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Saturday, 25 October 2014

'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,


Sal xxx

Friday, 17 October 2014

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


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

Monday, 13 October 2014

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


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!

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

Saturday, 4 October 2014

Greetings from Germany!! Nick's blog


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.

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