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. 

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.

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! 

Happy Birthday NHS!

My Twitter has been full of #NHS65 tweets with a range of emotions and sentiments. We all know the NHS has issues, but I also think it is equally important to step back from all the headlines and look at what we have to be thankful - and a 65yr birthday seems an appropriate time!

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.

The Anatomy of an appointment

This post is a bit of an experiment! This is a diary of the days and weeks before and after my annual doctors appointment with my consultant. I wanted to share it because "sense of perspective" is one of the hardest things I find about my appointments. I hope the doctors out there find it gives you another perspective on appointments. For patients out there reading this, I hope you find comfort in realising you are not alone in the all-consuming emotional roller coaster that envelopes each medical appointment.

D-Day!

 Having spent some time at medical school BC (before conditions!), I attended many appointments and didn't think much about them either before or after - it was just another 20 minute slot in a hectic day. . . As a patient, my perspective could not be more different - I have one appointment a year and it a really significant event, with a build up and aftermath to contend with and a barrage of emotions to go with it. This post is to illustrate what happens when I have a doctors appointment, my perspective, so here goes . . .

Patient Opinion and giving feedback

I had the best Christmas present this year (on the 27th December!), when I visited the orthotist at Dorset County Hospital. I was given a neck brace, which signifies the first tentative steps towards getting back on the water - a very exciting prospect for a sailor land-locked by doctors!

Whilst I have experienced very frustrating appointments from the NHS, I have also been privileged to experience first hand a brilliant NHS too. And I feel very strongly that, when appropriate, positive feedback should be given.

All I want for Christmas . . .

Having spent an afternoon making Christmas cards, and had the annual "what do you want for Christmas?" question from a number of relatives, I have been thinking a lot about Christmas and what it means when you live with a long-term health condition.
So what do I want for Christmas? A new pair of legs that work, some eyes that can always read, a head that doesn't hurt, an arm that doesn't decide to stop working intermittently and a mind that isn't paralysed by depression for starters . . . . Before I even get onto Doctors that see me and medications that work . . .

UCL Lunch Hour Lectures

I have recently discovered the UCL Lunch-hour Lectures - 40 minutes of fascination over lunch! Last week I listened to Nick Barber (nick.barber.org) talk about medicines - "Can't take, won't take - why patients don't take their medicines", and it was the best lunch I have had for a while!

In addition to being fascinating, Nick presented it in such an engaging way - using my favourite tool, patient story and personalising it! For example, he opened by rephrasing the title from patients to "we", since we are all patients, so brought it home and made it relevant!

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!