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

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)

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

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

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