Guest Blog - Rachel's Experience of M.E.

Hello!

Foggy asked for guest bloggers to write blog posts for him; this is a guest blog post from Rachel, a mild M.E. sufferer.

Hi,

Glandular fever swept through our sixth form college like wildfire; which isn’t that abnormal amongst a group of 17-year-olds I guess. Except I never seemed to get better. I was halfway through the second year of my A Levels combined with Dance Foundation when suddenly I was exhausted all the time, with a permanent sore throat, swollen glands that never seemed to go down, migraines and aches and pains all over. Months and months of medical tests followed, all of which proved inconclusive. In May 1992, I received a diagnosis nobody wants to get, especially someone just weeks away from their exams. I had M.E.

In the early 90s M.E. was a relative unknown. It was known, here in the UK, as Yuppie flu because the only people who had been reported as getting it were burned out city workers.  What did I have in common with them?  There were no support groups, very little research and nothing anybody could tell me.

I somehow managed to make it through my final exams but all I can really remember about that period is being bone-achingly tired and having to take so many anti-inflammatories that I’ve had stomach issues ever since.

Rachel

Instead of going to university that Autumn I was fortunate enough to get the opportunity to go and stay with my aunt in Tasmania, Australia. The sunshine and slower paced lifestyle did this body good and within a few months I was starting to feel better, needed fewer painkillers and had put on some of the weight I’d lost. Naively I believed I’d beaten this thing. I didn’t know then what I know now; that M.E comes and goes in waves. That, for me at least, it is triggered by stress and overwork.

I returned to England to go to university. Half way through my degree those familiar symptoms came back. Just in time for my final exams, the M.E. returned with a vengeance. You see what I mean about it being triggered by stress? After a year of recuperating I moved to London to start my first “proper” job. You probably won’t be surprised to learn I was back living with my parents and all my symptoms flared up again within 18 months. That’s when I realised I had to stop this “boom or bust” road to recovery, and it’s when I started doing a bit of research. Over the next few years I tried a lot of different things from Acupuncture to Hypnotherapy, from C.B.T. to Reiki and I got a few new diagnoses, Fibromyalgia, Endometriosis, I.B.S. and Congenital Scoliosis. I tried various remedies from the kind you get on prescription to homeopathic and herbal. But the thing that seemed to work for me was Yoga.

You see, I always loved to move my body. From early ballet classes to my Dance Foundation I was never happy sitting still. The problem was since my M.E. diagnosis I found a lot of exercise just completely wore me out. But Yoga was different. I’m not talking about the sort of Yoga that is all over social media these days, Hot Yoga, Power Yoga, Cardio Yoga. No, this was gentle, it involved a lot of lying on the floor, gentle stretching and deep full breaths.

Some days all I could manage was to lie on the floor, other days I could do a bit more. Over time, with patience, practice, and a lot of guided relaxations, I was able to practice gentle sequences. My energy levels improved, I was slowly able to do some other gentle exercise too (walking, light weight training). After a couple of years I was back at work full time. And with regular Yoga practice I could manage my energy better. I didn’t have those “boom and busts” anymore. Don’t get me wrong though, I still had bad days. I still do.

These days I own a little Yoga studio in Cambridge. I teach all kinds of people but I run some classes that are dedicated to people with M.E., Fibromyalgia and similar chronic conditions. Not only is this a chance for them to do a little movement and a lot of relaxation that is suitable for them, but it also gives them a chance to meet other people with M.E., something I never got to do. We keep it very positive in class and try not to moan too much about our symptoms. Everyone keeps coming back so it seems to be helping! Of course Yoga isn’t necessarily suitable for everyone with M.E. and it might not help you in the same way it helped me. My point in sharing all of this with you is to never, ever,  give up hope. You never know what is round the corner. I still have bad days, as I said, but my once moderate M.E. is now mild, even on a bad day. I’ve come a long way baby.

Rachel is a Yoga and Pilates teacher, massage therapist and studio owner in Cambridge UK. Check out her website for more info about M.E. and Fibromyalgia http://massage-movement.co.uk or follow along on Instagram and Twitter @rachel_fusion

*Foggy* Thanks Rachel - Doggy snogs xxx

Self-doubt

Hello,

Foggy is resting his paws in Deal, Kent; waiting to jet off to the Philippines on Sunday morning. He has given me permission to write another blog post.

Hi,

I have made some truly wonderful friends through this campaign and I hope these lovely people are now lifelong amigos. They constantly praise my efforts and spur me on when, on rare occasions, my enthusiasm and positivity wanes. I have never met these people and yet we are like kindred spirits; I don't feel I could have coped without their support and inspirational emails.

Here are a few extracts showing the love these men and women show me on a regular basis....I am very lucky xx

'I never know if it's weird to tell someone I'm proud of them but I really am. You've done so much to raise awareness and funds, I think you're amazing. How anyone has the courage to stand up and present for half an hour with brain fog is beyond me!'

'I KNOW you don't appreciate how good the campaign. That's why I keep telling you how great it is!!'

'You know I heart Fogs. And love everything you do. Don't underestimate the impact you're having on people with ME -to know you're championing the cause even though you're ill yourself means the world x'

I am writing this blog because I am constantly filled with self-doubt that this campaign isn't as good as many people keep telling me. I want to explain why. When I started this campaign I had hoped that

people that I am in daily contact with would read all about this dreadful illness, engage with the campaign and realise why I am like I am. However, many of the people closest to me: friends and work colleagues, are still no closer to understanding the illness than they were on day one of this campaign. I have discovered that you can't force people to engage with an invisible illness. Engagement with the campaign in my workplace is probably around 5% of staff...such is life. 

Most of Foggy's donations have come from sufferers or family/friends of sufferers. It is unacceptable that sufferers have to do their own fundraising. As I said in my International ME Awareness Day talk, more funding should come from the world's governments, as is the case with other illnesses.

It is not possible to determine whether Foggy's non-suffering Followers have engaged with the M.E. awareness aspect of the campaign or whether they are just liking the character of Foggy. If any non sufferers would like to get in touch to tell me they have been made aware that would be great. I only ever receive feedback from sufferers. As lovely as that is, there is no point in raising awareness amongst people who already know everything they need to know! Foggy and I love all of our Followers regardless of their state of health; we just wish we could tell whether our mission of raising awareness, amongst non sufferers, is being achieved.

Then there is the media. Despite my best efforts I simply cannot get any national newspapers, magazines or TV programmes to cover Foggy and his

World Tour. This gets me wondering whether my campaign simply isn't good enough for their attention. All of the positive feedback I receive from Followers completely clashes with the white noise coming from the media. I have lost count of the number of emails, letters, tweets, facebook messages I have sent trying to highlight the campaign but to no avail. I find this incredibly frustrating, especially when I see some of the rubbish that actually makes it into these publications and programmes. Sometimes it feels like I am banging my head against a brick wall. It has also been impossible to get the acknowledgement and support of a celebrity...any celebrity will do....just to help spread awareness quickly and further afield. Again, no replies have been received from A-Z list celebs. Believe me, I am trying!

Despite all of my self-doubt I will be forever grateful for the support and love I have received from thousands of people around the globe. I just hope I am doing a good job.

Sally xxx

International ME/CFS Awareness Day - May 12th 2015

Hello,

It was International ME/CFS Awareness Day on the 12th May and to mark the occasion and to 'do my bit', I gave an informal, awareness raising talk in a lecture theatre at the University of Portsmouth (Thank you for allowing me use of the facilities for a private venture - much appreciated). In the audience was a good mixture of ME sufferers, family and friends of sufferers and people who have no link to M.E. who just wanted to learn and appreciate how nasty this illness can be.

Foggy made an appearance on the night, between trips to Tenerife and the Philippines. He even had his own mini movie at the end!

I wanted to keep the talk as light and engaging as possible. Bamboozling the audience with medical jargon and politics wouldn't help to raise awareness - exactly the same method as I apply to the Foggy campaign.

Here is the film of the talk. Apologies for the intermittent sound problems....it was a learning curve.....don't do the moveable cardigan/long hair combo as it scratches the mic!! You can still hear what I am saying though. I am very proud of myself (pat on the back for me) for doing this. I haven't ever spoken in public to more than 15 people and this was a big personal ambition/achievement. Had major brain fog on the 12th May and so to be able to string a sentence together, let alone do a half an hour talk, was a huge relief!! 

https://youtu.be/CLRiImmWDxQ

Please watch the whole thing; I put a lot of time and energy into planning, designing slides and finding resources to put across my message about how dreadful this illness is.

My immense gratitude goes to three members of Team Foggy. To Andra for her I.T. prowess and help. Her skills and knowledge were invaluable, she made the slides more engaging with animation than they would have been if I was left to my own devices! (The animations aren't showing up on the video which is a shame but....they were there on the night! Promise!) She also helped on the night to make sure everything ran smoothly. Ant (Anthony) filmed the talk for me and did the post-talk video editing; and thanks go to Emma for taking great photo memories of the evening. These lovely people gave their time and skills for free; they just wanted to help me raise awareness. Thanks guys.

Love,

Sally xxx

Everyone...meet 'Fred the Head'

Hello!

I experienced a sudden onset of symptoms earlier and it occurred to me that 'payback' always starts with the same sensation. I get a tingling, heavy sensation at the back of my head, where the Occipital bone is located on the skull. From this point my head gets heavier and heavier, to the point that I feel an overwhelming need to get horizontal.

Pre-Foggy I used to own a therapy business; I offered Indian Head Massage (and Reflexology) treatments to clients. This is why I know a something about head anatomy. I remember, as part of a training session, another trainee therapist gave me a head massage. Massage and manipulation of the Occipital bone is part of a treatment, it's 'where most stress tension' is held on the head. The sensation was overwhelming and I felt sick and dizzy for the rest of the day. That area is obviously particularly sensitive for me. I am now wondering if this is, even in a tiny way, linked to my own M.E.

To show you where I mean I have taken a couple of pictures of 'Fred the Head'; he used to come with me to holistic fayres and sit on my table (Phrenology is nothing to do with Indian Head Massage but I love the look of him). Now he takes pride of place on the bookcase...memories of past achievement I guess. I have no idea how I managed to work full time and have my own business at weekends and evenings; there is no way I could do that now. My symptoms have definitely worsened since Foggy. I am managing through pacing and healthy eating though.

Where the red dot is on the second picture is where the 'payback' symptoms start. It is at the top of the spinal column/neck. From here the physical sensation gradually spread to the top of my head, my face gets very hot and I get swollen glands in my neck. Another sufferer recently described the feeling as like a bowling ball on the top of a spindly stick. It is at this point that speech difficulties and brain fog worsen. The sensation then spreads downwards and my spine starts to feel like spaghetti and I can't hold myself upright. I am VERY lucky....this usually reaches its peak when I am safe and sound at home; near a bed after a long day.

Anyone interested in Phrenology might like to know.....that part of the skull is said to relate to a love of animals....appropriate!!

Sally xx

M.E. is a global illness - Emerge Australia

Hello!

Foggy is loving his time in Brisbane, Australia with Sally's mum Carol. Foggy wants people to realise that it doesn't matter where you live in the world you could either have, or know someone who has M.E. So, Sally was given the task of contacting an M.E. organisation in Australia to see if they wanted to meet Foggy. This is what happened...

Hi,

As I mention regularly on social media channels, this is a global campaign. Any funds raised will benefit M.E. sufferers worldwide in the form of research. I chose to fundraise for the ME Association in the UK as it is based in my home country but also because I like the work they do. Throughout the campaign I have contacted other ME organisations around the world, based in whichever country Foggy was visiting at that particular time. Unfortunately, none of these organisations chose to participate.

However, I am now in touch with Emerge Australia; I emailed the CEO, Amanda Kelly, to see if she would like to meet Foggy and help to spread the Foggy love and M.E. awareness.

Unfortunately, Sydney is as far south as Foggy and co will be travelling, and so Foggy will not be able to visit Emerge Australia in their Melbourne office. We are happy to promote Emerge Australia in this blog post; Emerge Australia has a strong focus on research and has the full support of Team Foggy. Foggy and I strongly believe that the fight against M.E. will only be successful if we all work together. M.E. organisations worldwide need to work together for the benefit of sufferers; sharing research findings, existing knowledge and ideas on how best to support sufferers.

Here is a link to the Emerge Australia website:
http://emerge.org.au/

They are currently undertaking a large research project into the health and welfare of people with ME/CFS, take a look at the link below.

http://emerge.org.au/mecfs-health-and-welfare-survey/

Extract from the Strategic Plan 2014-2017 on the website:

'The landscape in which we undertake our work is slowly changing.  Research into ME/CFS is gradually increasing, the impact of chronic illness in general is being acknowledged, and international acceptance of ME/CFS as a real condition is greatly increased.  It is up to Australia to catch up to the rest of the world and to ensure that those affected in our own country are not left behind when we see how this condition is understood, managed and treated.'

No country should be 'left behind', Foggy and I hope that this situation will be changed by promoting this excellent organisation and the great work they do. If you are a sufferer, and live in Australia, Emerge Australia can support you and give guidance where needed.

I know that Foggy is disappointed that he will not be able to meet Amanda in person, but sends her, and the rest of her team, big Foggy doggy snogs xxx

Sally

Easter in Italy

Hi,

Since returning to the UK from Italy, I have had worse than normal ME symptoms. This is what ME sufferers call 'payback', It's kind of 'you had a fantastic time and now you are going to pay for it'. My own personal payback usually kicks in 2 days after the exertion and lasts a couple of days. However, this time, it has lasted 5 days so far. Most of today has been spent crashed out on the sofa covered with a fluffy throw to keep warm as my body struggles to regulate its temperature. My concentration and cognitive functioning are struggling and my head feels like a heavy bowling ball balancing on top of a toothpick. I have been very breathy and struggling with speaking. Staying vertical has been extremely difficult for the past 5 days. I feel I have to tell you all about Italy before it becomes a distant memory. So, I am writing it now but please ignore any punctuation/language mistakes....unavoidable I'm afraid!!

My friend Alessia and I jetted off to Marco Polo airport in Venice on the Thursday before Good Friday. We had decided that staying at Alessia's parent's house in Udine (ooo-din-ay) (north of Venice), and using it as a base would be the best option. With hindsight, although the least expensive option, it meant there was a lot more travelling involved. At least Alessia was able to drive and so there was no waiting around and relying on public transport (noisy train stations give me brain fatigue). We micromanaged the trip to make it as ME suitable as possible. As I said prior to the trip, the main benefit of staying with Alessia's family was that if I had a very bad day there wouldn't be extra pressure to get up and out, I could simply stay horizontal if necessary. 

Our itinerary was Venice, Udine, Verona, and Mantua. the furthest point away from Udine was a 2 and a half hour drive. This was a bit of a killer on the return trip, not only for me but also for Alessia who now had a nasty cold and was feeling feverish (the things we do for Foggy eh?!). Italy was stunning, as always. I've been to Venice and Verona before but Udine and Mantua were new discoveries. Instead of giving a blow by blow account of what we got up to I will concentrate on how an ME sufferer would cope, or not, with Italy as a tourist.

There are a couple of downsides that I think I should make Followers aware of. If you have seen Foggy's (many) photos and are now dreaming of going yourself please bear these points in mind:

- 50 % of toilets in public places are literally a hole in the floor. Whether these gross you out or not, let's discuss practicalities. When I have 'dead legs' I doubt very much that I would be able to squat for the length of time necessary to go to the loo (especially when just being vertical is a feat in itself!) So, any sufferer whose condition is worse than mine would struggle. Even posh looking coffee shops can have this type of toilet so don't think that you can avoid the dreaded squatting situation. I have no idea how a wheelchair user would cope. I rarely saw a disabled access sign while we were out and about.

- Public transport. Getting out and about is mainly done by walking. This was an issue for me throughout our trip. Every day, I would reach the point when I couldn't walk any further. We were walking about 6 miles a day. I didn't see many buses and Alessia assured me that taxis are extortionate. There also wasn't much public seating outside on pavements, so unless you go into the many coffee shops you will struggle to find somewhere to sit and recharge.

- Dietary issues. This was a culinary killer! Surrounded by pastries, coffee, cake, and pasta every day and unable to have any of it. Over 5 days, we only found ONE coffee shop that used soya milk. Even that was vanilla flavoured and wasn't specifically for coffee use. It was quite upsetting, especially when I had reached my limit and all I wanted was a false energy boost with a coffee/cake and had to have a bottle of water instead...with salad. We went out for dinner during our hotel stay in Verona and, miracle of miracles, we managed to find a vegan/coeliac specific restaurant!! This was the only time I had managed to eat 'normal' food during our holiday trekking. Alessia's mum had made sure she had food/drink to offer me so it was only during our daytime sightseeing that I had an issue. Anyone who didn't have a 'home' to go to and had to rely on hotel food would struggle! 

I've attached some of my favourite footage/photos from our trip. It was a wonderful trip; we had fabulous sunshine (even if it was blooming cold!). It was extremely busy too because of it being the Easter holiday. Juliet's courtyard in Verona was filled to the brim with Italians. It took a while but I was determined that Foggy would get his photo taken with Juliet! Mission accomplished. The trip highlights were the gondola ride...squeeee and having our photo taken in the cockpit on our return journey. Thanks Giles and Andy - British Airways pilots.

https://youtu.be/8kIk3CqCilo  Gondola ride!!
https://youtu.be/9cj_7RsVJ2M Gondola ride...under the Bridge of Sighs!!

Got there!!

Verona Ampitheatre

EEEEK!!!!

Captain Foggy!!!

Click this link if you want to see all of the photos (205!), it is a Facebook album but you do not have to have a Facebook account to see them.
https://www.facebook.com/media/set/?set=a.1573970249530562.1073741869.100007528067190&type=1&l=a125b60575

I hadn't planned on taking a holiday abroad this year because of how tired/ill travelling makes me feel. However, I felt it necessary to personally add to Foggy's overseas mileage and so I planned this trip. Please do not underestimate how much it damaged my health. It may look easy/effortless but please remember it is an 'invisible illness' and you can't see how dreadful I was feeling behind my screwed on smile.

Please keep following and supporting Foggy, I am very grateful for all support and funds received.

Thank you. 

Ciao,

Sally (and Foggy)

Italia!!

Hello,

Foggy is enjoying being back at Foggy HQ with Sally, just resting his paws before seeing the delights of Italia! Sally has been worrying a little bit; this is why....

Hi!

Not long to go now!! I will be heading to Marco Polo airport in Venice with my friend Alessia and Foggy in 2 days time. I have been to Venice and Verona before but it will be lovely to see these two beautifully stunning cities again.

Centurion sandwich!! Verona Ampitheatre

Team Foggy will also be heading to Mantua, somewhere new to explore. I am worried because I am already feeling wiped out thanks having to Laryngitis for the past 2 weeks, I am still recovering from that. Which, as any sufferer knows, will probably take a few more weeks before I feel 'normal' again. This means that I will probably be feeling like death warmed up already after the hour and a half car journey to Gatwick on Thursday! Change of routine always upsets my M.E. symptoms however lovely that change of routine is.

Once I get to the airport my M.E. senses have to cope with bright lights, noise, busy-ness (is that a word?) and lots of standing up. I am having to plan, as much as possible, how I am going to reserve energy while all this is going on. Obviously sitting and resting is going to be key while we wait for our flight. No airport shopping for me *sob*;I may even put in earplugs to dumb down the surrounding noise. *Sorry Alessia, I don't think I'm going to be good company in the airport!!* I'm ok with flying. I'll just close my eyes and deep breathe to lower my heart rate ready for more travelling when we arrive in Venice. Essentially, this is PACING therapy....quiet time without sensory overload.

Team Foggy is staying with Alessia's parents. This wasn't organised to help with my symptoms but with hindsight I think it will help greatly. I wont feel pushed to keep going constantly and can take myself off to my room or a quiet space to recharge while Alessia catches up with family. Being in a homely environment is also less stressful than a sterile hotel room.

It also means that Alessia's dad is picking us up from the airport - THANK YOU ALESSIA'S DAD!! (less stress) and Alessia has offered to drive us around Italy during our stay (again, less stress). So I think this element of the trip is manageable and wont overly attack my energy levels. I can sleep/close my eyes in the car and just let Alessia concentrate on the driving. Much better than noisy trains, bright lights and busy-ness (OK, the non word for the second time!)

Obviously I can't micro-manage the rest of the trip as I have no idea what is coming up! But, I KNOW I will be tired. That is a given. So, it is an excuse to sit, people watch and take in the wonderful culture. Italy is so beautiful, it is definitely one of my favourite destinations and plan to come back many times over my lifetime - health permitting.

The reason I am worrying? I do not want my health to YET AGAIN have a damaging impact on the

Alessia - valued member of Team Foggy!!

holiday of others. Alessia is lovely and would never, ever say that my health annoys her because we can't be as active as she would like to be (she is ALWAYS on the go!!). From past experience I know that come day 2 or 3 of our trip I will be exhausted. A few days of activity will catch up on me

regardless of how much rest I have had; Alessia has told me that if I feel the need to stay and rest in her parents house on that day then so be it. It's me that doesn't like that idea!!! Why be in Italy if you are so blooming blah that you can't get out and about and see the sights? It is my own issues and thoughts that get me upset. I don't want to let anyone down by being ill. It is frustrating, upsetting and makes me a little bit down if I am honest.

In addition to the energy side of symptoms, I also have to consider my dietary issues. I will be in the land of wonderful, fabulous pizza, pasta and wine. How much of this will I be able to enjoy?.....ZERO. There is no choice in the matter. If I do indulge in anything glutinous the only sights I will be seeing are the inside of many toilet cubicles as we travel around northern Italy!

*sob*

 Not worth it. When I visited Lake Garda a couple of years ago gluten free food wasn't readily available and the only dessert they could offer me in the hotel was a plate of strawberries. So, I don't have high hopes!!!  Such a shame but there is nothing I can do about it. I'm not quite sure why I have a reaction to wine but it's the same as gluten so again, I have to steer clear. Vodka is definitely the way forward! Alessia's mum has already looked into getting gluten free food from her local supermarket (THANK YOU xx) which is a relief; it will mainly be a problem when we are out and about and staying in a hotel for one night.

I hope you all enjoy the many photos and videos I will be taking; I hope they are worth my 'unwell-ness' (yes I know!!! Again not a word).

Ciao

Sally xx