Who am I?
I am a chronic illness advocate, thrown into our community in 2008. I realised I wasn’t the only one experiencing the poor state of services for my health condition. I was shocked to discover that if you don’t advocate for yourself, then you can easily slip through the net or receive sub-standard care, causing irreversible disability.
Then I became bedbound with a page-worth of new, unexplained symptoms and little help in 2015. During the short times I could concentrate each week, I researched to try and find out what could be the cause. After 2 years, I found it. I pushed to get referred to the right specialist and finally got a diagnosis, an answer, which meant I could learn how to manage my condition.
It shouldn’t have to be this way.
Multiple sclerosis has been my clingy and unwanted companion for over 10 years. I became a zebra in 2018 when I was diagnosed with the connective tissue condition Hypermobile Spectrum Disorder (HSD). I have automonic dysfunction, POTS, small intestine bacterial overgrowth, and probable mast cell activation syndrome, which are common for people with HSD.
I now live my life completely differently. I learnt about how I could improve my brain and immune system health, the impact of the gut microbiome, how to build strength for my hypermobile and unstable joints, and how to use mindfulness and breathing exercises to hack my fight or flight system. This stuff is only just being recognised by our doctors, but the research is building and is fascinating. I find this so empowering.
What makes Melly tick?
I love to learn, research, assimilate and communicate. I’m a Doctor of Physics, so it’s no surprise that I Heart Science, lapping the stuff up. I’ve taught and supported university students, run projects as an IBM team lead and project manager and worked as a technical content designer and content strategist. I love to share knowledge, create evidence, understand, inspire, represent, build relationships and listen.
Why does Melly blog?
I blog to empower others. I want to share all that I learn on this chronic illness journey, in the hope that some of the many different lemons that life gives us can perhaps be made less bitter….maybe even turned into a fizzy sweet refreshment.
I hope I can add some sparkles of clarity, ideas and encouragement to your own journey. I hope that I can learn about the Life Lemons and Lemonade from your world that you choose to share; that you can shape this endeavour. I hope I can be of service. I’m all ears.
What else does Melly do?
I have my fingers in all sorts of advocacy pies! If you think I can help you in any of my roles, do drop me a line at [email protected]:
- voluntary researcher, survey designer, analyst and project manager, currently working in the MS Hampshire Project Group, a collaborative group formed to improve local MS services in Hampshire. The group includes, among others, the MS Society.
- Member of the People with Diverse Abilities group at IBM. I am currently leading an anti-ableism initiative in the UK.
- Part of a team of volunteers with MS who run Hampshire MS Support.
- Member of the European MS Platforms’ Young Person’s Network
- Shift.MS Champion
Licences and accreditations:
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