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Tuesday, 5 September 2017

Myalgic Encephalomyelitis.....what?!

Hi,

Shocking confession coming up......  When I started ME Foggy Dog I knew NOTHING about M.E. Well, nothing apart from my own personal symptoms, many of which had never been explained by doctors as being part of M.E. I went through seven years of suffering and not having a clue what was happening or what to expect. I had never sought help from any M.E charities or support groups because I didn't realise that M.E was a global issue or that the support was available if you knew where to look. In my defence, social media wasn't huge back in 2009 when I was finally diagnosed. I had been dealing with symptoms for so long on my own, with little support from healthcare professionals (CBT was their limit)  I just didn't look for help. I even had to Google what the M.E abbreviation stood for when I started Foggy, how ridiculous is that?!

When I had the idea to send a soft toy around the globe I figured it made sense to find a charity to fundraise for. I literally typed in M.E charity and the ME Association was at the top of the search
*Foggy* No....it's Foggy Dog!  (Foggy during his Ireland trip)
results. The word 'Association' made it seem to be the leading organisation so I chose them as the benefactor of my charity work. With hindsight, it could have been any one of a number of fabulous M.E charities in the UK. All M.E charities are working hard towards the same aims. Research, fundraising, awareness.

If I could start over with my illness, I think I would look for help as soon as I could. The constant process of new symptoms appearing often freaked me out! Having a support network would have been very helpful. New sufferers, I suggest you find your nearest support group (The ME Association will be able to point you in the right direction if you have no luck on Google).

Starting, and then managing, Foggy was a steep learning curve in terms of learning about M.E. I had previously had no idea that the individual conditions that had hindered my life up to that point could now be brought together under the same umbrella of M.E. These being Hypermobility, IBS, Migraines, light sensitivity, joint pain, poor memory, low blood pressure to name a few. I made it my mission to learn as much about M.E as I could. Thank you to all sufferers and support networks on YouTube, Twitter and Facebook. Through you, I now understand the weird, complex and individual nature of M.E. I 'get' the symptoms that I am not afflicted by. This knowledge makes me realise how 'lucky' I am to only have mild/moderate M.E. There are millions of people who have much worse symptoms than I do, and that drives me to do as much as I can for the M.E community. It's a massive frustration that my own M.E often gets in the way of helping as much as I would like to. So many ideas that I have for Foggy simply can't happen because of flagging energy levels, poor concentration or brain fog. I am a one-woman band and if I don't do it, it doesn't get done.

The fact that I wasn't an 'expert' at the beginning gives me hope that non-sufferers can also learn and become aware of the complexities of M.E. I keep my awareness raising simple and easy to understand so that the wider general public are able to understand our cause. Personally, I don't understand medical jargon that relates to my condition so how can I expect Joe Public to?

This is currently a period of change for ME Foggy Dog. I have successfully applied for a School of Social Entrepreneurs scheme. This means a grant (for Foggy's expenses) and one-years' worth of business training. All wonderful! BUT, I am slightly terrified. I want to throw myself in, embrace being a Social Entrepreneur and make massive progress for the M.E community. But, I have to keep reminding myself that I have M.E! I am going to be shown how to recruit people to help me with my workload so that is something to look forward to! It is a wonderful opportunity but one massive downside is the impact it will have on my energy levels. Lots and lots...and lots of pacing coming up!

Foggy news - He is back at Foggy HQ having just been on a cruise around Ireland on the P&O cruise ship Oriana. He is off travelling again on the 14th September. He will be going on a European cruise on the Queen Elizabeth! A lovely lady called Lizz is Foggy-sitting. She is a very talented violinist who is going to be performing on board during the trip. She is part of a group called Elektra Website. Foggy is a very lucky dog!

Love Sally
and Foggy OBVIOUSLY
xxxxx

Please donate via mefoggydog.org and help Foggy fund M.E research.

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