Meet Team Foggy's Friend and Founder of ME CFS Foundation South Africa, Retha Viviers

Hi!

I'd like to share the love about Team Foggy's friend Retha Viviers. Over the past year or so, Retha has become a close confidant and someone to bounce ideas off. She is also the reason I became aware of the dictaphone option on WhatsApp. We use that function to communicate as typing is usually far too tiring!

I want to help to raise awareness of her story, why she set up the ME CFS Foundation in South Africa, and how we can help her in her efforts. This is the first of a number of blog posts about M.E in South Africa, as told by Retha Viviers. 

This is Retha's M.E story.

My name is Retha Viviers. I was born in Johannesburg in South Africa. I am happily married and have 2 lovely daughters; aged 26 and 18 years old.

I studied quite a bit at University and enjoyed working. I started in Marketing Research, moved onto Business Analysis and later became co-director of our own business providing different services in the petroleum and later on the security industries. 

I always had a lot of energy: I used to love: dancing, camping, hiking, socialising, doing things on the spur of the moment, playing and swimming with my children, reading, etc. I was outgoing and loved talking to people. We lived at the coast when I underwent a fairly big stomach operation in 2002.

My life was about to change …

The expected recovery time for my operation was 6 weeks; however, months after the operation I still couldn’t build any stamina, I knew something was wrong. I started getting viruses all the time and struggled waking up in the morning.

My health deteriorated and during 2004 I was eventually diagnosed with Myalgic Encephalomyelitis (also referred to as Chronic Fatigue Syndrome) – hereafter ME/CFS. I was fairly fortunate in that I could still continue working up to 2008.

However, at that time I could no longer drag myself through the day. Long before then, the activities I so much loved became a MEMORY, no more dancing, hiking, playing and swimming with my children, etc. 

I had to face the fact that life as I knew it was completely over. I finally had to accept that my body was broken.

Having ME/CFS is a difficult life, but when my oldest daughter contracted a virus which attacked her heart and ME/CFS symptoms started our family was literally devastated. She had to leave school and continue with her last year of school via homeschool. Her dream of becoming a doctor was shattered; this was 9 years ago. She started reading medical books by the age of 12 and that was the only field which interested her, it was her passion. 

Watching her missing out on life a young person should be living breaks my heart!

Personally, ME/CFS came at a big cost to my family and I but I have also gained in unexpected ways. From a cost point of view, I’ve lost the ability to earn an income, which ruined us financially as I was supposed to become the main breadwinner, my husband is 15 years older than me and he was going to be the househusband, take care of the children by scaling down his involvement in our business. Due to my illness and two projects which went south we lost our house and all our life savings. My husband worked as an engineer but was close to 60 then and couldn’t find a position as South Africa gives preference to previously disadvantaged applicants due to the terrible “Apartheid” system. My oldest daughter’s ME also added to our already dire financial situation. Touch wood my youngest daughter is healthy and is completing high school in November this year.

I’ve lost my identity to a large extent, and my memory and other cognitive abilities have deteriorated significantly. Physically I have become weak. Getting ME/CFS is like a jail sentence. The time you spend in your cell and how big your cell is depends on how severely ill you are. A cell can be your bed, a room, or your house. Leaving your cell comes at a high price and you risk the chance of a relapse. It is called post-exertional malaise (PEM).

ME/CFS is also an isolating illness. Telephone calls can be exhausting, so socialising is very difficult if not impossible. Going over your energy limit (some call it the number of spoons you have available to use per day) leaves you feeling very ill for a few days, if not longer, after an event. There is no room for doing things on the spur of the moment, etc. People need to understand ME/CFS is a disability; it is just the level thereof that varies. In terms of an ME/CFS disability scale, I am around 50 – 60% disabled.

From a gaining point of view, despite all the heartache and hardship, ME/CFS has enriched my life. There was a small ME Association in South Africa headed by the late Arlene Vermaak. She collected articles from across the world and issued a hard copy magazine quarterly. Arlene did a lot of work for ME awareness in South Africa but unfortunately died of cancer in 2015. As Facebook became a way to form online groups I started a support group on Facebook in November of 2012. It is also very difficult for ME/CFS patients to attend physical events. 

Over the next few years, I became aware of the dire needs of patients for hope, companionship, financial assistance, medical treatment, special care facilities, and basic living necessities. This was pretty much the situation I was in as well. I have come across the most amazing people, very ill and in severe pain, but still very kind and as positive as can be. 

The ME CFS Foundation South Africa NPO

I realised something formal (and it had to be quick) had to be done for ME/CFS in South Africa and founded The ME CFS Foundation South Africa NPO together with my daughter (also suffering from ME/CFS). We are currently in the process to appoint our fifth director.

I found a new purpose in life, one of helping others in the same or worse situation we’re in. I function from home, sometimes on bad days from bed. I try to stick to my resting schedule, but there are still days where I am too ill to do anything. Knowing the suffering of fellow patients keeps me going and it has become my passion to make a positive difference in the lives of others with ME/CFS.

I have formed strong bonds with many fellow patients; some being extremely ill, many living in dire circumstances in need of urgent assistance. I will not rest until we have helped them. Each person reached makes all the hard work and sacrifice more than worth it.

We have patients in need of basic medical treatment, basic living necessities, accommodation, etc. At the moment there are no government disability benefits for ME/CFS patients in South Africa, to the best of my knowledge only one person has been successful applying for these and the amount is a mere R1 700 per month (₤90).

We have come a long way the (almost) past 3 years and have really progressed with raising awareness, educating the public and healthcare practitioners, helping patients getting diagnosed, assisting with basic necessities, counselling patients, providing support and hope through our online support group, was on several TV and radio programs and in a few newspapers/magazines, established relationships with awesome people (Sally and ME Foggy (with Kat) included), participated in small research projects, participated in #MillionsMissing , screened UNREST, etc. We are in the process of helping a ME/CFS and FM patient to be medically boarded by her insurer, this is a critical watershed matter and we HAVE to help her succeed.

However, we need help….
·   Fundraising is challenging in South Africa due to the ECONOMIC and POLITIICAL uncertainties and the current requirements by Government

·   We can issue Income tax receipts for donations for those living IN South Africa.

Retha Viviers


**** Foggy Followers, if you are able to help Retha and M.E/C.F.S patients in South Africa by donating to her charity, please click this link. The exchange rates make donations from other countries very beneficial.

Thank you.  

Allergic To My Tumble Dryer!

Hi,

Having M.E sometimes turns me into a super sleuth. Just call me Miss Marple! Trying to work out exactly what has caused a symptoms flare can often be a fruitless task, purely because of the complex nature of our illness but sometimes the cause of discomfort can be nailed down and prevented.

Many M.E patients have sensitivities to sound, noise, chemicals, and odour. My own sensitivity to odour has been heightened over the past year or so. In particular, sensitivities have flared dramatically when I am washing clothes and bed sheets. I am going to give you a timeline of my investigations to show how my super sleuth conclusion came about!

5 years ago - My tree pollen allergy flared and I had to stop drying my clothes and bed sheets outside on the washing line as the odour caused a reaction in my respiratory tract and I had breathing difficulties. So, drying everything on clothes airers indoors began. Bed sheets were dried in the

Me (Miss Marple) 😀 

tumble drier though just for speedy 'get them back on the bed' turnaround. Allergy - prevented.

1 year ago - Breathing difficulties, sinus problems, itchy/watery eyes started whenever I put on freshly washed clothes or slept in just-washed bed sheets. I realised that my parents had recently changed their brand of washing liquid so I started buying my own hypo-allergenic brand. I had to try 4 brands before I found one that I didn't react to. Problem solved.

4 months ago - We needed a new tumble dryer. We bought a new condenser tumble dryer. As it was a nice hot early summer I was able to hang the sheets in our hot conservatory and they dried in a couple of hours. Perfect! Allergy-risk free!

3 months ago - Breathing difficulties, sinus problems, itchy/watery eyes re-started but this time only when I was in bed. What was going on?! It was a rainy week and I had used the shiny new tumble drier to dry my sheets (more of that in a bit) I wondered if my allergic reaction was because my head was in such close proximity to a just-washed pillowcase and duvet cover. So, maybe I was still allergic to the hypo-allergenic washing liquid?! I changed to Eco eggs that have zero chemicals in them. Allergies disappeared again. Great!

1 month ago - The really hot summer came to an end and I had to start drying bedsheets in the tumble dryer again. Breathing difficulties, sinus problems, itchy/watery eyes reappeared. For goodness sake! Has anyone else got a condenser tumble dryer? Have you ever sniffed inside the drum? Ours smells metallic/musty. The exact same smell that is on my sheets at night after they've been washed.

I Googled to see if anyone else had the same problem. I didn't see anything about allergic reactions but lots of people in forums have said that they also notice a metallic/musty smell inside their condenser tumble drier that they found unpleasant. Not just me then!! Well, apart from the allergic reaction thing!

If any of you are, like I was, driving yourself crazy trying to work out what you are allergic to, sometimes you have to think outside of the box!

The Callow house will now look like a Chinese laundry as I attempt to avoid pollen of various forms and the demon tumble dryer!

What a palaver!

Love,

Sally
(and Foggy OBVIOUSLY)
xxxx

Future Plans with Stripy Lightbulb CIC

Hi!

Team Foggy and my new business Stripy Lightbulb's Non-Executive Director Yvonne had a great time in London yesterday. We went to the London School of Hygiene and Tropical Medicine to see the Cure M.E/M.E/CFS biobank team.

The main reason for the visit was to talk about Stripy Lightbulb CIC, my new social enterprise. Community Interest Companies work for the benefit of communities. In our case, the community involved is the M.E/C.F.S community. As it says on our new legal documents, Stripy Lightbulb CIC works for the 'benefit of the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E/C.F.S) patient community'.

Our community will benefit in 3 ways:
- The stigma surrounding the illness will lessen as a result of the training and awareness-raising
- The support patients receive from participants of the training will be more beneficial and appropriate to the condition.
- Surplus will be put towards M.E/C.F.S research funding, of which there is a severe shortage.

These points are made in our legal documents in our statement of activities and related benefit.

The Cure M.E team meeting came about because I want them to be the

Team Foggy, Yvonne, and the Cure M.E team.

beneficiary of our 'surplus'(profits). After meeting the team yesterday, I am very happy and am 100% sure that I made the right decision. I had asked to be able to have info about their latest research on the new Stripy Lightbulb website, for additional information but also to reinforce what I was teaching and to add weight to the CIC. Cure M.E have offered support and even more assistance than had been anticipated and I am very grateful for that.

Foggy and Stripy are two completely separate entities, Foggy is for advocacy and Stripy is for education. Both have the same goal - to raise research funding. I'm going to try and not mix the two too much in the future as they both have different audiences and objectives, but I want to let Foggy's Followers in on the excitement that is going on at the moment!

Foggy came along for the ride as some of his fundraising, via the ME Association, ended up at the biobank. He wanted to take a look around! He also loved having his ego massaged a lot yesterday.....the Cure M.E team were well and truly 'Foggy'd'!

In a nutshell, Stripy Lightbulb CIC will offer online M.E/C.F.S training for healthcare/education/business professionals. All of whom have a duty of care over M.E/C.F.S patients.

The biggest tasks ahead are getting these professionals to recognise the need for training and also pay for it! Paying for it = research funding.

I need to say thank you to Foggy Follower Claire Thomson. Claire is an accountant. Claire has been a lifesaver this week. Claire has been able to transform my attempts at working out figures into a cash flow forecast. Thank you Claire and lots and lots of Foggy snogs coming your way xxx

As I mentioned on Twitter this week, thanks also have to go to James, my website guy. Fortunately, James now knows me, after doing Foggy's website for over 3 years. he knows how my brain works and also understands that I know barely anything about I.T! Just because I WANT an e-learning platform,  doesn't mean I know anything about them!! James has been very helpful with support and advice. Together, I'm sure we will do a fantastic job!

That's it for now. Apologies if this blog is a bit rambly, I was awake at 2.37 AM....I was clearly over, over, overtired yesterday.

Love,

Sally
(and Foggy OBVIOUSLY)
xxxx

A Few Noteworthy Things...

Hello!

I hadn't planned on writing loads of blogs during Foggy's home stretch but a few things have happened that should be talked about.

Yesterday, for want of a better word, I was 'head-hunted' due to my social media marketing business to 'host' a Twitter hour slot for the foreseeable future. I had a phone conversation with the founder of this successful business related Twitter hour (38k followers) and felt extremely happy to be asked. She said she weekly has hundreds of requests from social media marketers to do hosting but she only uses people who have demonstrated creativity, talent and experience. It would have given me much needed exposure for my business. Whoop....what a fantastic compliment. I would have snapped her hand off....if I didn't have M.E.

This Twitter hour is at 1pm, JUST when my M.E usually starts to hit, regardless of what activity I have done during the morning. I find that social media is draining when I schedule tweets or send them out spontaneously during the day. One hour of absolutely concentration, creating content, topics, and responding immediately to interaction.....ugh. It's a busy twitter hour, I know because I interact with it myself. It's got a very good reputation for having great content and being good fun. 

Part of the reason I turned the opportunity down is guilt. I would feel dreadful if I couldn't keep up with the time commitment due to my M.E or if I struggled cognitively halfway through an hour. Due to the nature of the beast, it is a solo venture. Just me, sitting at my desk, 'talking' to lots and lots of businesses online. I wouldn't have a back-up plan. She explained it as like being a DJ, I would simply be filling in a slot of time.

I am disappointed but know it is well outside of my energy possibilities. Such a shame, I know I would have loved it and been blooming good at it! You can't be witty and fun if you are cognitively comatose. I am just going to take the opportunity offer as a huge compliment of my social media ability, it's great to be recognised professionally.

The second thing happened this morning. I have just watched a segment on Sky Sunrise about how patients with chronic illnesses deal with sick days with employers. Crohns and Colitis UK have done

some research, that's why they were on the breakfast news show. This piece of research highlights that instead of being honest about why we need to take time off sick, patients (in this case Crohns and Colitis but the same can be applied to all chronic illness...M.E included) say they have a common complaint instead of naming the chronic illness as the reason for the time off. So, for example, they might say they have a tummy bug and so need to take one day off when in actual fact it is a flare of their chronic illness. Everybody knows what a tummy upset is like, no need for graphic explanations or in-depth conversations about back to work schedules etc.

This resonated with me personally because, as a mild sufferer who was able to work full time, I used to do this. I used to proclaim that I had never had a day off due to M.E. I lied. I lied for 2 reasons.
1. When I was in employment I didn't want to give my employers an excuse to call me unfit for work.
2. After I left, I was job hunting and I didn't want to put potential employers off.

The sickness level in my department was high across the department so I didn't stand out as the 'sick' person. I wasn't anywhere near the limits of acceptable sickness absence. However, I did take quite a lot of time off with migraines, headaches, feeling nauseous, very low blood pressure, feeling faint -ringing bells with anyone?!

Wouldn't it have been lovely if my employer understood my illness? Wouldn't it have been great to not have to lie about what was wrong?

Love

Sally
and Foggy (OBVIOUSLY)

xxxx

Never-Ending What Ifs

Hello!

Devoted fans, Sally drives herself nuts by wondering if there is anything she did pre-M.E to trigger her illness. Maybe she shouldn't have got so stressed over a breakup or maybe she should have looked after herself better. I'm sure she's not alone in that way of thinking. I keep telling her it's nothing she did to herself but I'll let her explain that mindset in this blog.

Hi,

I'm sure I am not the only M.E sufferer on the planet who goes through phases of either blaming themselves or wondering if getting M.E was preventable.

We were having a tidy-up in our loft last week and I came across the record card that was filled in by the Health Visitor from when I was born up to the age of 5. Interestingly, it says that both my vision and hearing were stronger on the right-hand side. Since having M.E, it has been noticeable that my left eye

muscles are incredibly weak ,and the Labyrinthitis that triggered my M.E affected my left ear and subsequently, any migraines/balance issues start on my left side. I lean to the left which means all of my left-hand pockets are ripped due to catching on door handles! I also had chronic colic, vomiting and digestive problems for the first 18 months of my life (my Mum had a 'bad pregnancy too').  Which makes me wonder if M.E is something we are born with and is not acquired in later life. Because many of these health issues can be included under the umbrella of M.E. However, there are people who have M.E who didn't have health problems in their early years so there doesn't seem to be a pattern there.

It's little things like this that I try to fit into my M.E puzzle. If I hadn't been so stressed in my 20s due to relationship dramas, housing issues, studying for a degree etc, would M.E have started when I turned 30? Should I have taken better care of myself? Done regular yoga sessions, eliminated toxic relationships from my life and generally cared about myself a little bit more? I will never know. Therapists have told me not to stress about it because it's not helpful and will just make my M.E worse. Doesn't stop me from scratching the itch though!

Unfortunately, having M.E brings with it a lot of thinking time. When I am laying on my bed, unable to watch TV or read a book, all I am able to do is think, my thinking pattern literally goes around in circles!

I can't remember my teenage years and so can't think of what could have caused my childhood M.E. I was stressed about my options years that were looming and I have always been a worrier but there was no significant event that my parents can think of that could have been a trigger.

Unfortunately, M.E is a complicated fluctuating life-stealing condition that makes no sense. 

No sense at all.

Love 

Sally
(and Foggy OBVIOUSLY)
XXXX

ps. There are 11 days to go! The current total is £1606, if you feel this does not adequately reflect the hard work of Team Foggy over the past 11 months... please donate! Donate via mefoggydog.org or by clicking the donate button at the right hand side of this blog. Thank you, all money is going to the ME Association for ME research xx

Vulnerability

Hi,

Over the past 4 years, I have been struck by the sheer number of M.E/CFS sufferers who keep their health private. They are free to do so, that is their choice to make. However, as the founder of ME Foggy Dog, I waived that right to privacy in order to raise awareness. As you will know, I talk about everything and anything that comes under the umbrella of M.E/CFS. There aren't many things that I have thought are too intimate to discuss, you guys even know about my M.E affected failing love life and weight problem! Many of Foggy's Followers message me to tell me that I am brave and strong for being so open. I just figure that we need to share the bare nakedness of the illness to make sure that Joe Public 'gets it'. We can't pull any punches. There is no need to dramatise our situation - it's powerful in its vulnerability.

This openness makes me feel vulnerable and leaves me open to negativity, exactly the stuff that the people who choose to be private are scared of. I am well aware that my openness has caused me to miss out on job opportunities, business contracts, and many other things where having a disability could be an issue - not able to work enough hours etc.

In my mind this sense of vulnerability goes hand in hand with the stigma attached to M.E/CFS. Last year, when I started social enterprise training in Winchester, I had to give a 2-minute pitch to apply for funding (which I won but have since given back due to leaving the course). I was looking for something to add a bit of oomph to my pitch. I found it on Instagram. I discovered an M.E

story that was so powerful it touched me immensely. I spoke to the Instagram follower and asked their permission to use it in my pitch. This person hasn't even told their friends and family about their illness, they are so terrified of the stigma attached to ME/CFS. It broke my heart to hear this and was very grateful that I was given permission to tell their story on this occasion. I could see it struck the six people on the panel. They asked why someone would be so scared of people finding out and I explained the ignorance and misconceptions surrounding ME/CFS. The panel agreed that the training organisation I was hoping to set up was needed to knock down some of our barriers and deal with the stigma.

I have met people who have symptoms and have been diagnosed with Post-Viral Fatigue Syndrome (or similar) but won't consider the tag M.E because they are scared of it. It would make them feel too vulnerable and open to negativity. Yes, that's right, just the idea of having the label of M.E is too scary for some people to accept. They tell me they have friends with M.E but are desperate to not have the same condition because they see how cruel it can be.  The label itself isn't what makes us vulnerable, it's the stigma and negativity that goes with it.

Prior to setting up Foggy, I didn't really talk about my M.E/CFS in work (apart from with Occ Health or managers) and only mentioned it to close friends. I felt too vulnerable and open to criticism if I opened up to a wider circle. I would always be braced for nasty comments or opinions. That feeling of vulnerability isn't pleasant. Now, I know that this nastiness comes from a lack of awareness and wide range of misconceptions. Those people who chat online about awareness being 'pointless' need to see how the general public being 'aware' can only help to reduce our feelings of vulnerability, and help to combat the stigma surrounding M.E/CFS. We should not feel embarrassed or ashamed about having an invisible disability.

I have been told that there is strength in vulnerability and I am slowly coming around to the idea. We show strength in the face of adversity.

Love,

Sally 
(and Foggy OBVIOUSLY) 

xx

Raising Awareness of ME/CFS

Hello!

Sally is going to tell you all about how different people say different things to her in terms of progress. I'll let her explain.

Hi,

Those eager-eyed amongst you will know that I have been busy with lots of business meetings and networking with various academic people in the past couple of weeks. I am often surprised when people seem to know a little bit about M.E and are genuinely interested. What has struck me recently though is that many people seem to think that awareness has been raised to the point where the general public are now aware, and our illness has been recognised both as a disability and as a valid illness. They seem surprised that ME Foggy Dog and other advocacy work is still needed.

I have to remind myself that pre-Foggy, I'd had M.E/CFS for 7 years without knowing much about my own illness apart from that M.E included being very tired (sooo much more than tiredness though). I wouldn't be surprised if the general public still think M.E/CFS is mainly tiredness. Not the

list of over 30 symptoms that I now know it to be - I had the symptoms, I just didn't know they all came under the same umbrella of M.E/CFS. My point is - if I, as a sufferer, didn't understand my own illness, how on earth can the general public fully understand something that is so fluid and irregular? I stick to the basics with my awareness-raising because a basic level of understanding across the board is better than a lack of understanding of the intricacies of our complicated illness.

I have been too tired to have THE conversation. You know the one I mean. The conversation where I explain that M.E is still having to be debated in Parliament (Great news about the debate on 21st June. Treatment and research funding are still huge issues that charities and advocates are working hard to highlight and make progress. The conversation where I tell them that many in the healthcare profession still don't believe that M.E/CFS is a real illness and that many in the education sector are unable to support children adequately due to a lack of awareness and appropriate infrastructure. I know this because I have spoken at length with teacher friends of mine who say they care about their students but don't have the knowledge or system to support adequately. They have attendance targets to meet and long-term sickness absence affects their ability to reach those targets. They are used to illnesses where mind over matter works.

I was talking to an education academic recently and he said that teachers implemented individual care plans for any child that was suffering with any illness, M.E/CFS included. What I didn't have the energy to tell him was that ME/CFS is unique and what may work for a child with cancer, for example, may not work for an M.E/CFS affected child. There is no point extending deadlines for a couple of weeks as the child may well be unable to do schoolwork for months on end. Knowledge and understanding of the illness would be hugely beneficial to all concerned: Child, parent, teacher. I would also be concerned as to where they are directed to for information about ME/CFS. Do they go to a school-linked GP? Would this GP be in the GET camp? In which case, any information received by the school wouldn't be fit for purpose.  Best case scenario - A child and their parents would be in contact with a teacher who knows about ME/CFS and would have appropriate support from day one. I may still venture towards creating a training organisation to address this issue....that's one of the many big decisions I have to make post-July 4th.

I see so many threads on Twitter where people are discussing whether we have made progress in terms of raising awareness. Many say we haven't, but there are a few sufferers who are noticing a little bit more understanding in their 'real-lives' offline. Personally, I know I have educated many people in my own circle about M.E/CFS and I have been contacted by hundreds of 'friends I haven't met yet' who have relatives/friends/colleagues with the illness, thanking me for helping them to understand the illness. In terms of what ME Foggy Dog has achieved, progress has been made.

Slow and steady wins the race, right? 

Love,

Sally
(and Foggy OBVIOUSLY)
xxx