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Sunday, 1 July 2018

Last Few Days

Hi,

Why does this always happen?

Every time a Foggy campaign comes to an end, I promise myself time off once the campaigning has come to an end. As you all know, I have mild M.E myself and this advocacy/campaigning malarky can be exhausting (on top of my usual/bog standard M.E exhaustion that we all feel every day). By the time each campaign ends I am usually frazzled and wanting to hide under my duvet for a few months.

Unfortunately, I must give off extra warm and fuzzy vibes in the last week of each campaign because every single new person I meet wants to connect, to set schemes up, help with fundraising, want me to write articles for them...the list goes on and on.

I AM NOT COMPLAINING. I am grateful for each and every opportunity that comes my way, I just wish these people had met me a few months ago. I am determined to have a break this time. I usually miss out on recharging because I get too excited and plough on with new adventures without resting. I need to rest. I'm just a little bit frustrated that the needs of my body are going to force me to postpone the opportunities that have come my/our community's way this week. I have explained the situation to these new Foggy fans and they understand and are happy to wait until September...phew.

People ask why Foggy's globetrotting has a start and an end point each time. One, it's my equivalent of a marathon. I am not Forrest Gump - running endlessly. Two, It's nice to have targets and not just roll along aimlessly. 

The gap in-between gives me chance to regroup, gather my thoughts and lay the foundations for what comes next. Explaining that to people who are disappointed that they only discovered Foggy in his last week can be tricky! But, there is plenty of stuff to look at. I have written so many blogs and articles for people to read and there are thousands of globetrotting adventure photos to look through. We just won't be actively campaigning for a bit.

Even now as I type this, I am thinking about the literature/promotional material I will need for an open day in the disability centre, where I hold our support groups, in a couple of weeks time. The open day is within my 6 weeks 'time off', but the date is out of my hands and I want to promote both M.E as a condition and my support group for M.E patients and carers. It would be silly to waste the opportunity. So, maybe my 6 weeks off will start on the 21st July.... if nothing else crops up!

Love,

Sally and Foggy (OBVIOUSLY)
xxx

Friday, 29 June 2018

Foggy's World Tour 2017-18 Photo Competition!

*Foggy* Hi!! I am so photogenic I can't help looking fabulous in every photo that is taken of me :)  Sally has looked through the hundreds of photos that my sitters have taken over the past year and has narrowed it down to her top 5.

There were so many fantastic photos to choose from, choosing these 5 was a hard job! Thank you to all Foggy's sitters for letting him tag along and allowing him to have so many global adventures! 

Now it's up to you guys to pick the winner. Which photo do you think is the best from this campaign.

One choice each.

Click this link to vote - https://www.surveymonkey.co.uk/r/7X6HPPG

I'll announce the winner next Tuesday (3rd July)

Love

Sally (and Foggy OBVIOUSLY)
XXXX



Queen Elizabeth Cruise
Pen-Y-Fan

Table Mountain

Las Vegas

Christchurch




Tuesday, 26 June 2018

A Few Noteworthy Things...

Hello!

I hadn't planned on writing loads of blogs during Foggy's home stretch but a few things have happened that should be talked about.

Yesterday, for want of a better word, I was 'head-hunted' due to my social media marketing business to 'host' a Twitter hour slot for the foreseeable future. I had a phone conversation with the founder of this successful business related Twitter hour (38k followers) and felt extremely happy to be asked. She said she weekly has hundreds of requests from social media marketers to do hosting but she only uses people who have demonstrated creativity, talent and experience. It would have given me much needed exposure for my business. Whoop....what a fantastic compliment. I would have snapped her hand off....if I didn't have M.E.

This Twitter hour is at 1pm, JUST when my M.E usually starts to hit, regardless of what activity I have done during the morning. I find that social media is draining when I schedule tweets or send them out spontaneously during the day. One hour of absolutely concentration, creating content, topics, and responding immediately to interaction.....ugh. It's a busy twitter hour, I know because I interact with it myself. It's got a very good reputation for having great content and being good fun. 

Part of the reason I turned the opportunity down is guilt. I would feel dreadful if I couldn't keep up with the time commitment due to my M.E or if I struggled cognitively halfway through an hour. Due to the nature of the beast, it is a solo venture. Just me, sitting at my desk, 'talking' to lots and lots of businesses online. I wouldn't have a back-up plan. She explained it as like being a DJ, I would simply be filling in a slot of time.

I am disappointed but know it is well outside of my energy possibilities. Such a shame, I know I would have loved it and been blooming good at it! You can't be witty and fun if you are cognitively comatose. I am just going to take the opportunity offer as a huge compliment of my social media ability, it's great to be recognised professionally.

The second thing happened this morning. I have just watched a segment on Sky Sunrise about how patients with chronic illnesses deal with sick days with employers. Crohns and Colitis UK have done
some research, that's why they were on the breakfast news show. This piece of research highlights that instead of being honest about why we need to take time off sick, patients (in this case Crohns and Colitis but the same can be applied to all chronic illness...M.E included) say they have a common complaint instead of naming the chronic illness as the reason for the time off. So, for example, they might say they have a tummy bug and so need to take one day off when in actual fact it is a flare of their chronic illness. Everybody knows what a tummy upset is like, no need for graphic explanations or in-depth conversations about back to work schedules etc.

This resonated with me personally because, as a mild sufferer who was able to work full time, I used to do this. I used to proclaim that I had never had a day off due to M.E. I lied. I lied for 2 reasons.
1. When I was in employment I didn't want to give my employers an excuse to call me unfit for work.
2. After I left, I was job hunting and I didn't want to put potential employers off.

The sickness level in my department was high across the department so I didn't stand out as the 'sick' person. I wasn't anywhere near the limits of acceptable sickness absence. However, I did take quite a lot of time off with migraines, headaches, feeling nauseous, very low blood pressure, feeling faint -ringing bells with anyone?!

Wouldn't it have been lovely if my employer understood my illness? Wouldn't it have been great to not have to lie about what was wrong?

Love

Sally
and Foggy (OBVIOUSLY)

xxxx

p.s You have 8 days left to donate! Please donate via mefoggydog.org. Foggy snogs in advance xxxx

Saturday, 23 June 2018

Fit For Purpose?

Hi Guys,

On day one of ME Foggy Dog way back in 2014, the original plan was to raise research funding and awareness of M.E. The plan was to enlighten people in the wider non-M.E community about the illness itself and the politics surrounding it. I strongly believe that we need these people to understand our illness, even if only at a basic level, so we can progress and battle the stigma. However, I am wondering if I am achieving that and pondering whether ME Foggy Dog is fit for purpose.

We aren't fit for purpose as a fundraiser. We have made in 4 years what we had got very close to reaching in year one. Some people raise £10k simply by doing one fundraiser, perhaps an event or marathon. We have raised just over £10k by doing 4 years of blooming hard work every single day..... yep...every single day. Whether that's creating content on social media, organising Foggy's travel plans (very often a logistical challenge and stressful) , promoting M.E in the media, talking to University researchers about the possibility of them putting their efforts into ME research, networking with University lecturers, and more recently networking with business people about future plans. Team Foggy will not be fundraising again, I find it harmful to my self-esteem and I don't like repeatedly banging my head against a brick wall. I will be dipping my toe into crowdfunding and profits from sales of future products/ticket sales will go to research funding instead.

Let me be clear, I have never expected funds to come from the M.E community. I am not dumb, I know you guys often do not have the cash to spare. However, it has become clear to me that that is exactly where the cash is coming from. Either sufferers themselves or their wider family/friends. This upsets me. This is why I try to get non-M.E peeps to engage with our cause. They have the money to spare but simply don't know what they are donating for....very often they don't think of M.E as a worthwhile cause because they don't know enough about it. That's where awareness raising comes in.

I LOVE the M.E community, specifically those of you who contact me direct, share everything I do and have fully engaged with Foggy. I know you guys think I am raising awareness and I am very grateful for your love, support, and enthusiasm. However, it is noticeable to me that my posts aren't shared by non-M.E peeps. I include family, friends and support networks in the M.E peeps category. I'm talking about people who have no personal contact with M.E, who didn't know anything about M.E before following Foggy. If I'm wrong and you are a non-M.E peep, please do let me know whether my awareness raising is working! In 4 years, I have never received an email/message from someone who has discovered M.E due to Foggy's work online.

People I meet in the real world are now enlightened. I know for a fact that I have raised awareness among business people I meet who had no prior knowledge of the illness or our fight for recognition. Attendees of my public speaking events are also aware and have a greater understanding of how to support members of the M.E community within their working environment.

There is absolutely no point in raising awareness within the ME community. We are all 100% aware of how rubbish our illness is. We might learn about other people's variation of the illness or about a new symptom that we hadn't yet recognised as part of our own M.E. But you don't need me to tell you about your own illness. ME Foggy Dog is sometimes just an information sharing platform, completely not what it was set up to be. There are other organisations that do that very effectively so ME Foggy Dog isn't needed in that format.

I am currently driving myself nuts trying to work out what to do with ME Foggy Dog in the years to come, or whether he should continue at all. Should I just close everything down and get some of my life back? My life is not only restricted by my own M.E but also by the pressure of doing at least 2 hours of 'Foggy work' every day. This work often uses up the tiny bit of spare energy I had, which would be ok if I felt I was achieving anything.

I have recently been to networking events and workshops with business people to try and get my ideas a bit more structure. I have had the pleasure of meeting some very enthusiastic business people who want to get involved. Some of the ideas that have been enthusiastically discussed have included concerts, books, range of teddies. and HUGE awareness events. All of which would reach non-M.E peeps as well as the M.E community. Whatever happens next, Foggy is going to get BIGGER. His adventures will continue but the other stuff will be done purposefully and determinedly to get the wider general public engaged. If there are any celebs out there (you don't necessarily have to have M.E!) who want to get involved and help us to grow please get in touch. We need a bit of star dust to get noticed.

There are now 10 days to go, I can't wait to put my feet up for a bit! (I'm still doing local events though so maybe not as much of a rest as I need!)

Love,

Sally
(and Foggy OBVIOUSLY)
XXX

Never-Ending What Ifs

Hello!

Devoted fans, I am currently in Sri Lanka. Joan, my sitter, hasn't been able to send Sally any photos yet but Sally will be able to show you what I have been up to at the end of this month. Sally drives herself nuts by wondering if there is anything she did pre-M.E to trigger her illness. Maybe she shouldn't have got so stressed over a break up or maybe she should have looked after herself better. I'm sure she's not alone in that way of thinking. I keep telling her it's nothing she did to herself but I'll let her explain that mindset in this blog.

Hi,

I'm sure I am not the only M.E sufferer on the planet who goes through phases of either blaming themselves or wondering if getting M.E was preventable.

We were having a tidy-up in our loft last week and I came across the record card that was filled in by the Health Visitor from when I was born up to the age of 5. Interestingly, it says that both my vision and hearing were stronger on the right-hand side. Since having M.E, it has been noticeable that my left eye
muscles are incredibly weak ,and the Labyrinthitis that triggered my M.E affected my left ear and subsequently, any migraines/balance issues start on my left side. I lean to the left which means all of my left-hand pockets are ripped due to catching on door handles! I also had chronic colic, vomiting and digestive problems for the first 18 months of my life (my Mum had a 'bad pregnancy too').  Which makes me wonder if M.E is something we are born with and is not acquired in later life. Because many of these health issues can be included under the umbrella of M.E. However, there are people who have M.E who didn't have health problems in their early years so there doesn't seem to be a pattern there.

It's little things like this that I try to fit into my M.E puzzle. If I hadn't been so stressed in my 20s due to relationship dramas, housing issues, studying for a degree etc, would M.E have started when I turned 30? Should I have taken better care of myself? Done regular yoga sessions, eliminated toxic relationships from my life and generally cared about myself a little bit more? I will never know. Therapists have told me not to stress about it because it's not helpful and will just make my M.E worse. Doesn't stop me from scratching the itch though!

Unfortunately, having M.E brings with it a lot of thinking time. When I am laying on my bed, unable to watch TV or read a book, all I am able to do is think, my thinking pattern literally goes around in circles!

I can't remember my teenage years and so can't think of what could have caused my childhood M.E. I was stressed about my options years that were looming and I have always been a worrier but there was no significant event that my parents can think of that could have been a trigger.

Unfortunately, M.E is a complicated fluctuating life-stealing condition that makes no sense. 

No sense at all.

Love 

Sally
(and Foggy OBVIOUSLY)
XXXX

ps. There are 11 days to go! The current total is £1606, if you feel this does not adequately reflect the hard work of Team Foggy over the past 11 months... please donate! Donate via mefoggydog.org or by clicking the donate button at the right hand side of this blog. Thank you, all money is going to the ME Association for ME research xx

Thursday, 14 June 2018

Vulnerability

Hi,

Foggy is in Sri Lanka, no photos have been sent to Foggy HQ yet so I am taking the opportunity to write this blog instead.

Over the past 4 years, I have been struck by the sheer number of M.E/CFS sufferers who keep their health private. They are free to do so, that is their choice to make. However, as the founder of ME Foggy Dog, I waived that right to privacy in order to raise awareness. As you will know, I talk about everything and anything that comes under the umbrella of M.E/CFS. There aren't many things that I have thought are too intimate to discuss, you guys even know about my M.E affected failing love life and weight problem! Many of Foggy's Followers message me to tell me that I am brave and strong for being so open. I just figure that we need to share the bare nakedness of the illness to make sure that Joe Public 'gets it'. We can't pull any punches. There is no need to dramatise our situation - it's powerful in its vulnerability.

This openness makes me feel vulnerable and leaves me open to negativity, exactly the stuff that the people who choose to be private are scared of. I am well aware that my openness has caused me to miss out on job opportunities, business contracts, and many other things where having a disability could be an issue - not able to work enough hours etc.

In my mind this sense of vulnerability goes hand in hand with the stigma attached to M.E/CFS. Last year, when I started social enterprise training in Winchester, I had to give a 2 minute pitch to apply for funding (which I won but have since given back due to leaving the course). I was looking for something to add a bit of oomph to my pitch. I found it on Instagram. I discovered an M.E
story that was so powerful it touched me immensely. I spoke to the Instagram follower and asked their permission to use it in my pitch. This person hasn't even told their friends and family about their illness, they are so terrified of the stigma attached to ME/CFS. It broke my heart to hear this and was very grateful that I was given permission to tell their story on this occasion. I could see it struck the six people on the panel. They asked why someone would be so scared of people finding out and I explained the ignorance and misconceptions surrounding ME/CFS. The panel agreed that the training organisation I was hoping to set up was needed to knock down some of our barriers and deal with the stigma.

I have met people who have symptoms and have been diagnosed with Post-Viral Fatigue Syndrome (or similar) but won't consider the tag M.E because they are scared of it. It would make them feel too vulnerable and open to negativity. Yes, that's right, just the idea of having the label of M.E is too scary for some people to accept. They tell me they have friends with M.E but are desperate to not have the same condition because they see how cruel it can be.  The label itself isn't what makes us vulnerable, it's the stigma and negativity that goes with it.

Prior to setting up Foggy, I didn't really talk about my M.E/CFS in work (apart from with Occ Health or managers) and only mentioned it to close friends. I felt too vulnerable and open to criticism if I opened up to a wider circle. I would always be braced for nasty comments or opinions. That feeling of vulnerability isn't pleasant. Now, I know that this nastiness comes from a lack of awareness and wide range of misconceptions. Those people who chat online about awareness being 'pointless' need to see how the general public being 'aware' can only help to reduce our feelings of vulnerability, and help to combat the stigma surrounding M.E/CFS. We should not feel embarrassed or ashamed about having an invisible disability.

I have been told that there is strength in vulnerability and I am slowly coming around to the idea. We show strength in the face of adversity.

Love,

Sally 
(and Foggy OBVIOUSLY) 

xx

ps. 20 days to go!! Please donate if you haven't done so already.




Monday, 11 June 2018

Raising Awareness of ME/CFS

Hello!

I'm now with my Sri Lanka sitter Joan, we are heading off for our overseas adventures on Wednesday. Sally just wanted me out of the way so she can get stuff done *sob*. Joan is spoiling me with lots of cuppas (milk 2 sugars) and Wotsits, so I'm happy. I have 23 days left of being a globetrotting adventurer! Sally is going to tell you all about how different people say different things to her in terms of progress. I'll let her explain.

Hi,

Those eager-eyed amongst you will know that I have been busy with lots of business meetings and networking with various academic people in the past couple of weeks. I am often surprised when people seem to know a little bit about M.E and are genuinely interested. What has struck me recently though is that many people seem to think that awareness has been raised to the point where the general public are now aware, and our illness has been recognised both as a disability and as a valid illness. They seem surprised that ME Foggy Dog and other advocacy work is still needed.

I have to remind myself that pre-Foggy, I'd had M.E/CFS for 7 years without knowing much about my own illness apart from that M.E included being very tired (sooo much more than tiredness though). I wouldn't be surprised if the general public still think M.E/CFS is mainly tiredness. Not the
list of over 30 symptoms that I now know it to be - I had the symptoms, I just didn't know they all came under the same umbrella of M.E/CFS. My point is - if I, as a sufferer, didn't understand my own illness, how on earth can the general public fully understand something that is so fluid and irregular? I stick to the basics with my awareness raising because a basic level of understanding across the board is better than a lack of understanding of the intricacies of our complicated illness.

I have been too tired to have THE conversation. You know the one I mean. The conversation where I explain that M.E is still having to be debated in Parliament (Great news about the debate on 21st June. Treatment and research funding are still huge issues that charities and advocates are working hard to highlight and make progress. The conversation where I tell them that many in the healthcare profession still don't believe that M.E/CFS is a real illness and that many in the education sector are unable to support children adequately due to a lack of awareness and appropriate infrastructure. I know this because I have spoken at length with teacher friends of mine who say they care about their students but don't have the knowledge or system to support adequately. They have attendance targets to meet and long term sickness absence affects their ability to reach those targets. They are used to illnesses where mind over matter works.

I was talking to an education academic recently and he said that teachers implemented individual care plans for any child that was suffering with any illness, M.E/CFS included. What I didn't have the energy to tell him was that ME/CFS is unique and what may work for a child with cancer, for example, may not work for an M.E/CFS affected child. There is no point extending deadlines for a couple of weeks as the child may well be unable to do schoolwork for months on end. Knowledge and understanding of the illness would be hugely beneficial to all concerned: Child, parent, teacher. I would also be concerned as to where they are directed to for information about ME/CFS. Do they go to a school-linked GP? Would this GP be in the GET camp? In which case, any information received by the school wouldn't be fit for purpose.  Best case scenario - A child and their parents would be in contact with a teacher who knows about ME/CFS and would have appropriate support from day one. I may still venture towards creating a training organisation to address this issue....that's one of the many big decisions I have to make post-July 4th.

I see so many threads on Twitter where people are discussing whether we have made progress in terms of raising awareness. Many say we haven't, but there are a few sufferers who are noticing a little bit more understanding in their 'real-lives' offline. Personally, I know I have educated many people in my own circle about M.E/CFS and I have been contacted by hundreds of 'friends I haven't met yet' who have relatives/friends/colleagues with the illness, thanking me for helping them to understand the illness. In terms of what ME Foggy Dog has achieved, progress has been made.

Slow and steady wins the race, right? 

Love,

Sally
(and Foggy OBVIOUSLY)
xxx