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Monday, 25 April 2016

The Oak and the Reeds

Hello,
I've been pondering a possible name for M.E sufferers if M.E was to be 'rebranded'. Personally, I do not call myself a Spoonie for two reasons. 1. Spoonie sounds cute and fluffy; there is nothing about this illness that is cute and fluffy (though it is a great way to explain energy levels) 2. It's not M.E specific. It was originally for Lupus sufferers and has been eeked out to cover anyone with a chronic illness.  I am also not a Warrior or a Fighter. It is impossible to fight against this illness. Yes, we have resilience and 'bounce-back-ability' but, as we all know, if you start to fight against it it will come and bite you on the bum two-fold! Survivor also gives the wrong message, although a few people have died as a result of M.E symptom complications, it is extremely rare to die from M.E. However, those people who recover from M.E and get to the other side often describe themselves as being a 'survivor'.
So, I started thinking about alternatives. I was thinking along the lines of Walt Whitman's Leaves of Grass (Blade of grass - BLADE sounds cool! No matter how many times it is cut back it regrows and flourishes) but stumbled upon this Aesop Fable (Found at http://fablesofaesop.com/the-tree-and-the-reed.html ).
The Oak and The Reeds
A Giant Oak stood near a brook in which grew some slender Reeds. When the wind blew, the great Oak stood proudly upright with its hundred arms uplifted to the sky. But the Reeds bowed low in the wind and sang a sad and mournful song.

“You have reason to complain,” said the Oak. “The slightest breeze that ruffles the surface of
the water makes you bow your heads, while I, the mighty Oak, stand upright and firm before the howling tempest.”

“Do not worry about us,” replied the Reeds. “The winds do not harm us. We bow before them and so we do not break. You, in all your pride and strength, have so far resisted their blows. But the end is coming.”


As the Reeds spoke a great hurricane rushed out of the north. The Oak stood proudly and fought against the storm, while the yielding Reeds bowed low. The wind redoubled in fury, and all at once the great tree fell, torn up by the roots, and lay among the pitying Reeds.

I believe saying 'I'm a reed' is more appropriate than Spoonie, Warrior, Fighter or Survivor. Reeds bend with forces of nature but recover once the storm has passed. We do not break or fight against the elements but adapt to our environment in order to survive. Maybe a nickname change will help non-sufferers understand the nature of the illness better.
Love,
Sally xx

Thursday, 21 April 2016

Why ME? What makes me so different?

Hello,

One of my internal questions that has the ability to drive me to distraction is 'Why me?'. So many of my friends regularly catch bugs and infections and get back to their pre-illness lives within a short period of time. I have fabulous friends, many of whom are physically fit, driven professionals who work long
hours and burn the candle at both ends. So what made me different to them? How come Myalgic Encephalomyelitis (M.E) chose to mess around with my life and not theirs?
Let me stress - I would not wish M.E on my worst enemy let alone one of my wonderful friends.
I have lost count of the number of times I have told friends to not push themselves too hard or to not rush back to work too soon in case it causes further repercussions. In most instances, my advice is ignored and they just recover and move on. I think, perhaps, this is the reason many don't understand the nature of M.E. How can it be caused by a virus or injury that anyone around the world could have had? This is why research is needed. There is something in me, whether that is in my DNA, gut or other part of my body, that didn't recover post-virus. 

No tangible link has been established amongst sufferers and so, at the present time, I believe it could happen to anyone, anywhere. So, I will continue advising friends to take it easy and to be kind to themselves because it could happen to anyone.

Love

Sally x

Please help fund desperately needed research. Donate via www.mefoggydog.org. Thank you xx

Saturday, 16 April 2016

Shoes please

Hi,

Foggy is currently on his way to Brussels for some more (non-UK) Europe sporty fun before he jets off to the other side of the world to make Australasia the 4th continent to be Foggy'd!

I am making the most of the peace and quiet (he may be tiny but he likes to be centre of attention!) to tell you all about a global initiative that is taking place on 25th May 2016. ME Action are organising the event and these extracts from the website explain it better than I could:

'#MillionsMissing is dedicated to the millions of Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) patients missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease.  At the same time, millions of dollars are missing from research and clinical education funding that ME should be receiving. And millions of doctors are missing out on proper training to diagnose and help patients manage this illness. ....... #MEAction is sponsoring a community-organized protest at the Department of Health and Human Services (HHS) in Washington, DC. ME patients, advocates, caregivers, and allies will join together to protest of the lack of government funding for research, clinical trials and medical/public education, leaving ME patients without relief.  Due to the nature of ME, we anticipate that many will not be able to personally attend and that is why we would like to invite patients to attend the protest virtually'  (Taken from http://millionsmissing.meaction.net/)

I encourage all ME/CFS sufferers to participate in the shoes installation. Let's make this event as successful and unmissable as we can. Click the link above for details on how to participate. It is a GLOBAL event and we should all work together on this.

Personally, I am sending an old pair of beloved dancing shoes. ME is making me miss my dancing nights out. What are you missing?

Sally xx




Sunday, 10 April 2016

The 'Others'

Hi,

From day one of Foggy's creation, I have ensured that his campaigns are positive to ensure maximum engagement with his Followers. My theory is that even people who know nothing about M.E, it's history and current internal politics, will love Foggy and learn whilst having fun. At the moment, there is a trend on social media to highlight the very real, negative points of M.E in the hope that, as with cancer, non-sufferers will see how dreadful the illness is and empathise/sympathise//understand/help create change. However, I strongly believe this is not the best way forward.

The 'Others' refers to people that have not been affected by M.E, whether as a sufferer, carer, relative or friend. I'm giving them that title because of the inclusive bubble we seem to have created around ourselves that excludes everyone else. I agree 100% that forums and networks are very important for sufferers and carers for support and information reasons. Unfortunately, these sites can be so inclusive they do not help to raise awareness externally. Seriously, do you think that someone who wants to learn about M.E will spend longer than 2 seconds reading the latest arguments and social media bickering about what M.E should be called or whether the latest research was a waste of time? Negativity does not lead to engagement.

If we are going to successfully progress forward in terms of awareness and subsequently research funding, We must make M.E as inclusive and accessible as possible. Stressing the basics rather than the intricacies of an already extremely complicated and multifaceted illness will help 'the Others' understand the phenomena that is Myalgic Encephalomyelitis. As a community, we are very good at supporting each other and offering a caring word when desperately needed. However, we seem to be alienating the very people that we need help from whether that is financial or emotional. Many of us can't work and are on benefits. It is a fact that most charitable fundraising projects come from sufferers, carers or our families. We need to widen that circle to end the constant struggle to raise research funding. 

It is bizarre to me that, in the main, the people with the least energy (sufferers) are having to do their own fundraising to pay for research into their illness! We need more of the 'Others' to understand and appreciate that it could happen to them. That M.E is so common, there is a kind of 6 degrees of separation, they WILL know someone who has been struck down with it. Whether that is a relative, friend, work colleague or someone they knew at school. The cause is not known so no preventative measures can be taken ie. diet, lifestyle, drugs. With that in mind, everyone should be concerned that the seriousness is not being addressed by many governments and health authorities. 17 million people worldwide is too big a number to be ignored and misunderstood.

At Foggy's launch back in July 2014, I was the only M.E sufferer in the room. The 'Others' were in the majority. Overall, I have encountered a willingness to learn and empathy.
They all wanted to learn about the illness, since then these lovely people have been immensely supportive and have helped with my fundraising. This is an example of my reasoning. Inclusion of everyone will only lead to progressing forward. Open up and let people in, yes there are doubters and negativity has to be endured from some quarters but on the whole support and a willingness to learn can be experienced too.

It has repeatedly been said to me that donations are low because sufferers don't have much spare cash. It is a fact that the 'Others' made up more than 80% of donations during the last campaign. This, again, stresses my point that these fabulous people should not be excluded from our cause. True, they do not understand 100% of the illness but then does anyone? All of us experience a wide range of different symptoms to varying levels. It is hard for us to understand them let alone someone who only sees the 'invisible illness'.

Love,

Sally xxx

Wednesday, 6 April 2016

Latest Foggy News!

Hi!

Foggy is STILL on his way to Cape Town. We expected it to take a while due to the postal system that is being used. Rest assured, Foggy will have a whale of a time in Cape Town with Selena and photos will be published as soon as they are received.


There are a few plans to tell you about, here goes....


#FOGGY2SICILY  - Foggy is going on a well deserved holiday!



Jo Meade and Jeroen Thijs (and Harvey the dog) make up YEO-148YEYO-148 (see http://www.yeyo-148.org/). They have kindly offered to Foggy-sit Foggy in Brussels at the end of this month. Jo has said she will take Foggy to Gaelic football training during his visit. Foggy can't wait!

Jo and Harvey LOVE Foggy and want to give him a holiday at the end of this campaign. So, in July/August Foggy will be joining Team YEYO-148 during their trip to Sicily. WOW! Road trip!!
Foggy in Sicily - Christmas 2014
 
Take a look at the web page! http://www.yeyo-148.org/foggy2sicily.html You can see photos of their exploits on this web page and on Foggy's social media channels. Foggy's JustGiving page will include #FOGGY2SICILY as part of Team Foggy's page and you will be able to donate to ME medical research and appreciate Yeyo-148's efforts as they make their way through Italy. 

Thank you to Jo and Jeroen for thinking of Foggy and offering to make his summer one to remember!

Foggy's itinerary between now and June 16th.

April - Cape Town (Africa! - Continent number 3!), Brussels
May - Australia (Australasia - Continent 4!) Adelaide (May 12) and Melbourne
June - Ontario  (Americas - Continent 5!!!)

Bucket List


Don't forget Foggy still has a bucket list to work on! Bucket list blog. There are a few days scattered in between trips so please do think about how you can help Foggy's dreams come true, I'll try my best to fit you in!

May 12


May 12 is International ME Awareness Day. I had every intention of doing something to raise additional awareness this year, as I did last year by giving an awareness talk. However, I have decided I need to be kind to myself and let my body recover from the inner ear infection I am currently suffering from. Labyrinthitis has really taken it out of me and I want to give myself a chance to get over it without pushing myself to be well for an event. I had planned to show Forgotten Plague in one of my local cinemas. Perhaps that is something you would like to do instead? Just a thought!


Progress

I have been disappointed with the fundraising for this campaign. I have put an enormous amount of effort into the day to day running of Foggy and yet donations are not on a par with the previous campaign. Foggy now has nearly 4000 followers (three quarters are non-sufferers). If you all donated £1 (or your own currency) we would nearly be at our target. For those people that are saying they donated last time around and don't feel they want to this time. That is completely understandable. 115 people donated last time, what about the rest of you?

Love Sally xxxx