It has not exactly been 'restful'!

Hello!

Foggy is enjoying his well-earned break in Foggy HQ and while he is snoring I thought I'd write this blog to tell you how I have been health-wise to since the last campaign ended.

My 'vertigo' lasted 3 and a half months before it was finally diagnosed as chronic migraines. Which is EXACTLY what happened at the start of my M.E experience. So, after a few weeks of beta-blockers, my symptoms eased and I was able to get back to living my life. However, my body had different plans!

One week after my dizziness stopped, I travelled to Surrey for a much needed catch up/girl's

weekend. I had paced myself to make sure I was fit and well (ha!) for the drive and arrived there excited for the weekend ahead. We had a glass of wine while we were getting ready to go out on the town, ordered a taxi and headed down the stairs. Da da dahhhhhhh, I fell down the last 3 steps and landed on all fours on HARD laminated flooring. My friend, who is a nurse, was concerned and asked if I was ok, I assured her that I was. Purely because it had been so long since my last night out (probably about 9 months), I was determined to go out come hell or high water. At that point, my legs/feet had gone numb and I wasn't in pain. I was wearing heels..... we ventured out to local pubs. My mentality was to grit my teeth, hobble and get on with having a good time. Unfortunately for me, a couple of pubs had wooden floors and my, now very unstable ankles, didn't want to keep me upright. I slipped at least 3 times. As the drinks flowed more and more I started to find my clumsiness funny....I didn't laugh for long!

We ended up dancing in a club at about 11pm. I kept attempting to dance and lost count of the number of times I slipped. Thank goodness for low-level sofas breaking my fall as I toppled backwards! Luckily (?), the alcohol was acting as a kind of anaesthetic and the pain, at that point, wasn't overwhelming. However, one last stop at the bar to buy drinks put an end to the evening's frivolity. Someone had spilled drink on the floor and I slipped AGAIN, this time my, already weakened, ankle was wrenched sideways. My friend realised that I had reached my limit and bundled me outside.

Some of her medical friends saw us sitting outside the club (think '24 hours at A&E' and you can

imagine what we looked like!) and checked my foot over. A consultant friend said he would drive us to A&E to be checked over. So off we went.... 6 hours later.....
I was told I had a badly sprained ankle that would take 6 weeks to heal. However, subsequent consultants have said I chipped 3 pieces of bone off the top of my foot. I am 100% sure that I have internal broken bones but as the treatment would be the same it makes no odds now.

Anyway, I wanted to use this blog to show how M.E affects the healing process. I had my accident at the end of July and am still healing. I saw a physio consultant a month ago and I mentioned that I do M.E advocacy and asked her if me having M.E is the reason healing was taking so long. She said probably, but that there was no specific research to draw on. She said that using common sense and knowing a bit about the condition would lead her to say that it was the reason it was taking so long. Purely because M.E slows everything down and so something that would usually heal in 6 weeks could take up to 3 times longer in an M.E patient. I am currently doing hydrotherapy to try and build my muscle strength and balance but, as I didn't have good balance before the accident, I am not sure how they will gauge my progress!

While all this has been going on I have also been experiencing double vision. Now, this could 'just' be a symptom of M.E. but I went to the opticians to get it checked. they sent me for an emergency eye appointment. After a Saturday afternoon full of eye tests, the consultant said he believed my beta-blockers, which I was taking for my Migraines, were weakening the muscles in my eyes, making focusing my eyes more difficult and slower. He believed that drug sensitivity (a M.E symptom) was the cause.  He said 'what would you rather have? Migraines or very temporary double vision?'. Oooh, I get to choose?! I have decided to come off the beta-blockers as I don't like flooding my body with drugs. So, now it's a case of wait and see. I'll have to decide what action to take if the dizziness/migraines return...if they ever do.

I had planned on taking time out from Foggy to de-stress and sort my own life out but my efforts have been massively limited due to being on crutches for 10 weeks (VERY TIRING!). I still can't drive or walk far. As I type this I have an ice-pack on my foot as walking today has made my foot swell up again.

M.E affects all systems and aspects of bodies and our bodies don't stick to the medical profession's timetable. I think it's also evident that medication for M.E symptoms can lead to other problems that can also be confused with M.E symptoms.

The biggest drawback? I had to wear flat shoes to my 40th birthday party! #badtiming!

Happy birthday to me :)

Love,

Sally xxx

Pain Caused by M.E./C.F.S. and Other Conditions

Hi,

Throughout Foggy's life I have made a point of saying I am lucky enough to not suffer from M.E./C.F.S chronic pain. However, things have started to change over the past 3 months. I am currently undergoing tests and physio to try to deal with an extremely painful right arm. RSI, Carpal Tunnel and Tendonitis have been ruled out and the physio believes it to be a nerve issue. I know this doesn't 100% mean that it is yet another M.E.C.F.S. symptom to deal with but the odds are quite high! Obviously, having Hypermobility Syndrome confuses things even further when added to the mix!

I am writing this blog today because my initial physio assessment yesterday 

was quite amusing. He ran through a list of questions to rule out possibilities. However, I answered every question with 'I have that every day with my M.E so I don't know if this problem is adding to that!'. So then we moved on to 'No, my arm issue does not make that symptom any worse than usual'. A few of

the questions were as follows:

- Do you experience dizziness?
- Do you experience balance issues?
- Do you experience nausea?
- Do you experience blurred vision?....

It was a long list so I won't go through all of it, I'm sure you get the idea!

It struck me that I could have an underlying illness, not connected to M.E. but we (combination of doctors and myself) wouldn't be able to tell as M.E overlaps EVERYTHING! So much health stuff can be found under the umbrella of M.E it is difficult to estimate where M.E stops and something else takes over.

At the moment, my right arm hurts from my hand up to my armpit. Most of the pain is in the crook of my elbow though and so any time I bend my arm - typing on my mobile phone is EXCRUCIATING -  I am in pain. I have decided that once Foggy finishes on Friday I am going to remove social media from my phone. The combination of less mobile use and less laptop work for Foggy will hopefully help the problem. It won't fix it though.

It is slightly worrying that my M.E.C.F.S. is changing/getting worse but I am altering my lifestyle to adapt to the changes. My GP has said the best approach is physio and painkillers. I am not keen to start on more medication but sometimes the pain takes my breath away so it's a case of needs must. I am hopeful that a year-long break from Foggy will allow my body the chance to settle down and rest properly. My current situation is not helping my severity level either. Being unemployed and actively looking for work is stressful....stress and M.E.C.F.S. do not work well together!

Love,

Sally xx

p.s. There are 2 days left! Please donate if you haven't done so already! Donate via mefoggydog.org. Thank you xx

Celebrity M.E./C.F.S Advocacy

Hello,

I have been pondering why M.E doesn't have celebrity advocates like other illnesses do. Every charity has ambassadors that do their utmost to raise the profile of the charity at every given opportunity. I remember when I was doing the last campaign I asked the ME Association if we had one, with the hope they could make an appearance at my awareness talk. I was given a few names but there wasn't anyone with a suitably high profile. In the UK, everyone knows that Martine McCutcheon had M.E. She was a soap star/West End actress before M.E hit. She had to take a few years out due to ill health but is now working hard to resurrect her career. I can understand why she doesn't do lots and lots of M.E publicity events. 1. She probably wants to be known as more than 'the actress that had M.E' and 2. It would involve a lot of extra time and energy which, with a new baby, she just won't have.

As I have repeatedly stated in previous blogs. M.E is a common illness. I simply do not believe that an A or B list celeb hasn't either been struck down with the illness OR that a celeb doesn't have a close relationship with an M.E patient. With this being the case, I wish they would come forward and help us to raise M.E's profile globally. Someone with the pulling power equal to Beyonce, Ellen Degeneres or Rhianna would be perfect. So many people follow them during their careers, M.E would be brought to the attention to a huge mass of people.

Shameful confession time. Anytime I hear of a celeb being 'mysteriously unwell' for a split second I wonder if they have M.E and whether it could be a good thing for our cause. Let me be clear, I wouldn't wish M.E on my worse enemy and wouldn't be rubbing my hands with glee if they got an M.E diagnosis. However, I think this will be the only way that we will ever crack the raising awareness problem. Fans care about their idols....we could use that to our advantage. Cynical and horrible I know...sorry. Whenever a celeb has a cancer diagnosis there is a ripple of sympathy and an increase in donations to cancer charities, the same with Parkinson's Disease (Michael J Fox) and Alzheimers Disease (Billy Connolly). We need that.

There have been many unconfirmed rumours about A lists celebs that may or may not have had M.E. Robbie Williams (from Take That for non-UK people) is supposed to have had it when he took a step back from the limelight. He has never confirmed or denied it. M.E has a stigma and so I think it is completely understandable for him to keep it private if he'd had M.E. He is known as an

energetic, globetrotting showman...doesn't really fit with the image of M.E.

Wouldn't it be great if an A list singer held an awareness concert for thousands of people. OK, sufferers wouldn't be able to attend but family and friends could go and show support. Imagine how much money could be raised in one night? If it is good enough for Elton John and the AIDS charities then it is good enough for us!

Foggy being on stage was on his bucket list. I included it in the hope that someone somewhere would hold a concert in his honour to raise funds. I was dreaming, it didn't happen. Foggy is going to be around for years to come though so maybe...just maybe...it will happen one day!

Love

Sally xxx

Building a family

Hi, 

This blog will hopefully address the issue of M.E sufferers bearing children. Let me begin by saying that I consider myself to be exceptionally lucky; I have never had a maternal bone in my body and so having M.E is not a deciding factor in whether I have children or not. I have never cooed over a baby in my life and parenthood is not something I have ever aspired to. However, I think it is a sensitive topic that needs to be addressed. So, let me pretend that I have the desire to have 2.4 children and a 'complete family unit'.

I know there are people that are diagnosed with M.E and still go on to have the children they yearn for with mixed results. Some go through pregnancy problem free, others don't. However, I would make the conscious choice to not have them. Because of the lack of research, there are too many ifs, buts and maybes about what a future life with children would involve. I have 3 strong opinions:

1. I am not prepared to take the risk that my body would not cope with physical changes that occur during pregnancy or prepared to keep my fingers crossed that my symptoms severity would not worsen. Why have children if the process of giving birth leaves you unable to care for them as you would like to? My body reacts badly to hormonal changes during my time of the month. Hormonal fluctuations cause every single symptom to flare. Pregnancy is the ultimate hormonal shift, I am guessing that my body would react to it 10 times worse than it does every month.

2. I barely have enough energy to look after myself and live my own life. Constant demands on my time would worsen my M.E experience. Some may consider that to be selfish, that is why I do not want to put myself into that situation. 

3.IF and I mean IF, M.E is hereditary, I would not want to take the risk of passing this absolutely life destroying illness on to those who I love the most.

I do feel sad that my parents will not get any grandchildren from me but they accept my decision and acknowledge my reasons for remaining childless. Maybe that is why I have such a strong bond with Patch...he is my 'baby' and fills any emotional needs that I have.

Love,

Sally
xx

Describing the Indescribable

Hi,

I have woken up feeling very M.E'y. While I am feeling IT I am going to try my best to describe what IT feels like. In today's case, IT is extreme fatigue and disequilibrium. The combination is definitely a bit of a mind blower in terms of adjectives! My entire body seems to have turned into my android phone's energy saving mode. It's as if within 1 minute of waking my body knew that I had minimal energy reserves today and so, without my permission, has enforced energy saving to make sure I get through the day!

My body feels like vapour, as if I do not have any stuffing inside my skin. Almost as if, if it wasn't for gravity, I would float away. Contradictory to that, I also feel incredibly heavy at exactly the same time. My limbs feel incredibly heavy and immovable, my eyelids can barely stay open and blinking

feels like I have to close and open an iron gate. The blood in my veins feels very sluggish and cumbersome . My muscles from my eyes down to the tip of my toes do not feel like they are working properly. Speech feels laboured and slow as my jaw/mouth muscles use energy sparingly.

My movements seem a bit surreal, hand/eye co-ordination isn't really working today and it seems almost like I would imagine co-ordination to be like after taking LSD - less fun though! Arms and legs don't seem to be fully connected and working properly. Floppy is definitely the M.E word of the day!

My body and brain feel overwhelmingly tired and I know that by lunchtime I will reach my limit and crawl into bed. In my twenties, I was a bit of a party animal and used to feel this overwhelming need to go to bed at the end of a very good, enjoyable, night out. I used to be like a homing pigeon. I used to just go home on my own (didn't bother telling anyone I was leaving - naughty- don't do that!), get into bed fully clothed because my body had had too much fun and wasn't working properly and be out like a light. It became a running joke with my family. When I lived in Plymouth and family came to visit we would go on family nights out and I would be fine until we reached my front door and then I would disappear. My parents once had to sleep on the uncomfortable 'put you up bed' because I had crashed on my bed, the one I had spruced up especially for them to sleep in during their visit.  Oops! See? Homing pigeon...cooooo! So, anyone who gets a little bit too tipsy and crashes in bed fully clothed because their body doesn't have any oomph to get undressed knows exactly how I feel RIGHT NOW...unfortunately, there is no alcohol involved today.

Extreme fatigue gives a sense of 'I can't cope'. I can't do any more and I need to just STOP. When you have M.E there is no decision to be made about when to stop. Your body tells you and enforces stopping by making you feel so rubbish that you have no choice.

Love,

Sally xx

M.E and Me - Ryn's guest blog.

Hello,

Before M.E I had a challenging career I loved, socialised regularly with family & friends, rode my pushbike & rambled miles for fun, played a very hands-on role with my grandchildren, rarely sat down to watch t.v preferring to garden, clean the car or do housework. I rarely slowed down!  

Almost three years ago it seemed like my whole world stopped. I developed a severe viral illness leaving me bedbound, several weeks later my GP diagnosed Post Viral Fatigue Syndrome.  Being bedbound, unable to eat or toilet myself, my husband took care of me and the household while trying to

Mr and Mrs xx

work full-time. While I slept the days and nights away for months on end, he battled with his emotions, not knowing what was best to do for me and not

knowing if I would ever get better.  Life had turned on its head for him, our family and close friends. 

Six months later I returned to work on a phased return. Within six weeks I had relapsed badly & was bedbound again, fully dependent on others to support me, history was repeating itself. Weeks later and after no progress, my GP referred me to a Chronic Fatigue Clinic. Three months later, blood tests,
examinations, x-rays and Q & A’s began at the clinic before they confirmed I had Post Viral Fatigue Sydrome/Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (different names for the same illness).  I was referred for Graded Exercise Therapy and put on their waiting list for Cognitive Behavioural Therapy (ME Association standpoint on G.E.T and C.B.T). During this time I had lost my job, friendships & everything I loved about my life before M.E.   

After 9 months of no progress with G.E.T, the antidepressants I had been put on seemed to stop working leaving me in a self-destructive hell.  I became angry with my lack of progress and the illness that had robbed me of my career, friends, independence and spontaneity, my freedom to enjoy
life with everyone and everything around me.  I also felt immense guilt for the pressures my M.E symptoms put on my loved ones, especially my husband and children.    

Some friendships faded, leaving me feeling worthless in their eyes as well as my own.  A lot of the healthcare profession don’t understand M.E so what right did I have to expect friends to understand it and support me?  There were weeks when I withdrew from everyone, angry that I was feeling sorry for myself with an illness I couldn’t control.  I had every M.E. symptom (and

others) listed, I’d tried to stick to ‘Pacing’, get through ‘G.E.T’, tried alternative oral treatments, stuck to regular bedtimes/get-ups but found they didn’t work for me. Not being able to achieve these things just intensified my depression, anger & guilt.      

I stand by the saying…. it doesn’t matter what prescription you take to give you a better quality of life, it’s the quality of that life that counts. I have tried various antidepressant medications whilst having M.E. and thankfully the past month or so has been most……… restful.  Being able to let go of the negative feelings that had taken hold has meant that I’ve begun to understand my M.E. body & mind. I rest and sleep when I need to and use medication for my fluctuating symptoms. I have shared the depth of my depression with a couple of my strongest friends, whose support is gentle and encouraging, helping me to become more peaceful and accepting of my M.E symptoms and my changed circumstances.  M.E is a long, bumpy road; sharing it with them has relieved both some of the pressure from my husband and the guilt I had from putting so much on his strong shoulders. M.E may have forced my world to slow down, changed it without giving me any choice but I know I feel better when I don’t fight it, easier to role with it, enjoy and appreciate the simpler things open to me and take one day at a time   

Here are a few things that were helpful to me and mine:
The Spoon Theory by Christine Miserandino www.butyoudontlooksick.com   
Chronic Fatigue Syndrome/ME Support for Family & Friends by Elizabeth Turp  &  M.E Association. 
I use loaned (Occupational Therapy) and privately purchased equipment to help me manage day to day.

Ryn xx

Newly diagnosed

Hi,

This blog is going to address how newly diagnosed M.E sufferers will not have a clue about what is about to hit them like a freight train. I was diagnosed after 3 years of tests and being given the run around by doctors. The life altering diagnosis was given to me by a locum doctor. He said ' You have chronic fatigue syndrome, don't worry about it. At least you haven't got M.E...that is sooo much worse'. I was offered no treatment or advice at that point and just sent away to deal with it myself. It didn't occur to me that there would be support groups/charities available to offer help and advice. I simply struggled on for a few years until a GP I was seeing for another issue recommended Pacing therapy. As I keep saying over and over again, M.E/CFS has a varying degree of severity of symptoms. I am a mild sufferer. 

The NICE guideline for M.E. outlines three levels of severity – mild, moderate and severe – This is the definition of mild:

People with mild CFS/M.E. are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week.

The definitions of moderate and severe are as follows:

People with moderate CFS/M.E. have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work, school or college and need rest periods, often sleeping in the afternoon for one or two hours. Their sleep at night is generally poor quality and disturbed.

People with severe CFS/M.E. are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise.

I consider myself to be very 'lucky' to ONLY have mild M.E. I can still attempt to live life in a very restricted way.

Last year, on International ME Awareness day I gave a talk at the University of Portsmouth. I met a number of people I hadn't met before. One of these people was Gill. She was a newly diagnosed sufferer who was, at that point, still able to work. We have since built a relationship through M.E. Initially, we met for coffee and Gill was picking my brains for information about M.E. Like me, she hadn't been given much advice or guidance by her GP. She didn't know about Pacing etc. I gave her a few bits of information that I hope she found useful. I know from that point she started to 'learn' stuff by following Foggy - that makes me very happy.

One activity that has been severely restricted for Gill has been watching her beloved Portsmouth FC. She goes to home games and before each game she meets up with other fans socially. On our first meeting, I told her that those football days must be incredibly draining for her. She said it was fine because her husband made sure she wasn't stood up for long periods of time. I

Foggy LOVED watching PFC too!

explained that simply being in a noisy room, talking, using your brain to hold conversations is using a lot of energy. I suggested that she might have to sacrifice the before the match socialising and just head straight to the match to save energy. I know it was something she didn't like to hear but, if it was me in that situation, I would be wiped out throughout the game and unable to enjoy what was going on around me. I believe that, as I did years before, Gill believed she could push herself through any discomfort and just deal with the consequences later. She has an incredibly supportive husband and I'm sure they have now worked out a way for Gill to enjoy her football and take care of herself at the same time.

I regularly email Foggy Followers that have had a connection with my campaigning. When I emailed Gill recently to check on her wellbeing this is the reply I got.

Hi Sally
Thanks for email.  Sorry to hear you're stilling fighting the Labyrinthitis.  I do think of you, and catch some of your Facebook entries but unfortunately I've continued to go downhill somewhat. I've not got back to work (since Oct 15) and now it looks like retirement on ill health grounds. I've gone down to half pay so hoping it can be sorted before wage stops altogether......I can't believe it was a year ago that I attended your ME talk at the University.  I could never have envisioned how I would deteriorate.  I think that's happened because it took so long to diagnose and I fought to keep going for so long.

I feel her email demonstrates how M.E ebbs and flows. It is impossible to know how your body is going to feel from one day, month, year to the next. Gill is now receiving guidance from a M.E/CFS support service so hopefully will be able to try new ways to 'manage' her symptoms.

Other Followers that I have built relationships with have improved dramatically since Foggy began. I am always thrilled when I hear from previously housebound sufferers that have started to occasionally meet friends for coffee or *gasp* gone shopping to buy...shoes! Let me stress, this isn't because of treatment they have received from doctors. This is because they have managed their symptoms, rested, done mindfulness and restricted their lives in such a way that their body had time to recharge and slightly recover. They have not taken a magic pill that has made their symptoms better. That pill does not exist.

Love 

Sally xxx

M.E is not a white, middle class illness.

Hi,
I have always promoted the fact that M.E can affect anyone, anywhere on the globe. It does not discriminate against race, religion, age, sexual orientation or gender. I have frequently asked sufferers and support networks to write Foggy a blog post of their own personal experience of M.E. I want to make sure I show how widespread and varied the illness is. Since Foggy's creation, only white sufferers have written their M.E stories for Foggy. I have received blogs from sufferers around the globe - Germany, Australia, USA. I believed this was enough to show diversity. I have to admit that having worked within a diverse and multicultural university, I don't see race, I see humans. I had not realised that black and ethnic minorities were not being represented by Foggy. This is something I now want to rectify.

This blog was triggered by the following tweet this week. There was a Twitter conversation, not including me, and I happened to see this tweet in my news feed.

'In fact, charities, journalists & advocates are actively promoting the bias by only interviewing white, 1st world patients'.

I butted into the conversation with this:

'I ask for comment from ANY M.E patient. Only white patients have come forward. Not intentionally excluding any race.'

Rightly or wrongly, I felt the need to defend myself. 

I have been pondering this for a few days and decided to do a bit of research. I had a quick scan of my Twitter followers - no black/ethnic minority faces. Admittedly, any of the accounts without photos could be black/ethnic minority. It can be near impossible to determine someones ethnicity from a Twitter handle or Facebook name. I googled ethnic minority Myalgic Encephalomyelitis and found a number of academic articles. (see links below). 

International Journal of Epidemiology
Extracts:

'CFS was historically thought to be most common among White women of higher socio-economic status. However, some recent studies in the USA suggest that the prevalence is actually higher in some minority ethnic groups.'

'Results Meta-analysis showed that compared with the White American majority, African Americans and Native Americans have a higher risk of CFS... minority ethnic groups with CF and CFS experience more severe symptoms and may be more likely to use religion, denial and behavioural disengagement to cope with their condition compared with the White majority.'

So, not only does M.E/CFS affect non-whites, it is actually more common! I was surprised. I have always believed that all ethnic groups were equal in terms of prevalence of the illness. The difference is that whites tend to turn to conventional medicine whereas minority ethnic groups don't acknowledge the illness, turn to faith or hide themselves away. If this is the case, the estimated global number of sufferers is certain to be a lot more than 17 million.

When Foggy visited Kerala with 'Uncle' Derek, Derek promoted M.E awareness and struck up conversations with Keralites. They said they had never heard of the illness: Derek left a comment on one of my blogs:

I spoke to 3 or 4 Indian friends during our Kerala holiday when they each asked what Foggy was all about? When I explained it seemed that they had never quite heard of the condition or even knew of anyone suffering with it. Possibly because it is yet to be discovered/diagnosed in that continent, or that their lifestyles are so different there, that anyone who would dare to show any degree of tiredness or weakness, would just be considered lazy!? I don't know but it would be hard for any possible sufferer there that's for sure - mainly because the majority of women do daily physical work of some kind and need to provide for and to keep their families alive. I would feel for anyone who does match the ME criteria that's for sure, as it would be the next thing to hell for them poor things!

At the time, I wasn't sure what to make of this as it is IMPOSSIBLE to do mind over matter with M.E....how could these people push through and try to live normal lives? However, if there is a stigma and a need to keep quiet about having the illness we will never truly know the true extent of M.E on a global scale. I now strongly believe we should reach out to or create ethnic minority support groups. Let these sufferers know that it is a real physical illness and, although there is no treatment, there is support out there. Charities and advocates are working hard to raise awareness but don't seem to be reaching a large number of sufferers who may not even realise that they have M.E.

If any Foggy Followers with an ethnic minority background would like to write Foggy a blog please get in touch. Team Foggy would love to hear from you!

I have brain fog today and hope that this blog made sense!

Love
Sally xx

Further reading:

https://www.researchgate.net/publication/236907159_Diagnosis_and_management_of_chronic_fatigue_syndromemyalgic_encephalitis_in_black_and_minority_ethnic_people_a_qualitative_study

Dizzy

Hi,

I have a new piece of furniture in my bedroom and it has been the perfect excuse for a de-clutter. So, yesterday I, in half hour bursts of energy, threw stuff away and sorted old books. I came across my 2008 diary. My M.E symptoms began in 2008 and it makes for an interesting read! I'd forgotten a lot of things that happened. That diary is the inspiration for this blog post.

I have been suffering from Labyrinthitis/Vertigo for the past 9 weeks. This is exactly how my M.E symptoms began in 2008 (Labyrinthitis-Vertigo-permanent migraines). I will be going to my GP

next week to ask for new medication. Lessons learned from last time around should hopefully prevent months/years of tests and specialist appointments. Last time it took 2 years to be diagnosed with permanent migraines. Migraines are a symptom of M.E. All of my symptoms were improved with the beta-blocker Propranolol. I am hoping that my GP will be able to look at my medical notes and find the letter from the neurologist saying if I have these symptoms in future to prescribe me Propranolol. I really hope I don't have to start back at square one with new tests.

This is an extract from my diary - Tuesday 1st January 2008

2007 has definitely been one of my worst ever years despite getting my masters. This illness is making my life drain away and it doesn't feel like I have much left. 13 months of misery is too much to bear without being diagnosed. It feels as if I've lost most of my friends because I can't put the time/energy into those friendships, it now grates every time I have to decline invitations due to my health. I just want to be diagnosed in order to be able to control my symptoms and subsequently my life.

This was around 2 years before my M.E diagnosis. Little did I know that even a diagnosis wouldn't give me control. M.E is like a blob of jelly, it constantly changes shape and fluctuates minute by minute, it is very much an uncontrollable illness.

Extract - Monday 17th March

Had a bad attack last night. Thank god I wasn't at work. Yet again it started with crunching in my ear, then the room started spinning. I wasn't sick even though I got mum to get me a bucket. Lasted a couple of hours this time. Couldn't stop crying. Sick of being ill. Why can't I just get on with my ****ing life?! Got specialist on Thursday, praying he can help before I lose my mind. Off sick for the next couple of days as I feel washed out and ear still crunching.

At this point I hadn't been diagnosed with permanent migraines. Touch wood, I haven't had a migraine for about 5 years. I get all sensory migraines that affect EVERYTHING. I can't stand, my vision is like a kaleidoscope, I lose my hearing, I can't smell anything and I have diarrhoea and vomiting all at the same time. These symptoms start and reach their peak within 30 seconds of starting. It's a very scary experience. My body just seems to implode. I am very fortunate that my migraines have only happened in the evenings when I am at home. I lived in permanent dread that I would be out in public when an attack occurred. CBT helped to manage my anxiety and fear of collapsing in public. Which is why now, in 2016, I am hoping I can nip my dizziness in the bud before a full migraine happens.At the moment I have dizziness, nausea and a crunching sensation in my left ear. Exactly the same as in 2008 at the beginning of having symptoms.

I am so glad that I used to sporadically write in a diary. My memory issues mean I forget the advice, medication and diagnosis given by doctors. I am hoping if I take my diary with me I can show my GP that my current health is just history repeating itself.

Love,

Sally
xx

Banks and businesses

Hi,

I have made a rare trip out of my house this morning to get some admin done. My dad (thanks Dad - I still can't drive because of dizziness) drove me into town and I went into my bank branch for an appointment. The woman in front of me had a walking stick, she was told to go into the waiting area next door and the person she was due to see would come and get her in a moment. I was given the same advice when it was my turn.

The woman with the walking stick was taken through a side door on the ground floor. I was met by a lovely member of staff who said we would be going to a room upstairs. I didn't really think anything of it until we reached the third flight without stopping. There were 4 flights of stairs to be climbed before reaching our meetings room.

My M.E advocacy head kicked in and I couldn't help myself. I said 'What would you say if I told you I have an invisible disability?' He looked confused. 'Just because I don't have a walking stick doesn't mean I have no issue climbing stairs'. I asked him what would have happened if I had been in a wheelchair. This is when I found out about the meetings room on the ground floor. Apparently, if bank

staff had known (i.e. seen) my disability or mobility issue then a ground floor meetings room would have been used. I didn't want him to think I was being deliberately argumentative so I explained about being an M.E advocate and suggested maybe in future staff could ask if there was a reason a client can't be taken upstairs for appointments. He said there used to be a lift but it broke down and was never fixed due to financial constraints. I received excellent customer service during the appointment and was happy with the treatment received....once I was upstairs!

I have spoken in public before about how businesses should turn accessibility for people suffering from invisible illnesses into their USP (Unique Selling Point). Publicise that you understand not all disabilities are visible and that additional assistance is available. Help should be discreet and available quickly and easily. At a library staff training event, I suggested putting chairs at the reception desk for those people who cannot stand for long periods of time. There are many subtle tweaks that can be made in customer service environments to help people with invisible illnesses. Businesses just need to be educated on how they can help. The library I spoke at adopted one of my ideas and gave me positive feedback on the results a few months later. They promoted the idea of 'Can we help you save a spoon?'. Students with chronic illnesses knew what that meant and could discreetly, and with minimum fuss, get the help they needed.

SO many people in society nowadays have chronic illnesses, it's time businesses and customer facing establishments wake up to that and give us the help we need.

Love,

Sally
xxx

Love Life

Hello!

I've told Sally to be brave and write this blog. She has just read this Chronic illness blog post and I want her to tell her story of dating with M.E. So here goes....

Hi,

I never dreamed that I would be nearly 40 and still single. Like much of the single population, I have to resort to internet dating. My friends don't have any single friends they can introduce me to. I am now finding that a lot of people my age are newly separated and come with baggage in the form of children, fraught divorce proceedings or horrible ex's that just like to cause trouble

(women can be nasty can't they?!). Men are usually flabbergasted when I say I am single, never been married and don't have/want children.  I have my own baggage...it's called Myalgic Encephalomyelitis. Unfortunately, I was single when I was first diagnosed. I didn't have someone who was already in love with me who would be there through thick and thin (I know this isn't always the case but there is an added sense of security). 


Like the woman in the blog mentioned above, I am always upfront about my M.E on a first date. I don't go into minute detail but I go into just enough for them to realise it is a major part of my life. I usually get 'oh, that's being tired isn't it?' I expect that, that's the common misconception. I usually just say it affects my energy levels and restricts my daily activity. Just so they understand why I may have to cancel dates or go home early. Every man I meet says they 'don't have a problem with it' and aren't put off. In my experience, they take my lead. I take my advocacy hat off on dates and don't like to ram facts down their throats! They digest the little bits of information I dole out when situations crop up and try to fit in with my life as best they can.  M.E. has never been the reason for a relationship to end but it has been a factor in the failure of a relationship. Lack of energy is a hindrance when trying to build a lasting relationship.

I have recently ended a 7 month 'thing' with a lovely guy I met on the internet. We dated for a while and then it was on/off/on/off. There were a number of issues that we had to deal with, one of which was the fact he lived an hour away. We compromised and met half way when we met up but even a half hour drive to see him meant I wasn't at my gorgeous and eloquent best!  I started to notice that he wasn't asking questions about my health. I liked that he didn't just see me as a poorly person but was getting increasingly frustrated that he took little interest in that part of my life. I am a M.E advocate and yet I couldn't get 'my man' to take an interest in M.E! He wasn't even remotely interested in Foggy (*Foggy* sob hic). He was the person I did the essay for over Easter weekend (see previous blog post). I pushed myself and subsequently made myself incredibly unwell for someone who said he 'didn't get' my illness. He was puzzled a few weeks later when I said I still had the ear infection. 'Oh, it's THAT bad?' was the response I got when I said I was still dizzy and it was having a knock on effect on my M.E. He couldn't get his head around how his essay could have caused my ill health.

I am still poorly with Labyrinthitis now 7 weeks on and I am no longer in touch with him. I realised that I need someone who has compassion and a willingness to learn. I don't want to only be known as someone who has M.E as my illness does not define me as a person. However, any future 'Sally's other half' has to realise that adjustments need to be made and my symptoms will affect our lives together. I find I am incredibly judgemental on internet dating. I steer clear of anyone who seems to have little or no compassion. I don't want to have to explain my every action and risk being judged.

I am a hopeless romantic but have never had much luck in the romance department. As time goes on, I am starting to hope that I don't become the old spinster who lives down the lane with lots of cats and gin. Having M.E is an obstacle that needs to be overcome in the dating game. Not having energy for a social life is definitely a hindrance, how can single men see me for the catch that I am when I am hidden away in my bedroom resting?

Massive shout out and lots of love to those husbands/wives/partners of M.E sufferers who show compassion and understanding to their other halves. I hope to find my own special someone one of these days!

Love

Sally xx

People Pleaser

Hello,

I am guilty of 'do what I say, not do what I do'. I am always banging on about pacing and taking care of yourselves. However, my actions over the Easter weekend have resulted in 6 weeks of additional illness. Let me explain.

One of my close friends was on a very important course for work and had an incredibly stressful week with presentations and mini essays. I had been providing emotional support but could tell he was reaching his limit. So, when he was told he needed to research and write a 3,000 word essay in 3 days I offered to help. Initially, the help was supposed to be a bit of research, guidance and proofreading. I

was relishing the thought of using my brain again, unemployment is starting to make my brain go slightly mushy. The topic was Russian history - perfect!! Both my BA and MSc dissertations were on the subject of Russian culture and politics and so I threw myself in to help him.

Unfortunately, my friend has no academic experience and no knowledge of Russian history. So, my couple of hours help and support turned into 3 days (the whole Easter weekend) of talking to him on Skype, researching, getting him to explain his own view of the subject and writing the essay all at the same time. SENSORY OVERLOAD!!!!! I SHOULD have stuck to an hour a day and explained my self-enforced limits but I didn't. I pushed myself. I could feel my body and brain wilting but I was enjoying myself! I love history and research, yes I am a nerd, and thoroughly enjoyed every minute. 

My body began to shut down in the following order:
1. Face became hot and flushed
2. Headache
3. Glands became swollen in my throat
4. Sore throat
5. Voice became husky
6. Heart started to race
7. Palpitations
8. Overwhelming need to get horizontal
9. Sense of confusion/disorientation
10.Exhaustion
11.Unable to feel arms and legs fully.

My friend regularly asked if I needed to stop and rest and kept saying he didn't want to make me unwell. I did rest regularly but found it too difficult to turn my brain off and so it wasn't quality rest. Even when we weren't on Skype I was still thinking about the essay and what needed to be done next. I do not blame my friend for making my M.E flare up, my energy management is my own responsibility and I should have paced and said 'NO' when I started to feel heightened symptoms. As the title of this blog suggests, I am a people pleaser. I put other people's needs ahead of my own all the time! This is something I need to start rectifying or my pacing techniques will never work. Pressure from other people causes me to push past my limits daily. Whether that is unpacking groceries, taking Patch for a walk or helping with academic work. I impose limits on my own personal daily activities and when I have no external input my symptoms are manageable, but the second someone asks for something from me my best intentions fly out of the window!

I was fully expecting a couple of days of 'Payback' and that is what I got. However, on day three.....Labyrinthitis hit and I was unable to stand up without falling over. My body was obviously so run down that it became susceptible to infection. Labyrinthitis was the illness that I 100% believe triggered my M.E 10 years ago and so I have been incredibly worried about whether this infection will have a further negative affect on my M.E severity. I have been dizzy, disorientated and nauseous for 6 weeks. As my body has fought the infection my M.E symptoms have also flared up, that is to be expected. I do not know how much longer the ear infection will go on for but.... come on...I have a (M.E. restricted) life to get on with!

I am bitter. In the past 6 weeks I have managed to leave my house maybe 6 times and still can't drive due to disorientation and lack of spatial awareness and job hunting is impossible. However, my friend's life has gone on as normal. He got his mark back - it was an A-  (well done me) and has been on several weekends away, nights out, work activity days since and the 3,000 word essay seems like a very long time ago....to him. People pleasing, in my case at least, is always one sided and I always seem to get the thin end of the wedge.

Love,

Sally 

xxx

'Super-fit'

Hello,

Myalgic Encephalomyelitis affects people in all areas of society. Young, old, rich, poor but also the 'super fit' and those people who would rather poke themselves in the eye with a big stick instead of *gulp* go to a gym!

With his in mind, today's blog will concentrate on previously 'superfit' M.E sufferers.

This week, I stumbled across a YouTube clip from 2015  Life with ME/CFS | Rugby league captain Richie Barnett I loved it! It was a refreshing change to see a positive, matter of fact, uplifting talk from a M.E sufferer. There was no emotive music or powerful words on the screen, just Richie talking honestly about his ongoing M.E experience. I found it profoundly moving. Now, let me make this 100% clear. I would not wish M.E on my worst enemy but have been hoping that someone in the public eye would come forward and talk openly about their symptoms and how M.E affected their life. This YouTube clip is perfect. Richie was an international Rugby League Captain and was known around the world in sporting circles. His life story clearly flies in the face of any theory that only sickly people get struck down by this dreadful illness. This 'super fit', dare I say very attractive ( ;), man was struck down in the prime of life.

I can understand why 'celebrities' would not want to come forward and admit to having M.E. As we all know, there is still a huge stigma with our illness. We are still seen, by some people, as malingerers and idlers. Since starting Foggy, my openness has occasionally bitten me on the bum, particularly now I am in the job market. I have been warned by employment advisors to be careful about declaring my illness on my C.V/job applications as 'we are all aware that overt discrimination exists...'. Sensible advice maybe but when I am openly telling everyone and anyone around the globe about my illness I am 100% opening myself up to discrimination. I can only hope that future employers see me for the skilled and intelligent person that I am and can see past the veil of ill health.

Foggy's eagle-eyed social media followers will have seen that I am looking for ex-military personnel

who have been medically discharged due to ME/CFS. I would like to highlight that these, again 'super fit', men and women are not immune to the illness. I would be interested to hear how the military establishment dealt with the invisible illness and how these sufferers are dealing with civilian life.. I have many military friends who find it extremely difficult to understand M.E. They are used to amputations and bullet wounds which can be overcome with mind over matter.
M.E cannot be overcome by mind over matter.
Some of my military friends have spouses/children/friends with M.E and initially found it hard to understand how you can not 'push through it'.

Personally, I would say M.E sufferers are some of the strongest people on the planet! The daily need for resilience and the level of inner strength required demonstrate that we are not weak, even if our bodies and minds are letting us down.

Love,

Sally (and Foggy.....obviously)
xxxx

Why ME? What makes me so different?

Hello,

One of my internal questions that has the ability to drive me to distraction is 'Why me?'. So many of my friends regularly catch bugs and infections and get back to their pre-illness lives within a short period of time. I have fabulous friends, many of whom are physically fit, driven professionals who work long

hours and burn the candle at both ends. So what made me different to them? How come Myalgic Encephalomyelitis (M.E) chose to mess around with my life and not theirs?
Let me stress - I would not wish M.E on my worst enemy let alone one of my wonderful friends.
I have lost count of the number of times I have told friends to not push themselves too hard or to not rush back to work too soon in case it causes further repercussions. In most instances, my advice is ignored and they just recover and move on. I think, perhaps, this is the reason many don't understand the nature of M.E. How can it be caused by a virus or injury that anyone around the world could have had? This is why research is needed. There is something in me, whether that is in my DNA, gut or other part of my body, that didn't recover post-virus. 

No tangible link has been established amongst sufferers and so, at the present time, I believe it could happen to anyone, anywhere. So, I will continue advising friends to take it easy and to be kind to themselves because it could happen to anyone.

Love

Sally x

The 'Others'

Hi,

From day one of Foggy's creation, I have ensured that his campaigns are positive to ensure maximum engagement with his Followers. My theory is that even people who know nothing about M.E, it's history and current internal politics, will love Foggy and learn whilst having fun. At the moment, there is a trend on social media to highlight the very real, negative points of M.E in the hope that, as with cancer, non-sufferers will see how dreadful the illness is and empathise/sympathise//understand/help create change. However, I strongly believe this is not the best way forward.

The 'Others' refers to people that have not been affected by M.E, whether as a sufferer, carer, relative or friend. I'm giving them that title because of the inclusive bubble we seem to have created around ourselves that excludes everyone else. I agree 100% that forums and networks are very important for sufferers and carers for support and information reasons. Unfortunately, these sites can be so inclusive they do not help to raise awareness externally. Seriously, do you think that someone who wants to learn about M.E will spend longer than 2 seconds reading the latest arguments and social media bickering about what M.E should be called or whether the latest research was a waste of time? Negativity does not lead to engagement.

If we are going to successfully progress forward in terms of awareness and subsequently research funding, We must make M.E as inclusive and accessible as possible. Stressing the basics rather than the intricacies of an already extremely complicated and multifaceted illness will help 'the Others' understand the phenomena that is Myalgic Encephalomyelitis. As a community, we are very good at supporting each other and offering a caring word when desperately needed. However, we seem to be alienating the very people that we need help from whether that is financial or emotional. Many of us can't work and are on benefits. It is a fact that most charitable fundraising projects come from sufferers, carers or our families. We need to widen that circle to end the constant struggle to raise research funding. 

It is bizarre to me that, in the main, the people with the least energy (sufferers) are having to do their own fundraising to pay for research into their illness! We need more of the 'Others' to understand and appreciate that it could happen to them. That M.E is so common, there is a kind of 6 degrees of separation, they WILL know someone who has been struck down with it. Whether that is a relative, friend, work colleague or someone they knew at school. The cause is not known so no preventative measures can be taken ie. diet, lifestyle, drugs. With that in mind, everyone should be concerned that the seriousness is not being addressed by many governments and health authorities. 17 million people worldwide is too big a number to be ignored and misunderstood.

At Foggy's launch back in July 2014, I was the only M.E sufferer in the room. The 'Others' were in the majority. Overall, I have encountered a willingness to learn and empathy.

They all wanted to learn about the illness, since then these lovely people have been immensely supportive and have helped with my fundraising. This is an example of my reasoning. Inclusion of everyone will only lead to progressing forward. Open up and let people in, yes there are doubters and negativity has to be endured from some quarters but on the whole support and a willingness to learn can be experienced too.

It has repeatedly been said to me that donations are low because sufferers don't have much spare cash. It is a fact that the 'Others' made up more than 80% of donations during the last campaign. This, again, stresses my point that these fabulous people should not be excluded from our cause. True, they do not understand 100% of the illness but then does anyone? All of us experience a wide range of different symptoms to varying levels. It is hard for us to understand them let alone someone who only sees the 'invisible illness'.

Love,

Sally xxx

Bungalow

Hi,

I have a thing about stairs. I just don't like them. I have had too many accidents involving falling up...or down...a set of stairs for it to be funny!  I have made it my life's ambition to live in a bungalow or at the very least a ground floor flat with the bare minimum of trip hazards! 

I have always been clumsy, throughout my childhood years, I always had bruises and scrapes from falling over and bumping into things. But, in the past 10 years, a couple of years before M.E hit up to now I have broken a few

bones and given myself concussion from the evil that is a staircase!

From an M.E. point of view, stairs are absolutely not good for my health. Disequilibrium/feeling a bit giddy/low blood pressure and limited spatial awareness has lead to so many stumbles halfway up a flight of stairs. My brain not knowing where the last step is has caused so many issues! Don't even get me started on the

Mount Everest

energy required to put one foot in front of the other to climb stairs. Why do you think people have physio post stroke or after a major injury to be able to climb stairs independently. Stairs are tricky.

I have lost count (it's in the thousands) of how many times I have got halfway down a flight of stairs only to remember the thing I had forgotten to do upstairs. I know that happens to everybody. The act of forgetfulness isn't reserved purely for people with chronic illness. However, the sheer level of *ARGHHHH* that comes with the knowledge that A. you forgot something B. have to manoeuvre 360 degrees without falling over and C. that you need MORE energy to go back up or to think of a plan B(get someone else to do what you had planned on doing) is exhausting!

I live with my parents. This being the case, most of my possessions are in my bedroom, which is upstairs. EVERY DAY, when preparing to leave the house, I have to go upstairs to get something. Whether that be a pair of shoes, sunglasses, handbag and a lot of the time a combination of things. Do you think I remember everything in one trip? NO. So, by the time I do eventually leave the house, I have wasted at least 20% of my energy going up and down blooming stairs!

My energy has flat-lined a number of times midway up a flight of stairs. It's a bit scary when that happens but I find just resting for a minute gets me to the top. Sometimes a flight of stairs in a department store can be my own personal Mount Everest challenge! Muscle fatigue is also an issue linked to climbing stairs. Stair-climbing can turn my legs into slabs of concrete that are too heavy to lift. Not because I am unfit but because of the level of energy required to do something that everyone else takes for granted.

Love,

Sally xx

Back to Basics

Hi,

Real Madrid

Foggy is currently in Spain for the Real Madrid vs Sevilla football match

tonight. Going to this match means that, so far in this campaign, he will have done sport on two different continents. Next week he is heading to Cape Town.....Africa will be the third continent to be Foggy'd!

This blog post is going back to basics. Since ME Foggy Dog was created, I have written about the human side of M.E. Today's blog is literally going to tell you about M.E as a whole by using extracts from the M.E Association website (www.meassociation.org.uk). 

'All types of people at all ages are affected. Severe and debilitating fatigue, painful muscles and joints, disordered sleep, gastric disturbances, poor memory and concentration are commonplace. In many cases, onset is linked to a viral infection. Other triggers may include an operation or an accident, although some people experience a slow, insidious onset'. 

'In some the effects may be minimal but in a large number, lives are changed drastically: in the young, schooling and higher education can be severely disrupted; in the working population, employment becomes impossible for many. For all, social life and family life become restricted and in some cases severely strained. People may be housebound or confined to bed for months or years'.

'Most people with ME/CFS fall into one of four groups:

• Those who manage to return to completely normal health, even though this may take a considerable period of time. The percentage falling into this category is fairly small.
• The majority, who tend to follow a fluctuating pattern with both good and bad periods of health. Relapses or exacerbations are often precipitated by infections, operations, temperature extremes or stressful events.
• A significant minority, who remain severely affected and may require a great deal of practical and social support.
• A few, who show continued deterioration, which is unusual in ME/CFS. When this occurs, a detailed medical assessment is advisable to rule out other possible diagnoses'.
• (Extracts from http://www.meassociation.org.uk/about/what-is-mecfs/)

This week, I created an online poll on Twitter. I wanted to know how much Foggy Followers felt they had learned from following Foggy. I have been pleasantly surprised by the poll results received so far. There are a number of people, however, who still do not 'get it'. This is completely understandable. M.E. is an incredibly complex illness to understand. With so many symptom combinations to get your head around it is like trying to hold a blob of jelly still. Constantly moving and changing. I hope that over time more people understand the nature of M.E and Team Foggy's mission of raising awareness will have been achieved.

Don't forget to sign up for Foggy's email newsletters! Weekly newsletters start today. Please sign up via mefoggydog.org.

Love,

Sally xxx