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)

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Millions Missing Protest, London 2017 – in words, pictures & video

No doubt most of us are still recovering from ME awareness day, so this is a short post to share a flavour of the day. The great beauty of the Millions Missing protest is that everyone can join it at some level. Due to the very nature of the illness, few are able to attend a protest in person. However, many sent their shoes to ‘stand’ in their place, and many more did virtual protests by placing their shoes on their doorsteps and sharing #MillionsMissing from their beds. It’s impossible to keep up with twitter at a protest. The physical protest may well be the impetus but it’s the message that’s so important and its impact can only be realised from working together whether it’s on the streets or from our homes and beds.

 

It was only 8 months since our last protest, but it feels as though the ME community is gaining momentum, confidence and impact. I was particularly keen to protest in some form this year to give a final push for biomedical research ahead of the renewal of the NICE guidelines (due to be reviewed this summer).

Catherine Hale delivering speech

Catherine Hale gave a fantastic speech explaining the neglect people with ME have had to endure, not just because of their illness but in the ‘treatment’ they receive. Do have a read of the full transcript here. PACE continues to be a dirty word in ME politics and the implications are entrenched in our struggles.

You can also find out more about the StopGET campaign and sign the global petition at StopGET.org (NB you can sign this even if you’ve already signed the UK petition)

 

 

 

Millions Missing protest, London. Photo credit: Andy Reed & Sean Wilson

I was really encouraged by the level of public engagement on the street this year: some took leaflets; some stopped to chat about someone they know with ME; some wanted to know more; many stopped to look, read, take pictures, check out the Millions Missing hashtag, and there were quite a few tourists who politely took a leaflet and must have wondered what on earth it was all about! Our short spurts of chanting even gained the attention of those on the open top busses!

 

It’s always encouraging when healthy allies endorse our cause and with the help of politicians, actors and a whole army of Millions Missing we did manage to trend on twitter with #MEawareness !

 

 

Photo credit: Sean Wilson

London Live TV interviewed a few of us throughout the protest and gave me some helpful questions to answer! Other than than, yet again, our main success was confined to social media. Maybe it’s because we coincided with the breaking news of the NHS cyber attack and were in the middle of a General Election campaign, or maybe we are still up against a media that doesn’t want to hear our cries of neglect and calls for recognition. One thing is for certain, we are not going anywhere and we will continue for as long as it takes.

 

However, it was encouraging to see that Scotland had a particularly successful ME awareness day and received great coverage about the protest on BBC radio, the press and even secured a debate in the Scottish Parliament.

It was great to have my husband with me for this protest. I also put him to work to help promote #ME awareness by doing a video blog of what it’s like living with someone with (now mild/moderate) ME. It was my most successful post of all time and reached across 26 countries (which of course I’m delighted about-all for the greater good!! ;-)) If I had known it was going to be that successful I would have prompted him with a few extra things to say!!

 

For those that couldn’t be at the protest in person, I’ve put together a short montage of the day. Hopefully this will give you a bit more of the ‘feel’ for the protest in London:

I’m hoping that by next year NICE will have scrapped GET/CBT from it’s guidelines; PACE will be retracted; and that there will be significant funding for biomedical research. If not, I’ll be back!

Being so heavily involved in the Millions Missing protest meant I missed out on protests in other countries. Other ME charities and organisations were also planning lots of other great awareness raising events with the general public, GP’s and medical professionals. I’m a collaborator and my protest was very much to support the ongoing work that the vast majority of our charities are already doing and calling for. So, how was ME awareness day for you? I would love to hear your highlights and for you to showcase what you were involved in? If you are new to ME, what struck you most? (either about the illness or the awareness campaigns)

Special thanks must go to L.A Cooper who worked so hard in organising the London protest, ME Action Network  who helped make all the global protests happen, and of course the Millions Missing all around the world who collectively helped to bring us out from the forgotten shadows.

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

 

 

 

 

 

 

Experience of Care in the NHS with ME

I love the NHS. It brought me into a career of care by working in community clinics and hospitals. I have a lot to be thankful for with the NHS and I have great admiration for those that work within it. I’m writing this with a heavy heart to show an area where it has failed to live up to expectations.

I, alongside three other members of therapists, had our careers cut short, all within the same year, due to Myalgic Encephalomyelitis (ME) . I hadn’t taken a day off sick before my virus struck and I returned to work after about a week. I didn’t feel much better, but I felt I should be feeling much better. This was the pattern of the next year but every time I tried to push on through, the fatigue pushed back harder until I was barely able to function at all.

It was scary to be incapacitated without having answers. It was even worse to have answers that were formed on stereotypes rather science. As blood tests started to come back negative it only confirmed in the doctors eyes that the problem was in my head. I was told it was due to stress and depression, I was told I was just looking for a way out of work, I was told to ignore it and just get on with life. Then came the diagnosis CFS/ME. They were far more keen to talk about my lifestyle, relationships and work than my symptoms and were reluctant to send me for further tests as these would “probably come back negative too”.  Despite never feeling depressed it was hard to challenge their conclusions without my husband being present and vouching for me. I felt ashamed of my illness and that somehow not only was this all my fault but I was also wasting everyone’s time so I stopped going. I was told it would either get better on its own or I would learn to live with it.

So, I’ve learned to live with it. The best way I’ve learnt to live with it has been connecting with others online. This changed me from being ashamed of my illness to campaigning for better understanding and provision as my own experience of ignorance and neglect was distressingly all too familiar. Don’t take my word for it, take a look online yourself. Many people with ME (#PwME) are recounting their own experiences on blogs and social media all around the world with chilling familiarity.

Not being believed and understood can be distressing but being prescribed Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) can be disastrous. These programmes work on a patients ‘false illness beliefs’. A report by the ME Association in 20015 discovered 74% of patients have reported harm from undertaking GET/CBT.

Taken from ME Association Study 2015

New research demonstrates that patients have physiological problems with their energy production and advises against prescribing exercise. (See Keller et al)In fact, the very hall mark feature of ME is post exertional malaise. It seems to me that the false illness beliefs lie with practitioners rather than patients!

“The fact is that a progressive and sometimes rather inflexible increase in physical activity, the key component to a treatment that is based on the scientifically flawed deconditioning model of ME/CFS, is just not appropriate for a significant proportion of people with ME/CFS…

If a drug treatment were causing this level of adverse reactions, then serious questions would have to be asked about its use – certainly by non-specialists.” The ME Association

I’m one of the fortunate ones with ME. I’ve had a long period of good health in between my 20 year span of ME, but trying to recover is like playing a game of snakes and ladders: just when you think you’re near the finish line, you seem to hit a long snake back to the bottom!

It really saddens me not to able to be more positive about the treatment I’ve received in the NHS. There is so much more I could add to the list of hurtful comments, attitudes and aspersions. However, I’m still passionate about all it stands for and I’m optimistic that one day things will change. It’s been 20 years since I was first diagnosed with ME/CFS and I have just found myself a GP that has been really helpful. She admits she doesn’t know much about ME and there is no specialist unit to refer me on to, but she has been willing to listen and do her own research. This is a more promising starting point. I do hope that this is the start of the change…

My NHS wish list:

  1. Believe patients with ME! There is nothing they want more than to be well and active again.
  2. Stop prescribing GET/CBT. (See StopGET.org )
  3. Better funding for biomedical research
  4. NICE guidelines to be updated taking into account new biomedical research findings and the debunked PACE trial study.
  5. Training for doctors and medical students using current research
  6. PACE trail retraction. This has harmed many patients and hampered attempts for biomedical research. Scientists in all disciplines have signed an open letter calling for it’s retraction. (See here)
  7. Specialist ME centres across the UK.
  8. Better funding for our much loved NHS!

NB: This was a rushed post as part of Experiences of Care Week #Expofcare

Why PACE trial is a big deal

I was ready to crash when I came home on Friday. It had been a busy week of starting a new job and I was ready to celebrate by slowly sinking into the sofa with my feet up with a cup of redbush!

I was tipped off that Twitter was about to get lively and even for 5pm on a Friday evening it certainly did with possibly the biggest ME breaking news! After years of wrangling, suffering, fall out, cover up and hundreds of thousands of pounds of public money, the hotly contested PACE trial was to finally be put under the microscope!

My discovery of GET and PACE

In Sept 2013 I suffered a major ME relapse. It was almost twenty years since my first diagnosis of ME so I was keen to learn what new treatment options there were. The options were mind-boggling and ranged from the pure bonkers to the extortionately expensive!

I tried to keep an open mind about all ‘therapeutic techniques’ and I decided to restrict options to ‘cheap/affordable’ and ‘least likely to cause extra harm.’

It seemed like NICE (National Institute for Health & Care Excellence) guidelines would be a good, safe place to start. This is where I first came across the term Graded Exercise Therapy (GET). It sounded perfect for me. I’ve always loved sport and physical activity and getting better wasn’t going to be enough for me, I wanted to get back to physical activity.

If it wasn’t for a trusted friend who warned me about the great dangers involved in GET, that would have been the path I would have taken and I dread to think of the consequences. She had gone from ‘mild’ to ‘severe’ from GET and years later is still housebound with ME, and only able to leave the house once or twice a month in a wheelchair.

I researched further and it turned out she was far from alone and GET quickly slipped from the top of my option list and I chose a safer route of diet and pacing instead.

NB Pacing is about managing one’s own energy levels and involves lots of rest and shouldn’t be confused with the beleaguered PACE study!- Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluation)

As I became more connected to others with ME on Twitter I became shocked at how many reported becoming far worse and often wheelchair/housebound after taking GET. This wasn’t just unfortunate it was becoming scandalous. (Listen to BBC Radio Scotland phone in here for patient experiences of GET) How could GP’s be recommending something that had the potential for doing such harm?

The answer only pointed to a wider controversy. CBT and GET encourage patients to change their illness beliefs and gradually increase their activities. It has long courted controversy as an effective ‘treatment.’ Dr Ian Gibson, former MP and prominent campaigner for MEcfs raised the shortcomings of this approach in a judicial review of NICE in 2007. His witness statement reads:

“The NICE guidelines give the false impression, to doctors, politicians, and the MRC, that effective treatments are available for ME patients. NICE  would do better honestly to admit that their core therapy recommendations [of GET/CBT] are not evidence-based, and to use this admission as the starting point for an adequately funded search for a cure.”*

However, despite the misgivings from many prominent scientists, ME charities and patient advocates recruitment for a £5 million PACE trial, part funded by the DWP was already underway and finally published in the Lancet in 2011. The results raised more questions than it addressed. In a nutshell, the selection of subjects, methodology, statistics and outcome measures, impartiality and conflict of interests have all been questioned, not just by people within the ME community but by other eminent researchers and journalists. (For detailed analysis click here for David Tuller’s excellent Virology blog)

The level of dubious questions that surrounded the PACE trail combined with the reports of harm that GET was causing had left patients in fear, confusion and were frustrated to say the least. Biomedical science is already starting to demonstrate why activity can be harmful for people with ME. (E.g Keller et al)

Myself, like many others weren’t prepared to take the risk and Doctors had little else to offer. PACE was therefore already discredited in patients eyes unless the data was made available for further scrutiny. It seemed the only logical solution to restore trust. The public, ME patients and science had a right to know if the study claims were valid and  12,000 of them signed a petition asking for the data to be released

However, requests were repeatedly rejected and patients legitimate questions and concerns (including Freedom of Information requests and parliamentary questions) were considered as vexatious harassment and patients were discredited. QMUL (Queen Mary University London) spent a staggering £200,000 in legal fees to prevent the release of it’s data, which left everyone asking why?

Maybe QMUL protested too much. It began to attract attention from those with a wider interest in civil liberties and the small, discredited voices of patients were being elevated and amplified by veteran campaigners such as Peter Tatchel.

The controversies surrounding PACE have been getting deeper and more entrenched for years but it felt like change was close. Resignations were being reported and finally, late on a Friday afternoon came the news that the PACE trail data WOULD be released! Hooray!victory

Optimism for the future

It has been a fantastic few weeks for people with ME. Dr Naviaux’s groundbreaking research into metabolomics  could be a real game changer. This alongside the increasing findings of biomedical research could soon render psychological therapies outdated and redundant. There’s much to celebrate and be extremely relieved and thankful for but we mustn’t stop now.

There are many people and organisations that have played a role in getting the PACE trial released. You know who you are and thanks to everyone who has given support, no matter how small. I’m not going to name individuals for fear of missing anyone out but a HUGE special thanks must go to Alem Matthees in winning this case.

BUT – Our children are at risk.

As I’m writing this, a further study is already under way to trial GET on children and adolescents

“to find out more about Graded Exercise Therapy and Activity Management and whether young people think they are “OK” treatments.”

If it was a drug trial, there is no way this would have been allowed to go ahead. It’s totally unacceptable for our children to be used as guinea pigs in this way. Approval for the MAGENTA study (Managed Activity Graded Exercise in Teenagers and Adolescents) was given based on the positive outcomes of the PACE trail. I would like to see it scrapped altogether, but at the very minimum, to put it on hold whilst PACE is being re examined. Please sign the petition to stop trials of graded exercise here  

So whilst celebrating one victory I also wanted to flag up the ongoing risk to our children. So lets not celebrate for too long -just yet!

 

For more details see ME Action Network PACE trial press release

 

Since writing this post and the release of the data prominent scientists and researchers across all disciplines, alongside patient groups and charities signed an open letter calling for a retraction of the study in March 2017 (click here) The fight for transparency, honesty and ultimately help for people with ME continues!

NICE have also brought forward their plans to review their guidelines in summer 2017 partly due to the to the “new information about the 2011 PACE trial” (click here)

*Gibson I. Witness statement in support of the Judicial Review case of the NICE “CFS/ME” Guideline (CG53) online brought by ME patients:Re: Douglas Fraser & Kevin Short v NICE Case Number: CO/10408/2007.Exclusion code 9.

 

 

Returning to work with ME

It’s almost three years since my ME relapse. Relapse for me meant going from what I considered to be fully recovered to virtually housebound again.

I lost my career as a Speech and Language Therapist to ME. My Boss told me not to leave it too long before I returned to the profession and I had no intention of leaving it longer than I needed to. That was twenty years ago…

My early days and nights were spent in bed. My Occupational Health doctor couldn’t have been more wrong in assuming I was just looking for a way out of work. I was ill and desperate for help to get me well and to contribute to society again. Even in the dark endless days and nights stuck in bed, I needed to ‘do’ something.

scroungers_headlines_lgSadly, the prejudices and assumptions against chronically sick and disabled people haven’t improved over the decades. The political agenda feeds the media appetite for the sick to be seen as malingerers who are work-shy scroungers that are a drain on society. Whether you access the benefit system or not it has perpetrated profound social divisions with emotional consequences. The true cost of those that rely on benefits is immense.

 

Initially the days and nights merged into a one as endless sleep blacked out any potential aspirations but more waking hours only brought more frustration to ‘do’ something again.

It took time to adjust to the new reduced version of me. Everyone with ME has to go through this painful process and I admire the countless numbers who have lost successful careers and rediscovered themselves as writers, artists, volunteers, or who use their limited, precious energy supporting and advocating for others. Indeed I have full respect for anyone who goes through chronic illness. Just getting from one day to the next can be a challenge enough.

I gave office support for my husband. Initially 20 mins a day was all I could manage before I had to return to bed. However, over time this developed into a full PA role. They weren’t conventional hours that I worked but I fulfilled my contracted hours and my husband was always incredibly understanding and supportive. We were a good team and in 2010 we started our own business (SajeImpact). I had been virtually fully fit (99%) for several years by this point and the future possibilities seemed limitless again.

By 2013 all those possibilities were engulfed by my full blown relapse and I was back to square one again. Recovery seemed slower and cognitive difficulties more pronounced, but I was able to follow a long and undulating road of slowly piecing life back together again.Mercies are new every morning

It’s true that you learn to appreciate what you’ve got when you thought you had lost it. It’s also true that new opportunities arise through loss and I am grateful for the people I have connected with and lessons I’ve learnt along the way, not least through my Ignite discipleship course last year.

Volunteering was my focus for this year. It seemed a good half way house for me. I could give without fear of over-committing. Just as things were really getting going I had another unexpected bolt from the blue! This time, thankfully, it wasn’t a relapse but a job opportunity!

The job was a temporary fixed term contract as a PA for an organisation that I’m passionate about and an individual that I hold in high esteem. On paper, I met the criteria and was more than qualified to do the job and after prayerful consideration I applied. I thought I had nothing to lose. How wrong I was! It wasn’t until my application was submitted that I realised how much I had to lose! Working from home alongside my husband is one thing but going to work to fulfil contracted hours is quite another.

I had been feeling around 80% well for a good year with careful pacing and frequent rest but I still had lots of mini flare ups. Was that well enough? How do you know when you’re ready to return to work? Would the new challenge make things better or worse?

I also felt very vulnerable. I didn’t even tell all my immediate family about the interview. The me on paper oozed capability but the physical me screamed liability! Both were 100% true yet seemed irreconcilably apart.

I knew I had to be 100% honest in my interview about all my difficulties and limitations. I only wanted the job if I could be a genuine help and not a hindrance but I could offer no guarantees. I was so honest I almost questioned what I was doing in an interview room myself!

Preparing for the debrief phone call was agonising. I knew there were other good candidates but in my head it all came down to whether someone would see me as an asset or a liability and it felt a fragile place to be.

The phone call came the following day and we were straight into weather pleasantries so I started to prepare myself for the inevitable, gentle let down. The expected words didn’t come and I was offered the job! I then realised I hadn’t prepared for this response and I think I managed a blubbering, tearful thank-you although I can’t be sure!

File 21-07-2016, 20 41 36The feeling was incredible. This wasn’t about having a job. I realised in that moment it was about being validated. Despite knowing my limitations and understanding the risks, they were still prepared to take me on and support me in every way they could to help me to do the job to the best of my ability by safeguarding the risks. I couldn’t have asked for more.

Many people reacted to the job offer at face value. It was after all just a part time PA role to cover maternity leave. I laughed off comments such as “about time too!” and I discovered that many people thought ‘working from home’ was just a euphemism for ‘lady of leisure!’

None of it mattered, I  was ready to pop the champagne and put the bunting up! For those that knew and understood my journey, loss, struggles, disappointments and frustrations, they knew what this meant and shared my celebrations and it felt good.

Speech Therapy is still a long way out of reach for me physically. (I still find intense speaking and listening particularly exhausting) It may be that I never return but I’m grateful for new opportunities.

Working 5 days a week will probably push me to my limits and I know all other commitments will need to be reigned back in again to allow me function as well as I possibly can (including blog posts!) At least this time there will be an end date that I will have control of.

Despite the risks I’m excited about the new challenge, going OUT to work, and being part of a team again and I just pray that my body behaves itself for the next 9 months! At some point, I’ll keep you posted with how I got on!

 

 

 

#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.

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.

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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.

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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.

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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!

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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:

Millions Missing mapFor 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.File 18-05-2016, 21 58 21

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

PwMEribbon
Remembering my virtual community of people with ME

*To learn more about ME please visit:

Action for ME

ME Association

Phoenix Rising

 

 

 

Isolation and ME

This is the third year I have blogged for ME Awareness day. I have shared my personal journey and talked about Acceptance and Strength in Unity.

Two years ago (2014) Action for ME commissioned a survey to see how the illness impacted people living with ME (Myalgic encephalomyelitis). There were many startling statistics from the 2,000 respondents. Among them was the fact that 92% had stopped or reduced social contact due to their illness. So, this year I want to share something about the social difficulties of living with ME. My health is now improving and is therefore easier to share than those who are still stuck in isolation. I want to share my experience with those in mind.

Many people with ME can pinpoint a trigger for their illness. Typically this will be a physical trauma or virus. The usual rules of illness etiquette apply in that ‘get well soon’ messages are received and there is mutual anticipation that you will soon be back to your usual self. However, when the recovery is replaced with a perpetual impasse or gradual deterioration, normal convention rules become blurred.

There is no diagnostic test for ME and diagnosis only comes with symptoms persisting for over four months and after elimination of other conditions . It can be a frightening time not knowing why your body has chosen to cascade into a downward spiral and not knowing where it will stop. Having someone who believes and can make sense of what you’re going through is foundational to accepting the illness and moving forward. It sounds such a basic ask, yet it is still sadly a rarity. Despite the many advances of biomedical science, some in society (including Doctors) still believe ME is a psychological condition and that it is ‘all in the mind’. (There is another full blog post about trying to get appropriate treatment that helps and not harms which I’m not going to go into here.) People are typically having to adjust to losing their jobs, loved ones, social life, independence and the person they once were. It is completely unacceptable that they are isolated further due to ignorance and misconceptions from people that should be offering them care and support.Their ignorance can be hurtful and isolating

When my ME was at its very worst it would be categorised at the upper end of moderate. (see NICE guidelines on severity definitions) There were very few days where I could make it out of the house and when I did, I would suffer the consequences of Post Exertional Malaise (i.e it would make my symptoms worse).The fluctuating nature of ME makes it difficult for the sufferer, family and friends/colleagues to accept how disabling it can be. Some days I could leave the house and some days I couldn’t leave the sofa.

isolated duckThe physical limitations on the body understandably bring isolation but the social consequences can be easily overlooked. I am a people person. I am sociable and happiest in the company of others. Unfortunately my body doesn’t always concur. Friends would offer to take me out for coffee, but trying to follow conversations against a background chatter and the blur of coffee machines was cognitively excruciating, ultimately exhausting and would always make me worse on the following days. Friends visiting me at home were instructed to keep visits to under an hour. Telephone conversations were particularly strenuous and exhausting and something I avoided as much as possible. Emails were a cognitive challenge and drain on energy and even the television was too much on some days. This wasn’t depression. I was totally frustrated with the situation and I can see how depression can become a secondary problem, especially when this continues for years or even decades without improvement. It takes good friends to stand by you when social interaction is so limited and unpredictable. Some can mistake it for lack of interest or commitment, especially when you can look so ‘well’.

At this point I want to thank my family and friends that stuck by me. Some friends understood my Post Exertional Malaise yet showed no compassion malaise. They continued to bring meals, flowers and cards throughout my ups and downs. (I have goose bumps recounting how touched I was). These grand gestures weren’t necessary but were enormously appreciated. However, the simplest, small gestures like texts messages were also much appreciated.

I’m finding it hard to convey how vulnerable I felt during my worst phase of my illness. I have a strong security in my own identity, a fantastic family and wonderful friends, yet the sense of slipping out of society and being forgotten was tangible. The smallest things that acknowledged that I still existed and mattered in this world were a real boost; a quick text  simply saying ‘thinking of you’ would make my day. Twitter became my social life! Not only did I learn a lot of invaluable information from others, but there was genuine friendship from people who truly understood. Conversations were short but sincere and it didn’t even matter if it took days to reply! It seems strange now, but even someone ‘favouriting’ a tweet would somehow help me feel connected to the rest of the world.

Having people value you for who you are and not what you can do is a humbling experience. When people don’t understand the illness, yet still stand by the new, less spontaneous me who is less able to commit and say yes, demonstrates that they believe and value me. I was blessed with many of these friends. Conversely, the opposite was also true. The handful of people that only made contact when they wanted something doing showed either total disbelief or disregard in what I was going through. Having to continuously repeat why I had to turn things down and could no longer commit to, was a painful reminder of what I had become and only added to a sense of isolation and frustration.

I think people that know me may be shocked reading this. It’s not something that is easily shared and discussed. The truth is, I struggled to cling on to the outside world and not get left behind. Even with improving health, this continues to be a challenge.

I do hope that it’s given you some insight into why those stats of isolation were probably so high. If you’re reading this as an ME sufferer I would love to hear how isolation affected you.If you’re reading it because you know someone who has ME then I hope you are encouraged that the small things really can make a huge difference. Why not give them a quick text whilst you make yourself a cup of tea and recover from reading this long blog?!

Further help and information on ME can be found at:

Action for ME

ME Association

Phoenix Rising

#MillionsMissing.

On 25th May I’ll be heading down to London as part of a co-ordinated international protest. As someone who has lost my career and my passion for participating in sport due to ME, I’ll be protesting myself. My health is improving but there are literally millions more who are missing from society worldwide. This chronic illness has been ignored and trivialised for too long and people are living with chronic pain and isolation for years and decades. I’m really excited to be able to be one in a million and bring this to the attention of the Department of Health on behalf of those who would also love to be there. For those who are unable to make the journey there is also a virtual protest and you can send your shoes to make your stand! We will not be overlooked and forgotten! See if your country is participating. Further details can be found here:

Global day of Protest for ME and CFS.

UK day of Protest

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