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Saturday, 26 December 2015

House Concert!

Hi,

Foggy had the best seat in the house!
Foggy was in Belfast last week. He had been invited to attend a living room concert (you'll see why it's called that when you see the photos!) by Claire Thomson - one of Foggy's favourite supporters. Claire was doing her own fundraising efforts for the M.E Association and wanted to help promote Foggy's next campaign at the same time. Thank you very much for including him (me), I am very grateful.

Claire is a MASSIVE fan of a musician called Nick Howard (http://nickhowardmusic.com). He has just undertaken a number of 'Living Room' concerts for his fans across Europe. Claire was a very lucky lady and was given the opportunity to host one in her (actually, her parent's) house. Claire specified that she wanted any profits to go to the M.E
Reunited with 'Big Foggy'!
 Association. She sold tickets to family and friends and raised £400!! Well done Claire and Nick for helping to raise much-needed funds for a great charity.

I have posted the photos Claire/Claire's brother have kindly passed to me on Foggy's Pinterest page - click the link Pinterest page



There are now 19 days to go before Foggy's next campaign begins....exciting!

Love Sally xx





Saturday, 19 December 2015

Walking in a straight line!

Hi,

In the past couple of weeks, something I wasn't aware of has been highlighted to me by two men in my life. For years, I have known that I have very little spatial awareness, a lack of balance and a feeling of disequilibrium. However, when out and about I always believed that, although I felt off kilter, I was walking in a straight line. WRONG!

My dad constantly tells me I'm wobbling about all over the place but as he is the only person to ever say that to me it went in one ear and out the other (kids eh?!). I have recently made a new friend and we went on a short Christmas shopping trip. I was bumping into both him and my surroundings.
Apparently he watched me walk away from him at one point and I was veering to the left and looked unstable. Because inside my head my whole body feels off balance ALL OF THE TIME I am not aware of when other people can see it!

I am just happy to be able to walk from A to B without any kind of walking aid. I am slightly amused that I have finally found the reason for my constant clumsiness! I have to do a daily bruise count after bumping into things on an all too frequent basis. It's a bit like when I used to go swimming. I could swim 30 lengths of an Olympic sized pool. Yay me! It didn't make me a good swimmer though. My brain couldn't cope with the process of doing a proper breaststroke (like a frog). I did a kind of 'pat my head/rub my stomach' scenario. I did breaststroke arms and kicked my legs. It wasn't the most aesthetically pleasing stroke or the fastest. But, I was very happy to get from one end to the other without any drama!

The next campaign starts in less than a month's time. Please volunteer to either do a sporting challenge or to allow Foggy to join you watching a sporting event.

Love,

Sally xx

Monday, 14 December 2015

Post-Exertion Malaise ....shown in a picture!

Hello!

I am currently in Northern Ireland. While I am away doing some campaign awareness raising I asked Sally to write down exactly how her body feels after taking Patch for a 20 minute walk. Here goes....

Hi,

I am so used to just saying that I feel tired or can't feel my arms and legs properly I made a conscious effort to note down every symptom that I felt post-dog walk. So I sat in a chair and studied my own body from head to foot. I wrote it all down....in case I forgot how rubbish I felt! Please remember that I am a mild sufferer, Post-Exertion Malaise (PEM) is so much worse in people with worse M.E. than I have.


As you can see, P.E.M affects the whole body. As well as these symptoms, fatigue levels increase immensely and I experience a feeling of not being able to function.

PEM is the reason I have chosen Foggy Does Sport as the next campaign theme. It also seemed appropriate to highlight this element of M.E. as the Institute of Medicine have said M.E. should be renamed Systemic Exertion Intolerance Disease. The way our bodies react to exercise/movement are key to understanding the nature of the illness.

Love,

Sally (and Foggy)

Monday, 7 December 2015

Let the promotion begin!

Hello!

Well, I am finally out of my coma and stretching my paws ready for my next adventure. Sally wants to tell you all about being a 'radio star' last week :). Just in case I have Followers who aren't on social media, she is going to tell you what you missed.

I'm off to Belfast this week. A talented musician called Nick Howard is doing intimate concerts in his fan's houses and one of my Followers (Claire Thomson) is incredibly lucky to have him perform in  her parent's house. Here is his website for info - Nick Howard website Claire is donating profits to the ME Association and so is a sufferer AND fundraiser....Claire you are AMAZING xxx Massive Foggy snogs go to Nick too.  I know I am going to have a fab time with Claire...she is one of my biggest fans! Anyway...over to Sally xx

Hi,

So last week I did an early morning chat on the BBC Radio Solent Breakfast Show with Julian Clegg. It was an early start and I went 'on air' at 7.25am. I have added the link below so you can all listen to Foggy and Sally on the radio!  ( I start talking at the 54 minute point). I am hoping that the interview may lead to increased exposure of Foggy's quest and subsequently spread awareness further. I am now a 'Julian's People' person and will be giving regular updates on the radio show. So, it's all good :)
it. It is only on iPlayer for one month so hopefully you manage to catch it in time!

As I said on the radio I would like (non -sufferers) people to contact me asap to tell me if they can help with sporting challenges. Perhaps you run a sports club. do sports yourself or can take Foggy to a sporting event. Whatever, as long as it is sport related I would love to hear from you. Email mefoggydog@gmail.com.

I also did a You Tube clip telling you all about the next campaign. Here it is...Foggy Does Sport

Love,

Sally xx

Friday, 27 November 2015

Blatant Ignorance

*Foggy* Whoa....Sally has just got back from a short trip to the local shop and she is fuming! My tiny Foggy brain can't explain what has just happened so I'll let her explain! I can't wait to see you all again! I'll be back in January xx

Hello,

I am so angry and agitated. Perfect starting point for a blog post!

As you are all aware, I spent a whole year attempting to raise awareness of Myalgic Encephalomyelitis GLOBALLY. I was successful in educating a wide range of people. However, the people I encounter on a daily basis still don't have a clue.

I had just taken a break from working at home and taken a short walk to my local shop. On the way I bumped into an old family friend. Let's call her Lynn. She asked me how my new business was going and I said it was steadily building, but I need a part time job to be able to pay my bills. I told her that there don't seem to be many temp jobs around and that most temporary jobs at the moment are retail. I explained that I can't do retail as it involves standing for long periods of time or lifting/shifting stock, something I can't do. She said that at Christmas time there are lots of bar jobs available and why don't I just do that? I explained that I couldn't because of the standing for long periods of time. She told me to push through it. I said 'M.E. sufferers can't push through it, it's not how M.E. works'. Lynn replied, 'I've read up all about it, all they have to do is push through it and get
Me - educating
a positive attitude'. Apparently, if I 'put my mind to it' I can do any job. I was speechless. I could have pointed out to her that not only do I have M.E. but am a M.E. advocate and educate people on the true nature of M.E all the time. But I didn't. I didn't swear at her (I wanted to) or argue (I wanted to), I just let my very expressive facial features tell her what she could go and do!

Let me point out that 6 months ago Lynn didn't know what M.E was and said that she hadn't known there anything wrong with me. I think her idea of reading up on it was reading the Daily Mail's inaccurate reporting of the condition. I have spent 3 hours a day for the past 6 weeks looking for a small part time job to tide me over until I have built my multinational conglomerate. Unfortunately, I have been unable to find any work which suits my energy levels. I thought looking for a basic admin role with part time hours would be simple. I was so wrong. My willingness to work and frustration at not being able to find anything suitable completely contradicts the comments from Lynn. What is especially annoying is that she does not appreciate that I am currently working very hard setting up my business. I am not lazy.

I often give the impression that I don't encounter negativity regarding my health. I like to keep Foggy light, engaging and informative. Please don't be under the illusion that I don't have ignorance thrown in my direction on a regular basis. Ignorance from colleagues was a small factor in why I left my previous job. I constantly had 'the face' from a few members of staff. It was demoralising and made my working life extremely difficult. Maybe I should have worn a pretend plaster cast so people could see there was something wrong?

Unfortunately, the only people who are paying attention to raising awareness of Myalgic Encephalomyelitis are the people who like to learn new stuff and treat fellow human beings equally and with respect. I could spend a morning giving a public awareness event and be well received, and then pop into my local shop on the way home and be confronted by ignorance.  Ignorant people have no inclination to learn and just stick to their own beliefs and misconceptions. Incredibly frustrating but that is the way of the world.

Love,

Sally xx

Wednesday, 18 November 2015

Bits and bobs

Morning!

I have insomnia (funny that!) and am taking the opportunity to update you on what has been going on lately, and what is coming up in the not too distant future.

I am going on the radio on the 30th November (around 7.25am)! EEK! I will be going into the BBC Radio Solent Breakfast Show studio and will be a 'Julian's People' person. It is a short spot, but will give me the chance to recruit people to help with Foggy's next adventure. I'll see if I can get a link so you can listen to it if you want to. Alternatively, visit their website:
http://www.bbc.co.uk/programmes/p001dpqb

My new business is going great guns. My M.E. body still hasn't got used to the new routine yet (not that I have managed to create one with the building works at home). Working combined with networking in the evenings is not conducive to a regular routine. I can set my own hours and take breaks when I want to so it's all good. Speaking of networking, I attended a business network event last night and got tips for my own business, but also for Foggy's charity work. I met a lot of lovely people, some of whom have offered to help with a few issues I am having....podcasts, intellectual property and logo's to name a few! I MIGHT also be going on another local radio station.....maybe...fingers crossed. Spreading the Foggy love as far as possible!

I am in, desperate, need of a graphic designer. I need a Foggy logo for the next campaign. I have asked three graphic designers to design one so far and have
had no luck with the results. I had contemplated drawing/scanning my own logo but was ruthlessly informed last night that the end product quality would be rubbish (charming hee hee) There is no budget. I cannot pay you. So, if you would like to help Foggy's campaign and design a simple, eye-catching Foggy Logo for FREE please do get in touch via mefoggydog@gmail.com.

I am off to the University of Winchester Library tomorrow to give an awareness talk. I will be highlighting how they can support users with M.E. Spreading the word far and wide, as usual. I will be talking for around 45 minutes with questions afterwards. I can feel my glands swelling up with tiredness just thinking about it! Maybe having a 'bad M.E. day' will be a good thing - show non-sufferers what it is truly like to be a mild sufferer. 

Finally........ Foggy has got a new website! It will be going live on the 29th November, ready for the radio interview the following day. Thank you very much to Brian for creating and running Foggy's World Tour website during the last campaign. The baton has now been passed to James Cooper. Read his guest blog post here http://mefoggydog.blogspot.co.uk/2014/11/guest-blog-from-james-moderate-me.html James has been extremely patient and supportive over the past few months. I have been very particular with what I want but with no budget! I love the new website and I hope you do too. So, check out mefoggydog.org and fall in love with Foggy all over again! There is a 'coming soon' screen displayed at the moment with an exciting countdown, ticking down the seconds until Foggy comes out of his coma.

Please note that the next campaign doesn't start until mid-January. 

Take care and lots of love,

Sally xx


Tuesday, 3 November 2015

Unhelpful

Hi,

Like many other M.E. sufferers, I read an article in a national newspaper on 28th October that literally made me gasp out loud. This headline came from the Daily Mail, but the story was covered by most of the national papers. The ME Association discussed the coverage in the Daily Telegraph. See the
link below: 

ME Association response to media coverage of the PACE trial.

I am sick, sick of conflicting research and being made to feel like it is all in my head. The contrast between the Institute of Medicine's Systemic Exercise Intolerance Disease (SEID) research and this PACE trial is astounding. How can sufferers be both intolerant to, and helped by, exercise? The difference just doesn't compute in my tired and weary brain.

I'll admit, I steer clear from reading papers from the latest research. I am not a doctor and do not understand most of the medical terminology. However, I do keep track of any 'progress' made. Since starting Foggy, it has become clear to me that many sufferers read every scrap of news and research, in the hope that they can see light at the end of the tunnel. They also discuss findings as if they had undertaken 7+ years of medical training. Most of us haven't. I don't have the energy to pretend that I have an ounce of medical knowledge. I also don't have the cognitive strength to read report after report, desperately seeking out something positive to cling on to.

I have been sent the following links by a fellow sufferer. Now I know that the PACE research has links to health insurance companies, I don't think there is even a grain of reliability/truth or medical advancement in it. What about you? Trial by Error    No it isn't all in your head.

My own personal mantra, and something I tell fellow sufferers if they ask my advice (I stress that I am not a doctor but speak from my own personal experience), is to do the amount of exercise that is good for YOU, just to make sure your body doesn't go to sleep. That could range from simply getting out of bed or walking up a flight of stairs to taking your dog for a 10 minute walk. M.E. is very
individualistic and so no one can tell you how much exercise you can manage.

I have remained 'active' throughout the 7 years that I have had M.E. At times, during a kind of remission, I was able to do more activities before exhaustion hit. However, this does not take away the fact that exhaustion ALWAYS hit at some point during the day. At the present time walking Patch for 20 minutes is enough to make me feel exhausted by the time I get home. This morning I have done 10 minutes of housework, Pushing a hoover for 5 minutes and cleaning the kitchen floor exhausted me temporarily and I had to have a rest break. Like many other sufferers, gentle exercise has not reduced symptoms or 'cured' my M.E.

My biggest fear is that this PACE study, and the subsequent press coverage, will YET AGAIN negatively impact public perception. I feel the hard work I did last year to raise awareness has been set back. If M.E. sufferers can't get their heads around the latest research how can we expect Joe Public to ever understand?

Love,

Sally xxx (and Foggy doggy snogs)







Wednesday, 28 October 2015

Routine

Hello,

Foggy and Patch are in Patch's bed snoozing so while I have some peace and quiet I am commandeering Foggy's blog.

Today I am going explain how important having a routine is to a M.E. sufferer. I can't remember if I was taught this as part of PACING therapy or Cognitive Behavioural Therapy, but it was a tip given to me by a counsellor at the start of my life as a M.E. sufferer.

This subject is particularly appropriate at the moment because, since I left my old job to become self-employed my routine has gone out of the window! 3 days after I left my job, building work started in our house. Furniture is out of place, there is constant noise and time schedules are run by builders instead of us. All of these factors have left me feeling extremely tired and disconnected with everything.



My counsellor told me that I needed routine so that my body 'learns' when energy is needed. So, since 2008 my sleep routine is as follows: I go to sleep between 10-10.30 pm and set my alarm for 6.45 am. It has to be the same every day, even during weekends or holidays. Otherwise, my body doesn't know whether it is coming or going. Even if I don't feel sleepy I force myself to go to bed. Otherwise, I will have repercussions to deal with the following day. Symptoms will worsen and I will feel exceptionally tired and unwell. Usually, my eyelids are well on their way to be closed by 10.15 pm anyway! It is not easy for me to explain how it feels when your body is shutting down. As bedtime gets closer, I am unable to hold my head up and my insides feel like they are non-existent.

As part of my daily routine, I usually try to avoid napping in the afternoon no matter how tired I am. However, there are days when napping is unavoidable. Getting horizontal and sleeping is sometimes the only way to feel human - although it doesn't make me feel 'well'. If sufferers nap regularly the body gets used to napping in the afternoon and starts to tune into 'rest/nap' mode, whether your body needs to recharge or not. Since becoming self-employed, my body has felt like shutting down by 2 pm every day. I know this is because of the noisy and disruptive building works. I can't wait for life to get back into a routine!

Love

Sally x

Friday, 2 October 2015

Billy no mates

Hi!

Foggy is snuggling up with Patch and is oblivious to the fact that I am writing another blog!

It's 18.20 on Friday night and I am in my thermal pj's (sorry...M&S lounge suit) covered by a double layer of snuggly duvet while I type this blog. I am feeling a little bit sorry for myself, I'll admit it. I dislike this time of the week immensely, it reminds me of what my life used to be like and how different it is now.

Friday nights seven years ago involved clubbing every Friday and Saturday night. Dancing and singing until 3am and then walking home with friends. Spending all day Sunday recovering from a hangover and then back to work on Monday, refreshed and ready to go. I was known as a bit of a party girl and liked a drink. Oh, how things have changed. Let me stress...I don't miss the hangovers! But, I love socialising and I really really love dancing and mucking about on the dancefloor. The last time I went clubbing, or just out dancing, was at New Year. I was home by 11pm and in bed by 11.15pm. The following day I uploaded photos on Facebook of my friends and I
having a whale of a time dressed as superheroes...it was fun but wore me out completely; I couldn't even enjoy the climax at midnight. Yet again, I had, guiltily, said to my friends that I needed to get horizontal and was desperate to go home. I hate having to say that. I hate admitting weakness.

So now I avoid going out. Purely because I know by the time I have made the effort in making myself look half decent, got to the venue and chatted for half an hour, I will be wiped. So then I have to disappoint friends AGAIN. They say they completely understand and I love them to bits for being so lovely when I repeatedly let them down, but it doesn't stop me from beating myself up inside. I am, in one sense, lucky that most of my friends don't live here. I don't feel the pressure to go out every weekend. My social life would be non-existent even if I was healthy. So, at least I am not missing out TOO much.

Last weekend was a disappointment. My fabulous friend Yvonne came down to the South Coast specifically to meet up to watch the England v Wales match. I see Yvonne 5-6 times a year and so we like to 'do stuff' when we meet up. Southsea Castle is screening the whole of the World Cup so we headed down there to stand with hundreds of other supporters. The key word in that sentence is STAND. After 30 minutes of play, my core muscles felt non-existent and I started to feel a bit lightheaded. there was limited seating and my own embarrassment/pride/awareness of disbelief stopped me from asking if I could sit due to my disability. I wasn't in the mood for disbelieving glances. So I stood until half time and then went and perched on a cannon. By this point I had reached a point where I couldn't deny that I felt numb inside and needed to go home. Yvonne is an absolute star and said that she had come to see me, and if that meant sitting in my living room watching the rugby instead, then so be it. As usual, I wouldn't stop apologising for ruining our evening; as usual she told me to be quiet. I was wiped out for two days after that evening. I can't even say it was worth it. Even if I was surrounded by lovely rugby people, some of whom were absolutely stunning! ;)  (rugby men watching is one of my favourite pastimes!).

I think the biggest problem with me is that I don't like letting people down. In my mind, having to end social evenings prematurely is being a let down. This view doesn't come from my friends it comes from me. Maybe I should just stop putting so much pressure on myself to be 'Social Sal' from 2007. She is long gone.

Love,

Sally xxx

Monday, 28 September 2015

News!! Today is day one of a new adventure.....

Hi!!

Sally has news! Brace yourselves......
I'll let her tell you all about it.

Foggy xx

Hello,

The eagle-eyed amongst you will have noticed that Foggy has not been on social media much over the past couple of weeks. There is a good reason for this....
I have left my job and set up my own business....massive smiley face. There are a number of negative reasons for this; I will, possibly, go into those reasons at a later date. For now, let's concentrate on the positives. Being my own boss means that-

  •  I can manage my energy levels much more easily.
  •  I will be able to take regular rest breaks, without needing someone else's permission.
  •  Some of the work that I will be doing can be done from my bed, on payback days.
  •  I can set my own hours, which means doing work at 3am when I have insomnia, and resting  later in the day.
  •  No longer being directly customer facing means I can stop, when I have an overwhelming need  to STOP.
Believe me when I say I have no doubt it will be hard work, but I have a very good feeling about the future. One of my biggest struggles over the past few years has been having to fight against extreme tiredness, to make sure I fitted in with someone else's timetable.

My new business is called Words Angel (Twitter - @wordsangelwings).
My lovely logo
There are three elements to my business:
  • Proofreading service for students and startup businesses
  • Social media mentoring for startup businesses
  • Public speaking - how organisations can support clients/staff with invisible disabilities
I will still continue doing Foggy related public speaking for free - especially when it is for charity. However, now I am self employed, time is money and organisations will have to pay for my words of wisdom.

I am still waiting for footage of the 'Supporting Users with Invisible Disabilities' talk I gave three weeks ago. As soon as I have it, I will upload the footage for Foggy's Followers to see. Apparently, I was really good! Great feedback received.

One thing I forgot to do on Sunday, because I was too busy, was announce this week's caption competition winner. For those people who don't know about the weekly caption competition - a photo from Foggy's World Tour is chosen (by me) and Foggy's Followers compete to think of the most weird/funny caption. The winner is announced on Sundays at 7pm.

This was last week's photo, the winning caption is underneath. Well done to Kitty Parker (Facebook)
"The medieval sport of hurling hats off a ladder is far from dead."

This week's photo will be uploaded to social media separately tonight. Anyone can take part; either send your entry (one per person) through social media or email it to me via mefoggydog@gmail.com.

Have a good week!

Love,

Sally xx

Saturday, 19 September 2015

Polka Dots

Hello!
Sally has been really poorly today; I have been giving her lots of cuddles to cheer her up. Patch is being extra clingy today, I think he can sense that she isn't ok. I've let her tell you all about it in this blog...

Hi!
I am suffering with payback a bit more than usual today and, while I have a brief period of clarity, thought I would tell you what it feels like and why it is happening. I am currently experiencing very high levels of work related stress and it is having a massive effect on my M.E. Luckily, I can see the light at the end of the tunnel and this phase will pass soon. Thursday was exceptionally stressful, there were tears and my adrenaline levels were through the roof. As the day went on, the glands in my throat/neck were getting more and more swollen and painful; they slightly affected my speech and ability to swallow. I got home at the end of my shift and rested but I knew the damage had already been done.

Friday (yesterday), I woke up early (5 am) with a sore throat and heavy 
sensation in my ear. I felt like
I hadn't slept a wink and as if I had flu. As my work day progressed my throat, neck and glands got more painful and my speech became incredibly slurred; moving my head hurt. When I say I had a sore throat I don't mean the slightly painful to swallow feeling you get with a cold. I mean everything from the back of my head to my chin HURT, the whole of my neck, right down to my
collar bone HURT. The back of my mouth HURT. Add to that the weird sensation in my ear, that feels like I have dead weights inside my inner ear, that makes me want to tilt my head and the dull ache from my ear to my throat and I felt dreadful all day. I rested and relaxed watching the England v Fiji rugby game (YAY we won!) but was exhausted and went to bed the second the game finished.

Remarkably, I felt fine when I woke up today. Bearing in mind that 'fine' for me is feeling like I have mild flu. I woke up early and did a bit of pottering around the house: washing, light housework and a very quick walk with Patch (he is still recovering post-op). My payback still hadn't hit and I thought I would make the most of it. I walked to my local shops and did some grocery shopping. The whole trip took no more than 30 minutes. While I was out and about I felt fine but when I got home.....
5 minutes after getting home I felt as if my blood pressure had completely dropped to zero, I felt faint, dizzy and nauseous. My face had gone deathly white and my freckles stood out like polka dots. I had planned on doing more light housework throughout the day but those plans had to be shelved. I sat in a chair briefly but had an overwhelming need to get horizontal. So, I laid down on my bed with the curtains closed. My light sensitivity had set in. I laid down in the quiet for 20 minutes and waited for the severity to pass. It did - slightly.

Half an hour later my symptoms flared again; being in a horizontal position was urgently needed. Usually being semi-horizontal (propped up with cushions) is horizontal enough but my body couldn't tolerate it today and I had to lie completely flat curled up in a foetal position. I couldn't feel my legs and my arms felt like dead weights. My core felt empty and washed out. I felt so unwell I couldn't move. I had the Ireland v Canada game on (no sound - now had noise sensitivity instead of light!) and managed to catch a few minutes of the game. I couldn't concentrate or focus on anything so dozed sporadically. I laid there, not moving, for 2 hours.

In the past few hours my symptoms have improved but I am still finding it difficult to speak properly and still have a painful sore throat. I hope this blog has managed to convey just how much stress affects M.E. bodies.

Love

Sally xx

Friday, 11 September 2015

Misdiagnosis

Hi!

It's been a while!
Foggy is resting up, getting some of his puppy fat back eating too many Wotsits, and is currently snoring quietly at Foggy HQ.
I am taking the advantage of insomnia (again) to write a blog. This blog has been brought about by a de-clutter of my inbox. I have been stunned by the amount of emails to friends which involve explaining why I have cancelled an event, describing doctors appointments and being told they 'hope I feel better soon'. I came across THIS email. It is the subject of this blog post.
--------------------------------------------------------------------------------------------------------------
From: Sally Callow <Sally.Callow@.uk>
Date: Tue, Nov 29, 2011 at 2:52 PM
Subject: Re: Cooey
To: "Friend, A" <Friend, A@.uk>

Yeah, Visual Vertigo IS my dizziness. Basically you use your ears AND eyes for balance and for some reason my brain is only using my eyes which is why I get dizzy. Makes sense now, been misdiagnosed for 7 months :(  But I can do eye exercises now to fix it :)  Good times.
----------------------------------------------------------------------------------------------------------------

I think it highlights a number of things I have previously discussed since the creation of Foggy.

1. Misdiagnosis

2. Length of time to get a diagnosis for every significant symptom

Let me set the scene, my M.E. symptoms started with a bout of Labyrinthitis (ear infection). For years afterwards I suffered with dizziness, lack of spatial awareness and balance issues. I had a lot of doctor appointments (GP, specialists) between M.E. diagnosis (2006) and this email (November 2011). It was 5 years from the start of feeling spinny to the Visual Vertigo diagnosis. At no point have I ever been told, by MY doctors, that the Visual Vertigo is a symptom of M.E. However, dizziness/disequilibrium/visual disturbances are known symptoms of M.E. Why was this not picked up on and explained? Blatantly obvious lack of healthcare professional understanding of M.E.
The exercises help, I still have to do them occasionally when symptoms flare up, but they will never 'fix' the problem. Apparently, the exercises help to retrain your brain and rectify the problem of internal miscommunication between brain, ears and eyes. Click the link for a more detailed explanation of the exercises:http://www.ncuh.nhs.uk/for-gps/clinical-information/cawthorne.pdf

Visual Vertigo is very disconcerting; it has caused me to lose balance thousands of times, sometimes causing me to fall down/up stairs, trip up curbs, bounce off walls etc. The day I was diagnosed, during a hospital appointment, was weird and enlightening. I took my mum with me as I was having issues with concentration and memory; I didn't want to misunderstand any advice received. So, we both went into the specialist's office. He put a contraption over my head which would allow him to watch my eyes as I marched on the spot in darkness (it was like a pair of goggles with night vision, allowing the doctor to see 'in' but I couldn't see 'out'). I believed I was marching on the spot, facing the same direction constantly. I was wrong!! My mum later told me that I did a 180 degree turn and was wobbling all over the place. The doctor explained that my eyes had been moving around frantically, trying to work out where I was, whether I was vertical and trying to stabilise. So, this is the doctor's appointment hinted at in the email. 

These symptoms would be difficult for anyone to contend with; a M.E. sufferer doesn't only have one illness/symptom to deal with. We have a number (20+ individual symptoms) to cope with, and adapt to, on a daily basis. It's a constant battle to try and establish what is wrong and why we feel like we do. EVERY DAY.

Love Sally x

Thursday, 20 August 2015

#IheartFoggy - Foggy wants to trend!!

Hello!!
So here is the plan.
The trending idea is to raise awareness of both Foggy AND ME/CFS. Foggy wants to get as many people as possible talking about these two things in a short period of time.
Foggy would like you to tweet about him and ME/CFS between 0730 and 0830 GMT on Tuesday 25th August.
That time has been chosen because it is an off peak time for Twitter in the UK (more chance of trending) but also late enough in the morning for most people to be awake! It is a global social media mission though so, if you are awake/able to, please take part and help make Foggy's trending plan be a success! Both UK and worldwide trends will be monitored to see if the mission is a success!
There are lots of foible's related to Twitter usage. If Twitter thinks it is a robotic, automated campaign they will block it. With that in mind, mass scheduling on sites such as Hootsuite may not be appropriate. As trending will be a mixture of numbers of people AND number of tweets, one person sending hundred's of tweets will
not be of any benefit. Lots of identical tweets are also a no-no, guidance is given below as to what to write. Variety will be key.
Could you please send any/all of the following tweets. Below are the actions/questions - you simply have to answer the questions and tweet a selfie photo. No essays required, just 140 characters including the #IheartFoggy hashtag. If you have enough characters left please also include #mecfs so it is flagged up to other sufferers who aren't aware of Foggy's existence (*Foggy* sob hic).
1. I Heart Foggy selfie photo of yourself - see the attached YouTube clip from the World Tour campaign.

2. My relationship to M.E. is...(sufferer, parent, carer, friend, campaign supporter, non sufferer etc)
3. What I love most about Foggy is....
4. My worst 3 M.E. symptoms are....
5. (M.E-wise) In the future I hope that......
Obviously retweeting and commenting on #IheartFoggy tweets will be fantastic and will help Foggy's mission to succeed!!

Please don't use the hashtag before the 'special' hour....trending only works with hashtags that have not been commonly used previously.

Important small print

The hashtag #IheartFoggy is the intellectual property of the ME Foggy Dog campaign/Sally Callow. It cannot be used for any purpose other than promoting Foggy.


This should be a fun experiment; positivity helps to spread awareness!

Love

Sally (and Foggy)
xxxxxx



Thursday, 13 August 2015

Overwhelming need to get horizontal

Hi,

Foggy is resting his paws in Foggy HQ and I'm listening to his snores while I am typing this!

I want to take this opportunity to write a blog about the M.E. symptom that is orthostatic intolerance or as I like to call it 'my overwhelming need to get horizontal'. It is exceptionally difficult to explain what it feels like but I will give it my best shot. I have previously agreed with other sufferers who have said it feels like your head is a bowling ball on top of a toothpick and your neck doesn't feel like it can hold your head up. It is so much more than that though; it is a feeling that rips through your core. It's not pain but a weariness that is overwhelming.

'Is this going to take much longer?!!!'
Your spine feels like it is made from jelly and is not strong enough to hold you upright. Muscles feel weak and as if they just don't want to work in harmony and help you move. My overwhelmed-ness (I know that's not a word) starts from my spine and works towards the front of my body. I am sure, if I allowed myself to, I would just double over and my upper torso/head would be down by my knees. I feel incredibly floppy if I have to stand still for more than two minutes at a time. It takes an awful lot of energy to be vertical; that is something I feel non-sufferers take for granted.

Recently I had to pop into Patch's vet practice to pick up some, urgently needed, tablets. I walked in and saw just one customer standing at the counter. I thought 'phew, I wont have to queue for long'..I was soooo wrong. This woman was like a mystery shopper, she asked every single question and had experienced every single scenario known to man. After a minute of waiting I started to get fidgety, if I stood still I felt my energy draining away. Two minutes in and my core started to throb, my body
needed to sit. Unfortunately, the seating is away from the desk and I didn't want to lose my spot in the queue. I could feel myself literally wilting, my head and shoulders were steadily, millimetre by millimetre, getting closer and closer to the floor. I was getting hot as my body was trying to get the energy to keep me vertical. Anyone watching me would have thought I was a moody so-and-so because I got extremely restless. Not because I was impatient but because I was getting more and more uncomfortable and vapour-like. Ten minutes in and I had to lean on the counter; my legs were starting to buckle and my head felt like my toothpick neck couldn't support it. Twelve minutes passed and I had to hold my head up with my hand. I was served at the fifteen minute point and it took two minutes to get the much needed tablets. A quick drive home followed. I was horizontal five minutes after walking through my front door. The rest of the evening was spent shivering with the inability to feel limbs laying on my bed.

It makes me chuckle when people say that offices in the future won't have chairs and that office workers will do all of their work standing up as it is better for your health....ha! I obviously won't be working in an office at that point!

Love,

Sally xx


Sunday, 26 July 2015

Raising awareness one step at a time

Hi,

Sally is still working hard even though the campaign is now finished. A few opportunities have cropped up since the TV appearance on the last day (15th July) and so she hasn't been resting as much as she would have liked. She needs your help - see below.

Hello,

I have been asked if I would like to contribute to a talk being given in my place of work. The talk is about hidden disabilities; my segment will be about chronic illnesses and the support that sufferers need within a library environment; I will, obviously, be using M.E. as the focal point.

I didn't get any support from my library when I was studying at university; I hadn't been diagnosed at that point in time. Although I had symptoms I had no diagnosis to work from. So, I can guess at what support I would have benefited from but need to pick other sufferers brains for ideas.The talk will be delivered to all kinds of library staff; academic, public, corporate, etc. It is not purely aimed at other university libraries.

So, all of you sufferers out there who use libraries for studying, work or pleasure, can you let me know what support you receive but also what support you feel could be useful?

My initial thoughts are that brain fog and concentration may mean we need to borrow books for longer and need reminders about when the books are due back. Extra allowances should be made when fines are incurred because we have probably forgotten that we have the book in the first place. How would we remember to take it back! We would probably forget where the post-it reminder note was! Severe sufferers wont be able to get into a library so distance learning, when books are requested and sent out to the home address, would be essential. That said, would severe sufferers have enough cognitive function to read books? Personally, I found that studying in a library was impossible, noise and lighting intolerance meant I couldn't concentrate at all. So, I used to struggle into the library, take books out and then go home to study under my duvet. My postgraduate was achieved from my bed. I read for 15 minutes, slept for 5, read for 15 minutes, slept for 5....can you see a pattern forming?! Is that the same for other sufferers? Please let me know.

I will be using your responses, ideas and examples within my talk so please email me at mefoggydog@gmail.com.

Thanks,

Sally xx

Wednesday, 15 July 2015

WOW - What a day!!

Hello!!

Foggy is curled up on the sofa with Patch and Sally this morning. Sally had insomnia, too much excitement yesterday, and so is getting the last few Foggy bits and bobs sorted before her day starts.
Here is what happened on the last day of Foggy's World Tour!

Hi,

Phew, yesterday was a long day! The trip to the London Eye had been planned, with military precision, a while ago and it was expected to be a slow, non-chaotic, trip to London so that Foggy could end his campaign on the London Eye. However, the BBC contacted me and asked if I would like to go on BBC South Today to 'tell Foggy's story'. This is something I had been hoping for during the entire campaign; it was an opportunity not to be missed! So, all London plans were rearranged. Foggy and co had to be in the studio in Southampton by 4.40pm (things didn't go quite to plan!) and so the Thames river cruise had to be cancelled and 'posh' celebratory lunch was cut short. Which is a shame as it was definitely a celebratory 'look at what we have achieved' day. The change in plans was DEFINITELY worth it though!

Sally, Foggy and Rae on the London Eye
The day started with a train ride from Portsmouth to London Waterloo....Foggy LOVES trains so was wiggling with excitement the whole way. A short walk to the London Eye followed and luckily we managed to dodge the light showers of rain. The South Bank, where the London Eye is situated, was incredibly busy. It was actually quite overwhelming, I find crowds too hectic, noisy and tiring. My family and I had arranged to go for the Champagne Experience as it was a celebratory day. We headed to the, much quieter, champagne bar for a breather and much needed peace and quiet before being greeted by our 'host' Rae. She escorted our group onto our London Eye capsule and took care of us during our 'flight'. She was interested in what we were doing with Foggy and wished us luck - thanks Rae!

I had planned to do a short video clip within the capsule with the London skyline as the backdrop. Unfortunately, there were 15 of us in the capsule and it wasn't possible to get space to do it. We managed to get some good photos though, see them here in Foggy's facebook album.
https://www.facebook.com/media/set/?set=a.1611304339130486.1073741880.100007528067190&type=1&l=c0b076fd47

Then came a quiet, very lovely, meal in Gilray's Steakhouse. 2 courses and a cocktail later and Foggy and co were happy and refreshed. Unfortunately, we then had to hot foot it back to Waterloo to get the 2.30pm train back to Portsmouth. From there we would have to drive across to Southampton for the interview. Of course, we hit every single traffic light between Portsmouth and Southampton during a very busy rush hour! Three, already tired people, were a little bit frazzled as the clock ticked past 4.50pm.....5pm.....5.10pm.... As sufferers know, stress makes symptoms worse and I was worried that such a long day and now a stressful car journey would make me unable to 'do my bit' in the
Cheers!
interview. What if I couldn't string a coherent sentence together? My throat was sore, glands swollen and brain fog was starting to creep in. I was getting stuck on the odd word and it wasn't looking good! Finally, we arrived at the Southampton studios at 5.12pm (interview was suppposed to be pre-recorded at 5.15pm!) and were rushed straight into the studio. 


Everyone at the BBC was lovely and accepted our apologies for our, more than half an hour, late arrival. I went though 'make up'; under chin blusher (hopefully to hide double chins!) and a bit of lippy applied and I was ready to go! Presenter Sally Taylor chatted to me before the interview and was genuinely interested in M.E. and Foggy's campaign. She said she wanted to help me make viewers understand what M.E. is on a human level. I hope that is what we achieved. Here is the clip extract from the programme. BBC South Today 15/7/15 - 6.30pm.
https://youtu.be/Ha-11xi8GRU

Since the programme aired last night I have received fantastic feedback for both the interview and campaign. Thank you to the BBC for giving me the opportunity to raise awareness on a wider platform. I am very grateful. So far the interview has helped to raise an additional £150 for Foggy's fund from people who didn't know Foggy existed until yesterday. Great!


Foggy's end of campaign totals are:
£5937.54 - excluding Gift Aid
£7236.23 - including Gift Aid

The Just Giving page will be kept open to mop up any additional donations and auction payments (from the sale of Big Foggy etc). So, if you haven't done so already please donate and help Foggy fund desperately needed medical research.

I had planned to stop running myself ragged with Foggy work with effect from last night. However, it is becoming obvious that this campaign is not going to finish overnight. So, I will be occasionally uploading a few bits and bobs over the next month or so. 

Foggy will be back!! I am going to give myself 6 months off concentrated campaigning. It has been a wonderful, life changing and rewarding year but my body has paid the price. So, I need time to recharge, get back to normal (whatever that is!) and sort out a few aspects of my own life that have been neglected because of Foggy's adventures. I have a few ideas for the next campaign already and I am going to have to work hard at reining myself in! I need 6 months of enforced rest to prevent making my health worse. I know it's for the best but it is a little bit frustrating! That said, the books are still coming soon. The children's books are written, I am just waiting for the illustrations to be sorted and the blog books will be done in slow time over the next couple of months.

It will be weird not logging in the second I wake up to see what Foggy stuff has happened overnight; yes, I will miss it. Thank you to everyone who has supported the campaign financially, practically and emotionally. I have made some very good friends since last July. Some of whom I will probably never meet but will keep in touch with even now the campaign is over. 

I am, and will always be, an M.E. advocate and campaigner. Even if a miracle happens and I eventually find myself free from M.E.

Love and doggy snogs,

Sally and Foggy xxx






Sunday, 12 July 2015

Buttons!!

Hello!

Foggy has 3 days left. Sally, Foggy and a couple of members of Team Foggy will be ending his World Tour on the London Eye in London. While he is resting his paws in Foggy HQ he has told Sally to write about one of the things that drains her energy super fast...I.T.

Hi,

Let me start by saying that I am I.T. literate; I actually know more than the average Joe about websites, mobile phones, social media etc because of previous jobs that I have had and life experience. However, just because I know stuff doesn't mean that my brain can cope with it! When I say I.T. I mean everything related to it: computers, mobiles, software, cables and stuff we can't see ie. clouds. I spend an extraordinary amount of time each week downloading files and images. Easy enough but every week there are at least 10 instances of the file being too big or incompatible. When that pesky error message comes up on the screen how quickly do you think my brain remembers how to resize or reformat it? 

It's ironic that Foggy's campaign is social media driven; social media tires me out tremendously! That constant need to upload something engaging, and responding to Followers as quickly as possible, means my brain is always on Foggy alert. Some days, when I get home from work, I have to force myself to upload content. I love Foggy and everything about this campaign but it has also been exhausting. My own personal drive keeps me going and has been forcing my body to push itself for the past 12 months. I know some of my close Foggy supporters have been worrying about me and the pressure I put on myself, thank you for your concern; it is appreciated.

Foggy's campaign has amassed more than 5000 photos (eek). Way back in July 2014 I bought an external hard drive that was capable of holding A LOT of images. Great! Or so I thought. In November 2014 it died. CORRUPTED. Nooooo! Panic mode kicked in and Andra (key member of Team Foggy) helped to salvage as many photos as she could; she even put the drive in her freezer to try and fix the problem! Don't ask, apparently it's a tip that sometimes works. Luckily, MOST of the campaign photos were rescued and moved onto Google Drive. However, they were now in no particular order. I will hold my hand up now and say that I simply have not had the cognitive energy to reorder and categorise the photos that had been 'lost'. It will take me hours and hours of sitting in front of a computer screen, dragging and dropping. This makes uploading photos incredibly time consuming (scrolling through them to see which one I want) and it is all a bit hit and miss but my brain hurts just thinking about sorting them all into month order. 


Ahhhhh, next comes mobile phones or as I like to call mine 'the pain in the **** portable computer'. Let me clarify, I have a super duper smart phone. It is an old business phone and is far too techy for my own personal needs. The contract ends this month and here is a photo of the phone I am getting next. Yes, it is a Nokia...with BUTTONS!!!!! My pet mobile phone dislikes, with regards to M.E. are:
- Massive bright LED screen hurts my eyes, even at the lowest brightness level.
- Touchscreen doesn't always register finger presses and I use energy trying over and over again
- Scrolling through to find the app that I want; again, waste of my energy - cognitive and physical.
- Don't even get me started on updates - very low level stress impacts my energy levels. Especially when they fail because you dared to change your password on another computer!
- Being available 24/7....means I can't 'turn off' unless I physically turn the phone off. Not great when I need to reserve energy.

I think having a phone that allows you to do EVERYTHING pressurises you to DO everything. I am more of a pen and paper kind of gal. I used to spend time keeping notes on my phone, it took ages to concentrate on pressing buttons and getting the drop down box to register my finger press. I don't need to keep notes on a mobile phone, just give me a scrap of paper and a pen. No need for pin numbers, passwords, updates or settings changes with a scrap of paper.

So, I have a master plan. For 6 months, up until I start another Foggy campaign and need mobile social media again, I will be having an old school, easy to use mobile with no data plan. You can get data on this phone but I am choosing not to. I am going back in time, to the days when mobiles were used for communicating with calls and text ONLY. I can feel the stress ebbing away already!

Since starting this campaign it has become abundantly clear to me that M.E. sufferers need to simplify their lives as much as possible. I think most sufferers find I.T. and social media, incredibly draining and tiring. Let's all ignore super duper marketing campaigns and peer pressure and get back to basics. Our bodies will thank us for it.

Sally xx



Monday, 6 July 2015

Foggy's Abseil

Hello!!

Sunday 5th July was a beautiful, if a bit windy, day in Portsmouth. It was the day that Foggy 'piggy-backed', one of his favourite humans, Cerianne as they abseiled 94 metres down the Spinnaker Tower. Take a look at the photos! 

The day was fantastic and a resounding success from the £10 donation from the taxi driver on the way to Gunwharf to the donated bottle of celebratory bubbly from a bar in the area.

Yet again we were amazed by the sheer amount of people who, once they knew why we were fundraising, said they were related to a sufferer. Foggy's campaign definitely struck a chord with a lot of people on Sunday.

Although the abseil has been done now the donation page will be kept live until the end of the campaign (15th July). So, if you are inspired by the photos and want to support Cerianne and Foggy's bravery and adventurer spirit you can donate via:

https://www.justgiving.com/Foggyabseil

Foggy received some cash donations on the day; these have now been added to the Justgiving fund. The current abseil total stands at £283.22!!!! WOW

Doggy snogs xxxx






Thursday, 2 July 2015

Greetings from British Columbia!! Blog from Kristina, a severe sufferer

Hello!
Sally is always looking for guest bloggers to demonstrate the wide spectrum of M.E. severity. Today's blog has been written by Kristina who lives in British Columbia. Not only does she have this dreadful illness; she also runs her own chronic illness support network called Chronic Pain Heroes.
Foggy Followers who have been following since the start of the campaign may remember Kristina from an insomnia lead You Tube clip! (click the link) https://youtu.be/1zbxGeDfXwc. Here is her blog.
Kristina
My journey with chronic illness started with a minor ankle sprain in 2008, which was diagnosed as Complex Regional Pain Syndrome. This turned into a rabbit hole I never could have imagined (definitely not as fun as what Alice in Wonderland experienced). After spending two years trying to get my ankle “fixed”, I ended up having to take time off work, but managed to be back full-time by June 2010. However, it wasn’t easy. In fact, it was getting harder and harder to push myself. I think I had a bad flu in October, but I can’t remember. That’s another feature of ME-CFS – short-term memory loss. But, whether I got sick or not, I do remember my energy steadily declining. I began falling asleep in the supply room during my breaks. I, of course, continued tackling this in my typical “Type A” fashion (if you don’t know what I mean by “type A”, then you aren’t one). Basically, I kept trying to push myself harder to get through the day. Then, one fateful night in January 2011, the right side of my face exploded with pain. That was my initiation into the world of ME-CFS. It was also the last time I went to work. To say ME-CFS makes you “tired” is incredibly offensive. It is so much more than that; though I do have a rather severe case of it. I can remember one day when I felt too exhausted to exist. Just breathing became a monumental task. My body had been pushed for 2-1/2 years, and it was done. Here we are in 2015 and I’m still learning to manage my symptoms; though thankfully I’m no longer afraid of them. Flare-ups come and go in cycles. I’m learning to rest when my body says to rest. So, where is the bright light in all this? I thought you would never ask!
I began reaching out to online communities early on. I have met the most amazing people – many have become good friends, even though we have never met. I have also seen how much my husband loves me. This is hard on any relationship. In fact, I think it’s worse for him in many ways. I don’t have the energy to do much. Oddly enough, this causes my days to fly by (I’m still trying to figure that one out). But he is strong and healthy. All our plans and activities are out of the picture – for now. Instead, he has become my caregiver, and he does it all without complaint – wow! I have also discovered how much God loves me. I know that sounds absurd, but stay with me. Until all this happened, I could take care of myself, thank you very much. However, when my body fell spectacularly apart, I cried out to Him in desperation – and He met me where I was. My husband and I now enjoy a rich faith and we love exploring it together. Yes, my days are still hard at times, but now I have hope! My husband and I are studying the field of Apologetics and I’m enrolled in a Certificate in Theology program starting this Fall. Given my severe cognitive issues, my success relies fully on God, and my commitment to follow through… especially since I just told all of you! So please don’t give up hope. You will make it!

Kristina x