what do I do?

This week, I’ve been recovering. Yesterday was one of those days where I got up in the late afternoon, had a long hot bath, put on fresh pjs, and took my hot water bottle to the sofa, before going to bed. Once upon a time, I’d have been upset by that. Now, it’s just one of those days. Not even a surprise, after some of the busyness.

I regularly post about the importance of support groups. Ditsy and I cause chaos across the six counties as we meet old friends and new friends in a space for PSP chat. Families, carers, people living with PSP, gathering to together to share and support. Hugs and tears are frequent but optional. It takes courage to come to a support group for the first time, to cross the threshold. To admit a need. To display vulnerability to strangers. The strength of a support group is that we all know. We have all been that bewildered. We have all been that anxious. We have learned the strength we can gather from each other. It’s not about the dismissive ‘tea and sympathy’; it’s about creating a welcoming, supportive, space.  A diagnosis of PSP is baffling. It’s a progressive, terminal, neurological condition that few have heard of. Finding someone else who’s familiar with it is like finding an oasis in a desert. A resource. A relief. At last. We are not alone in this.

 with Ditsy & MrD
with Ditsy & MrD

1 in 12 of the population is affected by a rare disease, and Northern Ireland Rare Disease Partnership work to influence strategy and policy in the UK and the particular implementation in NI. Last week, a crowd of us gathered to plot, plan and create. We have things to do- redesign our website, meet the NI Assembly Health Committee, participate in a Human Rights investigation, plan a big day out at the DisabilityPride event, keep on talking to commissioners, present at conferences, be creative about telling the stories. We are all volunteers. We’ve all had to learn something about rare disease. We have differing skills and experience; we work collaboratively. There’s always more to do. We do what we can. We’re doing more than I ever thought possible without significant funding or staff. Volunteering is amazing.

Also last week, I gave a talk to the Board of the local Public Health Agency. I talked a bit about PSP, a bit about the rare disease partnership, and quite a lot about the importance of working collaboratively with patients. Our Health and Social Care systems have a legal requirement to promote Personal and Public Involvement, but too often it’s seen as an add on or somebody else’s job. So I brought my thoughts and my shopping into a meeting of the big wigs. I didn’t show off my new shoes, but I got the impression they don’t get presented with Dr Seuss images all that often. That’s the value of a different perspective.

 

the lorax

Does it make a difference?

I think it does.  To an individual, to isolated communities, to people who recognise that their voice can have an impact, to senior managers to remember that they’re talking about people, not just numbers or conditions.

It makes a difference to me. I have a reason to get out of bed. I have people to talk to. I have support and opinions and I can make the big wigs listen to me. (Pause for a moment to feel for the big wigs.)

I have a chronic illness. I lose days to sleep and vagueness. But the little bit I can do reminds me of the mouthy busy bod I used to be, and that’s quite fun. I’m me, not ME.

13 thoughts on “what do I do?

  1. Oh yes, you always hit the spot. Yesterday evening here we had a meeting re “Depression, addiction, stigma” (fun topics?) – input from two who have ‘come out’ and general discussion. I am bringing away the NEED for all of us to admit vulnerability, accept and live it, and how different that is from the messages about not giving in to self-pity etc which isn’t very helpful, but neither is toughing it out.
    I love the way you tell it how it is. I love the way it comes across, willingness to connect, be with and value others, as they really are.

    1. Admitting we need help and asking for it, are extraordinarily difficult to do. All that fear of failure, letting people down etc. We all need to get better at it.

  2. Insightful, you. Does support help? Hell, yes. Does everyone get it? Hell, no. But blame does not help, insight does.

    No matter where one is at any given moment. Look out and you will see a sea of ‘happy shinning people’. But , glancing about, does detect the hidden broken bits. We (uses ‘we’ cause I cannot bring myself to use ‘them’ and ‘they’ as we all are together) more broken than we are whole. Keep doing what you are doing, it helps, it has to.

  3. In addition to all the more personal face to face support you are involved in the Northern Ireland Statement of Intent for the UK Strategy of Rare Diseases is proof of how far the NIRDP have come. Another milestone reached. Keep it up but don’t wear yourself out.

  4. One of the most refreshing things about following someone’s story for a long time is seeing how much they’ve changed. Three or four years ago, you got so frustrated by these lost days. You still do, but you accept them now and do almost everything you used to do in between, plus advocating for people with ME all over the place. I am so proud to know you, Fiona, and I hope to really meet you someday.

    1. Somewhere along the way, Andra, I realised that frustration uses a lot of my limited energy. If I can just roll over and sleep, I’ll do that. If I can’t sleep… ALL the frustration :)
      Thank you Andra, I look forward to it.

  5. I admire advocates! And that you set aside valuable time when your own energy is not unlimited to advocate and support others is a reason to feel very proud. I’m certain you often wonder if it’s worth it, but whenever you feel any doubt that you make a difference, refer to this wonderful blogpost and remind yourself of your importance. ME is a frightening diagnosis, but you, with your beautiful smiling face, undoubtedly give others a large dose of reassurance, Fiona. ox

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