Open Letter to the Ellen Degeneres Show

Hi,

I have sent this letter via snail mail to Ellen's office in California.

Dear Ellen’s Team,

I am asking for your help. I am under no illusion that this letter will be seen by Ellen herself and so I am writing to you as Ellen’s representatives.

I am an advocate for and sufferer of Myalgic Encephalomyelitis (M.E). You will probably know it by its other name – Chronic Fatigue Syndrome (C.F.S). This October marks my 11-year M.E birthday! Not that it’s anything worth celebrating. Despite my own personal hardships, traumatic events, and ill health, I have made it my life mission to help those worse off than myself.

M.E/C.F.S affects 17 million people (very low estimate) worldwide. That figure includes at least 1 million Americans. M.E/C.F.S is the most common illness that no-one really knows about or understands.

I have been contacting you via Twitter though I’m sure my tweets get lost in the thousands you probably receive every day and so I have chosen snail mail to reach you now. I would love Foggy, my charity brand figure, to be on the Ellen Show. I have the following reasons for this:

-      -   I am a huge fan and watch most days when I am able. I was ecstatic when ITV2 started showing current episodes!

-      -   It is the biggest TV chat show in the world (I think)– I want to raise awareness in a big way – I can’t get much bigger! I would like to use your show as a platform to reach as many people as possible.

-       -   This is the most important reason. Many of Foggy’s Followers are bedbound. They write to me personally with their personal M.E stories. Every single American and Canadian M.E/CFS sufferer that I have been contacted by watches Ellen. They tell me it is usually the only time in their day when they turn their TV on and ‘enjoy life’. These people suffer from extreme light and noise sensitivity and so watching Ellen on TV is a HUGE deal. Ellen means so much to them. If I get Foggy onto your show then I am reaching out to those people. Those sufferers who believe they are forgotten about. I want them to know that I haven’t forgotten about them, that YOU haven’t forgotten about them.

Everybody knows somebody with M.E/CFS. It is an illness we should all know about. It does not discriminate regardless of age, race or gender. The youngest sufferer ever recorded was just 2 years old. The M.E ‘crisis’ is the equivalent to the HIV/AIDS epidemic of the 80s and yet trying to get people to engage and understand is a very difficult task. We face prejudice on a daily basis and many in the healthcare profession don’t even consider it a real illness.  I am managing to raise awareness one person at a time but need help to reach even further. We desperately need research, trying to get research funding is an ongoing issue. Advocates and fundraiser like me work hard to raise funding as most Governments don’t spend much money on researching M.E. THERE IS NO TREATMENT.

I would encourage you to watch the film Unrest, directed by Jen Brea. I will be holding a screening here in Portsmouth myself. This award-winning documentary shows the severest form of M.E/CFS in the form of a real-life love story. Well worth a watch. It is an American film and there are screenings all over the U.S.

Please take a look at mefoggydog.org to see what my work is all about. Foggy is a soft toy. Foggy is an AWESOME globetrotting adventurer. He was ‘born’ in 2014 and has raised over £8k for the ME Association in the UK. All money raised goes to M. E Research. Foggy is currently on his 2017-18 World Tour and is on a mission to raise £10k and travel 250,000 miles around the world spreading love and awareness. He is currently in California and has travelled around 30,000 miles so far. His current campaign ends in July 2018. An appearance on your show is on Foggy’s bucket list…please help to make his dreams come true!

What drives me to do it? One day I want someone in a white lab coat to tell me why I feel dreadful every single day.

I hope you can help.

Best wishes.

The M Word - Menopause

Hi,

Foggy wants to learn everything there is to know about M.E. I wrote about periods a couple of years back and so now, with my advancing years (I'm 41 in 2 weeks!! EEK), it seems appropriate to move on to the menopause. Sorry chaps, you might want to stop reading if you aren't in touch with your feminine side!

Early menopause has been a factor in my family health history for at least the past 2 generations. The women in my family started the menopause between the ages of 25-35. A hysterectomy was to blame for part of it but still, it was early menopause none the less. So, since the start of my 30s I have been braced for it to hit. Nothing yet, I am happy to report! I haven't had kids so that may be a factor...I am rubbish at biology so...I have no idea!

However, I think it is only right to highlight how the menopause affects M.E bodies. As I said in my Hormones blog, any hormonal changes in our bodies bring about M.E flare-ups. Hormone changes

'The Change' - Get it? :)

are a blooming nightmare. I am usually wiped out for at least a week in the run up to 'coming on' and it makes my symptoms double in severity. With that in mind, I am certain that going through the menopause will be just as rubbish (If I haven't miraculously recovered by then.....I WISH!). I am not dreading it in terms of it being a sign that I am ageing, I am actually looking forward to my periods coming to an end! But, as something to worry about in M.E terms, it is definitely playing on my mind. I have no idea what to expect and so am hoping that I will merely deal with it as it hits. The M.E Association says this on their website:

Some 70% of women experience physical, gynaecological and psychological symptoms during the menopause – some of which are the same or similar to those found in ME/CFS. So it’s not surprising to find that the menopause can sometimes cause a significant flare up of ME.

If symptoms are similar to what I am experiencing already, should I just anticipate that they will worsen? Will I be feeling doubly rough for the whole month instead of just part of it? Who knows?! If any of Foggy's lady Followers have experienced the menopause and M.E medley would you consider writing him a blog? It can be anonymous if necessary.

I've found a couple of useful articles online. Have a read.
https://www.mesupport.co.uk/index.php?page=the-menopause-me
https://www.sciencedaily.com/releases/2015/02/150204075324.htm

Love Sally
(and Foggy OBVIOUSLY)
xxxx

Brain Fog

Morning!

So, ME Foggy Dog got its name because of the M.E./C.F.S. symptom brain fog. That feeling of having to get thoughts through a cotton wool brain before being able to do anything with them. Just writing this blog is proving to be an effort today. Apologies if it is just waffle!

Some days, I could be asked what my age is and I wouldn't have a blooming clue! As I mentioned in an old blog post, my mum and I actually counted back the years on our fingers a few years ago as neither of us could remember how old I was!

As you probably know by now, I now run my own fledgling business from home. I get in a pickle fairly regularly, luckily I work alone so no one else realises that I have no clue what I am doing...oh bum...I've told you all now! Some days, I just sit and stare at my filing cabinet for a few minutes.

'Hide and Seek'

Trying to remember what work I need to be getting on with, or why I came to the other end of the dining room where my desk is! Us M.E peeps also suffer from poor memory issues but brain fog is slightly different. It's almost as if your brain knows what you need to be doing but it's running 2 minutes behind where it should be! I know that being the other side of a M.E affected encounter can be very frustrating as we flounder for words or actions that are required. Unfortunately, non-ME peeps are not mind-readers!

I am a people-pleaser. I worry that other people think I am stupid because I can't think straight! I find myself explaining about my M.E so they realise it's a health thing and not lack of intelligence. Why do I feel the need to do that?! Well, we all know that the reason M.E folk talk about their M.E ALL THE TIME is that it is an invisible illness. If we don't vocalise about it, no one would know that we are struggling.

Brain fog is always exceptionally bad at supermarket checkouts. Right when the cashier needs me to know whether I have a car park ticket, have bags, have a store points card or if I need help with packing. Normally, I just stand there...mute....while I struggle to answer their questions! I usually put items in the wrong bags (I shop with my Dad who is slightly anally retentive when it comes to packing shopping...hence the 'wrong bag'), forget to take my card, trip over the trolley wheels...etc etc...you get the idea. My brain kinda gets confused and causes me to become clumsy (probably why stairs and I have a bad relationship!). I can't judge distances or environment dimensions.

It's all fun and games isn't it?!

Love

Sally xxxx
(and Foggy OBVIOUSLY)

P.S.... Foggy is having a great time on board the Queen Elizabeth. The photo shows him playing 'Hide and seek' with Lizz and Hazel (Elektra Violin duo) this week.

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