Unrest

Morning All,

Foggy, lucky moo, is starting his week-long cruise on the Cunard Liner- the Queen Elizabeth today. He is going to touch his paws down in Sicily, Corfu, Dubrovnik, Split, Venice and the Messina Straits. Loads of mileage! Whoop!

While he is away I am working hard promoting my screening of Unrest on November 16th in Portsmouth. All information about the event can be found on mefoggydog.org. I felt I should write this blog as I am not sure some people know what to expect from the film. It has been hyped up by the M.E community, rightly so, but I feel that I should clarify that it is not a medical training video. It is not an A.B.C account of what M.E is.

It is a story. A love story. A love story between two people who are very much in love. One of those people has severe M.E. Yes, it is a documentary and everything you see on screen is factual but it is not rammed full of M.E clinical data or information.

Let me clarify, I have not seen the film yet. I have read a number of reviews and every reviewer has pointed out that it is a wonderful, visual, powerful film that may not meet the expectations of some M.E sufferers who are hoping that it will address some of the political rubbish that comes with M.E. I

*Foggy* I'm flying!!!

am glad that it isn't a hit you around the head with a bat, political blame-game movie. If it was, the M.E community wouldn't get much engagement with the wider public. I believe that Jen Brea is of the same mindset as me. Storytelling works. It draws people in and creates empathy and awareness. It creates an interest in people that may not know anything about M.E and could point them towards further learning and understanding.

On day one of being Foggy's P.A, I decided to avoid the political-ness that surrounds M.E. Personally, I don't read anything that is ranty or political. All that does is alienate people and won't lead to progress. Yes, I'm angry. I just choose to be outwardly positive and forward-thinking in the hope that it leads to progress. So, I built a story. Foggy's life story. He had a 'birth', he has a best friend, he has Team Foggy and I created a character who loves flying, has an ego, and loves cuppa teas (milk 2 sugars). I tell the M.E experience from a human perspective. I chose to run awareness content alongside that. So I avoided strong-arm tactics in terms of awareness but gently put nuggets of M.E info into followers minds as they followed Foggy's exploits. Videoing myself looking rubbish with a croaky voice is kinda the norm now. I might be verbalising about Foggy's latest exploits but how I LOOK is also telling a story. We don't have to be fact, fact, fact to get the message across. Visual representation of the illness is powerful...just as it is.

Think of Unrest in the same way as Philadelphia in the 80s. It was the story of a HIV/AIDS sufferer. There were no lectures, no scientists talking to cameras (Unrest has a bit of that). But, it was groundbreaking in terms of bringing the worlds attention to the HIV/AIDS issue. Philadelphia was a drama and not a documentary but the storytelling method is the same.

Please come along to the screening if you are able to. It will certainly be eye-opening for many in the audience.

Love Sally 
and Foggy (OBVIOUSLY)
xxx

Please donate via mefoggydog.org - All money raised goes to M.E research. Thank you x

M.E Pain - Describing the Indescribable

Hi,

One subject that I am unable to talk about is that of M.E pain. It isn't something I have any experience of....well, apart from a new development in the form of constant sharp pain in my little and fourth toes on my left foot ( POSSIBLY M.E related). This new pain does not make me an expert in M.E pain or how to manage it though! Anyway, earlier this week I was speaking to Ryn, a friend who I originally met through Foggy (she wrote a blog for Foggy during the first World Tour and Foggy rode her husband's motorbike...bucket list!!) but who has gone on to become a true friend and confidante. I have discovered that Ryn is the perfect person to go to for love-life advice...she is determined to help me 'see the light' and to convince me that my 'ideal man' is out there somewhere. Yeah yeah. Anyway, back to pain.... I asked Ryn if she could write about her own personal experience of M.E pain. As I have said before, there isn't a one type fits all description for any M.E symptom/experience, but this is hers. 

Me and my M.E / C.F.S  pain.

My pain is like varying levels of flu-like aches and pains which have been constant since I was G.P diagnosed with P.V.F.S February 2014 and later, a consultant confirmed a diagnosis of M.E/C.F.S./P.V.F.S  September 2014.

It is mainly joint and muscular pain and includes inflamed glands in my throat, armpits and groin. My pains are from my head to the tips of my fingers and toes. Sometimes it feels so

overwhelming and never-ending, I can’t help but give in to self-pity, tears and frustration.  But so what? A good cry does me good! Thankfully, ways of coping with my pain have come to me with the support and ideas of people close to me and from the twenty years I worked in the healthcare profession.    

When I can, I‘ll use ‘distraction’ as a way of dealing with the pain.  I’ll read my kindle (it’s back-lit so it's perfect for my being light sensitive as I can adjust its light), or watch t.v etc.  Short visits from family and friends help, as does using social media…. when my head is clear enough from brain fog lol.   Feeling isolated doesn’t help my pain management. I generally take four pain relief tablets at a time, 2 x 30/500 Co-Codamol and 2 x 200mg Meptazinol – although together they can take the edge off the pain, it isn’t always enough.   At its worse, the pain down my spine radiates outwards.  I take my pain relief tablets and my husband rubs ‘Deep Heat’ into my back for me. As gentle as he can be, his touch / the application of the cream hurts me even more until it’s done, then I can rest and hopefully sleep the worst of the pain away.

Hot water bottles can be a true comfort to my joint and muscle pains.  I can’t make them up myself but if no one is there to help, I have a longer than average wheat bag (from Boots Chemist) which I can now often manage to heat in the microwave.  When I lay in bed (often on my side as easier breathing being Asthmatic), I use a pillow between my legs which takes the pressure and discomfort off my knees and ankles when they touch, skin to skin.   A ‘hot as I can handle it’ bubble bath is helpful too - I use a bath chair so can’t fully lay down and relax under the water but just to get the heat to my legs and hips seems to work wonders for them.   I use ‘Infa-care’ or ‘Sanex’ bubbles as are gentle to my skin.   A lightweight blanket/shawl wrapped around my shoulders or one covering my hips to my toes helps ease my pain too. I believe it’s the warmth they generate that alleviates pain.  In bed, when my legs and feet are cold and painful, I use an incontinence sheet under the bed sheet, under my lower body.  They are plastic one side and quilted absorbent paper on the other.  The heat builds up quickly and is a more gentle heat than a hot water bottle (B&M sell ‘puppy pads’ which work the same as incontinence sheets and a fraction of the cost).

My pain levels dictate what I can do and when. I can't manage personal care as and when I use to or get out of bed when I'd like to. Today, it's been a couple hours at least since I've been awake but my pain reduced enough that I've only just managed my shower - still using a shower chair as the act of showering is still exhausting and my balance not great! Pain levels do control what I do and when, 24/7.

I’ve always said ‘I don’t do pain’, maybe I have a ridiculously low pain threshold, I don’t know.  But it’s amazing the levels of pain you learn to live with because you have no choice and I will do/take what I need to help my quality of life. In the past, pain has knocked me mentally and emotionally sideways so I try not to suffer in silence anymore…..it really isn’t healthy. Sharing my pain (yes really!) has allowed others to offer me their support and own ideas on how to get through it, some of those ideas have worked for me so I’m very happy to be able to share them with you too J    Please don’t suffer alone.

Ryn xx

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!

Love Sally
and Foggy OBVIOUSLY
xxxxx

Technology and Self-Employment

Hi,

I wrote this blog back in 2015 - http://mefoggydog.blogspot.co.uk/2015/07/buttons.html, in it I explain how technology, phones and social media, is draining. My life has changed significantly since then so I am going to explain how technology affects my life now.

I have my own business...wooo get me! (Update - Business closed in Sept 2018 to set up Stripy Lightbulb CIC)  I offer social media marketing and proofreading to businesses (and students).  Initially, on the surface, self-employment seems a good choice for someone with a chronic illness who struggles to work full time for employers. I work from home, set my own hours and can take as many rest breaks as I need. However, it also means I can't share my workload on my bad M.E days. The work still needs to be done. I am now the whole package: IT dept, finance, HR, social media, marketing etc etc. I LOVE it. But, there is a lot of screen work involved in my day to day life and it does catch up with me.

As I said in my 2015 blog, social media is incredibly draining. I do it because I love it, but it takes a phenomenal amount of energy. So, I post at least 5 times a day for each client. I have to research what to post, think about how to

convey the message, search for website URLs to post, design content, schedule posts etc. All of which require brain cells to be alive and kicking! I am finding that by 2pm every day, I have to take a very long 'power nap'. I restart work in the evening after I have rested. 

It is tricky to explain what brain drain feels like but I'll give it a go. So, imagine you have an acorn-sized 'hub' in the centre of your brain. When it is working correctly you can't feel it. But, as time goes on, with lots of looking at blue-lit screens, it feels like the acorn is throbbing and causing waves within your brain. The acorn becomes painful and starts to cause puffy/painful glands, a sore throat, slurred speech, headache and neck pain. It becomes exceptionally difficult to process thoughts and body functions get slower and slower. It is 100% impossible to push through. My body is telling me to stop. I can't ignore it as I am grinding to a halt whether I want to or not.

I dream of having a phone with buttons again, but know that is impossible now. I am on call 24/7 online. I now have 10 different social media accounts linked to my phone. I have set my phone settings to have a minimum amount of alerts, otherwise I think I would go slightly potty! But, I still have alerts through every 5 minutes or so. In theory, this is great because it means I am good at my job! But, when I have been hit by a tsunami of M.E-ness...it's not so good. I have become very good at turning my phone off at 9pm though. Thus giving myself an hour to wind down as much as possible before bed at 10pm. I also try not to do client work post-6pm. Because that work pays my bills it is done first thing in the morning when I have the most energy. My own business and Foggy gets done later in the day. Energy levels dictate my daily routine and work schedule. If I have a networking event to go to, usually 6pm-8.30pm, I have to restrict activities for a couple of days before and meticulously plan my workload so that I have the energy to schmooze with other business people effectively. As we all know, I know, to the hour, that my M.E payback will hit 2 days after the networking event so plan my workload accordingly.

There are perks to being self-employed but be warned the workload can be overwhelming. Being able to rest regularly and not having to fit in with someone else's timetable is worth its weight in gold though.

Love,

Sally (and Foggy OBVIOUSLY)

Question

Hi,

So, I asked Foggy's Followers to send questions for me to answer in a blog. They could be about M.E/CFS, Foggy's campaign, or about me personally. I'm an open book so happy to answer whatever is thrown at me. I received a question from Megan.Rose06 on Instagram. She asked:

When were you diagnosed with M.E and how long did it take to be diagnosed?

This is a tricky one to answer as I have actually had M.E twice. I had M.E symptoms initially when I was in secondary school. I was aged 13 (ish) and it

was during my 'options' years. I missed 18 months of school, had dozens and dozens of tests but never received a diagnosis. Then one day, it had gone...I was better.

The second round of M.E started 2 weeks after my 30th birthday. It started shortly after an ear infection (Labyrinthitis). It took 3-4 years to get a diagnosis. I wasn't taken seriously and my diagnosis came about in a conversation with a locum GP that went something like this...' You have M.E, but don't worry about it'. So far, I have had this bout of M.E for 10 years and the only treatment/management support I have ever received is CBT. I go through periods of 'remission', where I have a few months with more energy and can push myself to achieve more on a daily basis. But, I haven't had a period of remission for at least 3 years now.

I hope that answers the question. Any more? Contact me via mefoggydog.org anytime.

Love,

Sally xx

Inconsistency

Hello,

Sometimes, reading other people's accounts of their M.E experience is like reading a foreign language. In the 10 years since my diagnosis, I have only ever received a CBT referral. Despite having a wide range of symptoms, for which there are specialists, I have never been referred. So

when other M.E sufferers talk about appointments with neurologists, endocrinologists, gastro-people, physiotherapists, etc etc.... I find myself wondering why their experience is so different to mine. My orthostatic intolerance has never been addressed by GPs, nor my light sensitivity, IBS or hearing issues. It's all just lumped together under the label of untreatable M.E.

Sometimes, these other sufferers live in other countries and so that explains why their healthcare differs. However, I am increasingly finding that UK sufferers are treated differently depending on their postcode or whether they are treated by the NHS or privately. Some take part in medical trials or drug trials, others don't get the opportunity. I can fully understand why this breeds resentment within the M.E community.

It's all a bit of a mess really isn't it? Not only is there no treatment for M.E but there isn't even consistency when trying to deal with individual symptoms of the condition.

There are three things that we are now striving for....treatment, awareness, and consistency!

Love,

Sally (and Foggy OBVIOUSLY)

'Of course that happens...it's your M.E'

Hi,

How many of us have visited chiropractors, dentists, physios etc and been fobbed off with 'Of course that happens, it's your M.E'? It's happened to me hundreds of times!

I'm writing this blog because it seems bizarre to me that we are always being told that the healthcare profession either doesn't believe it's a real illness OR that they don't understand it. And yet, it's the first thing that springs to their minds when offering a possible diagnosis for a random ailment.

For example, every couple of months I have painful lesions (2 cms long - like little worms) on the roof of my mouth. They baffled
my usual dentists so I was referred to a gum specialist. He had a look and said it was because of my M.E. HOWEVER, a few weeks ago, I saw a Facebook article that had been commented on by Dr Charles Shepherd (ME Association) and he said M.E is not the cause for any mouth related stuff. News to me! So now I am wondering what else is up?! What if there is an other ailment that needs treatment but has been neglected because it has been brushed off as 'just an M.E thing?' I am using common sense though and I think they are probably a bit like a cold sore but inside my mouth, they flare up when I am run down so it kinda makes sense.

I just wish they would hold their hands up and admit that they don't have a clue what our random symptom is, but do as much as they can to find out what it is! Making stuff up doesn't help!

Love

Sally (and Foggy obviously) xxx