Micromanaging our Energy

Hi,

M.E sufferers are exceptionally good at micromanagement. We have to be, otherwise we would be constantly flat-lining. We have to plan our energy down to the minutest detail as we know just 5 minute of too much exertion could set us back for hours, if not days.

As an example, I was supposed to be going to Winchester later today to meet a business mentor for the social enterprise course I am currently working with. I have planned my time and energy since Monday to make sure that I didn't have payback today, but to also make sure that I had completed any work I had to do to. Thus ensuring I could rest during the day today in preparation for the 4 hour round trip. It's not simply a case of adding the 4 hr round trip to an already busy schedule. I have to think carefully about where best to spend energy to make sure that everything still gets done but over a longer time frame. As it happens, I won't be attending tonight because the mentor is unable to attend but also because I am feeling additionally poorly with a germy bug. 

Very few people, outside of the M.E community, understand how we can plan being unwell. When I used to be employed full-time, I often took Tuesdays off work as holiday leave. This is because I knew my payback would affect me 2 days after a weekend of catching up with friends etc. My leave entitlement was

often wasted on bed rest. If I hadn't done that my level of sickness absence would have been 45 days a year...minimum! During a particularly bad 'relapse' that lasted months, I remember a meeting with my line manager. She said she was dismayed that my life basically consisted of work and sleep. She had noticed how I didn't really have a life outside of work and I was spending my weekends resting to be well enough to come to work on the Monday morning. During this time, I had to very carefully monitor my activity levels at weekends because I was scared that I would lose my job. That constant fear added to my already flared symptoms. Pressure from Occupational Health and being told that my job wasn't particularly suited to having M.E also didn't help. Is any job a good match for someone with M.E?! I wasn't allowed to reduce my hours (customer facing role) and so I was making the most of a bad situation - by micromanaging and monitoring every speck of activity.

This micromanagement also means we are hyper aware of our health. We are very in tune with every symptom and know the instant something starts to deflate. Personally, I can feel a wave of fatigue wash over me like a tsunami. It isn't something that creeps up gradually. I have to STOP. This is why self-employment and working from home is a godsend. I only have to drag my weary body up a flight of stairs to get into my safe haven (BED) instead of having to explain that I feel unwell (slight understatement!), get permission to leave, walk to the car park and drive home...and then drag myself up a flight of stairs!

It also means we are very good at getting from point A to Z in the least energy draining way possible. I have set way of doing things, cooking for example. My methods may not make sense to my family but I do it my way because it is the least energy intensive way to do it! The least amount of bending down into cupboards or to put stuff into the oven, the least amount of lifting saucepans and more importantly...the least amount of time needed standing keeping an eye on food cooking on the hob!

Love,

Sally 
and Foggy (OBVIOUSLY)

What Makes M.E so Special?

Hi,

Twice in a the past fortnight, I have been asked 'what makes M.E so special?'. It has been pointed out to me that healthcare professionals don't get trained on EVERYTHING at med school, and that they learn on the job.

Fair points.

I didn't have enough energy to formulate a response at the time but I have been thinking about it for the past week or so. M.E IS a special case. As someone (I think it was Dr Nancy Klimas) said in the Unrest documentary - 'M.E/CFS is the last common illness we know very little about'. The illness itself is a large enough issue to make it 'special'. We are devoid of an essential life source - energy. Which means every single aspect of living is affected. Moving, thinking, speaking etc. It doesn't 'just' affect our muscles, or solely our brains. It affects EVERYTHING.

Add to that a couple more factors and it is easy to see why M.E is 'special'. Lack of acceptance as a

valid illness/disability. When you have Dementia, Parkinson's, Cancer, you don't have to waste valuable time and energy explaining to people that you are genuinely ill, you don't have to validate your illness (in most cases). The general public may not truly understand your illness but they won't question it. The fluctuating nature of M.E can be confusing to people who know little about the

condition.

In my experience, many healthcare professionals don't know anything about M.E many years after their initial medical training. How can they learn on the job when so little is known about the illness? They go to Dr Google in exactly the same way as their patients do. Misguided information found online often leads to poor patient relationships and increased severity of symptoms.

The 'M.E problem' is so much more than purely being an illness that affects 17 million people globally (250,000 in the UK). It is a multi-faceted nightmare that consists of ignorance, doubt, stigma, and lack of research funding. We won't start making head way with increased research funding from Governments until we get the medical profession/politicians to understand that research is needed. They need to learn about M.E.

This is where turning Foggy into a social enterprise comes in. In addition to the fun stuff, I will be training anyone who will listen about the human perspective of M.E. It's early days and the structure of the CIC hasn't yet been decided. BUT, training is desperately needed and it is, in my opinion, the best way forward. They need to understand their patients/constituents/students who are affected by the illness. Not just reading about it on a computer screen. I may have to do Skype training from my bed - conference calls! But, it's definitely something I will be doing. I was going to call them BED talks...but I think I might get in trouble. Bit too similar to TED talks ha! Let me know if you have any suggestions.

Love,

Sally
and Foggy (OBVIOUSLY) xxx

Sore Throat? Is That What This is Called?

Hi,

Since starting Foggy back in 2014, I have complained about having 'M.E sore throats'.  They kinda go along with the notion that M.E feels like having flu every single day as its baseline. Without waffling on about biology, it's to do with having glands in that part of our body that flare up when our body wants to fight infection (an infection we don't have - stupid M.E). For years, I've had people back away from me whilst telling me to 'keep away, I don't want your

These don't work

bug'. I've lost count of the number of times I have had to explain that I am not contagious, that it is an M.E sore throat and not a germ and snot-filled bug.

However, my sore throats have changed. They now not only affect the top of my throat/back of my mouth but also the whole length of my throat and neck. Right down to just above my collar bone. I know what my neck usually feels like and to me it feels swollen. Swallowing is often difficult and it feels as if I have barbed wire/glass inside my throat. I have become concerned that it might...just might...be something other than M.E so I went to my GP. I was told that my glands didn't feel swollen (REALLY?!) and they couldn't feel anything wrong. I was sent for a general 'tiredness' blood test for 'reassurance'. Not surprisingly, my blood test came back 100% fine and dandy. 

So it is 'just' plain old M.E then? Must be. I have told Foggy Followers that I have Hypermobility Syndrome too. This manifests itself in my neck, as well as most other joints. I now think that the sore throat and painful neck joint combo is why my neck/throat is so painful at the moment. I've struggled to hold my head up when I am tired for the past 11 years (since I was diagnosed with M.E) but now it is painful too. It's weird that both my neck and throat have decided to flare at exactly the same time!

Whatever the cause, it is constant and blooming painful. M.E severity may settle and remain static over time but I am finding that symptoms change and ebb and flow. What's coming next? It's a mystery!

Love Sally
(and Foggy OBVIOUSLY)

The Past Month has Been EPIC!

Hi!

Foggy's paws are back in the UK but won't be back in Foggy HQ until Tuesday. So much has been going on over the past 4-6 weeks I figured it made more sense to round it all up in one hit.

Unrest
It was an absolute honour to host a screening of this amazingly powerful film. However, it was a FREIGHT TRAIN that completely took over my life for the best part of 6 weeks. A number of people who came to the screening are now thinking of hosting their own screening which is fantastic. One word of warning: If, like me, you are a one woman band and do all the work yourself, please consider if you have the energy to do so first. My M.E has taken a constant hit since the moment I applied to screen the film. Finding a venue, organising the logistics, shop, insurance, promotion, marketing....the list goes on and on. Thank you so much for my friends Cat and Louise, and Rotarians Adele (and

partner Tyler), Tim and Janice for helping me out on the night. So much stress had caused my brain to stop working properly. If it hadn't been for them I don't think it would have been the success that it was. I did my talk on auto-pilot, I have absolutely no idea what I said (apart from what was on my prompt cards!). The payback has so far lasted 3 days..... more to come I'm sure. It was lovely to put faces to Twitter handles and Facebook profiles. I had a queue of people to talk to after the film finished, it was great to meet you all. Thank you to University of Portsmouth CIO, Andrew Minter for giving me such a warm introduction. He nearly had me in tears before the film even started! I've known Andrew for a number of years and he has always been supportive of Foggy and I. Although it wasn't a University screening he came along to support our efforts. 

Cuba Baby!!

Thank you Daniella and co for taking Foggy to Cuba for 2 and a bit weeks! He had a great time! I love the photos! We are working out the mileage but as he went via Paris it'll be quite a bit to add to his mile-o-meter I'm sure!

Click here to see the photo album - Cuba baby!! Yeah!!

Milan

Foggy has just spent the weekend in Milan with a lovely lady called Cvetelina and her friends. They are all members of Roteract (Rotary for young people) and Foggy got treated to lots of walkies around the city and a posh dinner. Nice! Again, mileage is being calculated.

Click here to see the photo album - Milan

School of Social Entrepreneurs

So, I announced this at the screening as it was, appropriately, Global Social Enterprise Day. As I have hinted at over the past few months, Foggy is getting bigger. I applied for a place on the (brace yourselves for a long name) Lloyds Bank Social Entrepreneurs Start Up Programme, in partnership with the School for Social Entrepreneurs (SSE) and jointly funded by the Big Lottery Fund. I got a place! I started the course in September. I was going to wait until the new year before making an announcement but the timing seemed right. Foggy is turning into a social enterprise. He will continue campaigning as he does now but in the background I will be running the business element. This is the last campaign Foggy and I will undertake for the benefit of the ME Association. We will still be raising research funding but will crowdfund for specific projects/researchers. It will probably (not set in stone) involve training for healthcare professionals who do not receive M.E/CFS training in med school. I will deliver M.E from the human perspective. Education professionals will be trained in how to support ME/CFS people. 21,000 children and young adults have M.E/CFS in the UK. They need support. The course is for one year and I will receive training and mentoring. Exciting and very tiring times ahead I'm sure. I will of course, be managing my energy levels but I know my symptoms will take a hit. I have no idea how the social enterprise will pan out. As you are all aware, it is entirely dependent on healthcare people WANTING to learn about ME/CFS.  Keep your eyes, arms, legs, fingers and paws crossed!

That's it - you are all caught up!

Love,

Sally AND Foggy (OBVIOUSLY) xx

Open Letter to Blue Peter

Hi,

Did you know that Myalgic Encephalomyelitis (M.E), otherwise known as Chronic Fatigue Syndrome (CFS), affects over 21,000 children and young adults here in the UK?

ME Foggy Dog is a UK-based, social media driven, social enterprise.Between 2014-2-18, Team Foggy raised over £10k for the ME Association. Foggy, a soft toy, is a globetrotting adventurer who travels the globe raising awareness with every paw-step. This is Foggy meeting his doggy

idol...GOOFY!!!! Foggy has a bucket list, maybe you could help to make one of his wishes come true?

What is M.E?
It is a severely debilitating and life-altering illness that affects 250,000 (low estimate) people here in the UK (17 million worldwide - very low estimate). Due to the ridiculous name Chronic Fatigue Syndrome, the general public assume that it is 'just' tiredness. WRONG. There are a wide range of symptoms including chronic pain, dizziness, IBS, migraines, and cognitive issues.

Here is the ME Association's description of M.E What is M.E?

I am contacting you to see if you would consider highlighting ME/CFS on Blue Peter? There are many housebound/bedbound young sufferers who are fans of your show. It would be great if you could help ME Foggy Dog to show them they are not forgotten about. We know they are there and we know that they are struggling.

There is a wave of recognition of the illness happening right now. Use the opportunity - Get on the awareness train (*Foggy* Choo choo!) I would urge your producers, presenters and back stage staff to watch the award-winning documentary Unrest. It shows the people you can't see, those people who are invisible in society because they can't break free from their beds.  You can watch it on Netflix, vimeo and iTUNES.

I look forward to hearing from you.

Best wishes,

Sally Callow
MEFoggyDog.org

Could it be M.E or Maybe Fibro? It's a Mystery!

Hi,

I have a very painful right side of my body and no doctor has ever been able to put their finger on what caused it or why it has been long-term pain. Let me explain.

I had skin cancer back in 2012, it was a very 'not bad-looking mole' that didn't look quite right so I got it checked. I had the biopsy done and was told it was a melanoma. I had it cut out. Sounds simple doesn't it? This 'simple' procedure has lead to 5 years of bouts of severe pain and tingling in my leg. My M.E advocacy, and hearing other M.E peeps stories, is now causing me to wonder if it is M.E or Fibro related.

The pain started as I walked out of the outpatients department. In my mind, the pain was triggered by the surgery. I wondered if it was triggered by the position I was laid in. I was laying rigid, muscles taut, to hold myself in a certain position, could that have caused my muscles to spasm as my leg was cut into? I made a complaint to PALS (Patient Liaison Service) and they investigated for months. They concluded that I'd had a pre-existing condition that was caused to flare by the surgery. Really? I had never had pain in that leg prior to that afternoon.

My GP had no idea what was causing the pain and was lead by PALS. They said apart from taking strong painkillers there was no treatment available. However, I was referred to have my nerves checked, I listened to my nerves dancing around in my body when the consultant stuck the probe in my leg. 'Nothing wrong there' he said. 'The surgery has not damaged your nerves'. Maybe not damaged.....****ed them up...yes!

I found it difficult to walk for about a year and limped around a lot, I never had use of crutches, etc, but with hindsight I think that may have added to the problem so I am glad that I struggled to get around. I was able to build my muscles back up again.

What did the pain feel like? It was a shooting pain that went from my inner mid-thigh up to my groin and back again. The pain would strike out of nowhere and completely take my breath away. I also had a pins and needles/ants crawling under my skin type sensation up the front of my thigh and in

'Nurse' Patch - On the case xxx

my foot. Very disconcerting and I used to give myself a deep massage to try and push away the feeling. Didn't work though! My right knee started to give way too...what the heck was going on?

Luckily, during this time, I worked full-time and was able to pay to see a private Chiropractor. He was very good! He said that the surgery had caused the muscles in the right- side of my body to spasm and that's what was causing the problem. My nerves were tingling because they were trying to repair themselves. He showed me how my nerves had gone exceptionally tight from my foot up to mid-back (think bra-strap). I hadn't realised it before but nerves are like a tree root that run continuously throughout your body. I don't know what I thought nerves were like before but not that! He massaged the nerve 'root' in my right side, I hadn't realised it but the nerve problem had caused my right bum cheek to get tense and sore too! It was only when he did deep massage on it that I screamed in pain. The pain in my inner thigh was so intense I nearly vomited during a few sessions. 8 sessions later, the pain had subsided, the nerves were doing more of a waltz than a tango in my thigh and he taught me how to stretch to alleviate symptoms.

He also told me off for having appalling posture (I have Hypermobile joints - hardly surprising!) and told me I MUST sit properly in chairs otherwise my nerve would tighten back up again. Does he not know how hard it is for a M.E sufferer to sit upright? My go-to position of choice when watching telly is SLOUCH! I find if I lay in bed for too long or lay propped up on pillows, the problem starts again. I hate it. I need to just lay but this pain needs constant attention. This nerve problem now also affects my right arm, hand and right side of my neck. JOY! (As far as I can tell!!) My physio has given me similar stretching exercises for my arm/hand.

I don't have a medical degree, I have no idea if what he told me was right. I now find that if my nerve symptoms flare up, doing his simple stretching exercises helps. I can feel the tightness ebbing away. It works for me and that's all that matters, right?

I guess my question is this. I had M.E when I had the surgery. Is this pain another M.E symptom or something completely separate? 

Any thoughts would be welcome.

Love Sally
(and Foggy OBVIOUSLY)

Loneliness and M.E

Hi,

The subject of loneliness is a hot topic at the moment. MPs are getting involved, many local cafes in Portsmouth are holding 'Loneliness dining' for people who need support and some company. The subjects of inclusion and loneliness made me think about how M.E affects us in terms of loneliness.

I wrote a blog a few years ago on a similar subject but I want to revisit this topic - 2015 blog

When we are laid on our beds, desperately clawing back energy and trying to calm our overstimulated brains and bodies, who do you think is keeping us company? I may live with my parents, but they don't sit silently in my room, keeping me company during my 'payback'. They are

getting on with their usual daily lives. They allow me to be as independent as I want to be in terms of my illness. Sometimes, it is to the point of stubbornness, I will not allow this illness to tear away

every shred of independence that I once flourished in. So I choose to struggle instead of asking for help. Many sufferers don't have the choice to be stubborn. I am well aware of that and consider myself to be exceptionally lucky. Every day, I leave their company to go into what sometimes feels like solitary confinement because my health forces me to. It's enforced loneliness and isolation. I'm a naturally sociable person and being alone is against my natural instincts. My body seems to know when it needs to shut down though so I have to be guided by that instinct.

The slightest noise can hamper my 'recharge' time. Sometimes I am able to watch TV while I rest but not all the time. I often lay silent with my eyes closed just 'being'. If I have flat-lined then I can't talk or move easily. This doesn't allow for any human contact. Sometimes I have to lay there for a few hours. IT'S BORING and makes me feel incredibly lonely. Especially when my arms and legs are feeling so heavy and numb that I can't feel them. I yearn for the 'good old days' when I used to be out 3-4 times a week, dancing the night away with friends or going to friend's houses for a catch up that lasts until the early hours. Those days are a distant memory.

I know you can feel empty in a crowded room so having company isn't really the issue. I feel lonely being the only ME sufferer in my group of friends. As much as my circle of friends now know a lot about M.E, only sufferers know the true nature of the illness. My feeling of loneliness flares when I get messages from friends asking me out for a coffee or when I see their posts on social media. Events that, back in 2006, I would have been the first to sign up to.

Our M.E community is fantastic for many things but doesn't really help with my feelings of loneliness. Everyone on Foggy's Twitter feed are loving and supportive but when it comes down to it, it's just BED and me.

Love

Sally
 (and Foggy OBVIOUSLY)  xxxxx