Neighbours.....Foggy met some of the cast 'down under'!

Hello!!

Foggy has had a wonderful time in Victoria, Australia visiting the Neighbours TV set and meeting some of the cast. Sally contacted Fremantle Media at the start of the campaign, to see if they would like to Foggy sit and help highlight the campaign. Dates and schedules were organised and it has all worked out fabulously! Foggy added 10,550 miles to his mile-o-meter, met some lovely people and increased awareness of M.E. across social media. He will always have fond memories of his time 'down under'.

Sally would like to thank Jenny Van Der Werf, Kelly Davis and the cast of Neighbours for helping to promote Foggy's campaign amongst their fans. The enthusiasm and support received has exceeded expectations. Amazing xx

Here are the fab photos!

Foggy is always a hit with lovely ladies!

Anyone who has ever watched Neighbours will recognise this painting!

For anyone who lives on the moon and doesn't know anything about Neighbours here are some links....

https://www.youtube.com/watch?v=qnJ5dWuKYfs

http://tenplay.com.au/channel-eleven/neighbours/about

http://tenplay.com.au/channel-eleven/neighbours/characters

These characters/actors are in Foggy's photos:

http://tenplay.com.au/channel-eleven/neighbours/characters/georgia-brooks

http://tenplay.com.au/channel-eleven/neighbours/characters/karl-kennedy

http://tenplay.com.au/channel-eleven/neighbours/characters/mark-brennan

http://tenplay.com.au/channel-eleven/neighbours/characters/imogen-willis

http://tenplay.com.au/channel-eleven/neighbours/characters/naomi-canning

Foggy has now been posted on to Hawaii....travelling in first class surrounded by bubbles (in a jiffy bag!).

Doggy snogs xxxx

What's In A Name?

Hello!!

Foggy is currently having a wonderful time with the Neighbours on Ramsay Street in Australia and so has allowed Sally to write this blog post. There is big news in the world of M.E. and he thinks Sally should highlight it. So here goes...

Hello,

Last night the Institute of Medicine in the US published a VERY LONG report into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. The report was to consider a possible name change, identify characteristics and define how to diagnose the illness.

This is the report:

http://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf

In all honesty, I had brain fog last night and insomnia today so don't have the brain power to take in all of the medical language. I have been able to read the summaries though and think it could POSSIBLY be a step in the right direction. It clears up a little bit of the confusion between M.E. and CFS and stresses that it is a real disease and not a psychological syndrome. It is very early days and it is not clear whether the new definitions will be accepted and implemented globally. We will have to wait and see.

It doesn't have a direct positive impact on the suffering of 17 million people, neither does it lessen the severity of symptoms. However, is a massive boost to finally feel that those in the health profession are finally listening. Instead of a very long list of POSSIBLE symptoms required to be diagnosed it has simplified and reduced the list to make a much more definite diagnosis possible. The report says you should have either cognitive problems (brain fog/memory) OR the inability to stay upright for too long with great relief upon laying down, in addition to other symptoms. I have both of these symptoms so at least I know I haven't been misdiagnosed!!

It does frustrate me that so much time, effort and money is spent on classifying the illness, rather than researching what it actually is biologically. To me, it doesn't matter what the name is; the illness would be more credible and accepted if you could definitively explain to a non sufferer what it actually is rather than offering a list of invisible symptoms. (Does that make sense - brain fog today!).

I am going to stick to saying I have M.E. until I am 100% advised otherwise. Systemic Exertion Intolerance Disease (SEID) does sound a less wishy washy than Myalgic Encephalomyelitis (who isn't fed up with hearing M.E? Yes, it's all about me, me, me) and it does kind of say what the illness involves. However, I spoke to someone very close to me about it last night and the first thing he said to me when I told him the new name was 'so you have an excuse to be lazy?' He was joking but it does make me wonder if it will cause more people to think we are playing on the illness to be lazy. WE KNOW WE ARE NOT LAZY!! I had to Google what systemic meant....if I had to then I'm pretty sure non sufferers will not know what it means either. Is that helpful to our cause?

Definition of systemic: http://medical-dictionary.thefreedictionary.com/systemic

Below are some interesting articles about the report:

http://theargusreport.com/iom-wants-mecfm-name-changed-to-systemic-exertion-intolerance-disease-seid/

http://america.aljazeera.com/articles/2015/2/10/institute-of-medicine--calls-for-renaming-chronic-fatigue-syndrome.html

Let's keep our fingers crossed that this is the beginning of great change.

Sally 

Ps. Here is Foggy with Dr Karl Kennedy (Neighbours) in Australia - HOW EXCITING!!!!

One Woman Band!

Hello,

Foggy is having an amazing time sipping cocktails with Uncle Derek and Aunty Pauline in Kerala, soaking up some culture and lounging around in the beautiful sunshine.

Sally has told Foggy he needs to pull his weight and do a little bit of work while he is kicking up his heels so here is his latest blog post.

Foggy finds it hard to understand how M.E. sufferers find the energy needed to do their own fundraising and campaigning. He has been impressed by how many sufferers are writing blogs, undertaking challenges and campaigning to raise funds and awareness for the various M.E. support organisations around the globe. Sally has had to explain to him why it is difficult for non-sufferers to understand and empathise with an invisible illness. There are non-sufferer supporters and campaigners but, in the main, it is down to sufferers to raise funds and awareness. Those with the least amount of energy have to put in time and effort to make others understand.

Foggy is amazed that Sally is able to put as much effort into the campaign as she is currently managing. She spends at least a couple of hours a day (before work, lunchtime and after work) emailing, doing social media, taking photos, recruiting Foggy sitters, trying to fix silly IT problems, checking legal stuff like copyright, snuggling Patch (oops that's not work), networking, making things for Foggy playtime and organising photos over and over again. Foggy knows how exhausted Sally is at the end of her usual working day and this extra work is definitely a test. Foggy can see that Sally's symptoms have worsened slightly and is worried about her. But, she is taking care of herself as much as possible and is determined to keep pushing this campaign until Foggy's mission is complete. In a perfect world, Foggy's HQ would consist of a marketing, legal, IT, publishing, illustration, and finance department. Unfortunately, it doesn't and Sally has become a bit of a one-woman band. 

Foggy has a doggy crush on Doris Day!

Because Myalgic Encephalomyelitis is invisible and misunderstood it would be extremely difficult for non-sufferers to talk knowledgeably about the condition. OK, doctors may know some of the biological effects but do they know what dead legs feel like? Have they ever experienced absolute complete exhaustion when you can't feel your body and you can't get your brain to cooperate? It is only people who experience this dreadful illness first hand who can communicate how life-destroying it is. 

Foggy snogs xxxxx

Misleading and not helpful

Hi,

I deliberately keep this campaign light and upbeat as I feel there are more than enough heart wrenching ME life experience blogs/campaigns/websites in the world already. I am trying to make this campaign engaging and enjoyable to follow whilst highlighting the awfulness of this increasingly common debilitating illness. I think non sufferers do not understand the politics surrounding the ME/CFS debate and many of the other issues which cause discord among sufferers/campaign groups. I want to focus on educating without the veil of politics confusing the issue. I don't usually comment on the latest research findings as my brain just doesn't understand what it is reading (I was dreadful at Biology at school) and I don't want to add fuel to an already confusing medical subject.

However, last night I went to a friend's house for dinner (very nice too) and a recent article came up in conversation. She asked me if lack of exercise could contribute to my symptoms. I wondered if she was asking the question because of the research article published this week, she said yes it was. I spent the next 15 minutes attempting to explain why/how exercise affects my symptoms (I don't think I did a very good job as I/we don't know why!). Her view was that if symptoms were already bad without exercise then surely exercise wouldn't have an overly negative impact. I explained that it makes symptoms 10 times worse. She is a supportive friend and accepted my reasoning without arguing...I wonder if other sufferers have encountered that this week?!

The article below was published in the Guardian but it could also be found in a number of other newspapers this week.

http://www.theguardian.com/society/2015/jan/14/chronic-fatigue-syndrome-patients-fear-exercise-hinder-treatment-study-me

This article made me incredibly cross; yet again it hints that ME sufferers are lazy and avoid exercise. Let me explain how MY body reacts to exercise.

I hate that I can't walk/cycle to work and drive in every day. It would be about a 45-minute walk door to door and I know some of my colleagues do this. I know that halfway to work I would start to get dead legs and by the time I reach work, I will be so exhausted I will be too tired to do any work and would have to go home. the overexertion would impact the next few days and would probably lead to a few days off sick. Many times, I have taken my dog Patch on a 30-minute walk and when I reach the farthest point from home my symptoms double. I get brain freeze; I just can't think straight and my legs go numb. I collapse when I do get home, I am usually shivering whatever the temperature, have swollen glands, my cognitive skills will have gone AWOL; my spinal cord feels like a flimsy piece of spaghetti and I can't hold my head up as it feels like a dead weight. I only take Patch for walks at weekends so it doesn't impact greatly on work, luckily.

A few years ago I went through what I will call a remission period. I could go to the gym 3 times a week...do a 30-minute cardio/weights session and then go to work. I used to get that lovely post exercise buzz until around lunchtime, symptoms would gradually get worse throughout the day and I would be exhausted by bedtime but it was manageable. I had been advised by doctors that exercising could help with my depression and M.E. and so I was experimenting. Unfortunately, I then experienced stressful events in my life and thoughts of exercise vanished as my M.E. symptoms came back with a vengeance.. 20-30 minute dog walks have been my limit for the past 2 years.

My own personal view is that, if you have moderate/mild M.E. then it is good to stay a little bit active so that your body doesn't go to sleep completely. To be honest, just struggling into work, shopping, day to day tasks cover that without the need for specific exercise. Movement is a good thing if you can do it. However, severe sufferers can't do that and I am assuming that just breathing is enough movement to have to cope with; let alone speaking, blinking, watching and interpreting things around you.

I do not have a fear of exercise, I simply have to micro manage my energy levels to make sure I have enough energy to get from A-Z every day without collapsing. I find it incredibly insulting that the research team mentioned in the article seem to think that we don't exercise because of fear. The article is extremely distracting from the key issue; we need more research into the causes of the illness not just random headline grabbing rubbish about how to manage symptoms. Most sufferers listen to their own bodies and manage symptoms accordingly. Having the illness is bad enough without having non-sufferers preaching that we don't help ourselves by not exercising.

Sally

Brain fog

Hello!

I (Sally) have insomnia (one of my M.E. symptoms) and I have decided to write the latest blog post while Foggy is fast asleep in Foggy HQ.

This blog post is about perhaps one of the most noticeable symptoms for me to deal with. It's a symptom that other people can actually detect, some days quite easily! Brain Fog.

In the past few months, my brain fog has got worse. Family and friends are noticing more frequently that they have to finish my sentences (surprisingly not annoying - much appreciated!) or remind me of things I have done. Twice in the past week taps have been left running because I have been distracted and forgotten that they were even turned on! Luckily there were other people around to turn them off to avoid a soggy carpet!

Pre-M.E, I was like a human dictionary; spelling was something I excelled at, but now I question simple word spellings and constantly doubt that they are spelt (is it spelt? Or spelled?! ....see???!!!) correctly. Friends used to come to me if they needed help with spelling instead of a dictionary but now...not so much! I even make up words; for example I have been saying 'lackage' for months. In the context of....'I have a severe lackage of brain power today'. In my mind it SOUNDS like a word! I even looked it up in a dictionary to see if lackage exists...it does....but not in the same context. I struggle for words all of the time and so maybe it's not surprising that I have made up my own!

I find the inability to string a sentence together (occasionally) extremely frustrating. I literally freeze like a mouth gaping goldfish while my brain fishes around for the right words to say. One of my current habits is starting a sentence, having to stop because I have lost my thread, I pause (5 seconds), say 'rewind' out loud (so whoever I am talking to knows I am not going nuts!) and start again. I tend to start sentences half way through as if I am in such a rush to say the uber exciting thing I am thinking about out loud I miss half of it! If I get distracted and have to come back to the conversation minutes later do you think I can remember what the heck I was talking about?!!!....um.....no chance!

When I am extremely tired I find following conversations difficult; I kind of zone out. My friends can see when I tune out of what they are saying. Apparently I look blank and a bit vacant. I wish I could capture in a photograph what my eyes look like when I am very tired and zoned out as, I've been told, sometimes it's the only indicator and my invisible illness can be seen. I've lost count of the amount of times per day I say 'I'm not sure if I have said this to you already but...', my short term memory has never been great but has got noticeably worse since having M.E. I can't remember names, place, dates, events. Diaries, wall charts and calendars are my life savers! I know a lot of non-sufferers say that but if I don't put it down in some kind of reminder I completely forget. I've missed work events, meetings, social events, car MOT's, tax renewals, vet appointments...I even forget my medication dosage! Memory loss can be a bit of a nightmare when I try to remember which medications I am allergic to! There are now so many I have to have the list written down. I even forgot how old I was a couple of months ago. I had completely lost 5 years! My mum and I had a slightly weird conversation as I/we worked it out!

Learning new stuff can be testing; it does depend on how it is delivered. I can't do wordy emails or documents. I lose concentration very easily. Perhaps (even though I have an English Literature degree) that is why I haven't read a book from start to finish for a very long time. I lose concentration after a few pages and completely forget what I have just read! This makes me sad - I used to be a very booky (is that a word?) person; I always had my head in a book pre-M.E. If I have to learn things in a practical way, and actually 'do' the thing I am learning, I find it so much easier to remember. 

During low moments, I doubt that I have attained a post graduate degree. Who me? I did that? Are you sure?! I have no idea how I found the mental capacity to study at that level...and pass! That is when my M.E. symptoms began; I am very glad that I did not accept the advice to take a break and try again at a later date. I definitely would not be able to study so hard now; I simply don't have the energy or brain power to write about comparative Russian politics...at length!

I find it very difficult to talk about myself in the third person on social media. Obviously, Foggy only has tiny paws and can't type ( ;) ) so I have to do all of his admin work for him. I have been picked up a few times by eagle-eyed Twitter and Facebook followers for speaking in the wrong person. With all of the work I have to do on a daily basis is it really surprising that I slip up occasionally?! When it is hard enough coming up with something to tweet about, then working out how to make it engaging and then thinking about spelling etc...my poor brain gets a bit fried! 

Love from
Sally 
(and Foggy OBVIOUSLY)xxxx

Foggy's New Year resolutions list!

Hello!!

Sally thinks Foggy is perfect 'just as he is' but he wants to be a better Foggy in 2015.

So here are his 2015 resolutions.

1. Eat less Wotsits - they are crisps and not a vegetable
2. More regular baths - hey! A 30 degrees spin in the washing machine isn't good for his fur!
3. Be less cheeky! 
4. Be more of a daredevil - Abseil/climbing Mt Kili coming up!

Foggy says Happy New Year to all of his Followers; hopefully 2015 will be a great year for us all!!

Doggy snogs

xxxxxx

Blog post from Claire - a Foggy sitter and moderate M.E. sufferer

Hello! 

My name is Claire (@1987clairebear if you fancy saying hello on Twitter!); I’m 27, and very proud to be a Foggy sitter. Foggy visited Northern Ireland in November 2014 – you can read all about his adventures here.

https://www.facebook.com/media/set/?set=a.1505795216348066.1073741858.100007528067190&type=1&l=bdc1e104c8

This is me with The Mayor of Derry.... 

Just like Foggy’s human, Sally, I have ME (myalgic encephalomyelitis, also known as Chronic Fatigue Syndrome, or CFS), and I was diagnosed in March 2014, after several years of symptoms and tests. Sally has asked me to write a short post about my life as an ME sufferer; this is my first ever blog post, so bear with me!

People hear the phrase “Chronic Fatigue Syndrome” and assume that fatigue is the only symptom, that it’s just like being “a bit tired”. For me, fatigue is the most severe symptom (and this isn’t just being a bit run down – it’s complete and utter exhaustion, that I can’t quite describe), but it is far from the only one. There’s also- chronic pain, usually lower back, hips, stomach and neck - brain fog – difficulty in concentration, mixing up or forgetting words, names etc - difficulty controlling/regulating body temperature - breathing problems - depression/anxiety

I work as an accountant; I joined Grant Thornton in Belfast in August 2010, and worked my way through the qualification process, qualifying as a chartered accountant in September 2013. ME has had a significant impact on my ability to do my job. The constant state of exhaustion has resulted in cutting my hours (I now only work four days a week), and reduced travel; I’m now office-based, allowing me to get the bus to work, rather than client-based, when I would have driven anything from 20mins to 2hours per day. Brain fog means I struggle to think clearly at times, meaning I have to work extra hard when preparing for meetings, presentations or even simple tasks like telephone calls. When I am not working, I am usually resting. When I get home from work after 6pm, I have dinner and go to bed almost immediately; it’s not unusual for me to be asleep by about 8.30pm every night! On my days off, I mainly spend time lying on the sofa resting, listening to music, or watching TV if I am well enough. My body seems to go into “recovery mode” on these days, and the slightest thing takes a lot of effort. Sometimes I wake up, have a shower, and then need to lie down for a while before I’m able to find the strength to get dressed!

This is the side of things I don’t let people see. I am guilty of trying to hide my symptoms around others, so they don’t see the times I don’t have the strength to climb stairs, to get properly dressed, or even to just sit upright. I guess I’m not quite “OK” with feeling like this yet, and so I avoid letting others see me like this.   

I have been a musician since I was 8, and am happiest when singing or playing piano (brain fog means there is no chance of these happening together!) When I am well enough, I go to church on a Sunday morning and will often lead the singing. I have been involved in this for several years now and love doing it. I think it is when I am too ill to do this well that I get most upset; it is something I am so passionate about and love doing, and it’s torture when I’m not well enough to do it.  

ME does not define me, and although it affects almost every part of my life, I’m learning to try and live with this illness as best I can. I’m slowly learning that “it’s OK not to be OK”.

Claire xxx

*Foggy* (and Sally) Claire, is a much valued member of Team Foggy and her precious, fully functioning, spare time is often spent helping as a place to bounce ideas off. Sally didn't know Claire pre-World Tour but now considers her to be a friend and hopes to stay in touch well beyond Foggy's current adventures.