What I am doing...
I would like to raise money for Invest in ME Research. As the carer of two disabled people I can't participate in the usual ways to fund raise - running, walking, climbing, cycling, parachute or bungee jumping etc.
So instead I aim to lose 8 stone in weight (or as close as I can possibly get) over the next two years.
~ I have battled with my weight for years. But, I now have a purpose, a cause, and with your support - I am ready to 'lose it' ~
I have the perfect reason - I am doing this for my child...
- In early 2017, after being very ill for several years, my daughter Arienne (now aged 14), was finally diagnosed with multiple chronic conditions. One of these is Severe Myalgic Encephalomyelitis (ME). (that's Arienne in the photo)
- Myalgic Encephalomyelitis is a horrible, much misunderstood, very debilitating condition. Every day symptoms include severe pain; overwhelming paralysing fatigue; serious hypersensitivity to cold, sound and touch; fevers; terrible nausea/vomiting; dizziness; insomnia, hypersomnia, and sleep reversal; balance and speech problems; significant cognitive disfunction; and (worst of all) very severe post exertional malaise/intolerance to all physical and mental activity.
- Outings are a rarity, and reserved for only exceptionally good days (or hospital appointments!). Most of those suffering from ME, like Arienne, are mainly housebound or bedbound. There is no medication, no treatment, no cure.
Did you know that people with ME are not allowed to donate blood - ever in their lives, even if they recover? It's true.
(*** If you are interested in learning more about ME - there is a fantastic new film on Netflix called Unrest (98mins), which was recently shortlisted for an Oscar. Alternatively Jennifer Brea's TED Talk (17mins) online is excellent. Or for those with a stronger constitution the hard hitting Voices from the Shadows is free online (30mins). ***)
Donations: I have no idea how realistic my target is - I just picked a random number. I am very aware that times are financially hard for many people right now, so I would be extremely grateful for literally any donation at all, however small. Thank you if you are able to do this - and if you are not, I would like to thank you for reading this far, which raises awareness in itself, which is very important to me too.
Why this is so important...
- Myalgic Encephalomyelitis affects 17 million people worldwide - including 250,000 in the UK, of which around 21,000 are children.
- In recent years, scientific research worldwide has proved M.E. is an extremely serious and disabling biological condition.
- As yet there is no cure, and no proven treatment, and a distinct lack of up to date education in the medical world.
- Medical science is on the cusp of coming up with a definitive diagnostic test - which could lead to treatment and possibly even a cure - and more funding is the key to this.
Invest in ME Research is an independent UK charity tasked with finding, funding and facilitating a strategy of biomedical research into Myalgic Encephalomyelitis (ME).The charity is run by volunteers - patients or parents of children with ME - with no paid staff. Overheads are kept to a minimum, and all funds raised to go to promoting education of, and funding for, biomedical research into ME. Their efforts are focused on setting up a UK Centre of Excellence for ME which will provide proper examinations, diagnosis, and, in time, treatment(s)/cure(s)!
ME Awareness Day is the 12th May each year. I will start my weight loss challenge on this date 2018. Hopefully on 12th May 2020 - with your help - I am hoping to be able to make a contribution to Invest in ME Research, an organisation doing massively important work to help provide a solution for #millionsmissing from their lives.
~ I know losing 8 stone is a massive undertaking, and might seem pretty unrealistic - and I am SO afraid of failing - but I know it's not impossible, in fact I think its definitely doable, and I have to aim high (and there is of course an added bonus - hopefully I will get to live longer, oh and save the NHS thousands of pounds, because I can turn down the bariatric surgery I have recently been offered). ~
Its going to be hard work, not least because I'm a bit decrepit these days (badly dislocated kneecaps, arthritis, hypermobility syndrome etc etc.).
But I want to do it for my girl, and everyone suffering from ME.
Wish me luck - and please share far and wide!