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