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Monday, 24 September 2018

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. 


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.  







Wednesday, 19 September 2018

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

Tuesday, 11 September 2018

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