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Monday, 18 September 2017

Brain Fog

Morning!

So, ME Foggy Dog got its name because of the ME 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.

Thursday, 14 September 2017

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

Monday, 11 September 2017

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 health care 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 light weight 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

Saturday, 9 September 2017

Fundraising

Hi,

I have always judged Foggy's success on the amount of money raised but that is going to change. I had an epiphany this week. All M.E fundraising efforts are asking for donations from the same M.E community pool. I fully appreciate that times are hard and that many M.E families are barely getting by on disability benefits. I'm sure we can all think of at least 15 M.E fundraising efforts currently asking for donations. People with little money can't support them all. I get that.

Without doing a statistical study, I would guess that 15% of Foggy's donations since Foggy's birth have come from non-sufferers. The rest have all come from the M.E community. I include carers and support networks within the M.E community. 85% has come from people who have personal contact with the illness. In fact, Foggy's first World Tour in 2014-15 was greatly helped by very generous donations from the family of one severe M.E sufferer. You know who you are and if you are reading this I am so, so grateful for your support. £300 ish was raised on Foggy's launch night. So, since then I have raised just over £200...that was 2 months ago. Heart-felt thanks to each and every person who has ever donated to Foggy's fund...£1 is just as important as £1000.

My brain can't compute why, when Foggy has over 6000 followers on social media, so few people
*Foggy* Plane!! 
donate. Yes, there have been tears. Lots of tears. On average, I do around 3 hours of work on brand Foggy every day. This isn't a marathon, when people do 6 months of training and then fundraise in one 3 hr long event. This is a 365 days a year fundraising EPIC. Some days, I can't understand why I do what I do. Yes, I get wonderful feedback from sufferers and families. But, what are they praising me for? I feel like I have failed them. I haven't managed to raise as much research funding as I had expected to raise on day one. I have raised a lot of awareness but it is impossible to measure how much. Is it the 10 people I have spoken to this week face-to-face about M.E who are now aware or the people that I hope are paying attention online?

If you are following Foggy, you will have seen that I am using every opportunity to reach as many non-sufferers as I can. I am still trying my best to get on to the Ellen Show. 1 million+ Americans are affected by M.E/CFS and so going on the biggest TV chat show in the world will help to spread awareness in Ellen's home country. This week, I tried to get on Davina McCall's new show which talks about life stories. I have joined my local Rotary group (new online social group), this will help me to raise awareness to a much wider audience. My School of Social Entrepreneurs work will add to my ability to reach a hell of a lot more people. See? Work, work, work. I am doing as much as I can. Which is why I get so upset when donations just don't happen.

I think that raising awareness to a much wider audience will, in the long-term, lead to many more donations. Why would non-sufferers donate to something they don't understand? A key message to get across is that M.E does not discriminate. Without scaremongering, it could happen to anyone at any time. Maybe once Joe Public understand that, they will understand the desperate need for M.E research funding.

I have created a Go Raise account (Link) specifically with M.E sufferers in mind. I have so many emails from people saying they would love to donate but can't afford to. As I have said many times before, I completely understand that. However, if you shop online already - groceries, presents, Ebay, car maintenance etc etc, retailers that you use will donate for you (You just need to specify that MEFoggyDog is your chosen cause). It doesn't cost you a penny extra. 3000 retailers in the UK have signed up. If you use a PC, Go Raise gets added to your browser. You automatically get notified if the retailer you are using is part of the scheme. It also tells you how much of your transaction (%) will be donated. It is VERY EASY to set up. If you shop using your tablet or phone you will have to access Go Raise before you purchase anything and then access the retailer from the site. Please use the opportunity to add money to Foggy's fund. 5 people have signed up so far. I know, for sure, that at least 200 of you buy your groceries online for home delivery - because supermarkets are soooo bad for causing M.E symptoms to flare. We are missing the opportunity!

Foggy is currently travelling first class surrounded by bubbles (post/jiffy bag) and will be cruising around Europe on board the Queen Elizabeth Cunard liner next week. How exciting! It is possible to track his progress on the Q.E's website. I'll share the link on Tuesday. It'll be a bit like the Santa tracker! Thank you Lizz Lipscombe/Elektra for taking Foggy with you.

Love,

Sally xxx 

(I haven't checked spelling etc, apologies if it's rubbish...brain fog today)

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.

Monday, 28 August 2017

Technology and Self-Employment

Hi,

Foggy is cruising around Ireland on-board the P& O ship Oriana as I type this. He is in Dublin today, Linda will have her work cut out trying to stop him from indulging in pints of the black stuff! Linda has promised lots of photos of his exploits but, understandably, may have wifi issues on the ship. So, photos will be uploaded after their trip. Looking forward to seeing what he got up to!

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! (see wordsangel.co.uk)  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)

Saturday, 26 August 2017

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