'You haven't got a 'never been seen' illness....'

Sally post again...sorry Foggy!

Back in 2007 when I first started with M.E. symptoms and had almost weekly hospital visits trying to establish what was wrong; I, obviously, turned to friends for support. In the most part, I received fantastic support and I will be eternally grateful for the phone calls, girly chats, visits I received while I was stuck at home. However, one friend's reaction will always tweak a hurt response from me. I won't name him but he will know who he is when he reads this.

In a paragraph, to sum up what was said (obviously not word for word...it was 7 years ago!): 'Get over yourself. You will not have a never been seen illness. You aren't a one off, there are probably millions of people with the same thing. Stop going on about it. You'll get diagnosed eventually, take a pill and recover. For god sake it's not as if you have got cancer'.

I'll just let you digest that.....

I may now be diagnosed (kind of....everything else has been ruled out....but...), yes there are millions of us with the same (ish) symptoms. When you are stuck at home with no idea why you feel so dreadful, feeling like your previous 'living life to the full' self has gone, and being fobbed off by doctors it is the only thing you have any desire to talk about!! As you will all be aware now, if you have been following this campaign, there is no treatment...let alone a pill!! As for recovery ........ who knows!!  The last comment about cancer is particularly hurtful. Unfortunately, because you can see the ravaging effects of cancer people do not see M.E. as being in the same league but, as someone who has had cancer, I can tell you it is just as debilitating, life changing and devastating to the sufferer, family and friends.

Since then I have a much more positive outlook and get on with life much more than before. I am lucky to be able to do that; there are many sufferers out there with symptoms much worse than mine and living a full life isn't possible.

Onwards and upwards,

Love

Sal xxx

Foggy's 3 month 'anniversary' - time is FLYING!

Hello,

Foggy has now been globetrotting for 3 months and while he is chilling in his jiffy bag on the way to Walhachin, British Columbia he thought he should do some kind of write up of his exploits so far.

He has met some lovely people on his travels: he went to the CBeebies Proms in the Royal Albert Hall in London with Patrick and his family, ascended Snowdon with Linda, met Romans with Sharon, been to London VISA shopping with Cerianne and Harley, planted a ceramic poppy at the Tower of London and met a beefeater with Yvonne (lovely day out for Sally too), went on a plane for the first time with Linda to Jersey, saw some big rocks and went on a very long walk at Stonehenge with Sally and Michele and went SKYDIVING!!!!! Then of course he went overseas!

Turkey was his first overseas visit and Foggy have a lovely time with Michele looking at ruins at Eupheseus and sunbathing, then he went on a last minute trip to New Zealand because Foggy's Mount Kilimanjaro adventure was cancelled. Foggy had a lovely time in Christchurch; it was a true reflection of how Christchurch is post earthquake - a building site!

Then Foggy came back to the UK to go surfing with Uncle Derek and Auntie Pauline in Bude, Cornwall. Foggy had such a lovely time! When he got back he had a day trip to the Isle of WIght with Sally and her family. Foggy met dinosaurs!!! WOW!

Next came his fly/drive/choochoo train trip across America. He started in Portland, Oregon where he visited the Port of Garibaldi and went fishing with Yvonne and then headed to Santa Cruz where he did some sightseeing and shopping. Then it was a very slow postal jiffy bag trip to Florida where Foggy chilled out, met the local wildlife, sunbathed and had some retail therapy with Ann and co. He had hoped to meet some Disney characters but he 'just' missed out due to having to jet off to Canada. Foggy is upset that he didn't meet Goofy....doggy idol!!

Foggy has so many future adventures planned his head is spinning!!! 9 months left.......eek! 43,500 miles clocked up already....his paws are getting a little bit tired. Lots of rest and play in Walhachin will sort him out....wide open spaces...lovely.

Please keep donating and make his efforts worthwhile .

Doggy snogs xxx

WOW...that was a busy weekend!!!

Hello!!

Foggy has allowed me to hijack his blog again. So much has happened this weekend it was hard for his doggy brain to compute it all!!

All Foggy Followers will have noticed that it was my birthday this weekend....I love birthdays and want the whole world to know when it's my special day! Sorry if it was a bit self indulgent but hey...I think I'm worth it :) My birthday ALWAYS coincides with the Royal Marines Band Service Reunion weekend in the UK. My dad was in the RM Band for 26 years and so I grew up enveloped in the world of music and friendship. The reunion is held in Portsmouth each year (handy for my family!) and we always attend to catch up with old friends. My dads band friends are like extended family and I love them all dearly xx

The evening's bar staff...not the usual day job!! Thanks for the photo guys xx

Anyway, just in case anyone was interested in the campaign I took along some of Foggy's business cards (very organised for once!) and some I Heart Foggy signs in case any slightly tipsy people wanted to support Foggy with a photo on Saturday evening. I was blown away by the enthusiasm I received. I will always be amazed by just how many people are connected to M.E. by spouses, relatives and friends. As I have said throughout this campaign, M,E. is becoming increasingly common and touches most people in one way or another.

Say I Heart Foggy and smile :)

On Sunday was the RM Band Memorial Service at Portsmouth Cathedral. This is always an emotive service remembering bandsmen who are no longer with us. We were treated with an orchestral mini concert prior to the service - fantastic as usual. More fundraising/networking was done on the Sunday too...Foggy's word was definitely well and truly spread! Over the two days lovely RM Band folks (ex and serving) donated £183 to Foggy's campaign...I managed to sell around 10 badges - important conversation starters! Thanks to the hard selling techniques of Debs and Butch the badges were a success! Fabulous!

Selfie!!

If I am honest I hadn't expected any interest. Up to this point in the campaign I have had little or no interest from military people. Because serving personnel are physically fit many don't understand invisible illness. It's not something they encounter on a daily basis unless family/civilian friends are affected. So, I was a little overwhelmed by the support I received.

This man's nickname is Foggy.....tee hee

I would like to say thank you very much to every person who has talked to me about Foggy, donated or offered to help the campaign this weekend. I am extremely grateful for the donations and enthusiasm received.

Enjoy some of the photos from Saturday night.

Bye for now...I'm off for a rest!! Sally xxx

Selfie!! Thanks Tony xx

'We heart Foggy'

Caleb would only pose with a pint in his hand....Apparently Foggy isn't butch lol

Oh and....Foggy managed to send birthday wishes in his own special way from Florida......

Thanks Foggy!! Doggy snogs xxxx

Greetings from Germany!! Nick's blog

Hello!

Foggy wanted to spread a little bit more awareness of how M.E. can affect anyone no matter what sex, age or location. The following blog is from a lovely man called Nick. He is Dutch but currently lives in Germany. 

Here is Nick's story....

Hello from Germany!  I am Nick and I am 28 years old 

In 2006 I was suddenly struck down with terrible joint pains and over the next 2 months the pain got worse. I went to see a rheumatologist who could not find a cause.
Soon after I became sicker and I got more and more health problems. I was getting extremely tired and I got more and more pain in my body. I went from doctor to doctor and each time I was told it's a physical health problem.
I had a lot of problems and stress with work; I was unable to work because of my health problems and my work health doctor said I wasn’t ill.
The problem was that no doctor could find anything (only arthritis and liver problems) and they said it was all in my head.
I get no benefits because I ‘do not have a disease’, it's time that ME / CFS become officially recognized as a serious illness (It’s recognised even less in Germany/Netherlands than it is in the UK -Sally).
I was no longer taken seriously, even my friends and family began to doubt whether I was really sick when doctors said they couldn’t find anything wrong.
I found it so bad that everyone thought I was just depressed and not sick! I lost everyone; I have now just my partner and parents.
People who don’t know me well call me lazy and a poser.
The biggest problem is that people see nothing because it is an invisible illness and they believe you are too lazy to work.
I may go into town once in a while and people say it can’t be that bad because I am up and about. What they do not see is that I am very sick for the next 2 weeks and have to lie in a dark room so my senses are not overstimulated.
I have now become so ill I hardly leave my house and almost never do fun activities.

Six years on and I have the following symptoms:
- Extreme fatigue

- Arthritis - pain in my whole body

- Painful lymph nodes in neck / jaw / groin

- Malaise / fever

- Stomach / intestinal pain

- Sore throat and painful salivary glands

- Low blood pressure

- Canker sores attacks

- Severe migraines

- Muscular pains

- Allergic reactions

- Chronic colds/ ear problems

- Sore arms, hands and legs /pinching sensation

- Bad eyes/Sensitivity to lights/ blurred vision

- Forgetfulness and depersonalization

- Rashes

- Abnormal liver function

- Sleep problems

After more than six years , three rheumatologists, one cardiologist, two psychologists and a number of other doctors, I still have no diagnosis.

I have been left to my own devices; it is very difficult to be positive and I am hoping there will soon be a time when research leads to diagnosis and treatment so I can start to live again!

We have to fight together!

7 years ago I was going to the disco every week and I was a very busy person. Now I find pleasure in singing birds and blue sky.

We are not crazy or lazy; we are sick people who want to live!

Never lose hope!

Thanks to Foggy for letting me tell my story.

Please follow Foggy’s campaign, donate and help to raise research funding.

Nick

Lisa's story

Hello,

It is incredibly difficult to describe how debilitating and life changing M.E. is to a non-sufferer. Foggy thinks that having a range of sufferers 'guest blog' with individual stories will show the wide range of symptoms and levels of suffering. This particular blog is written by Lisa who has severe Myalgic Encephalomyelitis (M.E).

Here is her story....

Hello there, I'm Lisa (@2lisaland); I wanted to share with you a few of my experiences of having M.E. I went to university as a mature student and had never had any health problems at all until I caught glandular fever. Overnight I went from having a full and active life to only leaving the house for doctor appointments.

I was told it might take a few months to get better, but it didn't. It became M.E. and, up to this point, I've had 5 years of being housebound. I did have a period of much better health for a few years but then relapsed after catching a stomach bug. I had heard you don't relapse for as long or as badly, but it turns out that isn't true.

M.E. for me, feels like having the achiness of flu mixed with complete exhaustion. My body feels like it's wearing a suit of armour, dragging it up and down the stairs is quite a feat. I have bad brain fog so writing this is a struggle and I have to write little bits and then put it down. I can't read books as by the end of a page it's all just a blur. I get exhausted very quickly when concentrating on a conversation. I often have pain in my legs, my temperature can be all over the place and I get erratic heart palpitations which I find quite unnerving.

I wake up feeling like I've run a marathon so spend most of the morning in bed listening to the radio to give my body a chance to recover. I carefully split the rest of the day into chunks of watching TV and lying in bed listening to music or radio 4. I need help to wash my hair and rely on others to do the housework, shopping and walking the dogs.

 

Lisa - Foggy campaign supporter

I miss so much about my previous life, like chatting with my friends, going to the cinema, going out for a coffee or for a meal, being able to walk round my garden. I miss not being independent and being able to trust my body in a way that I completely took for granted when I was well. I miss my job. That might sound strange but I worked in a role where I was helping people alongside colleagues who were like minded to make a difference. I miss being part of that community. It is hard to be on the sidelines when so many people have it tough and need help. Now I am the one needing the support.

M.E. is a difficult illness to live with. It dictates everything, is very debilitating and yet invisible. Not only is there the physical side to contend with, you also have to deal with the endless frustration of being ill and the grief of losing the life you once had. It takes a lot of courage to adapt to a new way of living and let the old one go. I don't always recognise that courage in myself but can see it clearly when I look at other people with the illness who are a source of comfort and inspiration for me.

I've adapted by finding new interests. I've started listening to classical music which can be very soothing or deeply emotional. I've watched many gardening programmes and learnt about plants and design. I enjoy a lot of sport on TV and have discovered radio 4 which is full of comedies that make me laugh, dramas and programmes which teach me something new. A good boxset or audio book is a godsend. Whilst all these make me feel like I've reached my 60s, many decades too early, they occupy my time and help it to pass more easily. I've realised I need to take enjoyment from small things, value the things I do have, and let go of how I think life should be. This is something that takes practice and discipline and some days it is easier than on others. I don't feel I'm fighting M.E.. I feel I'm trying to just get through each day as best as I can with as much peace and grace as I can find.

I am deeply grateful to those who have stood by me and continually supported me. They have kept me sane as have my 2 gorgeous dogs who make me laugh and love me even though I can't take them out for walks or have playtime.

I am writing this because the illness and its impact is rarely understood and it takes a lot of energy to explain it to people. Hopefully by raising awareness of the reality of the illness we can at least save sufferers the feeling of isolation that comes with having an illness that is so misunderstood.

Lisa x

Foggy's blog - from a different perspective - 'Fighters'

Hello!

Foggy has asked a handful of M.E. sufferers to write a blog post so that readers can see/understand how varied and wide ranging M.E. can be. He has chosen someone from each of these areas: Young, severe and 'recovered' to tell their story. This blog post is written by an 18 year old young woman called Daniella Russo.

Beautiful 'fighter'..... does Daniella look ill? Just shows that M.E. is an invisible illness.

Hello there!

Before I begin I'd better tell you a little about me- paint the picture so to speak. My name is Daniella Russo and I am an 18 year old cat-lover who is addicted to chocolate, life and shoes... and I just happen to suffer with chronic migraine and- just my luck- another chronic illness called M.E.

My Dreams:
- A good, restful nights sleep!!
- To work for Disney- preferably as a Princess with a Palace.
- To be able to hold a normal job.
- To be understood and loved.
- To marry Channing Tatum/ Olly Murs/ Ryan Gosling (I'm not picky -we can all dream!)
- To be happy.
- To be healthy.

My Fears:
- That I can't reach my full potential and the very high standards I set for myself.
- Spiders of all shapes and sizes, irrationally so!
- That I won't find "The One" and love my fairytale (because how can you meet people when you spend your life in bed- well, not the kind I want to meet!).
- That I will feel like I have slept or watched my life go by...
- That many more members of my family or friends will fail to understand my illness and I will lose them too; I have lost many already.

Hopefully you feel like you know me a little better now and, if not, you probably think I'm a little bit nuts... which is quite accurate, actually!!

Back to business:
I was diagnosed less than a year ago, despite doctors recognising that all these symptoms were progressively ruling my life since 2011. I developed this condition following a bad case of glandular fever; however, post-viral fatigue (leading to M.E) is not the only cause for the onset.

One of the main issues with M.E is that it isn't spoken about enough. This means there isn't enough: education; research; funding or compassion for this disabling illness. Which is why (with many thanks for the invite to share with Foggy) I am going to share my fight and, hopefully you'll agree, my success, up to this point, with you.

So, to have looked this far and to have reached this blog you must have some link to M.E., I assume. Therefore I welcome you! Whether you're curious to learn more or suffer yourself and are searching for someone who understands, I'm going to give you a really brief lowdown on what it is and what it means for me and my life.

Actually, let me backtrack a little now. As a sufferer, I can't seem to find a definition that does it justice. Perhaps this is because it is a different experience for everyone with M.E as there are so many symptoms and problems which occur as a result of it. The frustrating thing is, because it is different for everyone, there is no one definition that summarises M.E and this means diagnosis and understanding is extremely difficult. So, in an attempt to summarise it, I'm going to write my own, personal definition- so here goes!

To me, M.E is an overwhelmingly disabling illness that, whenever I want to do something, tries to stop me from succeeding by attacking: my body, my spirit and my mind. It's as if, out of all your bodily functions, only a few can work fully at any one time. This means you're never at full health and have to always fight through something as best possible. Basically, it's one thing after the next!

But that's it- it's a fight. Which means it hasn't won yet.

Inevitably, due to my age, the main impacted area of my life far has been my education; I suffered through my GCSE's, AS' and my final year of A-level exams.

For my A-levels, most recently, I studied: Sociology, Business Studies with Economics and English Language. In retrospect, it was my most difficult year yet battling M.E. as I consistently failed to maintain concentration to work and the energy necessary to get up to attend college. Often bedridden, I pushed myself to the extreme on the rare occasions  I felt I could work.

In the lead up to my exams I was shattered; this isn't any kind of tiredness someone of relatively good health can comprehend- this is the unspeakable lack of ability to move or think... It's zombie mode! In fear I was sleeping my days away, I often doubted whether I should sit my exams at all as I didn't possess the energy to catch up what I had missed due to my low attendance, let alone revise. So why bother to put myself through all this pain and struggle to force myself to sit them? After all, I thought, I was surely going to fail myself and be disappointed beyond belief... it would only be a reminder of how I am not able to live up to my potential.

Well, I couldn't have been more wrong. I am now the proud owner of 2 As in English Language and Business and an A* in Sociology at A-Level!!!! (Yes, I'm a nerd!) *Well done!!! Doggy snogs from Foggy!!*. I also have an unconditional place at my chosen university (NTU) to study Marketing, beginning September 2015; this is due to me having to take the decision to defer my place in order to improve my health after being advised by both my teachers and- more importantly- my doctors. I was extremely lucky my parents were supportive of my decision.

I've been told on numerous occasions that it seems to hit those who want to take the world and run at 100mph to grasp everything in life and do as much as possible. I've been told that people could see me as "The next Prime Minister" if I wasn't suffering with illness... Who knows, perhaps I still may be.

I hope it proves and inspires other young sufferers, we can still achieve- and it means more when we do because we've had to overcome the full equivalent of trying  to juggle whilst completing a Marine-level obstacle course called Myalgic Encephalomyelitis.

Yes -it's disabling. Yes -it may feel like it has us defeated sometimes... BUT, WE ARE FIGHTERS. And I sure as hell think I'm giving it a good run for it's money- I will not be held down, not today and not tomorrow.

We are a success. Somedays it may only stretch to (as most would consider) basic chores such as showering or doing the dishwasher... But others perhaps we can be unstoppable. It may take us longer. It may be harder. It may feel damn right impossible. But WE ARE a success.

For those who don't suffer: all we can ask is that you try to understand us (even if it makes no sense), love us, don't abandon us, be patient and support us. Also, thank you for caring enough to listen to my story.

For those who do: 'good luck' for the future and 'well done' for surviving and fighting it all this far. We can do it and I am confident that it will improve for us in the future. With dedicated angels (like Foggy and Sally- and all others who are fundraising and fighting for us), I believe there will be a cure; I'm currently part of some research being undergone by a few universities, so there is hope. Until then, organisations (such as the ME Association) will continue to educate others and support us in our rights.

... Or, even better, you can tune into this lovely blog to smile with Foggy.

Anyway, for now I will say my goodbyes because my cat is nagging me for her lunch! (...and my tummy is nagging me for mine)


Thanks for listening- reading?!

Ciao,   Dani x

Foggy's Bucket List

Foggy's Bucket List

• Sit at the top of the Eiffel Tower
• Ride a motorbike
• Go on the Eurostar train
• Fly a kite
• Go Go-karting
• Give Mickey Mouse a doggy snog
• Go skateboarding
• Meet Holly Willoughby and give her a doggy snog
• Go hot air ballooning
• Appear on stage
• Eat pizza in Italy
• Ride a horse
• Have photo taken with Neighbours cast (esp Bossy the dog)
• Have fun at a Hawaiian Luau
• Run a marathon
• Sing at a karaoke night
• Go diving in an ocean
• Have a go at trampolining
• Ride in a rickshaw
• Go ten pin bowling
• Play rugby
• Raise £10k for ME Association

If you can help Foggy do any of the things on his bucket list please contact Sally at mefoggydog@gmail.com