My bike and M.E – am I a cheat, a fraud or reckless?!

I don’t think I’m unusual in wanting to celebrate the good things in life. I don’t think I’m unusual in preferring to showcase the things I can do on social media rather than what I can’t. Tuesday 29th August 2017 was a perfect example. It was our silver wedding anniversary. We celebrated with a second honeymoon earlier in the summer, but we wanted to mark our actual day with the family and doing something significant.

I guess a bike ride in the Peak District wouldn’t be most people’s way of celebrating 25 years of marriage! However, my husband and I always enjoyed the outdoors, sport and physical exercise. Most of our recreational time together would always involve one of these by choice – until that choice was removed when I was diagnosed with Myalgic Encephalomyelitis (ME). It’s 4 years since I had my full relapse, and by listening carefully to my body, resting (A LOT!) and sticking to a strict diet my health has gradually improved (in an undulating kind of way!). One of the hallmark features of ME is Post Exertional Malaise (PEM) Basically this is a worsening of symptoms following physical or cognitive exertion. The level of exertion is different for everyone. For people with severe ME it could be as little as brushing their teeth, talking on the phone, or reading. Fortunately, my threshold is now much higher, but I’m not immune so I still have to pace all activity carefully.

It wasn’t an easy decision, therefore, to go for a bike ride. I certainly wouldn’t have attempted it if I didn’t feel my health was stable enough. Then came the discovery of electric bikes! One rotation on the pedals and the bike was away! I had to give it a go!

It was fantastic! I loved the ease of it, the speed of it and seeing the rest of the family trying to keep up with me! I could also pedal with an electric boost which meant I only needed to give 50% effort (how I could do with that around the house!) I even managed to turn the electric off on a few short, flat stretches. The kids loved having a go on the bike too and all in all it was a perfect way to spend our anniversary.

The next morning I woke up feeling fab. I had that nice feeling of legs that ached slightly from exercise and an inner glow of a great family day out (and felt just a little smug in thinking I had found a way to enjoy outdoor activity and beat PEM!)

I shared my exciting cycling news with a neighbour only to get a less than impressed reply. It wasn’t easy to hear my big moment wiped out as “cheating”.

I’m also aware that a photo without the full story can lead many to think that there is nothing wrong with me. If I’m honest, part of me likes it this way. But when people don’t understand the consequences and the unseen parts of the photo, there is a problem. We can be seen as frauds who over exaggerate our condition, and that we just need to try and do more and not think about how we feel.*

So, how did I feel?

I had about 24 hours of feeling on cloud nine and then I suddenly hit my all too familiar wall. My legs felt like cast iron saucepans with popcorn going off in them – nothing like the nice aches of earlier in the day. The fog had rolled in on my brain and I could no longer concentrate or think clearly, I felt dizzy and disorientated and oversensitive to noises, my heart was working harder and faster, and my lymph nodes became tender and swollen. People with ME learn the hard way, that braving it through these episodes only makes it worse. It was time to put all plans for the day to bed and rest it out.

My body is so much stronger than it was 4 years ago and my PEM is less severe. These days, even with PEM, I can slowly lug my heavy body around the house and I write this post! The likely hood is that with rest, it will pass within a day or so. There was a time when far less exertion could have put me out of action for weeks, so I’m both grateful for the progress I’ve made as well as frustrated for not being able to be totally free from the clutches of ME.

It’s also hard to carry the blame of my illness. People who understand my ME often ask if I’ve been doing too much after a blip. Sometimes I have, sometimes I’ve not, but I only know that with hindsight! Occasionally I take a gamble, but usually I’m considered and responsible about what I take on and do. So, I’m not a cheat, a fraud or reckless! The fact is my body still has a glitch. It’s not easy sharing that publicly, but if it helps people understand what ME is (and isn’t) then it will give all people with ME an easier time in dealing with their illness.

Chatting with Jen Brea after the UK premier of Unrest in Sheffield, June 2017

This Autumn I will be working alongside others to try and get ME better understood by parliamentarians. This includes an opportunity to get the award winning film, Unrest shown in parliament. The incredible Jen Brea both stars and directed the film which tracts her life with ME. I was fortunate enough to see the UK premier last June and met Jen. It bravely demonstrates the many hidden and misunderstood aspects of the illness and is a great resource to educate a wider audience to the personal, social and political problems that people with ME have to face. I highly recommend it- and recommend you recommend it to others! (If you don’t blink at the wrong time you might even see me as you’ve never seen me before…!) It comes to the UK in October. (watch trailer) To find out where you can see or host Unrest click here 

I have a feeling this Autumn will be a busy period for people with ME. So I’m pacing myself ready for the new opportunities! Keep your eyes peeled for Unrest and join the conversation at #timeforunrest

*(Much of current NHS guidelines are based on this line of false illness belief and proport Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET). NICE are currently reviewing it’s guideline for ME with an decision expected in October. I sincerely hope they update it to recognise PEM, and take on board the biomedical advances that demonstrate why CBT/GET can be harmful treatments for people with ME and remove them with immediate effect)

Living with ME- My husbands perspective

Another ME awareness month arrives and I’m still blogging about life with ME! I’m now in my 4th year of recovering from my full ME relapse. 2017 also marks our silver wedding anniversary. When we made our wedding vows ‘in sickness and in health’ 25 years ago neither of us could have imagined how the years have fluctuated between the two. Therefore, this year, I decided to give my wonderful husband a chance to have his say on what it’s like being a husband / partner to someone with ME.

As a bit of background, ME is classified into Mild, Moderate and Severe. At my worst, I was top end of moderate and rarely got out of the house or could tolerate noise or social interaction. Progress has been fluctuating over the 4 years but I’m now in the ‘mild’ category and have managed to take on a 20hr/week work contract for 9 months. To maintain this I’ve had to cut out a lot of social interaction and things that most people would consider to be ‘fun’.

Even with mild ME my old life still seems a long way out of reach. There are good days; there are periods of good days, but the huge fluctuations between and within each day always frustrate attempts to get life back on track.

The NICE guideline for M.E. outlines three levels of severity – mild, moderate and severe – as follows:

• 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.
• 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. (taken from Action for ME website)

It’s also important to distinguish between tiredness and (debilitating) fatigue which might not be obvious to the viewer. For me, fatigue is generally extreme tiredness (not refreshed by sleep) which exacerbates:

Heavy ‘lead-like’ limbs (sometimes twitch, shake & ‘pop’)

Weakness – especially in legs, arms and voice

Swollen/tender glands and lymph nodes

Noise sensitivity (causing pain and exhaustion)

Increase in orthostatic intollerance* (causing tachycardia, breathlessness and increased heart rate) *Associated with POTS

Brain fog and impaired memory and cognitive functioning

A full list of ME symptoms can be found here

 

So, now I’ll let Andy have his say…! (apologies for the wind noise at the beginning for anyone who is sound sensitive!)

 

For those that prefer a written format, Andy talks about his frustration on a personal level, and guilt and regret on a wider level, in particular about not giving more time to Prof Ian Gibson (former MP) in championing ME when Andy was in parliament. This is largely at my request as I felt a lot of shame in my diagnosis in the 1990’s due to the poor treatment I received by Doctors and general misconceptions by the public. Little did I know then, how many others were feeling the same!

“I share Sarah’s frustration of people not fully understanding the condition and it’s impact, and particularly the medical profession not really knowing what it is. I really wish more people did know”

Andy also asks if there is a forum for partners/wives/husbands of people with ME to share experiences and support one another?

It’s also an appropriate time to record my deep thanks and gratitude to Andy for always believing me and believing in me throughout the fluctuations and frustrations of this illness. I know that I’m hugely blessed that we continue to live, love and laugh together – in sickness and in health…

All of the below have excellent websites for further information on ME (in alphabetical order) I’ve pinpointed a few pages of general interest:

Action for ME symptoms

ME Action net What is ME?

ME Association controversy

Phoenix Rising

 

Prof Ian Gibson’s book (Former MP and Chair of UK Government’s Science & Technology Committee) catalogues the difficulties of campaigning for ME

NB: ME stands for Myalgic Encephalomyelitis. It is also referred to as Chronic Fatigue Syndrome (CFS)- much to the frustration of many sufferers!

Please do consider sharing something about ME this month. We still have a long way in getting this debilitating condition properly understood, funded and researched.

Follow and join the conversation at #MEawareness or #PwME (People with ME) #MillionsMissing #MissingmoreGET

 

 

 

 

 

 

#MillionsMissing protest in words and Pictures

I will always remember 26 May 2016. It was the day when, as a collective community, we made the invisible, visible across the world.

I’ve already written about why I felt so compelled to protest (click here) I was relishing the opportunity to protest for myself, my virtual friends, and the global ME community. Only a severe relapse would prevent me from going.

The journey to London was humbling. I was struck by the irony of being cheered on by countless numbers of people from around the world with ME wishing me well in the protest! All of them, without exception, wished they could be there in person and the privilege of being well enough to take a simple journey to London was overwhelming.

Hilary Benn MP

Baroness Sherlock

Yvette Cooper

Seeing the shoes being laid outside the Department of Health really took my breathe away. I knew the personal back stories of some of the people represented by the empty shoes, and could only wonder at the others. What has been the cost of people’s loss in their social lives, families, careers, hobbies, passions and dreams? How can so many go silently ‘missing in action’? Who is going to take notice and care enough to help?

Sadness, loss, compassion, frustration, anger, hopelessness and desperation were all swirling around as I read the accompanying labels to each pair of shoes.

A man came to ask what we were protesting for and was genuinely surprised when I said ME. “Oh, I thought that had disappeared years ago!” he replied. It summed up the whole reason for being there. We live with an invisible illness yet some how have become invisible ourselves!

We came from different backgrounds, professions and were in different stages of life and health to sit and protest but we all shared stories that were instantly recognisable: we had all been let down by health care that has been missing for us and in many cases has caused further harm.

May 26th was the day we made the invisible, visible! Dozens of photographers lined up to take our photos and the events were filmed for Canary in a Coal mine. Department of Health staff came out of their offices and took note, members of the public seemed genuinely curious and empathetic, Members of Parliament even came and offered support. Social media was buzzing with excitement and we were trending on Twitter and Facebook.

I tried to post as much of the day as I could on twitter but in so doing missed a lot of the other #MissingMillions events that were happening worldwide but do follow the hashtag or ME Action for further coverage.

___

As I headed home to St Pancras station a guy was playing “I will survive” by Gloria Gaynor on one of the public pianos and I was soaring high! I boarded the train and read a snippet of news about our protest in the London Evening Standard and reflected on what a significant day it had been.

Self professed ‘Unwise Guy’!

Outside of our own ME bubble however, there is still a long way to go to be visible. For all the photographers that came, I’ve yet to see anything in any other newspaper about our protest. (Maybe we should start a #MillionsMissing-Missing campaign!?!) The Evening Standard’s first comment was from a self proclaimed ‘Unwise Guy’ who typically demonstrated why we need this illness properly researched, funded and understood.

Listen to LA Cooper’s opening speech here

However, May 26th was a fantastic platform to start from and I am more optimistic than ever that hope is within our life time. Huge thanks must go to ME Action and Change for ME and the dedicated small teams that made this happen. The excitement I’ve experienced seems to be shared by those that were part of the virtual protesters from their homes. I do hope we can put some of our past hurts behind us and build on what we’ve collectively achieved this week. I live in hope that one of these days it will be the stigma and disease that disappears and not us!

_____________

I’m sharing one of the stories of those that couldn’t attend the #MillionsMissing in person. Tanya Marlow was the first person I met (virtually) with ME. It turned out we had both shared mutual interests and friends in our real lives. It’s thanks to Tanya that I was brave enough to leave the shame of the illness behind me and she is a constant source of inspiration. She is also a fantastic communicator and writer. Please read her #MillionsMissing story here: ‘Why I’m giving up my tainers’

 

 

Why I’m protesting for #MillionsMissing

What is the protest for?

May 25th, 2016 will mark a global day of action for ME (Myalgic Encaphalomyelitis)* There are literally millions of people worldwide who want to stand up and be counted in asking for proper understanding and recognition for their condition, funding for research, and better training for medical practitioners. In the UK, protesters will be convening outside the Department for Health, Whitehall for a two hour silent protest. (Click here for details) Similar protests will also be happening worldwide. See below:

For many people with ME, this is far too big an ask. Many have been housebound for years, even decades, so there will also be a worldwide virtual protest so that everyone has the opportunity of being included. This will primarily involve people sending in their shoes to stand in their place or including pictures of their own.

My personal protest

I have been waiting nearly twenty years for an opportunity to stand up and be counted alongside other people with ME. That’s when I first went missing. The trigger that floored me was a virus. It was nasty but nothing that warned me of what was to follow for the years to come. Doctors made their diagnosis in the absence of research and evidence. I was told it was stress or Chronic Fatigue Syndrome and then finally concluded I was just looking for a way out of work! I tried to re-energise myself with healthy food, fresh air and extra trips to gym but my symptoms went from bad to worse and my career, busy social life and my much loved ability to exercise all went missing.

I hated admitting that I had ME and I rarely did. (ME is still sometimes unhelpfully referred to as Chronic Fatigue Syndrome) It was just so misunderstood. Fortunately my health gradually improved over the years and I made a good 95% recovery with a return to work, volunteering, socialising and fitness. I had conquered ME and the whole painful episode was behind me. So I thought…!

My protest on behalf of others

Two things changed in September 2013 which was a tipping point for me:

1.I had a full blown relapse that rendered me housebound again.

2.Social media. I reluctantly started to connect with other people with ME. I was quickly amazed how many people were out there with similar stories to my own and far worse. I was shocked how widespread and commonplace mistreatment was. There were also countless stories of livelihoods, partners, homes, careers, aspirations and friendships destroyed by this condition that has been unfairly trivialised for so long. People had been stuck in their illness for longer than my first diagnosis, yet there was still little change a decade on. I also discovered the horror of ‘Severe ME’ and how much worse this illness can become.

Research is woefully lacking in funding and consequently, patients are still being blamed for their own illness.

Biomedical research is on our side but there is still a vocal minority that believe ME is a psychological condition creating dangerous consequences and great harm from their ‘treatment’.

Nothing gets my goat more than injustice and I was discovering a group of people that had been hurt, mistreated, marginalised and forgotten for decades, on a scandalous scale.My only shame now is turning my back on a group of people who are desperate for people to believe them, invest in research and can give them hope for the future.

So, I’m relishing the opportunity to stand up as one in a million on the 25th May. Not just a million, but an estimated 17 million people worldwide who have quietly gone missing from society. 25% of these are estimated to have ‘Severe’ ME. Together, we will be making the invisible, visible and we would love to have your support. Please visit ME Action.net

Remembering my virtual community of people with ME

*To learn more about ME please visit:

Action for ME

ME Association

Phoenix Rising

 

 

 

ME awareness day 2015: Acceptance

So another year has passed since the last ME awareness day. For those fortunate enough to be uninitiated, ME stands for Myalgic Encephalomyelitis. It’s quite a mouthful but this wasn’t the reason why a name change was proposed earlier this year! The proposed change to SEID (Systemic exertional Intollerance Malaise) has been a hot topic within the ME community which I’m not going to indulge in here except to say that there is a strong, common desire to find a name that gives our illness/disease the recognition that it deserves and helps give clarity to onlookers. There are many unhelpful names that have also been attributed to our condition that I’m not even going to give print space to and the much loathed CFS (Chronic Fatigue Syndrome) only seems to muddy the waters further.

I feel it has been a positive year. It’s 20 months since my big relapse and I have improved from ‘moderate’ to the lower end of ‘mild’. I now get occasional days where I feel totally ME free, I can have many consecutive days where I feel no more than incredibly tired, but it’s not consistent and life is still far from normal. I’m still on a strict diet (gluten, sugar, stimulant free and low GI), and I take an arsenal of supplements. I’ve not returned to full time or voluntary work but I can now manage to study a full day a week; manage occasional chores around the house; finally progress with very basic exercise (1:1 Pilates). I can only achieve this by scheduling a strict activity/rest balance to my diary (including social time). And yet, despite being ultra careful, I still have unexplained periods where I crash and any of my old symptoms return: heart arrhythmia, shortness of breath, crushing brain fog and fatigue, throbbing, restless legs, weakness and shaky limbs, noise sensitivities that cause pain and increased fatigue, unexplained rashes & inflammation, sore throat and swollen glands, and disturbed sleep.

I’m writing this on the eve of the General Election. It’s the first year I’ve not been involved in a grueling  campaign for almost 20 years. As a former MP’s wife, I know about being busy. As a mum, I know about being constantly on the go and being sleep deprived, and as myself I know about working full time, being energised from physical exercise and people, and from giving my time to my church and community. All of these things bring normal and understandable tiredness. I need to be clear that this fatigue is NOT anything like ME! It’s a shame I still feel I have to mention these to counter distorted beliefs that ME is a lifestyle choice and anyone who knows me would laugh at the suggestion that I was lazy!

I am one of the extremely lucky ones in the ME community, I have seen good improvement over a relatively short period of time (20 months!) To most people my illness is well hidden. I’m very happy about that, but it still sucks!

People vary in severity of ME. At it’s worse, it’s incredibly disabling and even life threatening.

I’m extremely positive about my future. I have made a good recovery once before with this illness almost 20 years ago and I am determined to get back to fitness again but this doesn’t speed my recovery in any quicker.  In fact, experience has proved to me time and time again that acceptance is what really aids recovery, not ambition.

Acceptance is a hard word when you desperately want your old life back. No one gets there the easy way. Everyone I know with ME has tried to battle their way through it before finally conceding to acceptance but it’s a hard, arduous road.

Accepting the limitations to what I can do and how I live my life is one thing but accepting how we are treated as a patient group is quite another.

Funding good quality biomedical research is still a huge challenge but it is vitally important to help gain positive media coverage, to pressurise governments and for GP’s to be better informed and equipped to offer help and not harm to patients.

People’s experience of the NHS varies significantly but there is a long way to go in re-building patient-Doctor trust. Many have chosen to ‘go it alone’ due to being disbelieved, or after receiving hurtful, ignorant comments from the medical community. Even well meaning GP’s have given out unintentional harmful advice on the basis of assumption rather than fact which has increased the severity of a patients condition. All too often I come across sufferers who feel they have had no option than to research and fund their own recovery. This comes at great financial, physical and emotional cost that not all can afford. So whether we change our name or not, I hope that the broad medical community will help to grant us acceptance, and support us in finding a cure to this isolating, frustrating, disabling, devastating and in extreme cases, fatal condition.

 

 

 

 

 

 

 

I’m sick of doing nothing, will you do nothing for ME?

It’s exactly a year since my ME relapse began and to be honest, even I had forgotten just how crushing, disabling and life changing this illness can be.

It took me years to go public about my illness. ME is a chronic invisible illness that is still misunderstood, belittled and in many circles still seen as a psychological illness affecting those of weak character. These misconceptions make it difficult for sufferers to speak out, to get funding for research and consequently makes it difficult for GP’s to give sound advice on treatment options. Many people have suffered not only from the illness, but from bad medical advice and public attitudes. I felt it was time that these misconceptions were challenged and the reality demonstrated. I therefore want to raise awareness as well as raise funds!

This is probably one of the easiest sounding challenges you will come across, but for anyone that loves life, I guarantee it will be much harder in practice! What I’m asking you to do is – nothing!

When the clocks go back in October we gain an hour. Action for M.E are asking people to ‘Make time for ME’ I’m just asking you to donate that hour to do nothing! It’s as simple as that! Sounds easy doesn’t it?

This isn’t a lie in! You must get up, start your day and then go back to bed to do nothing. Before you think this really will be a walk in the park ( inappropriate analogy!) I must stress that nothing must mean nothing. This will mean:

 

• No radio
• No music
• No TV
• No reading
• No writing
• No social media

You have two choices whilst you rest: you can rest with your eyes open or shut! (but no sleeping!)

Maybe by now, this is starting to sound more like a waste of time?! However, there are two important reasons why it really must be nothing;

The reality of severe ME

1. for people with severe/moderate ME this is their daily reality. They are completely bed bound and often unable to tolerate any other stimulation. (hence resting with your eyes shut)

 

2.Secondly, people with Mild/moderate ME have to manage their symptoms by ‘pacing’. This is an incredibly hard and frustrating part of the illness. It involves balancing all physical, cognitive and social output with complete rest. Failing to rest and eliminate stimulation will only exacerbate symptoms or make them worse (boom and bust) Some sufferers do recover from ME and pacing is a crucial  part of the healing process. For the fortunate ones it’s a process that takes months or even years. ( hence resting with your eyes open)

In our society, we often pride ourselves on our busyness. People compete with who has the busiest schedule, worked the latest, missed most lunches etc and being still can be a challenge.

I am now well practised at pacing but it doesn’t get any easier. I am one of the fortunate ones, my health has been generally improving over the last year but the better I get the more I want to do. Pacing becomes harder, the better I become. I have a whole year’s worth of stuff I want to catch up on, yet I need to suppress my desire to constantly ‘do’ more. I’ve learnt too many times that less really is more!

An hour isn’t much, but hopefully will give you some insight into how much harder the reality of resting is when you want to ‘do’. As you lay on your bed, thoughts of what needs to be done today, tomorrow, next week will flood in; ideas will need to be written down; lists of people to contact will come to mind; planning a social activity; your motivation ‘to do’ will probably be high but will all need to be suppressed.

The busier you are the harder this challenge will be. However, ME often hits energetic, busy, and driven people. The illness may strip the person of this but the desire to still be that person remains. This is just one of the many physical, neurological, cognitive, social and emotional challenges that ME sufferers have to face daily.

So, are still up for the challenge? I’m certainly sick of doing nothing, will you do nothing to help ME?

Why not share how you got on? Post a photo of yourself with the hash tag #nothing4ME followed by the number of minutes you managed? It will be interesting to see the results!

Whether you take the challenge, donate or simply share this with others, lets show people that even doing nothing for ME can make a huge difference!

Donate to Action for ME : http://www.justgiving.com/Sarah-Reed17

To find out more about ME: http://www.actionforme.org.uk/get-informed/about-me/what-is-me