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Sunday, 26 April 2015

Everyone...meet 'Fred the Head'

Hello!

Foggy is off galavanting in Vietnam with Thang and so I am hijacking his blog again.

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 worstened 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

Wednesday, 22 April 2015

In the 'void', pre-diagnosis

Hello!!

Foggy is on his way to Vietnam after spending 2 and a bit weeks travelling along the Gold Coast of Australia. It has always upset Foggy that it took doctors 3 years to diagnose Sally with having M.E. He doesn't understand that doctors have to rule out EVERYTHING else before concluding that the symptoms all add up to M.E. Unfortunately, there is no test for M.E.

Bethan, is a lovely young woman who is experiencing life affecting symptoms that Sally has come to associate with M.E. Sally asked Bethan to write a blog post from the perspective of someone who is in the void of having a dreadful illness, but not knowing why they are struggling, in pain and not knowing what is wrong. She has had blood tests to rule out certain illnesses and doctors are still none the wiser. In the meantime, she still struggles into work and is finishing her undergraduate degree this week (well done!!). Sally has warned Bethan about the pitfalls of self-diagnosing but, other sufferers will probably agree, her symptoms are regrettably familiar.

This is Bethan's blog

What does ME mean for me?

I didn’t know what ME was until I met Sally. And luckily for me, it completely made sense; I finally didn’t feel like I was going crazy any more! I’m a 3rd year university student, I will be graduating this year, and work part time at the library coffee shop, where I met Sally. Ever since meeting, we clicked, and I knew we would become friends instantly.
It was only when I asked about Foggy dog that M.E. became something of importance to me. After finding out what Foggy was doing on his world tour, I was introduced to M.E.,and the fact that it can be life changing.
For 8 years I have suffered from Depression and Generalized Anxiety Disorder. I had done what most sufferers would and associated my fatigue with the disorders and the medication I was on. When it became so bad that I literally couldn’t get out of bed in the morning, I knew something wasn’t right.
After speaking to Sally in great detail, I felt that a trip to the doctors was what I needed;  I booked myself in for later that day.
Bethan
The doctors (as professional as they were) did not help in the slightest; they told me that my constant fatigue was to do with my mental disorders. I left the doctors in tears, as I felt completely and utterly bogged down…. If the professionals we look to for support had ‘fobbed me off’, then who could I go to now?
The answer was simple; my family, my friends, my educational network.
Just because a healthcare professional didn’t acknowledge my illness, it didn’t mean it wasn’t there. A chat with my parents put my mind at ease instantly, they were so supportive and loving that I knew I would be ok, no matter the outcome. The reaction of my mum who struggled with why, when at home, I would spend hours upon hours in bed.
“I thought you were just being a typical lazy young person… I’m so sorry I didn’t realise!!!”
It was so rewarding to finally have people understand.. I wasn’t just being lazy!! I was actually unwell and, although not diagnosed, I did have an invisible illness. My housemates were next, and luckily for me, they were just as understanding. Next was my educational network, which I thought may be a bit more tricky. Luckily, I was understood; the relief I felt completely made my day.
The pain I was putting myself through, mentally and physically, by carrying on every single day even thought I felt terrible, was far worse than whatever illness I was suffering from. I was in denial that there was anything wrong, and that I was just ‘tired’ and ‘lagging behind slightly’. However, not being able to get up in the morning or needing to sleep for 4 hours every single afternoon was not normal. The constant aches and pains and insanely bad headaches were NOT down to my depression or anxiety and were NOT just a figment of my imagination! It's real even if you can't see it.

I may not have my diagnosis yet but I wear the ME Association wristband. Whether I have M.E. or not; I do have an invisible illness and offer all M.E. sufferers my support and send love and best wishes. I proudly wear my wristband (‘It’s real, It’s physical, Its ME) to let people know that it’s OK to not be OK.

Bethan xx






Monday, 13 April 2015

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

Saturday, 11 April 2015

Easter in Italy

Hello!

Foggy is currently in Australia (Brisbane and Sydney) with Sally's mum and aunty Di. He had a wonderful time in Italy with Sally and Alessia over Easter and wants Sally to tell you all about it. So here goes...

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 it's temperature. My concentration and cognitive (I can't think of the word - ironic!)..... 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 parents 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 micro managed 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 lets 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 who's 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. Throughout our trip this was an issue for me. 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)