And she goes on

as if I’ve never been away- Thursday

The 8am train to Dublin. A large coffee and a cinnamon Danish.

I used to do this journey regularly. A day working elsewhere; meeting other staff, feeling the buzz of a larger city, the confusion of a different currency.

I’d have the meetings, walk back through St Stephen’s Green and down Grafton St. Maybe not the most direct route to the train station, but the route I enjoyed. I was confident, relaxed. I knew what I was doing.

Now… a world defined by chronic illness. Responding to different challenges. Limited energy levels. A whole new role. My confidence is developing, but I’m heading into a situation where I expect to know nobody. It’s as well I’m too tired to worry about it. If I had the energy I’d be anxious.

Not that long ago I wouldn’t even have tried this. I’d have hidden in bed, cowed by doubt and defeated by the tired. Now I know the volunteering can be mentally energising; I value that so much (somebody actually thinks my input is worth hearing!) that I’ll put up with some of the exhaustion without complaint.

It has been a long week. A very busy week, with travelling and thinking and fun. A collapse is imminent.

Oh well. Today, right now on the train, I’m remembering.

And feeling like myself.

properly awesome

We all have them.

The days when we don’t want to , or can’t, get out of bed.

The days when other people are annoying.

The days when we’re sore and tired and miserable. And bored with it.

The days when we need a kick in the butt, or a healthy shot of inspiration.

I know I will never, in my wildest dreams, be able to do what this woman, 40 years my senior, can do.

But I can watch and wonder and dream.

.

with thanks to grannymar for the link

step 1: create a charity

Life experiences, circumstances and interests shape who we are, who we aspire to be, what we want to be doing with ourselves.

I’ve worked in education, in youth training, for a criminal justice charity. I was a human sign post/ volunteer receptionist at the regional cancer centre. I’m still interested in the issues affecting those sectors, but they’re no longer my focus.

Now it’s all about the rare diseases. We’d never heard of Progressive Supranuclear Palsy until Herself was diagnosed with it. The consultant’s face was sombre, but he didn’t give us any other information. The GP suggested we look it up on the internet.

As it turned out, we were lucky. We found a helpful and informed charity, with a proactive member of staff living locally, a support group and a telephone helpline to a specialist nurse. There are 20- 30 people in Northern Ireland diagnosed with PSP- what if you were the only person in the British Isles with the condition veryrareindeedgobbledygookitis?

There are about 6,000 rare diseases, those with an incidence of 5 per 10,000 or less. One in 17 people will be diagnosed with a rare condition at some point in their lives. Collectively, rare diseases are not rare. Unfortunately, that’s not how it feels when a loved one is diagnosed with a disease nobody’s ever heard of.

Last year, some volunteers and staff from the local health charities for rare diseases approached Rare Disease UK and the Patient and Client Council to see if they could support us in exploring a closer working relationship, to see if there was value in working in concert to address some of the issues affecting us all. We had a workshop and other meetings, and identified 6 priority areas for work. We held a joint conference for nurses and allied health professionals, and had briefing meetings with some politicians.

In January we signed the Northern Ireland Rare Disease Partnership into existence as a company. That means NIRDP will be able to be recognised as a charity, be responsible for accounts and apply for funding to carry out some of its work. 29th February, being a rare day, is Rare Disease Day, on which NIRDP will be launched, along with a PCC report on experience of diagnosis of a rare disease in NI.

We want to support families; to educate health and social care providers; to lobby and build key relationships so that rare disease issues are fully taken into account by policy makers; to ensure better co-ordination of services, and access to specialists throughout the UK.

We want to change the world. Or at least how some people experience it.

We can only do it in small steps, but we’re starting.