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

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

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

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

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

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

Stress

Hello,

I have insomnia and am hijacking Foggy's blog again...sorry Foggy!

Stress is one of my biggest triggers and I know I am not alone in saying that. The symptom Post Exertion Malaise doesn't just mean the after effects of physical exercise, it can also include anything that makes your body move internally. This can include increased heart rate due to stress, breathing issues due to anxiety, etc.

At the current time I am in the middle of a long period of exceptionally high personal/work stress and it is having a severe effect on my M.E. health. It doesn't seem to matter what steps I take to cope with my stress levels, my M.E. is taking a hit every day. Let me assure you, it has absolutely nothing to do with the Foggy campaign; I don't find Foggy stressful. I am a little upset that the timing of the stress is taking the shine off of Foggy's last 20ish days but that can't be helped. I hope I am still managing to do a good job regardless of my own personal pressure.

I am not very good at biology; I will attempt to explain what happens in an M.E. body when it is stressed! I'll talk about reactions to stress in relation to my own experience. So, my body is in hyperdrive all the time...something to do with the adrenal gland always being in the fight or flight response (My body thinks that a big scary tiger is coming after me ALL THE TIME and braces itself to run away!) this adds to my tiredness. So, of course, when stress hits it goes even further into overdrive. In the past week I have had to cope with chest pains, worse than usual extreme fatigue, dead legs, cognitive impairment, hypersensitivity to light, brain fog and slurred speech. In the immediate aftermath of stressors, my face gets exceptionally hot, my throat becomes tight and I get breathless. My body uses all of it's energy reserves trying to control this reaction. I had to leave work early twice this week, because my body had used all of it's energy reserves, battling against my reactions to stress.

This photo shows what I looked like yesterday afternoon AFTER a 3 hour sleep, in a darkened room, when I got home from work. I was sat (very quietly and slowly) chatting to my mum, She said I looked so dreadful she wanted to take a photo to show you all what I look like when my M.E. wipes me out. I don't think it has ever been possible to capture M.E. in a photograph; I/we just look like we have been dragged through a hedge backwards and like we have had a bad night's sleep. I am prepared to upload a really unflattering photo of myself to raise awareness though!

Of course, I am practicing what I preach. I have been using mindfulness to control my stress levels and have been resting a lot in the evenings. However, additional stress is being added daily and so I am struggling. I think non sufferers forget, we aren't just coping with our M.E. we also lead 'normal' lives and have the same day to day stresses that they have. Just because we are ill doesn't mean our worlds have stopped spinning.

Anyway, I hope you are enjoying Foggy's last 20ish days. if you haven't donated yet please do, every penny counts towards funding much needed M.E. research.

Love

Sally xxxx