Foggy is a soft toy dog on an adventurous quest to raise funds and awareness for The ME Association. His best friend Patch’s favourite human has M.E.His blog aims to show the human perspective of M.E and to raise awareness of the invisible debilitating illness.
I had a new symptom start around 6 months ago and, because of the infamous being 'fobbed off' incident, it was only investigated this week. Here's what has been going on.
I started to get pain in my right breast that could have been caused by any number of factors. I assumed it would most likely be related to hormonal changes as I suspect I am now perimenopausal (not confirmed by blood tests but signs are there). I found a large painful lump that was tender all of the time but had started to be severely painful when I moved. At the moment, just the movement involved with breathing is painful.
I have been speaking to a couple of Foggy's medically trained Followers about it privately and their support has been amazing. When you are 'fobbed off' by a GP you kind of have to turn to friends for advice. I have now changed GP practices and the new GP is taking me seriously! I have been referred to hospital for tests for all of the things I tried to bring to the attention of my old GP a couple of months ago.
This week I went to the Breast Care team at Q.A Hospital in Portsmouth. I had the full works - manual investigation, mammogram, and ultrasound. The team were very friendly, approachable and completely put me at ease. What a contrast to how I am treated with M.E./C.F.S. stuff! I said as much to the consultant and she said it was shameful that medical professionals are arrogant enough to think they know everything about the human body. She empathised with our plight.
Anyway, the consultant concluded that I have a musculoskeletal thing going on. So, the problem is with bones and the surrounding tissue rather than the breast itself. She didn't give me a label to call it by (it may well have one, I just don't know it). She said my problem is exacerbated by having a 'small frame' (I LOVE this woman lol) and an 'ample bosom' (um...thanks). Moving the weight of said 'ample bosom' causes the pain. Suggested treatment was in the form of getting a more well-structured bra (granny bra here I come...booo. MEN, you have no idea how difficult it is to find a well-fitting bra!) and rubbing anti-inflammatory painkiller gel into my breast.
I have been told by many of Foggy's Followers that musculoskeletal chest pain is common with M.E./C.F.S. I said this to the consultant. She said that she didn't know if that was the case but that musculoskeletal pain is common amongst women in general. I'd be interested to know if M.E./C.F.S. patients are at a higher risk. I've done a bit of online research but couldn't find any research info. I also have Hypermobility Syndrome so have wonky cartilage, I wonder if that is part of the issue.
It's been a bit of a nightmare week with lots of appointments but at least my current health stuff is being dealt with and being investigated. I had a blood test yesterday. It's part of the investigations into my nerve pain issues. It never rains but it pours! Once I know what is going on with that, I'm sure I'll be writing a blog about it! Love, Sally xxx (and Foggy OBVIOUSLY!!)
25th October marks one year since Patch left Foggy HQ forever to chase squirrels and run through meadows for eternity.
To mark the date, I am starting an annual day of thanks to those who SEE us and offer love, support and practical help to get us through each day.
Patch saw me. He knew when I was having a bad M.E/C.F.S day, the love he showed me was ramped up when he could sense I had reached my limit. He was the inspiration behind ME Foggy Dog and it is appropriate that he is now the inspiration behind our day of thanks.
I like to do things in a lighthearted way so the hashtag for the day is -
Why on earth have I chosen that?
Because Patch's nose was my favourite part of him. So, I have included it....with a play on words!
Nose = know Me = me AND M.E.
So, 25th October is the day for you to post about those in your life who see your invisible disability and support you. This could be a family member, spouse, friend, doctor, even a pet!
Send Foggy your videos (If you are brave enough), post your comments with #YouNoseMe. Tell them what their love and support means to you. Photos would be lovely to see too.
Of course, Foggy and I would like you to tag us (@MEFoggyDog on Twitter/Instagram and @FoggyDog on FB) into your post so we can see #YouNoseMe in action!
Foggy is travelling to Christchurch, New Zealand and is surrounded by the bubbly loveliness that is first class (jiffy bag). To bide his time Foggy is going to tell you all about Sally's issues with digestive problems.
Sally has had problems with reactions to certain foods, bloating and discomfort (to name a few symptoms) her whole life and was usually fobbed off by doctors who just said she had IBS and to get on with it. Last year Sally requested a colonoscopy/endoscopy to rule out anything more sinister as more and more foods were causing a reaction.
The colonoscopy found an inflamed area in her colon. Dr's said they couldn't see a cause and said that a lot of people fall into this 'grey area';there is a reaction to something but doctors have no idea why/what. Again, she was sent away and told just to avoid foods that irritate her digestive system. Easier said than done!!
The Horizon programme this week in the UK said bacteria in the gut could be linked to allergies; this made sense to Sally as she believes many of her issues come from her gut/digestive system.
Hopefully any future research that is funded by this campaign, and others, will help to find out whether there is a link between the gut/digestive system and M.E.
Foggy is going to sleep now; this is a LONG flight!
Payback is something that M.E/C.F.S. patients mention all the time, as a community we know what payback is and we don't need to explain to each other how we are feeling. However, Foggy is all about raising awareness and as it's been a while since I blogged about payback, it's time for another go at explaining what it is!
Payback is what the M.E/C.F.S community call the medical term Post-Exertion Malaise (P.E.M.). It is a key characteristic of our condition. The M.E. Association defines P.E.M. as:
The key diagnostic feature of ME/CFS is the way in which symptoms worsen after activity is increased beyond what the patient can tolerate. Such activity, physical or mental, has a characteristically delayed impact, which may be felt later the same day, the next day or even later. This is followed by a period of relative recovery which may last for days or even weeks. The amount of activity that provokes increased symptoms is related to severity and in some people, can be very modest.
So, that's what it is in medical terms. But, what does it feel like from a human perspective? A bit like the Dementors in Harry Potter books, payback sucks the life out of you.
Personally, I feel like a limp wet rag that has been wrung out and left to dry. I talk like a drunk person because the muscles in my mouth and jaw simply don't work properly and I slur my speech. I ache all over, moving limbs is often an impossible task. On particularly bad payback days, I lay on my bed unable to move my arms and legs due to a kind of paralysis. My brain simply doesn't know where my arms and legs are so the chances of being able to move them aren't THAT high. I've noticed that my mouth droops, possibly because the muscles around my mouth have gone floppy. Another signal that I am going through a payback day is the colour of my skin. I go very white. As if all of my blood has left my body. My freckles stand out like a dot-to-dot. My blood pressure is usually on the floor during payback, usually just on the 'safe' low limit. So far, touch wood, M.E/C.F.S. and payback haven't caused me to faint. That's not the case for many other patients though.
On standard days we feel like we are wading through treacle, it's the same on payback days but we are wading through treacle with 30lb weights on our ankles. I am constantly confused on payback days. My brain is malfunctioning and unlike a computer, I can't just turn it off and on again! I have lost count of the number of times I have stood in the middle of the kitchen not being able to work out how to turn the oven on or establish what the noise was (overflowing tap). Cognitively, I'm a mess on payback days. I don't even attempt to concentrate on tv, magazines, phone calls as it would be a fruitless task. I watch movies I've seen many times before so I don't have to concentrate! It also means I can sleep through most of the film without feeling frustrated. Payback days are usually spent sleeping in bed, it's the only way to ride it out. Fighting it is impossible and attempting to fight back would be pointless.
I tend to say that my own payback hits both the same day, if I have had an energy-sapping morning, and also 48 hours later. My body pays twice-over for using limited energy irresponsibly. My body tells me off by making my M.E worsen significantly. More recently, my payback hasn't hit when anticipated and it has hit 4-5 days after exertion. This is an unexpected pain in the bum as I used to be able to plan my exertion and rest days to manage my 'good and bad days'. This is becoming trickier and trickier to do and my payback is hitting when I should have already gone through payback and recovered.
I've said many times before that M.E/C.F.S. is a unique and individual illness. M.E/C.F.S patients all have their own range of symptoms. Payback causes whatever M.E/C.F.S symptoms you have to worsen significantly. For some that could be pain, nausea or migraines and for others it could be skin rashes, headaches, I.B.S. etc. You get my point.
However, across the board, the 'Dementor' feeling of having the life sucked out applies to the whole M.E/C.F.S community. That is a significant and unwelcome characteristic of payback. It is an all-consuming, miserable invisible cloak of rubbishness. Love Sally (and Foggy OBVIOUSLY) xxx
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.
**** 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.
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.
On day one of ME Foggy Dog way back in 2014, the original plan was to raise research funding and awareness of M.E. The plan was to enlighten people in the wider non-M.E community about the illness itself and the politics surrounding it. I strongly believe that we need these people to understand our illness, even if only at a basic level, so we can progress and battle the stigma. However, I am wondering if I am achieving that and pondering whether ME Foggy Dog is fit for purpose.
We aren't fit for purpose as a fundraiser. We have made in 4 years what we had got very close to reaching in year one. Some people raise £10k simply by doing one fundraiser, perhaps an event or marathon. We have raised just over £10k by doing 4 years of blooming hard work every single day..... yep...every single day. Whether that's creating content on social media, organising Foggy's travel plans (very often a logistical challenge and stressful) , promoting M.E in the media, talking to University researchers about the possibility of them putting their efforts into ME research, networking with University lecturers, and more recently networking with business people about future plans. Team Foggy will not be fundraising again, I find it harmful to my self-esteem and I don't like repeatedly banging my head against a brick wall. I will be dipping my toe into crowdfunding and profits from sales of future products/ticket sales will go to research funding instead.
Let me be clear, I have never expected funds to come from the M.E community. I am not dumb, I know you guys often do not have the cash to spare. However, it has become clear to me that that is exactly where the cash is coming from. Either sufferers themselves or their wider family/friends. This upsets me. This is why I try to get non-M.E peeps to engage with our cause. They have the money to spare but simply don't know what they are donating for....very often they don't think of M.E as a worthwhile cause because they don't know enough about it. That's where awareness raising comes in.
I LOVE the M.E community, specifically those of you who contact me direct, share everything I do and have fully engaged with Foggy. I know you guys think I am raising awareness and I am very grateful for your love, support, and enthusiasm. However, it is noticeable to me that my posts aren't shared by non-M.E peeps. I include family, friends and support networks in the M.E peeps category. I'm talking about people who have no personal contact with M.E, who didn't know anything about M.E before following Foggy. If I'm wrong and you are a non-M.E peep, please do let me know whether my awareness raising is working! In 4 years, I have never received an email/message from someone who has discovered M.E due to Foggy's work online.
People I meet in the real world are now enlightened. I know for a fact that I have raised awareness among business people I meet who had no prior knowledge of the illness or our fight for recognition. Attendees of my public speaking events are also aware and have a greater understanding of how to support members of the M.E community within their working environment.
There is absolutely no point in raising awareness within the ME community. We are all 100% aware of how rubbish our illness is. We might learn about other people's variation of the illness or about a new symptom that we hadn't yet recognised as part of our own M.E. But you don't need me to tell you about your own illness. ME Foggy Dog is sometimes just an information sharing platform, completely not what it was set up to be. There are other organisations that do that very effectively so ME Foggy Dog isn't needed in that format.
I am currently driving myself nuts trying to work out what to do with ME Foggy Dog in the years to come, or whether he should continue at all. Should I just close everything down and get some of my life back? My life is not only restricted by my own M.E but also by the pressure of doing at least 2 hours of 'Foggy work' every day. This work often uses up the tiny bit of spare energy I had, which would be ok if I felt I was achieving anything.
I have recently been to networking events and workshops with business people to try and get my ideas a bit more structure. I have had the pleasure of meeting some very enthusiastic business people who want to get involved. Some of the ideas that have been enthusiastically discussed have included concerts, books, range of teddies. and HUGE awareness events. All of which would reach non-M.E peeps as well as the M.E community. Whatever happens next, Foggy is going to get BIGGER. His adventures will continue but the other stuff will be done purposefully and determinedly to get the wider general public engaged. If there are any celebs out there (you don't necessarily have to have M.E!) who want to get involved and help us to grow please get in touch. We need a bit of star dust to get noticed.
There are now 10 days to go, I can't wait to put my feet up for a bit! (I'm still doing local events though so maybe not as much of a rest as I need!) Love, Sally (and Foggy OBVIOUSLY) XXX
Devoted fans, I am currently in Sri Lanka. Joan, my sitter, hasn't been able to send Sally any photos yet but Sally will be able to show you what I have been up to at the end of this month. 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 break up 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.
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.
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