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)

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

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

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)

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 limb! It'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)

2008: Mid-Diagnosis

This illness is making my life drain away and it doesn't feel like I have much left. 13 months of misery is just too much to bear without being diagnosed yet. It feels as if I've lost most of my friends because I can't put the time/energy into those friendships, and it now grates every time I have to decline invitations due to ill health. I just want to be diagnosed in order to be able to control my symptoms and subsequently my life.

That was me, this was a diary entry dated Tuesday 1st January 2008. My symptoms had started in October 2006 and I was in the middle of the long journey towards getting a diagnosis (If only I'd known that the diagnosis wouldn't end my difficulties!). I am sharing this personal diary entry in the hope that people will understand that I am genuine when I say that I understand. I've been there. Later diary entries mention referrals to psychiatrists and being on a suicide watch list (I can't remember the term but that covers it). I was as low as it is possible to get in M.E terms. I didn't feel as if my life was worth anything. I have ongoing PTSD and depression (combo of M.E, a #metoo incident, and workplace bullying), luckily, I have people around me who still support me during very trying times. 

I made the decision to keep ME Foggy Dog as lighthearted as possible for two reasons.
1. I can bring some sunshine into the lives of people who are struggling.
2. Positivity grows engagement with our cause much more effectively than negativity.

To be clear, I 100% think that M.E is a life-destroying illness and can fully understand when people living with M.E vent their anger. However, I find that people tune out of such overt negativity. We need people to listen, not turn their backs. 

A few people have been offended/upset/annoyed when I have asked them to write Foggy a guest blog in a positive way, devoid of political opinion or rants. I am set on this approach because I want M.E peeps to tell THEIR M.E story, how it affects them, and what their hopes for the future are. You can

be surprisingly effective by simply telling your personal story. I'm not asking for Disney-style singing and dancing positivity, just steer clear of negativity. Let people see the people behind the statistics and political debate. There are plenty of other organisations to write for if you want to share your opinion about GET/PACE or about the neglect of M.E patients. Unrest and Jen Brea are a case in point, it is essentially a love story that highlights our M.E fight. Positivity works.

I used to have a very negative mindset and it was at risk of driving my friends away. I would see the negative viewpoint with absolutely everything. That was until I attended a seminar from Andy Cope (see The Art of Being Brilliant). He is an advocate on happiness and positivity. He showed me that there are ways to be positive in the most devastating of circumstances. Thank you Andy. I try my hardest to not be a 'mood hoover'.

I find negativity breeds negativity. This is also why I never respond to negative comments on my tweets. I will not enter into an argument online. I struggle to keep my mood upbeat so actively avoid anything that would affect that. I raise awareness of our cause by sending a soft toy around the world, I use soft and fluffy adventures to highlight a seriously debilitating illness. Not a smidge of negativity in sight.

Love,

Sally and Foggy (Obviously) xxx