It’s an awfully long time since I’ve been able to work. It has taken an equally long time to deal with the feelings of failure associated with that. Feelings of being useless, a liability, being judged, unable to connect with people, having nothing to offer the world. I kept wanting my life back. Even a shadow of my life. A wee hint of ‘normality’.
I found blogging and volunteering. Ways of relearning how to connect, explore ideas, have discussions, make friends. Ways of making a difference.
I’m still vague, unreliable and deeply fatigued, overwhelmed by people, colour and noise. I’ve learned something of how to manage. I have a new ‘normal’ that involves a lot of lying down in a darkened room, rarely driving or being out after dark, and a haphazard approach to domestic activity. The McSpecs muddle through with this. Girl1 and Girl2 know that I used to work full time, but they don’t really remember it. The pyjama clad, sleeping in the afternoon, version of me is their normal.
Volunteering is something I can do for a few hours when I’m awake, or at the computer. During this month, I’ve used those hours to attend events, to try and update myself with what’s going on in our health and social care services. I can learn something, I can raise issues around rare disease, and I can express a patient view. I’ve followed other events on twitter.
It’s clear that there is an issue beyond listening to the patient at such events. In many cases, an issue is actually getting patients in the conversation to begin with. From not thinking that patients might be interested in joining in, to inaccessible language, to prohibitive fees- patients are not being considered in the design of events. While there is talk of being ‘patient centred’, there is little sense that organisers have, so far, applied this principle to their work.
Oddly, the world does not yet work the way I want it to. Just because I’m convinced of something doesn’t mean that everyone else is. I’m not even a benign dictator. I have to encourage, persuade, collaborate, consider. That’s a process and a half, but maybe, just maybe, the adventures I’m about to embark on may help.
Adventure 1: I’ve been accepted on to a course, Leading in Partnership, being run jointly by the Patient and Client Council and the Health and Social Care Board. Along with friends and colleagues from our charity and patients I don’t yet know, I’ll be learning more about how our system works, and how we can work -in partnership- on promoting patient involvement (yet to be defined). Isn’t ‘partnership’ an interesting word? I’m looking forward to getting started.
Adventure 2: On 5th November I’ll be co hosting an #irishmed twitter chat on rare disease. A wonderful chance to learn from the world, raise issues and share learning.
Adventure 3: All those ‘oh, do we need to consider patients?’ events were annoying me, and, riled, I did something I wouldn’t have done even a few weeks ago. I applied to speak at a conference, and persuaded @imonlyslightly that she’d like to also. Yesterday it was confirmed that we’re going. I’m too excited to panic yet, but be prepared bloggy buddies, you know it’s going to happen. The Future of Health is a huge event in London (get us, jet setters). The biggest of wigs in health will be there. Journalists, broadcasters and awesome people I’ve heard of will be there. And us. EEK. “But, but, how?” you may ask.
The difference between this one and all the other ones was simple, yet huge: “we want to involve people with experience of living with long-term conditions…”
“We welcome expressions of interest from any patients or carers interested in helping to partner with us to deliver a truly patient-focused conference.”
“We can offer:
- Support to help speakers create presentations, to develop points and open ended questions for discussion and debate
- Mentoring support
- Travel expenses
- Help with planning / booking transport
- Hotel accommodation for the night of 20th November near conference venue
- Quiet space at Future of Health 2014 for those times when you need a break
- Complimentary food and refreshments
- Great networking opportunities “
I was dancing with excitement last night. “It’s happening. They want me. I put my hand up and look what happened. Me, I’m brilliant. Look where bravery will get you. Won’t Sheryl be pleased? I’m great.”
After a lot of very little steps, the three adventures that came to light this week seem to make a big leap for me. Now to use that confidence burst and that learning positively.
(Shaggy dog stories, book reviews, baffling the brother, random rants and other regular ‘features’ will undoubtedly return when my head stops spinning.)