Employment and ME

Hi,

It's nearly Christmas! Foggy is so excited in Thailand, I think he is driving Kat slightly crackers!

In a recent blog, I said that for the first 8 or so years of my illness, I played down the severity of my symptoms and many of my friends didn't realise M.E was a big deal. Partly, due to my own sense of stigma and being uncomfortable being the 'sick' person in my group of friends. It has got me thinking about what life was like when I was employed and how life was back then.

Foggy followers who have supported us since 2014 will know that I used to work full-time in a university library. The timing of the onset of my symptoms coincided with starting 7 years of employment at the library. I was ill throughout my time there, though the severity fluctuated.

Students - avoid these slouchy couches...
they kill your back!

However, at the start, before I was diagnosed, I didn't have a clue what was wrong with me and seemed to be off sick with a wide range of illnesses - 'flu', migraine, vertigo etc. Once I got my diagnosis 3 years later, because I had the label I had yearned for, I simply accepted my symptoms as Chronic Fatigue Syndrome (CFS) and, because I had been told there was no treatment apart from learning how to manage it with Cognitive Behavioural Therapy (CBT), I 'got on with it'. Or at least, I tried to.

For years, I experienced misunderstanding and massive negativity from a few of my colleagues. I lost count of the number of times I was told that I wasn't the only person in the department who had an illness and 'they still managed to work'. I had no answer to this statement as I didn't understand my own illness. If I had the same conversations now, I would be able to defend myself. Yes, I felt like I was being attacked.

I visited the Occupational Health team so many times, my personal file was HUGE! During every visit, I was told that working in a library was not suitable for someone with M.E. I know that now. But, what confuses me is that, if these healthcare staff didn't know much/anything about ME/CFS how could they say that my condition was not compatible with my daily activities? I think I have mentioned this before, I had skin cancer 5 years ago and had been put on uber strong painkillers. They added to my slurred speech. During a visit to Occ Health, I was told they felt I was drunk and was not in a fit state to return to work that day. Well, slurred speech is also a symptom of M.E, they could/should have known that. I didn't want my job to be put at risk so I stopped taking the painkillers asap. So I was continuing to work full time, with M.E and extreme leg pain from the surgery I'd had. I was so determined to not let my health dictate my life. I now know that I was being stupid. No job is more important than my health. Throughout my working life at the library, I downplayed my M.E due to being terrified of losing my job. I ended up leaving because of 'working relationships'. With hindsight, I can see that leaving was the best thing I could have done. I seriously doubt that I would have been able to work full time for much longer anyway due to decreasing energy levels caused by stress.

I have 'met' so many other M.E sufferers that are currently in the same position that I was in at the library. They know that they don't have the energy to work full time, they know that they are literally living to work at the moment. Daily activities are restricted to travelling to work, work, travelling home from work, eat dinner, bed. That's it. They have no life outside of work because they save all their energy to earn money to support themselves. I can 100% understand their mentality. That was me. What I want them to understand is that M.E doesn't give you a choice. You may well reach that point where you simply can't work. Isn't it better to determine your own path? Don't let your health decide when you stop work. Find a plan B contingency plan for when you can't be employed anymore. I am now self-employed (That's why I have no money! If any of you need proofreading/social media marketing support let me know!) and can work to my own schedule, have rest days when necessary, and I can work from home/my bed!! Whoop!

Since starting Foggy work, I have always tried to be open and honest about my symptoms to try and raise awareness. However, I have recently realised that I wasn't as open as I could have been while I was employed because I didn't want to risk losing my job. I was terrified that bosses would think I wasn't up to the job. That was a huge fear of mine.

Us 'mild' sufferers are very lucky to not be bedbound/housebound. 25% of sufferers don't have the option to work. Those of us that can still work need to understand that we are in a privileged position in the M.E community and should take care of ourselves and not be in denial about our limits. It also gives the general public the impression that M.E isn't a big deal, that we are able to function normally. Pretending that everything is fine is only going to damage you and our fight for understanding. I understand that now......do you?

Ho ho ho!

Love from Sally and Foggy (OBVIOUSLY)

Clumsiness and Broken Bones!

Hi,

Well, it has certainly been an eventful 36 hours! I would like to apologise to my parents for wrecking their Sunday afternoon. We were all cosied up in our living room, all set for an afternoon of Christmas movies. I was having a payback day so was in the mood to be a sloth with very little activity. I fancied fish finger sandwiches (gluten-free of course...not quite as nice as it sounds) and was just waiting for the fishy bits to cook in the oven. I sat back down in the living room and thought 'oooh, did I put it at the right temperature?'...jumped up to go and check and promptly walked into the kitchen door frame. It was a fight between the door frame and I and the door frame won. I was stood motionless like a Flamingo for a couple of minutes while I waited for the pain to subside to be brave enough to take a look under my sock to see what damage I had done THIS TIME. My middle toe was bent in a weird position and the bruising had started already. Uh oh. This was not just a stubbed toe. @&$%!  I had to have THAT conversation. You know the one. The one where you have to ask

someone to do you a favour that will mess up their plans for the rest of the day! Non-UK people, our NHS is struggling to cope at the moment and it is well-known that the waiting times at emergency departments around the country are at dreadfully high levels. I REALLY didn't want to trek to our local hospital and sit in a waiting room for hours, and hours...and hours. So, I called 111, which is the UK non-emergency number to phone for advice. Was there anything I could do at home? The call handler was very helpful and sympathetic, I explained about my M.E and that I was having a bad payback day. He understood the predicament but said I needed to go to A & E because I had broken the same foot last year and the damage could be worse than I expected.

Note to self - DO NOT THROW AWAY THE CRUTCHES ONCE I AM HEALED!! This is becoming a running theme, I may as well keep the equipment close to hand for WHEN it happens again!

Anyway, long story short, we arrived at 1.33 pm and walked into a packed waiting room. We were surrounded by people who were vomiting and coughing. If my family and I managed to get out of there without catching a bug it will be a miracle. Lots and lots of handwashing - OCD style! I hobbled out of the hospital at 4.06pm (I was surprised, I had expected it to take much longer), post x-rays and excellent treatment from nursing staff.  I have a fractured toe. I am amazed at how my whole foot is very painful though. Yet again, I have to spend the next 6 weeks resting my foot and getting around on crutches.

How does this relate to M.E? The accident was caused by my payback day. I was feeling unsteady all morning and my spatial awareness was non-existent. I was feeling so tired I was staggering around the house. I bump into things all the time when I have payback days. I am perma-bruised on my hips/thighs from when I bounce off walls and furniture. Unfortunately, door frames and foot bones are not soft and squidgy!

My M.E deteriorated during my time in the hospital. It was noisy, bright, and busy. Not the perfect environment to be in on a payback day. I could feel my spine starting to go floppy and just wanted to get horizontal, which of course I couldn't do. I couldn't even tilt my head back to rest against the chair as the only wheelchair we had been able to find was broken and moved like a Tesco trolley (non-UK people .... moves badly), the back of the chair only came up to shoulder height. By 3.30pm my head felt so heavy I resorted to balling up my coat and using it as a pillow. I simply couldn't hold my head up any longer. My speech was becoming slurred and I felt like I was moving at a glacial pace.

One positive, my nurse took an interest in M.E. He said he had dealt with children with the illness. He queried my use of M.E though. He asked if it shouldn't be called Chronic Fatigue Syndrome (CFS). I was happy for M.E to be being talked about so I explained why most of us hate the term CFS. I raised awareness with at least one person on Sunday :)

This enforced rest is different to M.E rest. Usually, I try to do a bit of pottering every day, even if my symptoms have flared. Purely so that my body doesn't go to sleep entirely. My activity is minimal though, I'm talking about maybe going outside and feeding our fish or light housework for 10 minutes. Adding this broken foot into the mix means I can do NOTHING. Standing up is exceptionally painful. At the moment, I am unable to bear any weight on my left foot. I have crutches but apart from giving me a greater sense of balance, they aren't helping me to walk and I'm having to hop. Hopping is a MASSIVE drain on my energy levels. Dragging myself up and down our stairs when I need to use the toilet is also killing me. I am resorting to not drinking much to minimise the amount of times I have to trek up 16 steps (yes, I have counted them...slowly).

As I have said in previous blogs, I am a people pleaser. I am already hating not being able to do stuff for myself or help out with housework. My family keeps joking that I had the 'accident' on purpose to get out of cooking/cleaning over Christmas. Trust me, my life would be so much easier if I could get on with life as normal!

I am having a complete rest until tomorrow night when I will be venturing out! Luckily, I had a quiet Christmas planned so I haven't had to cancel plans. But, I will be stepping out for a Christmas dinner and good times with a friend. Every time I break stuff I learn and make mental notes about how to cope better next time. My M.E makes me clumsy, there is nothing I can do about that, but I can learn how to have 'service as usual' with a broken body. Unfortunately, Dad's taxi will be my lifeline for the next 6 weeks....sorry Dad!

Here is the blog from my last hospital experience!
http://mefoggydog.blogspot.co.uk/2016/10/its-not-exactly-been-restful.html

Love,

Sally
(and Foggy OBVIOUSLY)

Being Open About Having M.E./C.F.S.

Hi!

I'm sure I am not alone in that most of my friends do not live in the same city as me. I have 2 friends within a 5-mile radius of my house but most of my friends live at least 2 hours drive away. This means that, due to my health and their busy lives, we rarely meet up and rely on social media and emails to keep in touch. A friend of mine has recently moved into the area after 6 years away. Being an Army wife has meant lots of time outside of the UK. We have been able to meet up regularly and catch up properly over the last couple of weeks. The thing that struck me was that I had M.E 6 years ago, and yet it wasn't something that my friend was overly aware of. I downplayed my symptoms and hid away when I was feeling unwell.  It got me wondering about how and why my openness about the illness has grown and evolved while she has been away.

6 years ago, I kept my illness private. I only told close friends, family and work colleagues(who had to know). This secrecy was mainly due to lack of understanding and my lack of energy to explain how the illness made me feel. If I had to cancel a social engagement, I wouldn't give the real reason, I would say I'd had a hard week, some kind of family issue was going on, or that I had a bug.  As I explained to my friend this week, she only saw me when I was feeling well enough to socialise. She has never seen me when I am laying in my bed unable to move my arms and legs or when my speech/brain are functioning so slowly I don't make sense. That doesn't mean I think she would run away and be unsympathetic, it means that when my symptoms are really bad I just want to be left alone because I don't have the energy to communicate with another human being. As I have said in previous blogs, I don't even see my parents when I am experiencing bad payback. I cope better when I don't have to please anyone else.

Since starting Foggy 3 years ago, I talk about M.E at every available opportunity. I no longer feel the stigma to the same degree. I won't lie, I still experience a huge lack of understanding, ignorance, and nastiness, but I now understand the illness a lot more than I did before. I feel reassured that there is a whole community of people with M.E that are going through the same stuff as me, though in varying degrees.

This month marks my 11 year anniversary of having M.E (diagnosis came 4 years later). In terms of symptoms, I am no better off than I was on day one. My symptoms have changed but thankfully the severity has not. My periods of 'remission' are now much fewer and far between but I'm sure that is because I am now self-employed and managing ME Foggy Dog; my routine is non-existent (I try hard to stick to one though!).  My working life is now very different from working 8.30am-5pm Monday to Friday and doing Foggy work in my spare time. I find it hard to turn off and so pacing and rest are much harder to regulate. I think that by downplaying my illness, the locum who diagnosed me with 'I think you have Chronic Fatigue Syndrome. You should be grateful, you could have M.E...that's so much worse' added to my confusion about my health. OK...let's move on from that stupid/insensitive/incorrect comment and concentrate on the fact that he played down the severity of the illness. I didn't Google CFS to find out more info and social media was not as abundant as it is now, I took the GP at face value and thought CFS wasn't a big deal. I figured that as there wasn't any treatment I would just have to carry on as I had been, it was either that or drive myself loopy trying to fight against something I didn't understand. That meant struggling into work, being very confused by the wide range of invisible symptoms, and fighting for people to understand that I was feeling very unwell. I did not know that there were 17  million other people in exactly the same predicament. That GP's attitude impacted my own perception of my illness for years. I now see that he was unhelpful and insensitive, and there were so many ways that he could have helped. He didn't even tell me that there were charities for CFS/ME patients or point me in their direction for support. I only came across the ME Association when I planned to set up Foggy. I had to type into Google 'ME charities'. The ME Association was at the top of the list. I didn't know that CFS was M.E, and I also didn't have a clue what M.E stood for (Myalgic Encephalomyelitis) or how to pronounce it! I have learned so much stuff since Foggy was 'born' back in 2014 and now I am very happy to be passing info, however basic, on to new sufferers, undiagnosed people, and the general public. Just because we have the illness, doesn't mean we fully understand what is going on!

We are frequently told not to self-diagnose using Google, but I think the ME community would be lost without Dr Google. I have learned so much more about my health using the internet than I have ever learned from human doctors. Now, as an M.E advocate, I meet new patients, or as yet un-diagnosed people EVERY WEEK. They are all experiencing what I did at the beginning. That needs to change. So many people are struggling without knowing that there is support available and that there are people fighting for their illness to be recognised and for research to be funded.

Sorry if this blog doesn't make loads of sense, I have brain fog today!

Love,

Sally
and Foggy (OBVIOUSLY)
xxxx

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

Differences between Fibromyalgia and ME/CFS

Hello!

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

Hi,

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

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

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

advocate of the illness'.

See?

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

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

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

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

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

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

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

Here are some links that you might find helpful.

www.fmauk.org - What is Fibromyalgia?

NHS Choices - Graded Exercise Therapy

Love,

Sally xxxx

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

Sleep Issues and M.E

Hello!

Sally is being weird this week. Her sleep pattern is all over the place. Over the past week, her numbers of hours of sleep at night has gone: 8, 3, 6. 10, 3, 8, to 5 hrs tonight. Crackers! I have told her to write a blog about it...here it is.....

Ugh (translated that means hi),

It is currently 03.28 on Thursday morning. 

I had been laying in bed for the past hour or so...WIDE AWAKE but determined to not get up.

Sleep issues are one of the more surprising elements of having M.E. You would think that an illness that is also known as Chronic Fatigue Syndrome (CFS), would entail sleeping A LOT or at least sleeping a minimum amount of hours (8 is pretty standard...isn't it?). However, sleep disturbance and unrefreshing sleep are symptoms of this crazy illness. 

Many friends say to me that my sleep issues are the reasons why I am tired all of the time. No, it's because I have an illness. Sleep problems are just one symptom of it. It wouldn't matter if I slept like a log for 8 hours, I would still feel unrefreshed and as if I hadn't slept for even 5 minutes. I am kind of

used to functioning on auto-pilot. I've had nearly 11 years practice of feeling like a sleep-deprived zombie! Some days, like today, are worse than others. I've had a week of really topsy-turvy sleep and so my head and body haven't a clue what they are supposed to be doing!

Like 'normal people', I have stuff on my mind. That additional stress has added to my sleep problems but isn't the main cause. 'Normal life' just adds to the usual rubbish.

Sleep issues for M.E peeps are wide-ranging. Some people do sleep, and sleep, and sleep....endlessly and unrefreshingly (Fatigue is probably added to by medication for pain and other symptoms). Others have the same kind of pattern as me. Whatever the pattern, M.E means that even though we feel like we could sleep forever, many of us can't.

It was Mental Health Awareness Day this week, I am open about the fact that I have PTSD and depression. I don't believe it is anything to be ashamed of but appreciate that many feel the stigma. It made me remember what my GP said when he prescribed me Fluoxetine for depression. I was worried that the side-effect of 'may cause fatigue' would make my M.E fatigue even worse. He said (paraphrasing) 'would you rather have suicidal thoughts or be a bit more sleepy?'. Good point! Since taking the drug, I have found that I feel more tired but like he said, I guess I have to weigh up the pros and cons. You would think that taking a drug that causes fatigue would mean I would sleep more...nope! If only! If anything, it has thrown my sleep pattern out of whack, my body doesn't seem to know when it is supposed to be awake or asleep. 

Since doing CBT 10 years ago, I stick to regular bedtimes. I am, 95% of the time, in bed ready to go to sleep at 10.15pm. I'm usually asleep within about half an hour. My problem is that I simply can't stay asleep and have a habit of waking up at 3am. On the rare occasion that I find myself up and about at 11pm, I am excited! It's like being in a another world! Oooh, so this is what 'normal' people do post 10pm?! WOW! I usually feel like a bit of a rebel for daring to be awake past my bedtime. My life is so rock and roll!

Love

Sally xx
and Foggy OBVIOUSLY xxxx

M.E Online Community

Morning,

Before creating ME Foggy Dog I was clueless about the illness, despite being a sufferer myself. After 3 years of tests and being given the run-around, I was given the label I had been seeking...I finally knew what was wrong with me!!  A locum had been so blase about the illness that I didn't appreciate the seriousness of the diagnosis. I was told there was no treatment apart from the therapy sessions I was being referred for (CBT in my case). My naive, brain-fogged brain assumed that as there was no major treatment, it couldn't be a major illness....  So for the next 4 years, I struggled on. Desperate for anyone to realise that I wasn't just a little bit sleepy. Every month or so, a new symptom would appear. Every doctor's appointment concluded with 'just put it down to your Chronic Fatigue Syndrome (*Foggy* Grrrrr).

The idea for Foggy came about so randomly back in 2014. It only took a month to set up ME Foggy Dog. Time from the initial idea to the launch in a local cafe went by in a flash! I had no idea what was ahead but was braced for the adventure. I knew Foggy would be driven by social media but had

 absolutely no idea that an online ME community already existed. I also didn't know it had its own hashtag! (#mecfs) I wish I had known about the community years earlier, I certainly would have benefited from the help, advice, and support it offers.

This past week, I have met five mild sufferers who don't 'do' social media. They had never heard of Foggy, didn't know there was charity support available, and didn't know an online M.E community existed. These people all told me they felt forgotten about and isolated. I encouraged them to embrace social media as it offers much-needed love and support. Three of them didn't know the difference between mild, moderate and severe M.E. That worried me. They simply called their condition chronic. It shows that M.E sufferers aren't told about their own condition by doctors, we all have to self-educate. Four of the people I met this week didn't know about pacing. Their GP had never mentioned therapy to them. Weirdly, we are always told not to Google diagnose, but with M.E. it's the only way to find out what the heck is going on with our bodies. It is also weird that doctors are themselves looking at INACCURATE information online when dealing with ME/CFS patients.

There are many 'mild' M.E sufferers out there that have just got on with life (with great difficulty), and do what they can to get stuff done whilst feeling isolated and forgotten. I know this because that was me, I had no clue that there were 17 million people with my condition, all of us struggling with life; whatever the severity of our M.E symptoms. 

I am so thankful that I had a creative brain cell that was functioning normally back in 2014. I am proud to be able to raise awareness for our community and to bring us out into the light. 

Love

Sally xx
and Foggy OBVIOUSLY xxxx

Noise Sensitivity

Morning!

Foggy is in Las Vegas and Patch is currently in his favourite place surveying his empire (the garden). I'm going to take this opportunity to write a blog about something that happened over the weekend.

My Mum and I had decided to spend a quality afternoon together with a lunch at a nice restaurant and a trip to the cinema (We saw Victoria and Abdul). It was a half-full battery kind of day already but I chose to go anyway, mainly because the afternoon would be spent sitting down.

We had chosen to go to Casa Brasil, they offer a 95% gluten free menu so it was ultra appealing for me. We had booked a table online and were looking forward to a fab meal (Basically BBQ meat and all sorts of salad - love, love, love). We arrived and were met with a wall of sound. Both my mum and I contemplated leaving straight away. However, we took our seats and decided to give it a go regardless. Trying to get a table elsewhere would have been a nightmare. The food was fabulous and

the service was excellent. No complaints there. However, the volume of the 'background music' was set at exploding ear drum level. I couldn't hear a word my Mum was saying and she couldn't hear me either. The combination of my M.E noise sensitivity and my Mum's Tinnitus meant that it wasn't a pleasant experience. I could feel my energy levels flat-lining as my brain tried to overcome the noise assault. Having to shout was making my throat sore. The effort of straining to hear what my Mum was saying caused my glands to swell up and become painful. All diners were talking loudly over the music and so it became deafening as the restaurant got busier. It was 'Samba Sunday' and so I had been expecting music but not 'nightclub loud', music you have to shout over while you are eating! I would recommend that you only eat here when you don't want to talk/communicate with the people you are sat with! Their tag-line is 'Come hungry. Leave happy'....I'd change that to 'Come hungry. Leave with a headache'.

Bellies full with yummy food, we made our way across the complex to the Odeon cinema. My Mum and I have a habit of always taking ear defenders to cinemas as the sound is always too loud for us. Usually, it blocks out the majority of over-loud volume. Not this time. My ears and brain were assaulted for 3 hours (adverts/trailers/film). We could even hear sound from the movie that was playing on the screen next door (I don't think they had planes and machine guns in Victorian Britain). I had to keep closing my eyes as my senses were being assaulted far too much for my brain to cope. Most M.E sufferers tend to avoid cinemas because of the sound volume. I am usually ok with ear defenders, I was disappointed that they didn't help on this occasion. Why on earth does the sound have to be that loud?! So many health conditions are affected by volume level it is ridiculous that the cinema doesn't consider that as a factor when setting the volume. M.E., Tinnitus, PTSD (loud bangs?!) and many others that my weary brain can't think of right now.

I got home and 'died'. I was absolutely wiped out. Thanks to our 'fun' afternoon, I woke up this morning feeling like I have been run over by a truck. It is two days later and this is payback. I really don't know if it was worth it! A day at home working whilst pacing coming up.

Love,

Sally
and Foggy OBVIOUSLY
xxx

Open Letter to the Ellen Degeneres Show

Hi,

I have sent this letter via snail mail to Ellen's office in California.

Dear Ellen’s Team,

I am asking for your help. I am under no illusion that this letter will be seen by Ellen herself and so I am writing to you as Ellen’s representatives.

I am an advocate for and sufferer of Myalgic Encephalomyelitis (M.E). You will probably know it by its other name – Chronic Fatigue Syndrome (C.F.S). This October marks my 11-year M.E birthday! Not that it’s anything worth celebrating. Despite my own personal hardships, traumatic events, and ill health, I have made it my life mission to help those worse off than myself.

M.E/C.F.S affects 17 million people (very low estimate) worldwide. That figure includes at least 1 million Americans. M.E/C.F.S is the most common illness that no-one really knows about or understands.

I have been contacting you via Twitter though I’m sure my tweets get lost in the thousands you probably receive every day and so I have chosen snail mail to reach you now. I would love Foggy, my charity brand figure, to be on the Ellen Show. I have the following reasons for this:

-      -   I am a huge fan and watch most days when I am able. I was ecstatic when ITV2 started showing current episodes!

-      -   It is the biggest TV chat show in the world (I think)– I want to raise awareness in a big way – I can’t get much bigger! I would like to use your show as a platform to reach as many people as possible.

-       -   This is the most important reason. Many of Foggy’s Followers are bedbound. They write to me personally with their personal M.E stories. Every single American and Canadian M.E/CFS sufferer that I have been contacted by watches Ellen. They tell me it is usually the only time in their day when they turn their TV on and ‘enjoy life’. These people suffer from extreme light and noise sensitivity and so watching Ellen on TV is a HUGE deal. Ellen means so much to them. If I get Foggy onto your show then I am reaching out to those people. Those sufferers who believe they are forgotten about. I want them to know that I haven’t forgotten about them, that YOU haven’t forgotten about them.

Everybody knows somebody with M.E/CFS. It is an illness we should all know about. It does not discriminate regardless of age, race or gender. The youngest sufferer ever recorded was just 2 years old. The M.E ‘crisis’ is the equivalent to the HIV/AIDS epidemic of the 80s and yet trying to get people to engage and understand is a very difficult task. We face prejudice on a daily basis and many in the healthcare profession don’t even consider it a real illness.  I am managing to raise awareness one person at a time but need help to reach even further. We desperately need research, trying to get research funding is an ongoing issue. Advocates and fundraiser like me work hard to raise funding as most Governments don’t spend much money on researching M.E. THERE IS NO TREATMENT.

I would encourage you to watch the film Unrest, directed by Jen Brea. I will be holding a screening here in Portsmouth myself. This award-winning documentary shows the severest form of M.E/CFS in the form of a real-life love story. Well worth a watch. It is an American film and there are screenings all over the U.S.

Please take a look at mefoggydog.org to see what my work is all about. Foggy is a soft toy. Foggy is an AWESOME globetrotting adventurer. He was ‘born’ in 2014 and has raised over £8k for the ME Association in the UK. All money raised goes to M. E Research. Foggy is currently on his 2017-18 World Tour and is on a mission to raise £10k and travel 250,000 miles around the world spreading love and awareness. He is currently in California and has travelled around 30,000 miles so far. His current campaign ends in July 2018. An appearance on your show is on Foggy’s bucket list…please help to make his dreams come true!

What drives me to do it? One day I want someone in a white lab coat to tell me why I feel dreadful every single day.

I hope you can help.

Best wishes.

The M Word - Menopause

Hi,

Foggy wants to learn everything there is to know about M.E. I wrote about periods a couple of years back and so now, with my advancing years (I'm 41 in 2 weeks!! EEK), it seems appropriate to move on to the menopause. Sorry chaps, you might want to stop reading if you aren't in touch with your feminine side!

Early menopause has been a factor in my family health history for at least the past 2 generations. The women in my family started the menopause between the ages of 25-35. A hysterectomy was to blame for part of it but still, it was early menopause none the less. So, since the start of my 30s I have been braced for it to hit. Nothing yet, I am happy to report! I haven't had kids so that may be a factor...I am rubbish at biology so...I have no idea!

However, I think it is only right to highlight how the menopause affects M.E bodies. As I said in my Hormones blog, any hormonal changes in our bodies bring about M.E flare-ups. Hormone changes

'The Change' - Get it? :)

are a blooming nightmare. I am usually wiped out for at least a week in the run up to 'coming on' and it makes my symptoms double in severity. With that in mind, I am certain that going through the menopause will be just as rubbish (If I haven't miraculously recovered by then.....I WISH!). I am not dreading it in terms of it being a sign that I am ageing, I am actually looking forward to my periods coming to an end! But, as something to worry about in M.E terms, it is definitely playing on my mind. I have no idea what to expect and so am hoping that I will merely deal with it as it hits. The M.E Association says this on their website:

Some 70% of women experience physical, gynaecological and psychological symptoms during the menopause – some of which are the same or similar to those found in ME/CFS. So it’s not surprising to find that the menopause can sometimes cause a significant flare up of ME.

If symptoms are similar to what I am experiencing already, should I just anticipate that they will worsen? Will I be feeling doubly rough for the whole month instead of just part of it? Who knows?! If any of Foggy's lady Followers have experienced the menopause and M.E medley would you consider writing him a blog? It can be anonymous if necessary.

I've found a couple of useful articles online. Have a read.
https://www.mesupport.co.uk/index.php?page=the-menopause-me
https://www.sciencedaily.com/releases/2015/02/150204075324.htm

Love Sally
(and Foggy OBVIOUSLY)
xxxx

Brain Fog

Morning!

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

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

As you probably know by now, I now run my own fledgling business from home. I get in a pickle fairly regularly, luckily I work alone so no one else realises that I have no clue what I am doing...oh bum...I've told you all now! Some days, I just sit and stare at my filing cabinet for a few minutes.

'Hide and Seek'

Trying to remember what work I need to be getting on with, or why I came to the other end of the dining room where my desk is! Us M.E peeps also suffer from poor memory issues but brain fog is slightly different. It's almost as if your brain knows what you need to be doing but it's running 2 minutes behind where it should be! I know that being the other side of a M.E affected encounter can be very frustrating as we flounder for words or actions that are required. Unfortunately, non-ME peeps are not mind-readers!

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

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

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

Love

Sally xxxx
(and Foggy OBVIOUSLY)

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