Health Foundation is raising awareness of the positive effect of exercise and physical activity on mental well-being. Reading about this (it is really so much more than just endorphins!), I am beginning to realise that when the Chartered Society of Physiotherapy talks about "physiotherapy helps to restore function", it means more than the function of limbs, it means the function of me as a person, both mentally and physically.

I have been very fortunate to be seeing an excellent neuro-physiotherapist for the past nine months or so. I feel compelled to write about my time with her, our journey together, because I believe that out of all the healthcare professionals I have seen, her input and support has made the biggest difference.

Feeling stressed about being stressed!

Living with chronic illness is stressful. For many reasons.

Medical appointments . . . trying to hold down a job . . . the symptoms . . . missing out on life while trying to 'pace yourself' . . . fears for the future . . . knowing that being stressed makes the condition worse (cue downward-spiralling circle) . . . running out of prescriptions on a Friday evening . . . knowing you have a relapse coming . . . etc. etc. etc.

Life Disrupted: Getting Real About Chronic Illness in Your Twenties andThirties (Laurie Edwards)

Life Disrupted was the first book on the #spooniebookclub reading list, and an excellent choice!
Laurie Edwards takes you through the things that matter to young people with chronic illness, and the experiences that define being young and living with chronic illness. As an author, she is a great role model - she not only works, but has created work for herself using her experience. In a culture where you are either healthy and working or sick and not working, Edward's story is a breath of fresh air and a welcome reminder that it is possible to be ill and employed!

Her short chapters make the standard late night reading 'oh just one more chapter' even more tempting, but also provide digestible snippets on each idea. It isn't a novel, and doesn't read like one, yet it doesn't feel like reading a reference book either - I breezed through it, turning each page to see a reflection of myself and my experience.

Keep Calm and Carry On (Self-Managing)

Being an Expert Patient Programme tutor is a pleasure and a privilege. It is a fundamental part of my own self-management - it gives me purpose and keeps me going. It is fantastic and moving to see people change for the better and their world open up to possibilities. I got an enormous amount out of the course when I did it, but when I recently finished a course, I found myself feeling very envious of the participants. They left on week six with such a moving wealth of optimism, hope and every thing else that comes with a fresh start and new leaf. Why was I envious?

Identity Crisis - who am I?

Who am I?

A Chiari?
The 'interesting case' in cubicle 4?
123456789 (my hospital number)?
My doctors 10 'o' clock?
A rattling collection of flesh, bones, co-codamol and Fludrocortisone?
Me?

Who is me anyway? To be honest, since becoming chronically ill, I am not really sure.

My identity is the thing I have grieved for the most since becoming ill. All of us are like jigsaw puzzles with lots of pieces that all fit together to make us who we are.Until a diagnosis of a long term illness is thrown into the box! Then, mysteriously those corner prices that are the foundations for the rest of picture to build from go missing . . . And then bits in the middle disappear.

Forgotten Conditions (2020Health Report)

As a patient with a number of rare long term health conditions, I can get quite frustrated with all the coverage and focus that the big common conditions get . . . Which was why I enjoyed reading the Forgotten Conditions: misdiagnosed and unsupported, how patients are being let down report by 2020Health so much, and identified with so much of its content!

The report summarised what sounded like a fascinating round table event that I wish has been to! Acknowledging that people with rare conditions are often "neglected and overlooked", it looked closer at the issues this particular cohort of patients face, as well as recommendations to address those issues. There is a risk that these patients will continue to "languish in the difficult-to-deal-with box", because of the complexities of these rare conditions, not to mention the additional issues caused by their low prevalence.

Further evidence of the power of empathy

The Sunday Times Style ran a short article this week about the power of empathy - only a paragraph hidden among other articles but very interesting none-the-less. Apparently the more empathetic your doctor the less complications of your condition you are likely to have. The study wasn't directly referenced (and I am yet tofind it on-line) but was on 20,000 Italians with diabetes. The patients with highly empathetic doctors had about two-thirds of the complications of those who's doctors scored lower for empathy. The rating of empathy may have incorporated other factors but the headline of the study is certainly interesting and suggests the power of empathy.

What excites me about this new trend in patient experience research is the relation of experience/emotions to hard and fast clinical outcomes - the things people measure and base commissioning and clinical decisions on! Instead of being discounted as "soft", the experience of patients is finally being seen as something that is note just a nice bonus but central to the medical aims of improving people's health.

Health Foundation Self-Management Resource Centre

I have recently come across this gold-mine of self-management resources on the Health Foundation website!

It is full of practical advise and great information . . . patient stories, project examples & tool kits, tips for doctors . . .

As well as being really useful for one of my current projects, it is enormously reassuring to see self-management being taken so seriously by such an influential organisation in the health-care sphere. The striking thing about the site is the focus on support - by definition, self-management is done by the patient (the clue is in the name!), but the Health Foundation have recognised that self-managers needs support to start, and to self-manage optimally. That is quite often the key to successful self-management, so great that support is given weight here. However, as a seasoned self-manager, its maintaining the positive self-management behaviour that takes serious effort! The clue is perhaps in the name, but when oneself-manages a long-term condition, it really is for a long time!

Finding the motivation to sustain all the little different things I do can, on days, daunt me so much it terrifies me. But being able to use sites such as this to remind myself of the positive benefits can help boost the motivation when I need it!

Life Impact Wheel

Wouldn't it be interesting (and possibly scary!) to know what the differences are between the patients perception of their their situation and the doctor's perception of it?
Doctors may be acutely aware of the health aspect of my life, but I wonder how much they appreciate the impact that has on everything else - finances, relationships, career, hobbies and friends...

Now I know doctors are human, and may well have been ill them  selves, or had close family members or friends suffer illness. At medical school I knew that your health impacted the rest of your life, but I didn't comprehend the significant of the impact of what doctors consider quite minor conditions. Neither did I appreciate it in the context of long-term conditions.

Making each party aware of what concerns the other could really help improve communication and team work between patient and doctor. Using a Life Impact Wheel could be a clear way to illustrate that . . .

Get both the doctor and patient to fill it in, marking on a scale from 1 - 10 the  impact the illness is having on various aspects of their life (work, happiness, social life, relationships etc.), and any discrepancies should be easy to see. The scale of the whole problem is also easy to see with this model - something that patients can find hard to convey to doctors.

It only takes a sheet of paper (or maybe a fancy app one day!) . . . but seeing the disease in the wider context of someone's life could make a significant difference. I'm not saying it will generate a cure, but it might help the doctor understand the disease and non-clinical ways in which they could help (or signpost to).

The Brain and Spine Foundation

Yesterday I had a completely novel and wonderful experience - I spoke to a qualified healthcare professional within minutes about a concern, had my concern and emotions addressed and felt reassured!
 Concerned about possible side effects with the Alexander Technique, I did not feel that I could discuss it with my consultant because he was a) impossible to get hold of outside of appointments and b) this was too minor to hassle him. My GP is fantastic but often refers me to my consultant for the specifics about my conditions. I am still waiting for a specialist nurse!

So, I rang the Brain & Spine Foundation, spoke to a lovely friendly neurology nurse who reassured me about trying this new therapy, checked that my condition was being appropriately managed and was enormously reassuring.

UPDATE: I have had another fantastically reassuring and comforting call with a nurse from the Brain and Spine Foundation, and have been reminded what a fantastic service they provide. Even when there is no answer to my difficult questions, they can reassure me, and help just by listening. They also now have a great forum for people to discuss all things neurological.

Being able to call and speak to an expert is an amazing service, and provides invaluable reassurance! Thank you Brain & Spine Foundation!