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