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Saturday, 21 April 2018

News

Hi Guys,

So much has been happening over the past month or so, I figured it would be best to put all the info in a blog so you don't miss anything!

First up - Team Foggy LOVE the new OFFICIAL promo video!! It was filmed last August but given to us yesterday. Perfect timing for our big push in the final few months of this current World Tour.

Promo video

The structure of ME Foggy Dog will change after July but Foggy's globetrotting exploits will always continue. That's what we do! The new stuff will simply be in addition to the fun.

Foggy will get back to Foggy HQ later today, then it's straight back into first class surrounded by bubbles (post) to go and visit Emerge Australia in Melbourne. He can't wait to meet the Emerge team, Team Foggy think they do an amazing job for the Australian/global ME community.
The day Foggy met Retha

Foggy LOVED meeting Retha from the MECFS Foundation South Africa this week. She is his new favourite lady. Retha has M.E herself and works very hard to spread awareness of M.E/CFS in South Africa, and the wider continent of Africa. She has a monumental task ahead of her and Team Foggy are happy to help in any way that we can. See the photo album of his South Africa adventures here

Foggy's itinerary has been rejigged a number of times just lately so here is his current schedule.

22nd April - 5th May - Melbourne, Australia (Emerge Australia)
11/12 May - Team Foggy May 12 events in Portsmouth
15-22nd May - San Francisco
GAP
1st - 7th June - China (not 100% confirmed)
9th - 18th June - Disneyland Paris (GOOFY and Eurostar - Bucket list!)
GAP UNTIL 3RD JULY
World Tour Final day!  - Tower of London!
Foggy Followers are more than welcome to join us on our last day but FYI we will be sticking to a tight schedule. Let us know if you are intending to meet up with us.

If you can help to fill these gaps with a holiday/business trip, please get in touch!

MAY 12

We had every intention of having a low-key ME Awareness Week and May 12 this year. I wrote a week's worth of articles for the Star and Crescent (Portsmouth online newspaper) and thought that would be it. But no, I got over-enthusiastic as usual and am now doing quite a bit more than that!

Both events are open to everyone whether you are an M.E sufferer, member of a support network, friend, or an interested member of the public.

Friday May 11 - M.E Awareness Week event. Team Foggy will be holding a small awareness event in the Frank Sorrell Centre in Portsmouth between 12.30 - 2pm. Thank you Sharon from FSC for allowing us to hold this event within your Centre. Come along, meet Foggy and I, and help us to raise awareness. You can even have a pic taken with the globetrotting megastar himself! See all info here

Saturday May 12 - This year, our International M.E Awareness Day event will be a coffee morning in the Lily and Lime LD cafe in the Central Library in Portsmouth. Thank you to the Rotary SI group for helping to organise this
event. Team Foggy will be in the cafe between 10am-12pm. Same as the other event, Foggy and I will be happy to chat with anyone about M.E whatever your involvement with the illness and our M.E community. Don't forget to 'Go Blue'! Come along and help us to make our voices heard! See all info here

Both events are 2 hrs or less because.....I have M.E myself! I don't have the energy to be 'hostess with the most-ess' for long periods of time.

Finally, I have had a chat with the Frank Sorrell Centre about holding regular M.E support groups and they've said yes! So, once a month I will be holding an hour-long support/coffee and a chat session. They will be every third Tuesday of each month (apart from July due to a clash) and will be between 12-1pm. It's free to attend but tea/coffee will cost 50p. The Centre is a charity and so any contribution towards running costs is gratefully received. So, if you live in the Portsmouth area and would like to attend these support groups please do let me know. I will be publicising dates closer to the time (from June) but it would be good to have an idea of numbers. The Centre is the perfect venue as I am able to provide M.E and emotional support but they will be able to help with any disability-specific issues/questions. They are an amazing point of reference for many disabled people in the area. 

That's it for now......

Love,

Sally
and Foggy (OBVIOUSLY xxx) 

Don't forget to donate! You can give us your cash via mefoggydog.org. Thank you x







Tuesday, 10 April 2018

Work with M.E....Next Chapter

Hi!

I wrote a blog about M.E and work way back in 2014 when I was in full-time employment Work blog. How times have changed! At the time, I couldn't be 100% truthful as to the full extent of my inability to do this library job as I didn't want to lose my job! I left that job due to 'working relationships' (read into that what you will) but with hindsight, I doubt I could have kept up full-time working for much longer, so leaving 2 years ago was a really good move for me.

So, now I am the proud owner of Words Angel (wordsangel.co.uk), a small business that does social media marketing and proofreading. Two things I can do from the comfort of my own home, and most importantly, to my own schedule. On average I work between 25-30 hours per week but these hours are split into chunks across a 12 hour day and 6 days a week. For example, I might wake up early and do an hours' work between 6-7 am, rest for a bit and have breakfast, do another hour 9-10 am, take a rest break and do some mindfulness. I'll then fit another hour in before lunch. I'll rest for a couple of hours after lunch (usually watching the Ellen Show....she brightens my day). Another couple of hours' work are squeezed in before dinner. I might do an hour in the evening to finish off a
project....but that's how I do 5-6 hours of work per day. 

This type of working would not be possible if I was employed part-time to do the same amount of hours for another business. Inflexible set hours wouldn't work for me as working patterns tend to come in blocks of 3-4 hours. My weary M.E brain and body can't do fixed chunks like that. Work, rest, work, rest, work, rest, work is how I roll.

I was recently having coffee with a business friend, I was moaning about my lack of money and that my business is still building. He asked why I couldn't find myself a small part-time job to keep money coming in. I said to him that as much as I'd love that, it's just not possible. M.E fluctuates. I have no idea when I am going to be feeling so poorly I can't function. Our M.E bodies force us to cancel plans regularly, that includes having to take sick days when our symptoms have flared. I had so many warnings from Occupational Health about my level of sickness it became a constant stress that I didn't need.

2 years ago, I was terrified of admitting that I wasn't able to work full-time. I didn't want to be defined by my health. I still had hopes, ambitions, and drive. Unfortunately, I job hunted for 6 months initially without success. Despite being a postgraduate and having decades of experience, no one would employ me. So, I took my situation firmly into my own hands and became a sole trader with my own business. I remember reading a 'Building a business for Dummies' type book for hints and tips. On the first page, it said that if you weren't in the best of health you shouldn't bother trying to set up your own business as it takes hard graft and a lot of working hours per week (the book said 60+ hours). This is true. However, I have met a lot of disabled people who find self-employment is the only option. I don't want to build a huge digital marketing agency, I'm happy as long as I pay bills and have some disposable income. I'm constantly having to rein myself in as having M.E doesn't stop me being ambitious! However, 12 years into this M.E hell and I am learning to accept my limitations. I was beating myself up yesterday whilst chatting with a friend, she stopped me and said '...but you're DOING it!'. Yes - I am.

I'll never forget my former boss taking me into her office and saying 'I'm worried that you are living to work at the moment'. That was 6 months before I resigned, she was so right. I was resting all the time I wasn't at work to make sure I able do my job effectively. That's not a lifestyle worth having.

I wonder how many of Foggy's Followers are in a similar situation to the one I was in 2 years ago. I wouldn't be surprised to find it's a common problem for mild sufferers.

Love,

Sally xxx
and Foggy (OBVIOUSLY)

P.S.... Need social media training/mentoring or a proofreading service? See wordsangel.co.uk 💪

Wednesday, 28 March 2018

Choices

Hi,

Foggy is snoring softly next to me in Foggy HQ so I thought I'd make the most of the peace and quiet and write a blog about the choices M.E sufferers make to make the most of the little energy they have.

People living with M.E have limited energy; our energy can be represented by a non-rechargable battery. We only have a certain amount of energy each day and we have to make sure our battery doesn't go flat before bedtime. This means we are very good at micro-managing our time and activities. We have to make choices. What is worth spending our valuable energy on?

I regularly have to make decisions like whether drying my hair or meeting a business friend for coffee is more important. Which activity holds the most value for me personally? In this scenario,
meeting the business friend is more important, but is the interaction damaged by turning up with wet hair? With a new acquaintance it might be, but most of my business friends know about my M.E life and are understanding. Unless you have limited energy you will not understand how exhausting blow-drying long hair can be. I have thick hair that holds lots of water! It takes around 15 minutes to dry. That's 15 minutes of holding both arms above my head shaking a hairdryer and pulling/twisting brushes. It's exhausting! Fortunately for me, my hair 'hangs' well so I can just wash and go! It takes hours to dry naturally though so sometimes the need for a blow-dry is unavoidable.

I sometimes have to cancel plans with friends because I know I simply won't have any energy left at the time I am due to meet them. It used to feel odd to me, cancelling BEFORE I felt too ill to go out. However, I'm now an old pro after having M.E for 11 years and prefer to not leave the inevitable cancellation until the last minute. It's not fair on my fabulous and caring friends, I find that plenty of warning helps the situation be a bit more tolerable.

Anyone who hasn't heard of the Spoon Theory - read this. The Spoon Theory This excellent way of describing how we manage our energy levels if we have a chronic illness has been adopted by millions of people worldwide.  I personally don't, but many call themselves 'spoonies'. We lose energy every time we undertake an activity whether that is washing up, climbing stairs, getting out of bed, showering, cooking dinner, writing a blog......  All of these activities mount up and we find our battery is on the verge of being flat very quickly if we don't learn to say no or make wise choices.

Saying no is blooming difficult, I am a people pleaser so will always push myself to do more than I should. I have learned over time to say no more, but I have met with resistance from some quarters. This resistance is understandable I suppose, these lucky people don't have the energy of a washed out rag and remember, we don't look sick. Rest assured though....we FEEL sick....very sick, every day. Understanding and consideration goes a long way if we have just cancelled our plans with you or can't do a favour/job for you. It won't have been a decision we have taken lightly. Unfortunately, we know our need to save energy is far, far greater than pleasing our friends and loved ones. Sorry!

Love,

Sally (and Foggy OBVIOUSLY)

Monday, 26 March 2018

Apology

Hi,

It occurred to me this morning that I have been neglectful of Foggy's Followers and I am really sorry about that. There are a couple of reasons for this -
  • I have an appalling memory (surprise!)
  • As Foggy has grown there are soooo many people to keep on my radar it is virtually impossible.
I have to remember names, how I know you, where I know you from, what country you live in, your time zone and whether you are a sufferer, linked to an organisation who can help the ME community, or an interested member of the public (my favourite type of 'normal' people).

It's not really a surprise that I can't regularly keep up with you all. On top of that, there are the people who aren't on social media but follow the blog site or website, or local M.E support groups who have contacted me about attending meetings. I also lose track of people who have emailed months ago and then gone off my radar.

So, I would like to take the opportunity to tell everyone who has taken an interest in Foggy since July 2014 that I value your support, input, and interest. Whether you have been a 'Foggy-sitter', attended one of my events, spread Foggy love with merchandise, donated, taken an interest in ME Foggy Dog on social media, or engaged in other ways.

Feel free to give me a nudge/reminder/shout any time!

Thank you.

Sally xxx

Wednesday, 21 March 2018

Mark's M.E Story - Guest Blog Post


My ME story has no clear start date, as I am one of the few where it seems to have developed slowly over time though, with hindsight, it is likely to have begun sometime during my early teens. Diagnosis was 30 years later, but with a noticeable increase in symptoms in the last decade. This has been complicated by also having Generalised Anxiety Disorder (GAD), which provided the perfect cover story for the ME, hiding its symptoms amongst the symptoms of the GAD. Only when the GAD had been controlled for a couple of years did the penny drop; ‘maybe this fatigue and pain and brain fog is something else’?

My ME is ‘mild’; I still work full-time, but I have had to change jobs to achieve this. I used to be a college lecturer and departmental manager with a strict regime of hours and a backlog of work to be done at home, but now I work 9-5, 5 days per week in a role where I have reasonable control over my pace of work. On good days I can even do some housework, but generally I can’t and I have to rely on my husband to do all the chores, with weekends reserved for spending time together in the mornings and me sleeping/resting in the afternoon. Bed time is always 9pm.

The continuous aches and pains are the most irritating physical aspect of the condition for me, but I am finding the psychological aspects, the need to accept that past ambitions will have to be shelved, potentially indefinitely, actually the hardest thing to cope with. On a good day, I could take on the world; I can get up, eat breakfast, shower, brush my teeth, tidy the kitchen and be at work early with a cup of tea in my hand before 9am. On a bad day I get up, eat, go back to bed, get up, brush my teeth (sitting down, as standing is too painful), get dressed, sit down again then get to work sometime between 9 and 9:30. These are the days when I realise that ambition is something for the fit and healthy, and that I will happily settle for employed.

Life is not all doom and gloom though, and I am not as miserable as I sound. My life is much quieter than many peoples’, but it is happy. I am genuinely grateful for my ‘mild’ ME, because it is not ‘moderate’ or ‘severe’. For those of you out there who are not as fortunate as me, I am truly astounded by your bravery. Hopefully the future will be brighter for all of us, especially with awareness of invisible illnesses increasing, and I look forward to a time when being fatigued is understood to be a bit more than ‘overly tired’.

Mark

Wednesday, 14 March 2018

PACE Trial: The Movie

Hi,

Now this is going to a random blog post but it was inspired by watching The Rainmaker during a rest afternoon yesterday. Anyone who hasn't seen this 1997 film, sorry but I'm going to spoil the ending for you! It struck me that there are similarities between John Grisham's fictional tale and our real life nightmare with the PACE trial, DWP, and insurance companies.

The synopsis of the film is:

A family have paid health insurance premiums for years but are denied cover when their son becomes gravely ill with Leukaemia. The
family are told that a bone marrow transplant could save him but the insurance company deny their claim 8 times. The family call in a newly qualified attorney to help them to fight the corrupt insurance company. There is a tense courtroom battle with this closing argument scene. The family win the case and win $50m in punitive damages. The insurance company goes bankrupt due to the other cases that should have also been paid out.

Am I the only one who can see 'ish' similarities with this book/film and our PACE trial issue? If only Hollywood/authors would wake up and create a film to highlight how this scandalous treatment is actually happening in real life to thousands of people. 

Just imagine if someone took the Department of Work and Pensions (DWP) (are we able to sue a government department?!) and health insurance companies to court. They knew that the PACE trial was deeply flawed and was severely detrimental to the lives of those M.E patients who participated in the research study, or had Graded Exercise Therapy (GET) prescribed as a result of published findings. Despite this, insurance companies refused to cover claimants unless they had participated in GET. Many of these claimants subsequently endured deteriorating health because of GET and became housebound/bedbound as a direct consequence of the insurance company instructions.

I reckon John Grisham could turn our plight into a bestseller. Our plight doesn't just affect one person, it affects thousands of desperately ill people around the globe.  The closing argument would have a montage of a selection of thousands of people detailing how their life was destroyed by GET. It would make for one hell of a courtroom drama. 

It's a mystery at the moment as to how the PACE fiasco will pan out, we have a very long road to travel to get answers, apologies, and recognition of both our illness and of the damage caused by PACE/GET. In the meantime, let's all dream that one day insurance companies, and DWP for that matter, get the comeuppance they deserve.

The PACE trial has already become a case study for legal professionals.https://www.roydswithyking.com/pace-trial-scandal-me-cfs/

Love,

Sally xxx
and Foggy OBVIOUSLY)

Sunday, 11 March 2018

Explaining M.E to children

Hi,

Yesterday, I attended a local International Women's Day/Young Women's Day event. I was taking part in speed meetings which gave girls aged 11-19 a chance to talk to 'inspirational women'. I took Foggy along to show how I raise awareness of Myalgic Encephalomyelitis (M.E) and I think having a soft toy there helped them to relax a bit. Surprisingly, I found it incredibly difficult to explain what M.E is to young people who have no knowledge of the illness. I became very aware of just how many very long words we, the M.E community, use to describe our illness. One of the youth workers helped me out by saying it is also known as Chronic Fatigue Syndrome, which I guess would be slightly more understandable, but I HATE using that name and didn't want to use it! . 

I really didn't do a good job in terms of describing what M.E is. This is a worry for me as the new social enterprise will include training for teachers and a fun info section for children. Teachers can refer classes to this info to learn about the illness. I need to come up with very basic language to accurately describe our complex neurological condition.

In my defence, I have very little contact with any human beings under the age of 16. I find it very difficult to 'dumb' down what I need to say. I usually resort to 'have you ever felt really poorly and don't want to get out of bed or move around? That's how I feel every day', that kind of thing. Hardly an accurate description! It's not as if I can point to a skin rash, plaster, swollen limbIt's an invisible disability. It is going to be difficult to get a child to understand that. I'm sure M.E peeps who are parents do an element of storytelling when they are describing their M.E experience to their children. For example, 'Remember when Mummy couldn't get the washing out of the washing machine? I felt really tired and my arms were hurting'. That kind of thing, please let me know if I am way off the mark. Talking about M.E to children has never been on my radar and it's something I have got to learn.

21,000 children and young adults have M.E in the UK. Teachers and their students need to know about, and understand the illness. How can we expect schools to know how to support their students if they have no idea how M.E affects sufferers? We all know that the official info schools have access to is not fit for purpose. Anyone taken a look at NHS Choices recently? Perhaps they have a GP contact? If healthcare professionals don't have training either it doesn't bode well! Yes, there are specific M.E children's charities such as the Tymes Trust but would schools know to contact them? I'm going to reach out to UK schools and deliver the info before the need to offer additional support arises. I have been contacted by Headmistresses in the past who are desperate for info because they have just found out that 5 students in their final school year have been diagnosed, and they have no idea what additional support should be offered. I'm a strong believer in 'forewarned is forearmed'. Headmistresses, teachers, and teaching assistants will be able to instantly support a student without delay after receiving my training. I raise awareness of M.E from a human perspective so that it is easy to relate to, hopefully that will help the training to be as effective as possible.

I had un-diagnosed M.E in my teenage years and I was very lucky that my school had a policy of sending classroom notes/homework home if a student had a high level of sickness absence, whatever the illness or whether the student had received a diagnosis. I have asked my parents and they don't remember if they had any input in that decision. That was over 25 years ago and I doubt very much that M.E or the dreaded name Chronic Fatigue Syndrome would have been on their radar. I was able to complete the work at my own pace. I came away with 9 GCSEs above grade C so it was a policy that worked for me personally

If you are a parent of an M.E sufferer (16 yrs and under), could you ask them how they explain their illness to their friends? I need to know what language they use themselves. Rather than how an adult explains an illness to a child. I need to get my approach spot on. I hope you can help me with that. Please contact me via the contact button on MEFoggyDog.org.

Love,

Sally
and Foggy (OBVIOUSLY)