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Sunday, 22 October 2017

Differences between Fibromyalgia and ME/CFS

Hello!

Sally is going to attempt to write about the difference between Fibromyalgia and ME/CFS. The illnesses are very similar and often get confused...here goes! She has brain fog today so this could be interesting! Love Foggy xx

Hi,

Since Foggy started in 2014, I have made no secret of the fact that biology is not my strongest subject. I always explain medical stuff as if I was having a conversation in a pub. Jargon free and simple! 

The cause of this blog was an interesting conversation my mum had at a doctor's appointment earlier this week. She was talking to staff about my Unrest screening and was explaining that I had ME/CFS myself...blah blah blah. She told me about the conversation when she got home. The bit that interested me was when the staff said this:

' ME/CFS? That's what Lady Gaga has isn't it? Well done her for being an
advocate of the illness'.

See?

Two things concerned me.
1. NHS staff don't know the difference between ME/CFS and Fibromyalgia
2. Lady Gaga 'coming out' may add to our issues of getting people to understand ME/CFS.

The two illnesses are exceptionally similar. But, from what I can make out, Fibromyalgia sufferers do not suffer from Post Exertion Malaise. This means that exercise is part of their 'treatment'. This could be why many ME/CFS sufferers are advised to exercise to manage their symptoms. Anyone who keeps up with our political fight will know that Graded Exercise Therapy (GET) has been slammed for causing symptoms to dramatically worsen in ME/CFS patients.

Many people have been diagnosed with both ME/CFS AND Fibromyalgia. My foggy brain can't understand how you can have both at the same time. If one benefits from exercise and the other worsens. If anyone would like to comment and explain that to me I would be grateful - JARGON FREE though please!

One thing is for certain, Lady Gaga definitely, 100%, cannot have even a smidge of ME/CFS.  She would not be able to perform those magnificent dance routines if she had our illness. I am yet to watch her documentary Five Foot Two but can say that Post Exertion Malaise would wipe her out 24-48 hours later. You cannot push through pain/fatigue with ME/CFS. That said, I am not down playing Fibromyalgia, I understand that pain, and fatigue-wise it is just as life destroying as ME/CFS.

There have been rumours in the medical world that ME/CFS  and Fibromyalgia could possibly be the same illness. I can't see how that can be. Yes, they are both chronic illnesses with many of the same symptoms but there are also distinct differences.

I think the sooner the healthcare professions see that exercise is good for one but not the other the better!

I hope that helped to clear up some confusion....I hope I haven't added to it!

Here are some links that you might find helpful.

www.fmauk.org - What is Fibromyalgia?

NHS Choices - Graded Exercise Therapy

Love,

Sally xxxx

Don't forget to donate and help Foggy to raise funds for ME/CFS research. Donate via Foggy's Fund. Thank you x

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


Saturday, 23 September 2017

Brand Annual Event - Marketing Help Needed.

Hi!

Foggy is on his way back from Gibraltar and will be handed to his next sitter Kat later today. He is off to California/Las Vegas next week! There is a slight chance that he will be able to meet Goofy too...paws crossed!

I was relaxing this morning, catching up on my trashy mags and TV. I was also looking for inspiration for the next blog. I came across THIS advert in Glamour magazine. I've known about 'Jeans for Genes' day for years and used to take part in the annual event. It's good to see that it is still
taking place. It got me thinking about all of the other causes that hold branded events that are easily identifiable. Breast cancer - Pink/Race for Life, Dementia - Moonlight Walks, to name a couple. M.E doesn't have that. Yes, we have the annual awareness day on May 12 but that is now an umbrella for a lot of chronic illnesses too. The colour blue is also used by a lot of illnesses and so it is now not immediately clear which cause is being represented by blue ribbons. This year at Emmys blue ribbons showed support against discrimination in the arts (I think). The meaning has been blurred and expanded beyond its original use.

With this in mind, I am starting to think about a M.E or Foggy specific annual event. It would have to be fun and raise awareness of M.E as a sole entity. Go soggy for Foggy?.....Just a thought! We would also benefit greatly from having a well-known personality as our champion. Fibro now has Lady Gaga and Lupus has Selena Gomez.  M.E doesn't have a celebrity that is happy to 'endorse' the cause. We need a face to plaster over magazine adverts (provided we can pay for the ad!) that people can identify with. Email me with any thoughts you have about this (mefoggydog@gmail.com).

I need YOUR help. Please get in touch if you have a marketing background and can help me to create something new and exciting. I make no money out of Foggy and so I can't pay you, but if you would like to get a warm fuzzy feeling from the knowledge that volunteering for Foggy helps 17 million people globally, get in touch!

Love,

Sally
(and Foggy OBVIOUSLY)

p.s. Apologies if my words are a bit jumbled today. A 30-minute walk wiped me out earlier and my brain is only just recovering!

Monday, 18 September 2017

Brain Fog

Morning!

So, ME Foggy Dog got its name because of the ME symptom brain fog. That feeling of having to get thoughts through a cotton wool brain before being able to do anything with them. Just writing this blog is proving to be an effort today. Apologies if it is just waffle!

Some days, I could be asked what my age is and I wouldn't have a blooming clue! As I mentioned in an old blog post, my mum and I actually counted back the years on our fingers a few years ago as neither of us could remember how old I was!

As you probably know by now, I now run my own fledgling business from home. I get in a pickle fairly regularly, luckily I work alone so no one else realises that I have no clue what I am doing...oh bum...I've told you all now! Some days, I just sit and stare at my filing cabinet for a few minutes.
'Hide and Seek'
Trying to remember what work I need to be getting on with, or why I came to the other end of the dining room where my desk is! Us M.E peeps also suffer from poor memory issues but brain fog is slightly different. It's almost as if your brain knows what you need to be doing but it's running 2 minutes behind where it should be! I know that being the other side of a M.E affected encounter can be very frustrating as we flounder for words or actions that are required. Unfortunately, non-ME peeps are not mind-readers!

I am a people-pleaser. I worry that other people think I am stupid because I can't think straight! I find myself explaining about my M.E so they realise it's a health thing and not lack of intelligence. Why do I feel the need to do that?! Well, we all know that the reason M.E folk talk about their M.E ALL THE TIME is that it is an invisible illness. If we don't vocalise about it, no one would know that we are struggling.

Brain fog is always exceptionally bad at supermarket checkouts. Right when the cashier needs me to know whether I have a car park ticket, have bags, have a store points card or if I need help with packing. Normally, I just stand there...mute....while I struggle to answer their questions! I usually put items in the wrong bags (I shop with my Dad who is slightly anally retentive when it comes to packing shopping...hence the 'wrong bag'), forget to take my card, trip over the trolley wheels...etc etc...you get the idea. My brain kinda gets confused and causes me to become clumsy (probably why stairs and I have a bad relationship!). I can't judge distances or environment dimensions.

It's all fun and games isn't it?!

Love

Sally xxxx
(and Foggy OBVIOUSLY)

P.S.... Foggy is having a great time on board the Queen Elizabeth. The photo shows him playing 'Hide and seek' with Lizz and Hazel (Elektra Violin duo) this week.

Thursday, 14 September 2017

Unrest

Morning All,

Foggy, lucky moo, is starting his week-long cruise on the Cunard Liner- the Queen Elizabeth today. He is going to touch his paws down in Sicily, Corfu, Dubrovnik, Split, Venice and the Messina Straits. Loads of mileage! Whoop!

While he is away I am working hard promoting my screening of Unrest on November 16th in Portsmouth. All information about the event can be found on mefoggydog.org. I felt I should write this blog as I am not sure some people know what to expect from the film. It has been hyped up by the M.E community, rightly so, but I feel that I should clarify that it is not a medical training video. It is not an A.B.C account of what M.E is.

It is a story. A love story. A love story between two people who are very much in love. One of those people has severe M.E. Yes, it is a documentary and everything you see on screen is factual but it is not rammed full of M.E clinical data or information.

Let me clarify, I have not seen the film yet. I have read a number of reviews and every reviewer has pointed out that it is a wonderful, visual, powerful film that may not meet the expectations of some M.E sufferers who are hoping that it will address some of the political rubbish that comes with M.E. I
*Foggy* I'm flying!!!
am glad that it isn't a hit you around the head with a bat, political blame-game movie. If it was, the M.E community wouldn't get much engagement with the wider public. I believe that Jen Brea is of the same mindset as me. Storytelling works. It draws people in and creates empathy and awareness. It creates an interest in people that may not know anything about M.E and could point them towards further learning and understanding.

On day one of being Foggy's P.A, I decided to avoid the political-ness that surrounds M.E. Personally, I don't read anything that is ranty or political. All that does is alienate people and won't lead to progress. Yes, I'm angry. I just choose to be outwardly positive and forward-thinking in the hope that it leads to progress. So, I built a story. Foggy's life story. He had a 'birth', he has a best friend, he has Team Foggy and I created a character who loves flying, has an ego, and loves cuppa teas (milk 2 sugars). I tell the M.E experience from a human perspective. I chose to run awareness content alongside that. So I avoided strong-arm tactics in terms of awareness but gently put nuggets of M.E info into followers minds as they followed Foggy's exploits. Videoing myself looking rubbish with a croaky voice is kinda the norm now. I might be verbalising about Foggy's latest exploits but how I LOOK is also telling a story. We don't have to be fact, fact, fact to get the message across. Visual representation of the illness is powerful...just as it is.

Think of Unrest in the same way as Philadelphia in the 80s. It was the story of a HIV/AIDS sufferer. There were no lectures, no scientists talking to cameras (Unrest has a bit of that). But, it was groundbreaking in terms of bringing the worlds attention to the HIV/AIDS issue. Philadelphia was a drama and not a documentary but the storytelling method is the same.

Please come along to the screening if you are able to. It will certainly be eye-opening for many in the audience.

Love Sally 
and Foggy (OBVIOUSLY)
xxx

Please donate via mefoggydog.org - All money raised goes to M.E research. Thank you x

Monday, 11 September 2017

M.E Pain - Describing the Indescribable

Hi,

One subject that I am unable to talk about is that of M.E pain. It isn't something I have any experience of....well, apart from a new development in the form of constant sharp pain in my little and fourth toes on my left foot ( POSSIBLY M.E related). This new pain does not make me an expert in M.E pain or how to manage it though! Anyway, earlier this week I was speaking to Ryn, a friend who I originally met through Foggy (she wrote a blog for Foggy during the first World Tour and Foggy rode her husband's motorbike...bucket list!!) but who has gone on to become a true friend and confidante. I have discovered that Ryn is the perfect person to go to for love-life advice...she is determined to help me 'see the light' and to convince me that my 'ideal man' is out there somewhere. Yeah yeah. Anyway, back to pain.... I asked Ryn if she could write about her own personal experience of M.E pain. As I have said before, there isn't a one type fits all description for any M.E symptom/experience, but this is hers. 

Me and my M.E / C.F.S  pain.

My pain is like varying levels of flu-like aches and pains which have been constant since I was G.P diagnosed with P.V.F.S February 2014 and later, a consultant confirmed a diagnosis of M.E/C.F.S./P.V.F.S  September 2014.

It is mainly joint and muscular pain and includes inflamed glands in my throat, armpits and groin. My pains are from my head to the tips of my fingers and toes. Sometimes it feels so
overwhelming and never-ending, I can’t help but give in to self-pity, tears and frustration.  But so what? A good cry does me good! Thankfully, ways of coping with my pain have come to me with the support and ideas of people close to me and from the twenty years I worked in the health care profession.    

When I can, I‘ll use ‘distraction’ as a way of dealing with the pain.  I’ll read my kindle (it’s back-lit so it's perfect for my being light sensitive as I can adjust its light), or watch t.v etc.  Short visits from family and friends help, as does using social media…. when my head is clear enough from brain fog lol.   Feeling isolated doesn’t help my pain management. I generally take four pain relief tablets at a time, 2 x 30/500 Co-Codamol and 2 x 200mg Meptazinol – although together they can take the edge off the pain, it isn’t always enough.   At its worse, the pain down my spine radiates outwards.  I take my pain relief tablets and my husband rubs ‘Deep Heat’ into my back for me. As gentle as he can be, his touch / the application of the cream hurts me even more until it’s done, then I can rest and hopefully sleep the worst of the pain away.

Hot water bottles can be a true comfort to my joint and muscle pains.  I can’t make them up myself but if no one is there to help, I have a longer than average wheat bag (from Boots Chemist) which I can now often manage to heat in the microwave.  When I lay in bed (often on my side as easier breathing being Asthmatic), I use a pillow between my legs which takes the pressure and discomfort off my knees and ankles when they touch, skin to skin.   A ‘hot as I can handle it’ bubble bath is helpful too - I use a bath chair so can’t fully lay down and relax under the water but just to get the heat to my legs and hips seems to work wonders for them.   I use ‘Infa-care’ or ‘Sanex’ bubbles as are gentle to my skin.   A light weight blanket/shawl wrapped around my shoulders or one covering my hips to my toes helps ease my pain too. I believe it’s the warmth they generate that alleviates pain.  In bed, when my legs and feet are cold and painful, I use an incontinence sheet under the bed sheet, under my lower body.  They are plastic one side and quilted absorbent paper on the other.  The heat builds up quickly and is a more gentle heat than a hot water bottle (B&M sell ‘puppy pads’ which work the same as incontinence sheets and a fraction of the cost).

My pain levels dictate what I can do and when. I can't manage personal care as and when I use to or get out of bed when I'd like to. Today, it's been a couple hours at least since I've been awake but my pain reduced enough that I've only just managed my shower - still using a shower chair as the act of showering is still exhausting and my balance not great! Pain levels do control what I do and when, 24/7.

I’ve always said ‘I don’t do pain’, maybe I have a ridiculously low pain threshold, I don’t know.  But it’s amazing the levels of pain you learn to live with because you have no choice and I will do/take what I need to help my quality of life. In the past, pain has knocked me mentally and emotionally sideways so I try not to suffer in silence anymore…..it really isn’t healthy. Sharing my pain (yes really!) has allowed others to offer me their support and own ideas on how to get through it, some of those ideas have worked for me so I’m very happy to be able to share them with you too J    Please don’t suffer alone.

Ryn xx

Saturday, 9 September 2017

Fundraising

Hi,

I have always judged Foggy's success on the amount of money raised but that is going to change. I had an epiphany this week. All M.E fundraising efforts are asking for donations from the same M.E community pool. I fully appreciate that times are hard and that many M.E families are barely getting by on disability benefits. I'm sure we can all think of at least 15 M.E fundraising efforts currently asking for donations. People with little money can't support them all. I get that.

Without doing a statistical study, I would guess that 15% of Foggy's donations since Foggy's birth have come from non-sufferers. The rest have all come from the M.E community. I include carers and support networks within the M.E community. 85% has come from people who have personal contact with the illness. In fact, Foggy's first World Tour in 2014-15 was greatly helped by very generous donations from the family of one severe M.E sufferer. You know who you are and if you are reading this I am so, so grateful for your support. £300 ish was raised on Foggy's launch night. So, since then I have raised just over £200...that was 2 months ago. Heart-felt thanks to each and every person who has ever donated to Foggy's fund...£1 is just as important as £1000.

My brain can't compute why, when Foggy has over 6000 followers on social media, so few people
*Foggy* Plane!! 
donate. Yes, there have been tears. Lots of tears. On average, I do around 3 hours of work on brand Foggy every day. This isn't a marathon, when people do 6 months of training and then fundraise in one 3 hr long event. This is a 365 days a year fundraising EPIC. Some days, I can't understand why I do what I do. Yes, I get wonderful feedback from sufferers and families. But, what are they praising me for? I feel like I have failed them. I haven't managed to raise as much research funding as I had expected to raise on day one. I have raised a lot of awareness but it is impossible to measure how much. Is it the 10 people I have spoken to this week face-to-face about M.E who are now aware or the people that I hope are paying attention online?

If you are following Foggy, you will have seen that I am using every opportunity to reach as many non-sufferers as I can. I am still trying my best to get on to the Ellen Show. 1 million+ Americans are affected by M.E/CFS and so going on the biggest TV chat show in the world will help to spread awareness in Ellen's home country. This week, I tried to get on Davina McCall's new show which talks about life stories. I have joined my local Rotary group (new online social group), this will help me to raise awareness to a much wider audience. My School of Social Entrepreneurs work will add to my ability to reach a hell of a lot more people. See? Work, work, work. I am doing as much as I can. Which is why I get so upset when donations just don't happen.

I think that raising awareness to a much wider audience will, in the long-term, lead to many more donations. Why would non-sufferers donate to something they don't understand? A key message to get across is that M.E does not discriminate. Without scaremongering, it could happen to anyone at any time. Maybe once Joe Public understand that, they will understand the desperate need for M.E research funding.

I have created a Go Raise account (Link) specifically with M.E sufferers in mind. I have so many emails from people saying they would love to donate but can't afford to. As I have said many times before, I completely understand that. However, if you shop online already - groceries, presents, Ebay, car maintenance etc etc, retailers that you use will donate for you (You just need to specify that MEFoggyDog is your chosen cause). It doesn't cost you a penny extra. 3000 retailers in the UK have signed up. If you use a PC, Go Raise gets added to your browser. You automatically get notified if the retailer you are using is part of the scheme. It also tells you how much of your transaction (%) will be donated. It is VERY EASY to set up. If you shop using your tablet or phone you will have to access Go Raise before you purchase anything and then access the retailer from the site. Please use the opportunity to add money to Foggy's fund. 5 people have signed up so far. I know, for sure, that at least 200 of you buy your groceries online for home delivery - because supermarkets are soooo bad for causing M.E symptoms to flare. We are missing the opportunity!

Foggy is currently travelling first class surrounded by bubbles (post/jiffy bag) and will be cruising around Europe on board the Queen Elizabeth Cunard liner next week. How exciting! It is possible to track his progress on the Q.E's website. I'll share the link on Tuesday. It'll be a bit like the Santa tracker! Thank you Lizz Lipscombe/Elektra for taking Foggy with you.

Love,

Sally xxx 

(I haven't checked spelling etc, apologies if it's rubbish...brain fog today)

Tuesday, 5 September 2017

Myalgic Encephalomyelitis.....what?!

Hi,

Shocking confession coming up......  When I started ME Foggy Dog I knew NOTHING about M.E. Well, nothing apart from my own personal symptoms, many of which had never been explained by doctors as being part of M.E. I went through seven years of suffering and not having a clue what was happening or what to expect. I had never sought help from any M.E charities or support groups because I didn't realise that M.E was a global issue or that the support was available if you knew where to look. In my defence, social media wasn't huge back in 2009 when I was finally diagnosed. I had been dealing with symptoms for so long on my own, with little support from healthcare professionals (CBT was their limit)  I just didn't look for help. I even had to Google what the M.E abbreviation stood for when I started Foggy, how ridiculous is that?!

When I had the idea to send a soft toy around the globe I figured it made sense to find a charity to fundraise for. I literally typed in M.E charity and the ME Association was at the top of the search
*Foggy* No....it's Foggy Dog!  (Foggy during his Ireland trip)
results. The word 'Association' made it seem to be the leading organisation so I chose them as the benefactor of my charity work. With hindsight, it could have been any one of a number of fabulous M.E charities in the UK. All M.E charities are working hard towards the same aims. Research, fundraising, awareness.

If I could start over with my illness, I think I would look for help as soon as I could. The constant process of new symptoms appearing often freaked me out! Having a support network would have been very helpful. New sufferers, I suggest you find your nearest support group (The ME Association will be able to point you in the right direction if you have no luck on Google).

Starting, and then managing, Foggy was a steep learning curve in terms of learning about M.E. I had previously had no idea that the individual conditions that had hindered my life up to that point could now be brought together under the same umbrella of M.E. These being Hypermobility, IBS, Migraines, light sensitivity, joint pain, poor memory, low blood pressure to name a few. I made it my mission to learn as much about M.E as I could. Thank you to all sufferers and support networks on YouTube, Twitter and Facebook. Through you, I now understand the weird, complex and individual nature of M.E. I 'get' the symptoms that I am not afflicted by. This knowledge makes me realise how 'lucky' I am to only have mild/moderate M.E. There are millions of people who have much worse symptoms than I do, and that drives me to do as much as I can for the M.E community. It's a massive frustration that my own M.E often gets in the way of helping as much as I would like to. So many ideas that I have for Foggy simply can't happen because of flagging energy levels, poor concentration or brain fog. I am a one-woman band and if I don't do it, it doesn't get done.

The fact that I wasn't an 'expert' at the beginning gives me hope that non-sufferers can also learn and become aware of the complexities of M.E. I keep my awareness raising simple and easy to understand so that the wider general public are able to understand our cause. Personally, I don't understand medical jargon that relates to my condition so how can I expect Joe Public to?

This is currently a period of change for ME Foggy Dog. I have successfully applied for a School of Social Entrepreneurs scheme. This means a grant (for Foggy's expenses) and one-years' worth of business training. All wonderful! BUT, I am slightly terrified. I want to throw myself in, embrace being a Social Entrepreneur and make massive progress for the M.E community. But, I have to keep reminding myself that I have M.E! I am going to be shown how to recruit people to help me with my workload so that is something to look forward to! It is a wonderful opportunity but one massive downside is the impact it will have on my energy levels. Lots and lots...and lots of pacing coming up!

Foggy news - He is back at Foggy HQ having just been on a cruise around Ireland on the P&O cruise ship Oriana. He is off travelling again on the 14th September. He will be going on a European cruise on the Queen Elizabeth! A lovely lady called Lizz is Foggy-sitting. She is a very talented violinist who is going to be performing on board during the trip. She is part of a group called Elektra Website. Foggy is a very lucky dog!

Love Sally
and Foggy OBVIOUSLY
xxxxx

Please donate via mefoggydog.org and help Foggy fund M.E research.

Monday, 28 August 2017

Technology and Self-Employment

Hi,

Foggy is cruising around Ireland on-board the P& O ship Oriana as I type this. He is in Dublin today, Linda will have her work cut out trying to stop him from indulging in pints of the black stuff! Linda has promised lots of photos of his exploits but, understandably, may have wifi issues on the ship. So, photos will be uploaded after their trip. Looking forward to seeing what he got up to!

I wrote this blog back in 2015 - http://mefoggydog.blogspot.co.uk/2015/07/buttons.html, in it I explain how technology, phones and social media, is draining. My life has changed significantly since then so I am going to explain how technology affects my life now.

I have my own business...wooo get me! (see wordsangel.co.uk)  I offer social media marketing and proofreading to businesses (and students).  Initially, on the surface, self-employment seems a good choice for someone with a chronic illness who struggles to work full time for employers. I work from home, set my own hours and can take as many rest breaks as I need. However, it also means I can't share my workload on my bad M.E days. The work still needs to be done. I am now the whole package: IT dept, finance, HR, social media, marketing etc etc. I LOVE it. But, there is a lot of screen work involved in my day to day life and it does catch up with me.

As I said in my 2015 blog, social media is incredibly draining. I do it because I love it, but it takes a phenomenal amount of energy. So, I post at least 5 times a day for each client. I have to research what to post, think about how to
convey the message, search for website URLs to post, design content, schedule posts etc. All of which require brain cells to be alive and kicking! I am finding that by 2pm every day, I have to take a very long 'power nap'. I restart work in the evening after I have rested. 

It is tricky to explain what brain drain feels like but I'll give it a go. So, imagine you have an acorn sized 'hub' in the centre of your brain. When it is working correctly you can't feel it. But, as time goes on, with lots of looking at blue-lit screens, it feels like the acorn is throbbing and causing waves within your brain. The acorn becomes painful and starts to cause puffy/painful glands, a sore throat, slurred speech, headache and neck pain. It becomes exceptionally difficult to process thoughts and body functions get slower and slower. It is 100% impossible to push through. My body is telling me to stop. I can't ignore it as I am grinding to a halt whether I want to or not.

I dream of having a phone with buttons again, but know that is impossible now. I am on call 24/7 online. I now have 10 different social media accounts linked to my phone. I have set my phone settings to have a minimum amount of alerts, otherwise I think I would go slightly potty! But, I still have alerts through every 5 minutes or so. In theory, this is great because it means I am good at my job! But, when I have been hit by a tsunami of M.E-ness...it's not so good. I have become very good at turning my phone off at 9pm though. Thus giving myself an hour to wind down as much as possible before bed at 10pm. I also try not to do client work post-6pm. Because that work pays my bills it is done first thing in the morning when I have the most energy. My own business and Foggy gets done later in the day. Energy levels dictate my daily routine and work schedule. If I have a networking event to go to, usually 6pm-8.30pm, I have to restrict activities for a couple of days before and meticulously plan my workload so that I have the energy to schmooze with other business people effectively. As we all know, I know, to the hour, that my M.E payback will hit 2 days after the networking event so plan my workload accordingly.

There are perks to being self-employed but be warned the workload can be overwhelming. Being able to rest regularly and not having to fit in with someone else's timetable is worth its weight in gold though.

Love,

Sally (and Foggy OBVIOUSLY)

Saturday, 26 August 2017

Question

Hi,

So, I asked Foggy's Followers to send questions for me to answer in a blog. They could be about M.E/CFS, Foggy's campaign, or about me personally. I'm an open book so happy to answer whatever is thrown at me. I received a question from Megan.Rose06 on Instagram. She asked:

When were you diagnosed with M.E and how long did it take to be diagnosed?

This is a tricky one to answer as I have actually had M.E twice. I had M.E symptoms initially when I was in secondary school. I was aged 13 (ish) and it
was during my 'options' years. I missed 18 months of school, had dozens and dozens of tests but never received a diagnosis. Then one day, it had gone...I was better.

The second round of M.E started 2 weeks after my 30th birthday. It started shortly after an ear infection (Labyrinthitis). It took 3-4 years to get a diagnosis. I wasn't taken seriously and my diagnosis came about in a conversation with a locum GP that went something like this...' You have M.E, but don't worry about it'. So far, I have had this bout of M.E for 10 years and the only treatment/management support I have ever received is CBT. I go through periods of 'remission', where I have a few months with more energy and can push myself to achieve more on a daily basis. But, I haven't had a period of remission for at least 3 years now.

I hope that answers the question. Any more? Contact me via mefoggydog.org anytime.

Love,

Sally xx

Wednesday, 23 August 2017

Inconsistency

Hello,

Sometimes, reading other people's accounts of their M.E experience is like reading a foreign language. In the 10 years since my diagnosis, I have only ever received a CBT referral. Despite having a wide range of symptoms, for which there are specialists, I have never been referred. So
when other M.E sufferers talk about appointments with neurologists, endocrinologists, gastro-people, physiotherapists, etc etc.... I find myself wondering why their experience is so different to mine. My orthostatic intolerance has never been addressed by GPs, nor my light sensitivity, IBS or hearing issues. It's all just lumped together under the label of untreatable M.E.

Sometimes, these other sufferers live in other countries and so that explains why their healthcare differs. However, I am increasingly finding that UK sufferers are treated differently depending on their postcode or whether they are treated by the NHS or privately. Some take part in medical trials or drug trials, others don't get the opportunity. I can fully understand why this breeds resentment within the M.E community.

It's all a bit of a mess really isn't it? Not only is there no treatment for M.E but there isn't even consistency when trying to deal with individual symptoms of the condition.

There are three things that we are now striving for....treatment, awareness, and consistency!

Love,

Sally (and Foggy OBVIOUSLY)

Friday, 18 August 2017

'Of course that happens...it's your M.E'

Hi,

How many of us have visited chiropractors, dentists, physios etc and been fobbed off with 'Of course that happens, it's your M.E'? It's happened to me hundreds of times!

I'm writing this blog because it seems bizarre to me that we are always being told that the healthcare profession either doesn't believe it's a real illness OR that they don't understand it. And yet, it's the first thing that springs to their minds when offering a possible diagnosis for a random ailment.

For example, every couple of months I have painful lesions (2 cms long - like little worms) on the roof of my mouth. They baffled
my usual dentists so I was referred to a gum specialist. He had a look and said it was because of my M.E. HOWEVER, a few weeks ago, I saw a Facebook article that had been commented on by Dr Charles Shepherd (ME Association) and he said M.E is not the cause for any mouth related stuff. News to me! So now I am wondering what else is up?! What if there is an other ailment that needs treatment but has been neglected because it has been brushed off as 'just an M.E thing?' I am using common sense though and I think they are probably a bit like a cold sore but inside my mouth, they flare up when I am run down so it kinda makes sense.

I just wish they would hold their hands up and admit that they don't have a clue what our random symptom is, but do as much as they can to find out what it is! Making stuff up doesn't help!

Love

Sally (and Foggy obviously) xxx

Thursday, 17 August 2017

Dentist - Death by Lighting!

Hi,

Foggy is currently in Disneyland and is still looking for Goofy, his doggy idol. he is away for another week or so. In his absence, I thought I'd write this blog post.

This post is about a visit to my dentist yesterday, I felt fine when I arrived at the dental surgery but half an hour of sitting in a waiting room that was so bright it was as if it had come from the film Close Encounters of the Third Kind, I felt as if my spine was soft spaghetti and I could barely hold my head up. As the minutes ticked by I could feel my energy oozing out of my pores. My head felt so heavy I had to slump over, elbows on knees with my hands holding my head up.

After 30 minutes of light torture, my saviour, in the form of a dental nurse, came to rescue me. I explained why I was talking and walking slow and she was sympathetic as I joked I would lay in the seat, close my eyes and snooze while they worked. I was slurring my speech now and was struggling to explain the reason for my visit (mouth guard issue) to the dentist.
*Foggy* He has dark glasses on....grrrrrr

BOOM..... the overhead light was turned on, 2 ft from my face and straight into my eyes. I
understand why they need light to see into the deep crevices of mouths but.....why have they not twigged that some patients might need dark glasses to counteract the harsh lighting? I needed to keep my eyes open to communicate effectively with the dentist and so my eyes were being assaulted! My glands were enlarging at a rate of knots and I felt as if my weary body was now melting into the dentist chair. My body was trying to regulate itself and was fighting against my light sensitivity.

By the time I walked through Reception and exited the building, I felt like vapour. All this by 9.50am thanks to the over-use of harsh fluorescent lighting. The reception area has a glass wall, high ceiling and is light and airy. There is no need for 20 or so bright lights! Natural light with a bit of additional lighting should be plenty.

I am happy to help dental practices in an advisory capacity to make sure they are doing all they can to make dental treatment easily accessible and a non-challenging experience for all!

Love,

Sally (and Foggy obviously) xxxx

Apologies if this blog is a bit waffley - brain fog today xxx

Sunday, 13 August 2017

Invisible Disability

Apologies, I have had to take my eye off the M.E ball for the past 6 days.  I have been doing the bare minimum for Foggy and I feel bad for it. As you may or may not be aware, my dad has been exceptionally ill since Monday and his diagnosis required ambulances, A & E and a hospital stay. He is now medicating at home and is on the mend so hopefully, I can get back to normal now! My mum doesn't drive so I have been the taxi driver taking him to and from various hospitals for tests, appointments and overnight stays. That, when added to the stress of having an ill loved one, has wiped me out! Since 11 am yesterday, I have slept for 15 hours.....that is a record for me! Do I feel refreshed? As if!

Anyway, I thought I would write about an experience I had in A & E on Wednesday evening. I drove
*Foggy* Where is Goofy?!
up to the hospital at 9.30 pm and we were whisked straight into A & E (we had been called and asked to go up ASAP due to blood results). Whilst my dad was being taken care of my mum and I were shown the seating area. Each patient is allocated 2 seats. One for the patient and one for a visitor. I am 100% appreciative that priority should be given to patients and so seating for visitors is not a top priority. That is not what this blog is about. This blog is about M.E being an invisible disability.

In between tests, and being prodded and poked, my Dad came and sat with us in the seating area. Now, I've already said that there were only 2 seats.  My mum uses a walking stick. She doesn't have a disability but she does have joint pain and uses the stick for balance. I don't have a walking stick.

I was stood for around 20 minutes. I couldn't pull over a chair as beds were being wheeled past that area and space was limited. I was dying on the inside! My head felt like it was going to hit the floor at some point and my spine felt floppy. My mum offered to give up her seat (cue funny looks from the people in the bay next to us). Within 1 minute....yes...1 minute, the people next to us moved along to free up a seat for my mum...who is NOT disabled. I could feel the disapproval from the seat-movers coming in my direction. Could I be bothered to explain that I have M.E, that it is a real condition and that it is a disability? No.

Let me clarify - My mum is in her late 60s and I wanted her to be sat down but in that situation, who would benefit the most from the seat? I would have to drive us home and so needed to preserve energy. As we moved to other areas, more standing was required as there was no seating available. AGAIN, I understand that in an area where crash teams are usually present, seating for visitors is not a priority! I ended up leaning on a sink to try and stay upright! My words became more and more slurred and we had to leave early (12.30 am) to make sure I was safe to drive. My Dad was happy in the knowledge that he was being taken up to a ward for an overnight stay so I didn't feel TOO bad for leaving him!

This is the second seat incident in about a month. The other was during our trip to Winchester. My dad had driven us from Portsmouth to Winchester as he understood that I needed as much energy as possible for my important Foggy-related meeting. We got on the Park and Ride bus to go into the city centre.  My Mum could sit in the 'limited mobility' seating but I couldn't. Foggy was not impressed - he wondered why his disabled P.A was not eligible for special seating even though moving around is difficult due to energy and not pain.

I am actually considering taking some kind of prop on similar occasions. Purely because I don't want to experience the stigma surrounding invisible disabilities. I don't think walking sticks or other mobility aides are a badge of honour or anything but at least they are a visible indicator of impairment.

Love,
Sally (and Foggy obviously)

p.s Foggy is currently in Orlando on the hunt for Goofy!
p.p.s...Excluding this latest trip - his mileage stands at 9010 miles!