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

Exercise

Hello!!

Foggy has just got back to Foggy HQ; he had such a lovely time with Jools and co in Osaka, Japan that he is a little sad to to be home. If you would like to see the photos of his trip please take a look at:
https://www.facebook.com/media/set/?set=a.1567105276883726.1073741868.100007528067190&type=1&l=88332b8314
(You can take a look even if you haven't got a Facebook account)

Foggy has asked me to write a blog about why I am a lazy slug and don't exercise, or at most venture out for a 30 minute dog walk a couple of times a week. So here goes....

This is a blog topic that I have been wary of writing. I do not want it to come across as moaning or overly negative. I appreciate that in every area of public life there are people who don't exercise for one reason or another. Choice, health or circumstances. This blog is purely about why I, as an M.E. sufferer, cannot exercise as much as my body/brain is craving to do.

When you get diagnosed with M.E. your personality and ambition doesn't vanish into thin air; this can lead to deep frustration. It has been a life ambition of mine to run the London Marathon but I know it is a dream that will never be realised. This isn't me being defeatist; the training alone would wipe me out and I do not want to take the risk that it will worsen my symptoms. That is my own personal choice. When I first started the Foggy campaign so many non sufferers asked why I didn't just do a physical challenge 'like everyone else'..... Clearly these people had no clue about the limitations enforced by M.E.

Since being diagnosed in 2007 I have had periods of time when my energy levels have balanced out and the M.E. hasn't had a massive impact on my life (cognitive issues persisted throughout). Call these periods remission if it is easier to understand. In these rare periods I became active again. I used to go to the gym 4 times a week; there is nothing better than the endorphin rush that you get post workout. I had to give up regular exercise because of surgery on my leg and by the time I was healed the M.E. had come back with a vengeance. Dragging myself into work each day was enough of an

If I swam now I would fall asleep on this float!

energy leech! The next period of remission happened a couple of years later and I chose to take up low impact swimming sessions as my leg muscles were still healing post surgery. My energy levels are always best first thing in the morning. 3 mornings a week, starting at 7am, I was in my local pool doing lane swimming for half an hour before hot footing it into work. Again, the endorphin rush felt amazing and I became hooked. Then, another setback, more surgery so the exercising stopped. That was 18 months ago and my energy levels are still not good enough to even contemplate physical exercise. My job is physical and so I do a fair amount of moving around and being active without planning to, but this of course means I have no energy left by the time I finish work.

I'll admit, I am jealous of anyone who exercises and keeps themselves fit and active. I admire those people who are able to do tough ultimate challenges and keep running/swimming/cycling for hours, if not days, at a time. I have a constant desire to sign up to a gym again and get back into shape

In my mind this is what I used to look like when I ran!

(my thighs would certainly thank me for it!) but I know, at the present time that would be stupid, I can't even take Patch for a 30 minute walk without having to rest when I get home. I force myself to go for these walks because I believe in getting regular fresh air and keeping as active as you are able to be. In the past 5 years I have had many months stuck indoors recovering from various operations and during those times I was desperate for the freedom to be active again.

When I have a particularly bad day and am laying on my bed not able to feel my arms and legs, I think back to those days of activity and get upset. I miss the endorphin rush. There was a sense of satisfaction knowing that I was taking care of my body and trying to keep myself as healthy as possible. It was almost like I was telling M.E. it couldn't rule my life. I see TV programmes about people with disabilities beating the odds, overcoming immense pain and doing physical challenges. Unfortunately, M.E. doesn't work like that. You can't just use mind over matter and push yourself to the limit. Some sufferers find their limit is putting one foot in front of the other. M.E. affects every system in the body starting with the brain....if your brain says "absolutely no way" to exercise then you are a bit stuck!!

I hate this time of year; everyone I know is trying to shift some weight ready for holidays, re-starting their running schedule now the sun is back out again or trying to lose those extra Christmas pounds and are off to the gym 3-5 times a week (like I used to). One day I'll be back in a gym, wiping the sweat off the handrail and doing 30 minutes on the cross trainer...I have no idea when that day will come but....I CAN'T WAIT!!!

Sally xx

Where has Foggy been already?

Hello!

Sally keeps telling people where I am going next but I want new Followers to know where I have already been! It's a long list...ready?....

Snowdonia, UK
Royal Albert hall, London, UK
London, Visa office, UK
Vindalanda, UK
Jersey, UK
Stonehenge, UK
Bude, Cornwall, UK

and then I went GLOBAL!!

Kusadasi, Turkey
Sandown, Isle of Wight, UK
Christchurch, New Zealand,
Portland, Santa Cruz, USA
Florida, USA
Walhachin, British Columbia
Bovington, UK
Reykjavik, Iceland
Belfast, Northern Ireland
Copenhagen, Denmark
Petra, Jordan
Sicily, Italy
Malaga, Spain
Emirates Stadium, London, UK
Kerala, India
Melbourne, Australia
Kapaa, Hawaii, USA
New York, USA
Osaka, Japan

Phew!!! I'm loving all of this globetrotting and hope all of my Followers are enjoying my adventures. I am doing this World Tour to raise funds and awareness for the ME Association because my best friend's favourite human Sally has  M.E. One day she wants a very clever person in a white coat to tell her why she has this horrible illness.

My current mileage stands at 133,600 and I am in Osaka, Japan with Jools having a whale of a time!

Foggy snogs xxxxx

Loneliness....a by-product of M.E

Hello,

So, I am hijacking Foggy's blog again while he is having a whale of a time in Hawaii.

In this blog post I want to address the issue of loneliness felt by M.E. sufferers. Before anyone gets their knickers in a twist, I am well aware that absolutely any human can experience feelings of loneliness, even with friends in a crowded room. However, I want to talk specifically about M.E. and how the illness can cause intense feelings of loneliness and isolation.

The nature of the illness makes loneliness exceptionally common and understandable. Sometimes it is as if you are trapped in your own body and are screaming to get out. Personally, I regularly feel lonely, usually because my body, for whatever reason, isn't allowing me to behave how I would like. Perhaps I can't go and see friends or, have managed to go out but haven't the energy to join in, but also because the people I am with don't understand my condition. Distrust and disbelief makes me go in on myself and withdraw from the situation; this just adds to loneliness.

Another aspect to this is that when sufferers are laying in bed with 'payback' and are unable to move, think, understand or speak easily who do you think is there keeping them company? I am assuming, mild sufferers like myself will be upstairs in bedrooms and have to phone downstairs to speak to someone, as we don't have the energy to pop downstairs where the rest of the household are. I often spend 2-3 hours a night alone in my room not talking to anyone due to the need to be horizontal and quiet. To be a severe sufferer with this level of isolation and loneliness, all day, every day, is incomprehensible to me. I am well aware that I am 'lucky' to only have mild symptoms. I send my love, support and best wishes to the many severe sufferers around the globe.

Luckily, I enjoy my own company. However, the loneliness creeps in when my brain is desperate to be active but my body says 'no way Jose!' and I am forced into isolation. This is why I became so close and attached to Patch. Not only was he empathetic to my symptoms but he was excellent company without having to be a burden to family at home. I have lost count of the times he has given me 'that look' and tried to lick away my tears.

If you are a non sufferer please try and put yourself in my, and other sufferers, shoes. We can't 'snap out of it' or change our situation. It is a very desperate place to be and that is why I am running this campaign.

Love

Sal xxx (and Foggy of course)