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Thursday, 19 October 2017

*Foggy* Sally is not the most patient person on the planet.....

Hi,

I wanted to write this blog to show how much stuff is going on at the moment. As yet, it's all a waiting game. I am not a very patient person and I'm a bit of a go-getter. Moving at a glacial pace, organisationally speaking, does my head in!

To date, 1505 people have looked at Foggy's Unrest ticket booking page and yet 59 people are coming. I don't know why this is. I want to sell out (200 seats) ASAP so I don't have to keep promoting it. It is overshadowing the advocacy work I am doing myself. 

I have been pestering my local MPs to come to the screening to no avail. They are all either away at conferences, busy or going to try and catch the screening at Parliament. 

I've had no reply from the Ellen Degeneres TV show. For those of you who have missed my efforts
Foggy met Chris in Portugal this week
on social media (I also wrote a blog), I want to get Foggy on that show because it is the biggest show on telly. I want M.E sufferers to see Foggy on there and know that we are working hard for them. I'll let you know if I have any luck.

I've also had no reply from Eastenders (I wrote a blog about that too). Again, I'll let you know if that happens.

The Winchester training thing (That I can't/don't want to talk about) is still being sorted and I am feeling a bit stuck with that. It is ALL for the benefit of Foggy and will help us to grow and improve.

Donations are very slow. If you CAN donate please do. We desperately need ME research. You can donate via Foggy's Just Giving page. Thank you if you have already donated xxx

I try to do things that are outside of the box, in the hope that doing something out of the ordinary will bring Foggy and the M.E plight to a wider audience. I'll keep plodding on but I am feeling exceptionally frustrated at the moment. 

Kayleigh is taking part in the Great South Run this Sunday. Foggy and I will be cheering from the sidelines on Southsea seafront (we'll be near the Tenth Hole if you are in the vicinity and want to tag along). If you would like to donate and make her efforts worthwhile, you can donate via Kayleighs Just Giving page. Kayleigh's page is part of Team Foggy and her total will be added to Foggy's Fund once she has completed the run.

Foggy is off to Cuba next week! Squeeeee!!

Love,

Sally
and Foggy OBVIOUSLY xxx


Sunday, 15 October 2017

Foggy's Current Itinerary

Hi!

Team Foggy has been really pleased with the trips that have been booked in so far, mileage is being clocked up nicely. Foggy has currently travelled 37,917 miles...WOW!

Here are details of what is booked into his diary at the moment. Please do get in touch if you can help to fill any gaps.

NOW - 17th October - PORTUGAL
20th October - 15th November - CUBA
17th November - 21st November - MILAN
24th November - 5th December - YORK, UK.
GAP
15th December - 31st December - THAILAND
HUGE GAP
23rd March - 6th April - NEPAL  (Dates unconfirmed)
GAP
10th May - 22nd may - ITALY
GAP 
Last day is 4th July 2018.

I have allowed postage time either side of each trip.

Don't forget, Foggy also has a bucket list. If you can help with anything on his list please get in touch! 

ME Foggy Dog is on a mission to raise £10k for the M.E Association for research. Don't forget to donate and make Foggy's homesickness worthwhile! Please donate via mefoggydog.org. Thank you.

Love 

Sally
and Foggy OBVIOUSLY xxxxxx

Wednesday, 11 October 2017

Sleep Issues and M.E

Hello!

Sally is being weird this week. Her sleep pattern is all over the place. Over the past week, her numbers of hours of sleep at night has gone: 8, 3, 6. 10, 3, 8, to 5 hrs tonight. Crackers! I have told her to write a blog about it...here it is.....

Ugh (translated that means hi),

It is currently 03.28 on Thursday morning. 

I had been laying in bed for the past hour or so...WIDE AWAKE but determined to not get up.

Sleep issues are one of the more surprising elements of having M.E. You would think that an illness that is also known as Chronic Fatigue Syndrome (CFS), would entail sleeping A LOT or at least sleeping a minimum amount of hours (8 is pretty standard...isn't it?). However, sleep disturbance and unrefreshing sleep are symptoms of this crazy illness. 

Many friends say to me that my sleep issues are the reasons why I am tired all of the time. No, it's because I have an illness. Sleep problems are just one symptom of it. It wouldn't matter if I slept like a log for 8 hours, I would still feel unrefreshed and as if I hadn't slept for even 5 minutes. I am kind of
used to functioning on auto-pilot. I've had nearly 11 years practice of feeling like a sleep-deprived zombie! Some days, like today, are worse than others. I've had a week of really topsy-turvy sleep and so my head and body haven't a clue what they are supposed to be doing!

Like 'normal people', I have stuff on my mind. That additional stress has added to my sleep problems but isn't the main cause. 'Normal life' just adds to the usual rubbish.

Sleep issues for M.E peeps are wide-ranging. Some people do sleep, and sleep, and sleep....endlessly and unrefreshingly (Fatigue is probably added to by medication for pain and other symptoms). Others have the same kind of pattern as me. Whatever the pattern, M.E means that even though we feel like we could sleep forever, many of us can't.

It was Mental Health Awareness Day this week, I am open about the fact that I have PTSD and depression. I don't believe it is anything to be ashamed of but appreciate that many feel the stigma. It made me remember what my GP said when he prescribed me Fluoxetine for depression. I was worried that the side-effect of 'may cause fatigue' would make my M.E fatigue even worse. He said (paraphrasing) 'would you rather have suicidal thoughts or be a bit more sleepy?'. Good point! Since taking the drug, I have found that I feel more tired but like he said, I guess I have to weigh up the pros and cons. You would think that taking a drug that causes fatigue would mean I would sleep more...nope! If only! If anything, it has thrown my sleep pattern out of whack, my body doesn't seem to know when it is supposed to be awake or asleep. 

Since doing CBT 10 years ago, I stick to regular bedtimes. I am, 95% of the time, in bed ready to go to sleep at 10.15pm. I'm usually asleep within about half an hour. My problem is that I simply can't stay asleep and have a habit of waking up at 3am. On the rare occasion that I find myself up and about at 11pm, I am excited! It's like being in a another world! Oooh, so this is what 'normal' people do post 10pm?! WOW! I usually feel like a bit of a rebel for daring to be awake past my bedtime. My life is so rock and roll!

Love

Sally xx
and Foggy OBVIOUSLY xxxx

Monday, 9 October 2017

M.E Online Community

Morning,

Before creating ME Foggy Dog I was clueless about the illness, despite being a sufferer myself. After 3 years of tests and being given the run-around, I was given the label I had been seeking...I finally knew what was wrong with me!!  A locum had been so blase about the illness that I didn't appreciate the seriousness of the diagnosis. I was told there was no treatment apart from the therapy sessions I was being referred for (CBT in my case). My naive, brain-fogged brain assumed that as there was no major treatment, it couldn't be a major illness....  So for the next 4 years, I struggled on. Desperate for anyone to realise that I wasn't just a little bit sleepy. Every month or so, a new symptom would appear. Every doctors appointment concluded with 'just put it down to your Chronic Fatigue Syndrome (Grrrrr)).

The idea for Foggy came about so randomly back in 2014. It only took a month to set up ME Foggy Dog. Time from the initial idea to the launch in a local cafe went by in a flash! I had no idea what was ahead but was braced for the adventure. I knew Foggy would be driven by social media but ha
d absolutely no idea that an online ME community already existed. I also didn't know it had its own hashtag! (#mecfs) I wish I had known about the community years earlier, I certainly would have benefited from the help, advice and support it offers.

This past week, I have met five mild sufferers who don't 'do' social media. They had never heard of Foggy, didn't know there was charity support available, and didn't know an online M.E community existed. These people all told me they felt forgotten about and isolated. I encouraged them to embrace social media as it offers much needed love and support. Three of them didn't know the difference between mild, moderate and severe M.E. That worried me. They simply called their condition chronic. It shows that M.E sufferers aren't told about their own condition by doctors, we all have to self-educate. Four of the people I met this week didn't know about pacing. Their GP had never mentioned therapy to them. Weirdly, we are always told not to Google diagnose, but with M.E it's the only way to find out what the heck is going on with our bodies. It is also weird that doctors are themselves looking at INACCURATE information online when dealing with ME/CFS patients.

There are many 'mild' M.E sufferers out there that have just got on with life (with great difficulty), and do what they can to get stuff done whilst feeling isolated and forgotten. I know this because that was me, I had no clue that there were 17 million people with my condition, all of us struggling with life; whatever the severity of our M.E symptoms. 

I am so thankful that I had a creative brain cell that was functioning normally back in 2014. I am proud to be able to raise awareness for our community and to bring us out into the light. 

Love

Sally xx
and Foggy OBVIOUSLY xxxx


Tuesday, 3 October 2017

Noise Sensitivity

Morning!

Foggy is in Las Vegas and Patch is currently in his favourite place surveying his empire (the garden). I'm going to take this opportunity to write a blog about something that happened over the weekend.

My Mum and I had decided to spend a quality afternoon together with a lunch at a nice restaurant and a trip to the cinema (We saw Victoria and Abdul). It was a half-full battery kind of day already but I chose to go anyway, mainly because the afternoon would be spent sitting down.

We had chosen to go to Casa Brasil, they offer a 95% gluten free menu so it was ultra appealing for me. We had booked a table online and were looking forward to a fab meal (Basically BBQ meat and all sorts of salad - love, love, love). We arrived and were met with a wall of sound. Both my mum and I contemplated leaving straight away. However, we took our seats and decided to give it a go regardless. Trying to get a table elsewhere would have been a nightmare. The food was fabulous and
the service was excellent. No complaints there. However, the volume of the 'background music' was set at exploding ear drum level. I couldn't hear a word my Mum was saying and she couldn't hear me either. The combination of my M.E noise sensitivity and my Mum's Tinnitus meant that it wasn't a pleasant experience. I could feel my energy levels flat-lining as my brain tried to overcome the noise assault. Having to shout was making my throat sore. The effort of straining to hear what my Mum was saying caused my glands to swell up and become painful. All diners were talking loudly over the music and so it became deafening as the restaurant got busier. It was 'Samba Sunday' and so I had been expecting music but not 'nightclub loud', music you have to shout over while you are eating! I would recommend that you only eat here when you don't want to talk/communicate with the people you are sat with! Their tag-line is 'Come hungry. Leave happy'....I'd change that to 'Come hungry. Leave with a headache'.

Bellies full with yummy food, we made our way across the complex to the Odeon cinema. My Mum and I have a habit of always taking ear defenders to cinemas as the sound is always too loud for us. Usually it blocks out the majority of over-loud volume. Not this time. My ears and brain were assaulted for 3 hours (adverts/trailers/film). We could even hear sound from the movie that was playing in the screen next door (I don't think they had planes and machine guns in Victorian Britain). I had to keep closing my eyes as my senses were being assaulted far too much for my brain to cope. Most M.E sufferers tend to avoid cinemas because of the sound volume. I am usually ok with ear defenders, I was disappointed that they didn't help on this occasion. Why on earth does the sound have to be that loud?! So many health conditions are affected by volume level it is ridiculous that the cinema doesn't consider that as a factor when setting the volume. M.E., Tinnitus, PTSD (loud bangs?!) and many others that my weary brain can't think of right now.

I got home and 'died'. I was absolutely wiped out. Thanks to our 'fun' afternoon, I woke up this morning feeling like I have been run over by a truck. It is two days later and this is payback. I really don't know if it was worth it! Day at home, working but pacing coming up.

Love,

Sally
and Foggy OBVIOUSLY
xxx

Please don't forget to donate.
Donate via mefoggydog.org
Thank you x


Friday, 29 September 2017

Open Letter to the Ellen Degeneres Show

Hi,

I have sent this letter via snail mail to Ellen's office in California.


Dear Ellen’s Team,

I am asking for your help. I am under no illusion that this letter will be seen by Ellen herself and so I am writing to you as Ellen’s representatives.

I am an advocate for and sufferer of Myalgic Encephalomyelitis (M.E). You will probably know it by its other name – Chronic Fatigue Syndrome (C.F.S). This October marks my 11-year M.E birthday! Not that it’s anything worth celebrating. Despite my own personal hardships, traumatic events, and ill health, I have made it my life mission to help those worse off than myself.

M.E/C.F.S affects 17 million people (very low estimate) worldwide. That figure includes at least 1 million Americans. M.E/C.F.S is the most common illness that no-one really knows about or understands.

I have been contacting you via Twitter though I’m sure my tweets get lost in the thousands you probably receive every day and so I have chosen snail mail to reach you now. I would love Foggy, my charity brand figure, to be on the Ellen Show. I have the following reasons for this:

-      -   I am a huge fan and watch most days when I am able. I was ecstatic when ITV2 started showing current episodes!

-      -   It is the biggest TV chat show in the world (I think)– I want to raise awareness in a big way – I can’t get much bigger! I would like to use your show as a platform to reach as many people as possible.

-       -   This is the most important reason. Many of Foggy’s Followers are bedbound. They write to me personally with their personal M.E stories. Every single American and Canadian M.E/CFS sufferer that I have been contacted by watches Ellen. They tell me it is usually the only time in their day when they turn their TV on and ‘enjoy life’. These people suffer from extreme light and noise sensitivity and so watching Ellen on TV is a HUGE deal. Ellen means so much to them. If I get Foggy onto your show then I am reaching out to those people. Those sufferers who believe they are forgotten about. I want them to know that I haven’t forgotten about them, that YOU haven’t forgotten about them.

Everybody knows somebody with M.E/CFS. It is an illness we should all know about. It does not discriminate regardless of age, race or gender. The youngest sufferer ever recorded was just 2 years old. The M.E ‘crisis’ is the equivalent to the HIV/AIDS epidemic of the 80s and yet trying to get people to engage and understand is a very difficult task. We face prejudice on a daily basis and many in the healthcare profession don’t even consider it a real illness.  I am managing to raise awareness one person at a time but need help to reach even further. We desperately need research, trying to get research funding is an ongoing issue. Advocates and fundraiser like me work hard to raise funding as most Governments don’t spend much money on researching M.E. THERE IS NO TREATMENT.

I would encourage you to watch the film Unrest, directed by Jen Brea. I will be holding a screening here in Portsmouth myself. This award-winning documentary shows the severest form of M.E/CFS in the form of a real-life love story. Well worth a watch. It is an American film and there are screenings all over the U.S.

Please take a look at mefoggydog.org to see what my work is all about. Foggy is a soft toy. Foggy is an AWESOME globetrotting adventurer. He was ‘born’ in 2014 and has raised over £8k for the ME Association in the UK. All money raised goes to M. E Research. Foggy is currently on his 2017-18 World Tour and is on a mission to raise £10k and travel 250,000 miles around the world spreading love and awareness. He is currently in California and has travelled around 30,000 miles so far. His current campaign ends in July 2018. An appearance on your show is on Foggy’s bucket list…please help to make his dreams come true!

What drives me to do it? One day I want someone in a white lab coat to tell me why I feel dreadful every single day.

I hope you can help.


Best wishes.

Tuesday, 26 September 2017

The M Word - Menopause

Hi,

Foggy wants to learn everything there is to know about M.E. I wrote about periods a couple of years back and so now, with my advancing years (I'm 41 in 2 weeks!! EEK), it seems appropriate to move on to the menopause. Sorry chaps, you might want to stop reading if you aren't in touch with your feminine side!

Early menopause has been a factor in my family health history for at least the past 2 generations. The women in my family started the menopause between the ages of 25-35. A hysterectomy was to blame for part of it but still, it was early menopause none the less. So, since the start of my 30s I have been braced for it to hit. Nothing yet, I am happy to report! I haven't had kids so that may be a factor...I am rubbish at biology so...I have no idea!

However, I think it is only right to highlight how the menopause affects M.E bodies. As I said in my periods blog (Hormones), any hormonal changes in our bodies bring about M.E flare-ups. Hormone changes
'The Change' - Get it? :)
are a blooming nightmare. I am usually wiped out for at least a week in the run up to 'coming on' and it makes my symptoms double in severity. With that in mind, I am certain that going through the menopause will be just as rubbish (If I haven't miraculously recovered by then.....I WISH!). I am not dreading it in terms of it being a sign that I am ageing, I am actually looking forward to my periods coming to an end! But, as something to worry about in M.E terms, it is definitely playing on my mind. I have no idea what to expect and so am hoping that I will merely deal with it as it hits. The M.E Association says this on their website:

Some 70% of women experience physical, gynaecological and psychological symptoms during the menopause – some of which are the same or similar to those found in ME/CFS. So it’s not surprising to find that the menopause can sometimes cause a significant flare up of ME.
If symptoms are similar to what I am experiencing already, should I just anticipate that they will worsen? Will I be feeling doubly rough for the whole month instead of just part of it? Who knows?! If any of Foggy's lady Followers have experienced the menopause and M.E medley would you consider writing him a blog? It can be anonymous if necessary.

I've found a couple of useful articles online. Have a read.
https://www.mesupport.co.uk/index.php?page=the-menopause-me
https://www.sciencedaily.com/releases/2015/02/150204075324.htm

Love Sally
(and Foggy OBVIOUSLY)

Please don't forget to donate via mefoggydog.org. Foggy snogs xx