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Wednesday, 31 December 2014

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

Sunday, 28 December 2014

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.

Sunday, 14 December 2014

Christmas is coming!!

Hello!

Foggy is having a wonderful time with Gianpiero and family in Sicily. He has even been allowed to help fly a plane!!!! WOW! Foggy LOVES flying!!! Thanks must go to these lovely pilots for allowing Foggy in the cockpit...let alone letting him near the equipment! Dream come true!!


While Foggy is enjoying his adventures in Italy over the Christmas period, eating his own weight in ice cream, he will be thinking of his Followers around the world. He hopes that you all have a wonderful Christmas and wants to wish you all a happy and healthy 2015.

Doggy snogs xxxx

Saturday, 29 November 2014

Financial money stuff.....

Hello!!

This blog is a bit too serious/adult/financial for Foggy so he is handing it over to Sally to tell you all about her dilemma.

Hi,

I decided the other day that I need to get my finances in order and to do the mature thing and sort life assurance. I tried applying 5 years ago but having recent skin cancer meant I was rejected from all quarters. Now, 5 years on, I have the all clear and a life assurance company has contacted me and said I am eligible. Great news!!! Or so I thought. I did the telephone consultation last week; the adviser took all of my medical history. This OBVIOUSLY includes Myalgic Encephalomyelitis (M.E). She did not know anything about M.E. and we had a 5 minute conversation about it. I told her about Foggy, raising awareness and what my symptoms were. She said the illness wouldn't affect my eligibility; felt as if she was glossing over and making light of it. She told me to check the paperwork she was sending in the post and let her know if anything needed amending.

The paperwork turned up last week but I haven't had a brain cell to comprehend the terms and conditions so have only just sat down to read it. There are some inaccuracies that will need to be amended... so, another phone call on Monday coming up.

M.E. is mentioned in the following areas:

Question: Apart from in connection with a condition you've already mentioned have you visited your GP in the last 2 years?
Answer - yes

Question - Please tell us the name of the condition
Answer - M.E.

Question - When did the symptoms first become apparent?
Answer - 2006

Question - Have you suffered two or more separate episodes of this condition?
Answer - Yes (how the heck do I answer this one?!)

Question - When did you last experience symptoms or take treatment for this condition?
Answer - 2014 (again...how do I answer this?! I have it ALL day EVERY day!)

Question - Has your condition resulted in you suffering any periods of anxiety, depression, stress or insomnia requiring treatment in the last 2 years?
Answer - No  (I said no as I have symptoms but no treatment relating to M.E)

Question - When was this condition first diagnosed?
Answer - 2009

Question - Which of the following have you visited regarding this condition in the last 5 years?
Answer - Nurse/CBT, GP

Question - Are you currently on treatment for this condition?
Answer - No

My application has to be sent for a GP referral. My GP isn't an expert on M.E., no one is! He has openly admitted to me that as I have had CBT there is nothing else he can offer me. My concern is, how can the life assurance companies make any decisions if they don't know anything about M.E.? I have no idea what my prognosis is so how can they make a financial decision related to my health/life? I don't know if there is any point pursuing the application as, if I was a life assurance company, I don't think I would cover me!! Feels slightly iffy...as if they are bending the rules to make sure they get another customer. Is it just me?...

Anyway, I'd like to know if any other sufferers have had this situation? What did you do about it?

It's slightly worrying for me as I have no financial provision for later life (mainly due to the skin cancer episode), am single so don't have a second income as back up and I don't know if I would just be better off saving, saving, saving.

Thoughts please.

Sally

xx


Saturday, 22 November 2014

Work

Hey!

Foggy thinks Sally has been pushing herself a little bit too hard and wishes she would/could slow down a bit (Not possible Fogs). Foggy would like his non-M.E. sufferer Followers to understand why work demands can make symptoms worse. He is going to use Sally's typical work day as an example to show how working can affect symptoms.
Foggy and Sally on 'Take your soft toy dog to work' day!

Sally works in a large library.....she has said that the building is HUGE!! It takes 85 of her human steps to walk from one end of the floor to the other and there are 3 floors for her to get around each day. Sally has a direct facing customer service role and her shifts are fixed to meet customer demand. This means she is unable to tweak her hours if work demands get to much on a bad M.E. day. Her work day is rigidly timetabled and there aren't many sit down/away from service area jobs to retreat to when the day gets too busy. There are often between 700 - 900 humans in the building at any one time and the building can become hectic and busy. This means that on a daily basis she is probably doing her 10,000 recommended steps during working hours.

Let's talk practicalities for a moment. Working in a library means pushing heavy trolleys laden with around 75 books around corners, through doorways, across floors and in/out of lifts. Ever moved house? Got a bookcase? Remember how heavy those boxes of books were? Sally has to lift and shift these books on a daily basis. Anyone with M.E. will appreciate how carrying heavy objects can make your arms feel....extremely tired. Sally is an intelligent woman and is more than capable of answering any query. However, the physical nature of the role can make her brain 15 seconds slower than she would like. She often finds it hard to string a coherent sentence together; she forgets words. Her brain gets tired at the same rate as her body. There have been many occasions when Sally has been halfway up a flight of stairs to the floor above and her body wants to give up. She has to stop for a slight breather so she doesn't completely grind to a halt.

Sally started working at the Library when she graduated from her masters degree 7 years ago. The role has completely changed from when she started; the Library has evolved during that time into a more customer focused environment. As the Library duties have grown and expanded, Sally's tiredness has increased. During her first Occupational Health visit 7 years ago Sally was told that library work wasn't ideal with her condition, but that all necessary adjustments could be made. This would be great if Sally had her own designated working environment but she doesn't. Hot desking and shared information points mean Sally isn't able to adjust her working environment to suit her needs. Sally has told Foggy she feels she would be able to manage her symptoms much better if she had a job with a desk, flexi time and her own seat! Unfortunately, the fluorescent lighting and air conditioning makes her symptoms worse than they should be and Sally has to wear tinted glasses and layered clothing to cope. When Sally gets cold she gets 'bone-cold' and no amount of clothing warms her up. When the Library heating kicks in the heat is overwhelming and stifling for Sally; this can often make her slightly breathless, heady and makes her body feels like it is wilting. This can be tricky when she is customer facing! Pacing therapy has to come in to play when her symptoms are bad but a direct customer facing role doesn't really allow for unscheduled time away from the desk.. Other M.E. sufferers bodies simply can't cope with the demands of working; She is lucky to be able to 'push through it' and continue working. She plans on working for as long as M.E allows her to; she has bills to pay the same as everyone else.

Foggy wants Sally to start looking after herself and thinks she needs to find a job which doesn't wear her out quite as much. She is very good at her job, a natural communicator but struggles with the physical nature of the role. If any of Foggy Followers think she is doing a fantastic job with this campaign and can help with a future job possibility please get in touch.

Doggy snogs,

Foggy xxxxx

Sunday, 9 November 2014

Guest blog from James a 'moderate' ME sufferer

Hi, I'm James (@jpc101 if you're a twitterer) and it's an honour to do a guest post for Foggy!

Well, where do I start?

I've had M.E. for over 20 years (I'm 35). I got the flu over Christmas during my first year at Secondary School. Over the next few months I was on/off at School. I was diagnosed pretty quickly due to having a great GP who was always keeping up with the latest in medical things (pretty amazing back in the early 90s!).

During the first few years of my illness I was pretty much bed bound and so missed most of my Secondary education. I don't have any GCSEs or A Levels, but that hasn't stopped me running my own successful business for nearly 15 years! (I have got a GNVQ Advanced in IT - a two year local college course which took me four years to complete!)

My M.E. has been fairly consistent for the last ten or so years and I'd class it as 'moderate'. It effects every aspect of my life. My main symptom is extreme fatigue. I also suffer from brain fog and when I'm tired I also sometimes get right side muscle spasms/twitches (random and uncontrollable movements of my right arm and leg and neck - which can throw my head around). I've punched walls, kicked things which it's really not a good idea to kick and have thrown a few things around! (I'm left handed but use a mouse with my right hand - a few mice have died...) My fab oust thinks it might be some sort of nervous 'feedback loop' due to my silly M.E. body.

I've also got some food intolerances: yeast, nightshade (potatoes, tomatoes, peppers, aubergines, etc.) and dairy proteins. So this means no chips, pizza or alcohol!!!! I also seem to have extra acidic hands. I strip the paint/varnish off door frames and chair arms with which I'm in regular contact. (I asked my current GP about this and he suggested that I googled 'human paint stripper'!!!)

I live, with my parents, in the (sometimes!) sunny seaside town of Minehead. I work from home as a freelance web designer/developer (http://jpc-design.com). This keeps me pretty busy and I've got clients all over the world. I also run one of the biggest Christmas Information sites on the web (http://www.whychristmas.com) - it had over 6.7 million pageloads in December 2013 and looks like it will be busier this year :) So if you need know anything about Christmas - please check it out!!! I've got some great and understanding clients, as getting my work done can sometimes take longer than I'd like it to.

I don't get out of the house much (in the first few months of 2014 I could count them easily one hand). I've got a mobility scooter to help me zip around the town when I'm well enough to go out - a young guy on one does get some strange looks... Going out often leaves me exhausted for the rest of that day and a couple (or few) after as well.

I play the ukulele (I've got four..!) and the mandolin and am a member of a worship group at my Church (where I'm also the church 'tech guy'!). I love all kinds of music from classical to heavy rock via bluegrass and have about 450 Christmas albums in my iTunes collection as well ;) I'm also a total geek and Apple fan boy. I love anything with buttons to push! I've made some great M.E. friends via the web and especially Twitter. The internet truly is a lifeline for me.

I love watching sci-fi (hurrah for Netflix) and am a fan of 'unusual' sports. My favourites are American Football (go the Oakland Raiders and the Clemson Tigers), Cycling, Ski Jumping and Biathlon (cross country skiing and shooting - sounds strange but it's brilliant to watch!).

So that's me. Thanks for Foggy for letting me tell my story. I'll see you on the web!

Sunday, 2 November 2014

Day in the life of a mild M.E. sufferer......at a rugby event

Foggy is upset and not talking to Sally as he is DESPERATE to go to a rugby game and Sally went to one without him yesterday. Foggy thinks people need to know just how tiring fun days out can be for sufferers so has allowed Sally to write another blog post. He (the original) is still in the ether somewhere and Sally has had no luck SO FAR in tracking him down. Foggy's stunt double was still on the way back from Iceland so Sally was Foggy free for her rugby exploits!

Here is Sally's blog post...

Hi!
I went to Twickenham (sacred ground...home of England rugby) yesterday with friends. I woke up tired and my battery was never more than 5/10 full all day. I took the train to meet up with my friends at Waterloo station. The vibrations of the train made me feel unwell - heady and out of sorts. I was looking forward to the day ahead though so tried to ignore it. Anyone who has ever been to Waterloo knows how huge it is, brightly lit, hectic and very busy. Sensory overload!! My friend was running late (train delay) so I was loitering in the station for an hour and a half. There is very limited seating in the station but I managed to find a seat. It was designated for disabled people and those with difficulty standing. Now, we all know that this label applies to me but I still felt guilty sitting there!! I was receiving glares and 'you have no right to sit there' looks. If only they could see how drained/unwell I was feeling. 

I had a lovely birthday treat (belated - thanks Yvonne) for lunch and then it was back on a train to head to Twickenham. It was only supposed to be a quick trip to the stadium, but the train was delayed due to the large crowd attending the game. The train was overcrowded, very hot and stifling. It turned into a 45 minute trip in a sardine can ...in a microwave! By the time we got there I was wilting. The station is a good 10 minute walk (in a crowd) away. Trying to be sociable, chatty and 'up for it' with friends while feeling rough is incredibly difficult and draining. We made it to the stadium (yay!) and sensory overload was doubled. 55,000 people are a little bit noisy and busy! Standing in queues for drinks/toilet/access was uber tiring and I will admit I was flagging by this point. I stayed at a 3/10 energy level point for the game. I sat down for most of it and although my senses were being assaulted I enjoyed the game immensely. For those who care, Barbarians lost narrowly to the Australians 36 -40. 

The trip back to Waterloo was .......... there are no words! 35,000 of the 55,000 all queued to get the train so we decided to take the bus instead. After a 10 minute slow walk in crowds we managed to get on to a packed bus. The bus was hot and crawled slowly towards Richmond where we had decided to attempt to get on the train to Waterloo. I was stood up for most of this, brightly lit, bus journey and my legs felt numb. I was starting to feel empty and I had lost the ability to speak coherently. I think my friends knew because none of us made an attempt to chat. There was an unspoken, mutual need for silence!


The original plan was for me to stay in London for the whole weekend but I was so wiped I made the decision to go back home to Portsmouth. I would be zero company that evening and I knew I would be exhausted this morning and unable to do the things we had planned to do. I wanted my OWN bed and home comforts! The 2 hour trip home was bearable; the carriage was full but not crowded...it was also quiet....bliss. I was finding it tricky to keep my eyes open by this point and sat for most of the journey just resting my eyes. The fluorescent lighting wasn't helping and the shaking vibrations of the carriage were going right through my body.

I arrived home at 9pm......more than a 12 hour day all in
all and I was absolutely exhausted. I was in bed, asleep within 30 minutes of arriving back in Portsmouth. Let me clarify, the day would have been tiring for anyone, even non sufferers would have found it draining. However, the sensory overload for 12+ hours has left me feeling like vapour...I have no oomph left!! Today my brain seems to be ok but I feel like I have been run over by a freight train! Struggling with words a bit though.....my dad has been my own personal dictionary and grammar checker for this blog post!! (So if there are any mistakes it's his fault hee hee). 

Live and learn, I will never stop attending rugby matches...LOVE RUGBY! But, in future I will go by car/coach where there is less need for walking, swapping trains, standing about queueing. I have no idea how I managed it but...I had no choice...once I was in London I could hardly just stop. I had to do whatever I could just to get about and in the right place at the right time.

I wont be going to another game for a while now (unfortunately) but if any of Foggy Followers want to help with Foggy's Bucket List please volunteer to take him to a game *Foggy - PLEEEEEEEEEEEEEEEEEASE!!!*

Sally xx



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,

Love

Sal xxx

Friday, 17 October 2014

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

Monday, 13 October 2014

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


Saturday, 4 October 2014

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

Wednesday, 24 September 2014

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

Sunday, 14 September 2014

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

Friday, 5 September 2014

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




Saturday, 23 August 2014

M.E./C.F.S. and Hypermobility Syndrome

Hello!

Foggy would like to tell you all about the link between Hypermobility Syndrome and M.E. Sally has both....Foggy just thought Sally was bendy!

Foggy thinks that Sally is on a huge learning curve with this campaign; she is learning things about her own body as the campaign progresses! Foggy has used all of his doggy memory to put together a timeline of Sally's illnesses since childhood; maybe you will be as baffled as we are about how a lot of NHS doctors haven't linked it all together!

Baby years - Tested for Coeliac disease, belly button hernia
14-16 -undiagnosed illness. Lots of tests....2 years of sporadic school non attendance due to extreme fatigue, feeling fluey, nausea
18 - diagnosed with Hypermobility Syndrome - joints had become very painful
24 - Generally unwell, skin rashes, swollen tongue, started anti-candida diet
27 - Severe reactions to stress started - swollen tongue, heart palpitations, panic attacks -issued with an Epi-pen when reaction very severe.
30 - Labyrinthitis ear infection - lasted 6 weeks.......and then 2 weeks later..
30 - Start of all sensory migraines and M.E (Although it took over 2 years for her to be diagnosed)
31 - Allergies and intolerances started.
36 - Depression

All of the above can be found under the umbrella of M.E.

Patch has told Foggy that Sally has always been a bit sickly and 'a delicate little flower'. None of us realised that everything could be linked together. So, Sally isn't just raising awareness for others; this campaign is helping her get her head around why she has always been 'not quite right'.

Foggy has attached a link for Hypermobility Syndrome. It lists symptoms and causes etc. What it doesn't mention is the crazy spine-tingling sensation that is extremely disconcerting and causes Sally to wriggle about when she has been sitting for too long!

http://www.nhs.uk/Conditions/Joint-hypermobility/Pages/Symptoms.aspx

Sally had physiotherapy when she was 18 to help with the Hypermobility Syndrome. It didn't really help but it did temporarily help with posture etc. At the grand old age of 37 she now sees a Chiropractor who helps to 'reset' her joints. Her neck is particularly mobile and that causes a lot of discomfort.

Foggy snogs xxxx