Post Twenty Seven. No, I’m Not Tired.

The ME Association was recently asked by the media to compile a piece describing the difference between having ME and just feeling tired all the time. Given the frustratingly common misconception that ME is ‘feeling tired’, this of course resulted in a lively discussion on their Facebook page, and it prompted me to want to write more about it. I’ve lost count of how many times I’ve written in my blog that ME is not ‘feeling tired’, yet some people still believe this to be the case.

I’ve had ME since 2014, and I had thirty four healthy years before I had ME. During those thirty four years, sometimes I felt tired, sometimes I felt absolutely shattered, and I remember what it feels like. I think people forget this, that I haven’t always had ME, that I used to be healthy, and like everyone, I experienced feeling tired from time to time. I know, with absolute certainty, that what I feel now, is not the same. My pre-ME tiredness was usually a result of a really busy and demanding day, a bout of insomnia, after a late night out with little sleep, or jet lag. I would feel sleepy, I would yawn, sometimes I would struggle to keep my eyes open, I’d find myself dropping off on the bus home from work, waking up every time my head fell forward like a nodding dog.

Since having ME, I don’t yawn anymore than I used to, and I rarely feel so tired that I can’t keep my eyes open. I actually find myself missing that feeling of being tired after a really busy and productive day. That wonderful and satisfying feeling of falling into a cosy bed, finally being able to lie down, sleep and recharge. I don’t have that anymore, because ME is not synonymous with sleeping. When I go to bed I simply hope that I’ll actually get some sleep, and that it won’t be too disturbed, I know it won’t be quality sleep, and I know that I won’t wake up feeling refreshed.

Being tired all the time is rough. But, despite how tired (healthy) people get, they can still function, they can recharge their batteries through sleep, they can wake up feeling refreshed, and while they might still feel tired, or groggy, they are physically able to do their day all over again. When I felt tired as a healthy person, I could always push through it too. I could give myself a temporary boost with caffeine, a splash of cold water on my face, I could take a catnap if I had the time, on a night out a shot of tequila worked wonders at waking me up! Tiredness never prevented me from being able to work, or being able to wash myself, or from socialising, or doing my grocery shopping or household tasks, or anything I needed to do in order to live a full, happy and ‘normal’ life. Sometimes motivation and laziness would prevent me from doing some of those household tasks in a timely manner, but never tiredness.

With ME, I do get exhausted, but it’s unlike anything I felt before I had ME. It’s not an exhaustion that makes me yawn, or feel sleepy, it’s more like my body is shutting down, and I feel it with everything I do. The ‘tiredness’ that people think I have, is actually a pathological inability to produce energy on demand at a cellular level. We know this to be true, research has found immune cells taken from the blood of people with ME show clear signs of low energy production. This manifests as a severe lack of strength and stamina, an extreme physical and mental weakness. It’s my muscles, my limbs and my brain, my entire body, not being able to summon the energy I need to complete normal everyday tasks. It means that everything I do, and I mean quite literally EVERY SINGLE THING requires so much more effort than it did before ME – everything I do just sucks all of the energy out of me. Every movement that my body makes, every word that I speak, every thought that I think – my body uses more energy to achieve just a fraction of these activities than a healthy body does, and my body has less energy to begin with. While a healthy person may need to run a marathon to feel like this, I just need to be alive.

This is how I try to explain it to a healthy person. Think about how your body felt after the hardest most physically draining physical activity you’ve ever done, whether an exercise class or, like I say above, a marathon – my body can feel like that after having a bath, or attending a GP appointment, or washing my dishes. Think about how fried your brain felt after working on your university dissertation nights on end, or your tax return, or a really demanding week at work – mine can feel like that after reading one short news article, or writing one email, or replying to a text message. Some days are easier than others, some days I can barely function, I can’t walk, or use my hands, or watch TV, but other days I can cook for myself and write this blog. All the things that I could do pre-ME, that were once so easy, that I could do without a second thought, are now mammoth feats of endurance.

These days I spend roughly fourteen hours per day in bed, and the other ten on the sofa. When I’m on the sofa, I usually have my phone on the coffee table within reaching distance. Sometimes, when I get a text or whatever, I reach out to pick it up, but my arm doesn’t make it and it drops down to the ground, just dangling off the edge of my sofa with my hand brushing the floor, like a rag doll. I can be lying in bed in the morning and someone knocks on my door, but I don’t have the strength to lift myself out of bed, it’s like I’m paralysed, so I have no choice but to lie there and ignore them, feeling incredibly rude. I get an email, I can read it over and over, but I can’t process or absorb the content, it feels like my brain is shutting down. When I do eventually manage to understand it, whether minutes, hours or days later, and I want to reply, as long as I have the physical strength required, it’s possible I won’t have the brain power to form sentences, I can try, but I’ll spell everything wrong, I’ll use the wrong words, I’ll miss words out, it’s like I have a temporary dyslexia.

When you have ME you begin to realise just how much energy is required to do, well, everything. To be be able to do the few things I can do, I have to conserve energy. Everything we do uses energy. Having a conversation, even having someone in the same room as me, without any talking, uses energy, and when I don’t have enough energy, it’s excruciating. I can be at home by myself, no visitors, no music, no TV, but just the noise of life going on outside, requires my body to use energy. The sound of children playing (one of the neighbour kids has a pogo stick), dogs barking (one of my neighbours has what I think is the worlds most vocal dog), the sound of distant traffic, birds singing, rain falling, wind howling… this can all be too much for me. When my body doesn’t have energy to process this noise, it’s unbearable, and often triggers a migraine and/or vertigo-like symptoms. This is why I sleep with ear plugs in, and the rest of the time, unless I have a visitor, I wear noise cancelling headphones. This reduces the discomfort and worsening symptoms that comes from sensory overload, but it adds to the isolation and loneliness, blocking myself off from the sounds of the world going on around me.

There are no guarantees, but resting and pacing myself are the only tools I have at my disposal in order to manage my illness. But even these don’t always work. I can be doing everything right, following the rules, not over-exerting myself, and I’ll still crash. Or I can one day do too much, and not crash. There’s no rhyme nor reason to this illness. These crashes, or payback, as I often call it, is how my body responds to over-exertion, and when I over-exert myself, I will suffer afterwards, not by feeling tired, but with a worsening of my symptoms. This is the defining symptom of ME, this abnormal response to exertion. Exertion can be in the form of physical, emotional or mental activity. Environmental factors play a part too, for example, the UK is currently experiencing a heatwave, and this has caused my symptoms to worsen.

When I’m not in a crash, when it’s a ‘normal’ ME day, I still feel ill. I never feel ‘well’, I haven’t felt well since early/mid 2014. I might look well, you might have seen me sometime in the last four years and thought ‘she looks well’, you’d be wrong. In the absolute simplest terms I can think of, I basically feel like I have fluctuating levels of the flu, ALL THE TIME. And in a crash, those flu-like symptoms worsen, considerably, combined with a multitude of other symptoms. Everyone with ME has a unique experience of the illness, we all share the abnormal response to exertion, but we have different baselines (the level of activity we can manage without a crash) and different symptoms. For me, ME is mainly about a lack of stamina and physical strength and feeling slowed down, and heavy, like my bones are made of lead. Pain – head, migraine, throat, lower abdomen/pelvic, limbs, muscles, joints and skin. Also cognitive dysfunction/brain fog. I experience these, on top of my other symptoms, in various levels of severity, EVERY SINGLE DAY.

“This illness is to fatigue as a nuclear bomb is to a match”. Laura Hillenbrand, author of Unbroken and Sea Biscuit

A few doctors who have ME were recently interviewed for an article in Medscape, when asked what he [Mark Vink, MD] would like other physicians to know about ME, Vink responded “…that this is a debilitating neuroimmune disease, which has got nothing to do with being tired.”

Having ME is not remotely like feeling tired, it’s worlds away from feeling tired, the word ‘tired’ doesn’t even belong in the conversation and it should never have been added to the conversation (the name Chronic Fatigue Syndrome is to blame for that I feel). This illness is like nothing I ever experienced before I had ME, and I have suffered with insomnia for years (long before I got ME), regularly going to work on only 3hrs sleep for days/weeks at a time. That’s how I knew, at the beginning of my illness, that something was seriously wrong with me, because it was so different to anything I had ever experienced before. It can’t be overcome with sleep, or rest, it has absolutely nothing to do with motivation or willingness. I cannot just ‘decide’ to have some energy. The activity that I do, is completely at the mercy of whether my body can produce the energy to do it, it’s not whether I’m too ‘tired’ or not.

I have had people suggest that I’m just tired, or lazy. I have also had people, who seem to want to show their understanding, and I think they mean it kindly, but they also get it wrong. I can be talking to someone about their busy week and they mention how tired they are, then they hurriedly say “Oh sorry, I shouldn’t be complaining about being tired in front of you”. And I think, “why can’t you?”. Of course someone can complain about being tired in front of me. That person’s tiredness has nothing at all in common with my neuro-immune illness, but by thinking they can’t discuss being tired with me, does seem to suggest that they do think that ultimately, I am only suffering from tiredness, albeit an extreme form, therefore it would be bad form to complain about their tiredness in front of me. So, just for record, I do not mind when people tell me they are tired, people are allowed to be tired, they are allowed to be exhausted, fatigued, knackered, whatever, and they are allowed to complain about it, it won’t offend me, just don’t compare it to the disabling chronic neuro-immune illness that I’m living with.

To illustrate the reality of ME, I have a couple of stories to share, both are really sad I’m afraid.

Merryn Crofts

Merryn Crofts was a young woman from England who died last year, just twenty one years old. Merryn became the second person in the UK to have ME listed as the cause of death on a death certificate. This doesn’t mean that she was only the second person in the UK to die from ME, simply that, it’s unusual to have ME recognised as the cause of death on a death certificate. This is a step forward in the recognition of ME as a serious, disabling and life-threatening neuro-immune illness, but it’s impossible to feel positive about it, not when it was at the expense of Merryn’s life, and Sophia Mirza’s life, the first person in the UK to have ME as the cause of death on the death certificate.

The ME Association reported on the inquest ruling, of which I have shared some excerpts…

[Coronor] Mrs McKenna today concluded her cause of death as starvation caused by a withdrawal of supportive nutrition, caused by M.E. She described Merryn as someone who “bore her suffering with dignity and good grace”.

She said: “Merryn had suffered with M.E. since 2012 which caused severe fatigue, gastrointestinal failure, chronic pain, global hypersensitivity, loss of mobility and function.

“Despite extensive investigations no reason for her gastrointestinal failure which led to her reliance on supportive nutrition was found and it most likely it was caused by her M.E.”

Pathologist Daniel DuPlessis said that a post-mortem showed low-grade inflammation of nerve roots. It was suggested that this inflammation could have made her bowel hypersensitive to processing nutrients.

Dr DuPlessis pointed out that Merryn had inflammation of the ganglia – gatekeepers to sensations in the brain. A post-mortem into the only other UK death attributed to ME, Sophia Mirza, 32, in 2006, also found ganglionitis.

Mental health expert, Dr Ross Overshott, told the inquest that Merryn did not suffer a psychological illness, such as depression or an eating disorder.

He said: “She was hopeful for the future, she could speak in a very involved way about her hobbies and interests, particularly musicals and films.”

[Palliative care doctor] Dr Lippett said she was convinced that Merryn had severe M.E. and was in real, physical pain.

But she said: “There are a lot people, medical professionals, who questioned the M.E. diagnosis and questioned whether it was psychological on Merryn’s part.”

It doesn’t sound like Merryn’s main complaint was tiredness, does it.

Lisa’s Mother

I would also like to share an open letter written by Lisa, a young woman who has ME. Lisa’s mother also had ME, for twenty years, and in her final months, she had pancreatic cancer too. As Lisa’s mother was dying from cancer, she said she wanted people to know that ME, its symptoms, the social isolation and the derision she experienced, were worse than having cancer.

This was originally shared on the Facebook Page: Tom Kindlon’s ME CFS & related page: News, Research and more, and I have permission from Lisa to share it here.

Hiya Tom. How are you?

I’m sad to say that my beautiful mam died of pancreatic cancer last Friday, aged 58, just one month after her diagnosis. BUT HERE ARE A FEW VERY IMPORTANT POINTS:

1. The symptoms of my mam’s ME, which she had for about 20 years, 17 of which were of an official diagnosis, were undifferentiated from the cancer she eventually died from. When she was diagnosed with cancer, her life didn’t even change as she had been in such pain, exhaustion and isolation for 20 years already. It was literally only in the last 3 days of her life where we could tell she now ‘had something different’. How shocking is that? To feel and live like you have aggressive, advanced cancer for so long when blood tests keep coming back fine and people keep telling you to do graded exercise, ‘get out in the sun’ and ‘you’re just depressed’ and for you to be passed from pillar to post with no-one understanding what’s wrong with you. The symptoms of ME were the SAME as the symptoms of aggressive, advanced cancer, for my mam.

2. As soon as the word ‘cancer’ was mentioned, my mam had, thankfully, all the support in the world – endless meals cooked, fast-tracked appointments, visitors who’d stay just the right amount of time – same for me and my sister – so much beautiful support which I’m eternally grateful for. But my sister and I were like ‘My mam needed this level of support and our family needed this level of support all along – why did no-one take us seriously?’ In many ways, ME absolutely destroyed our family.

3. I was so, SO ground down with spending ages explaining to my friends my mam’s ME – her excruciating pain, aversion to light and sound, repeated infections, persistent lack of appetite, almost complete isolation from loved ones, depression, terrible brain fog … only for them to say in passing a few weeks later ‘Uh, ya mam has ME, doesn’t she? She just gets, like, really tired, doesn’t she?’ OR WORSE ‘I get that sometimes, like really tired after a hard week at work.’

4. I am GOING TO CHANGE THINGS. I feel so angry about this disease and STILL the completely ignorant attitude of many doctors, family members and friends about it. I haven’t worked out how, exactly, yet, as I’m still very raw from my mam’s death less than a week ago BUT I am going to make it my mission to make people WAKE THE F*** UP about this devastating illness which, for 20 years, gave my mam THE SAME SYMPTOMS AS AGGRESSIVE, ADVANCED CANCER yet NO SUPPORT from doctors and derision from many other people.

Thank you so much for the support your page gave my mam. Please feel free to repost this or pass it on to anyone you like.

Lots of love, Lisa Lowery. Xxx

It doesn’t sound like Lisa’s mother was feeling ‘just tired’, does it.

I’m so sorry for Lisa, her family, and Merryn’s family, for their losses to this destructive illness.

This is off topic from the main theme of this post, but while on the subject of ME and cancer. ME Advocate, Co-Founder of #MEAction, and Director of Unrest, Jennifer Brea recently shared her experience, on Twitter, as a patient with both ME and thyroid cancer, and the stark difference in medical treatment. Two devastating illnesses, but two wildly different experiences, where treatment is worlds apart.

“I know people have been asking how I’m feeling. I don’t have much to say at this point other than thank you so much for your support over these last many weeks. Overall, I’m weak and it’s going to take time.”

“The cancer treatment at UCLA was world class. I felt like I had walked through a portal into the future. They next day, when no one could understand why I couldn’t sit up, much less walk, I was snapped back to the 19th century.”

“These two experiences – one the result of 60 or 70 years of cancer research, training and practice, the other of decades of total neglect of ME – coexist in the same moment in history. I’ve never experienced the inequality of what we must live everyday in such a direct way.”

Her posts on Twitter resulted in replies from other people with ME who also have, or have had, cancer, and every story was the same. Someone said that amidst crying about dying, she was also crying, more so, because she was experiencing what it was like to be treated with respect and care, like a person worthy of being listened to by health professionals. Someone else said that the discrepancies in support between the two illnesses floored her. She said, while both illnesses are rubbish, and while her cancer is hopefully controllable, unfortunately not curable, she is believed and treated as a human. Another woman said she had the exact same experience when she had cancer eight years ago. The cancer care was brilliant and immediate, with skilled treatment, but ME, is “a desert of twenty six years of solitude, silence, darkness and ignorance”. One man said of his similar experience, that compared to ME, cancer was like “landing on another planet – tailored, effective treatments, sympathy and possibility of a cure”. I’ve seen this discussion come up many times within the ME community, and it’s always the same. People with ME who only after getting cancer, finally get to experience what it’s like to have a specialist doctor, specialist nurses, a treatment plan, care, respect, recognition and support. Then they recover, and they are left on the other side, cancer-free, but back to dealing with their ME on their own, with none of the support. Like Jennifer Brea said, it’s because of the decades of funding and research that cancer has received, yet ME is left behind, neglected in the dark ages.

I hope people understand that I don’t mean to minimise the trauma of cancer, not at all. People with cancer deserve all the support they can get, they deserve the Macmillan nurses, the Maggie’s Centres, the specialised treatment plans and all the love, care, respect and support they can get. But so do the rest of us, those of us with equally traumatising illnesses (and yes, ME is traumatising, as well as severely disabling), we deserve these things too, but we get nothing. I’d love to experience the same level of support, care and treatment, but I certainly don’t want cancer in order for that to happen. I just want the same level of support for people with ME, but it feels as though our lives are just not worthy enough, and I expect this is because, sadly, many people, including our healthcare providers, simply believe that we are only tired.

To end this post, I planned to share this song earlier, but I forgot (brain fog!). This is a version of Bob Dylan’s Blowin’ In The Wind re-written with alternative lyrics by Robert Saunders, who has ME. The recording includes the voices of eighteen people from seven different countries, most of whom have never met or communicated with each other, but are untied in their fight for health equality for people with ME. The images in the video are from the ME Perspective website. The video is dedicated to Anne Örtegren, one of our community lost to this illness. I don’t normally like stuff like this. Usually it’s a bunch of celebrities banding together to sing/murder a great song in the name of charity. But this, I absolutely love, it’s so beautiful, the lyrics are heartrendingly sad, I find it so moving, and I love the reference to the PACE Trial. So I want to give you a chance to cry along to it too!

 

NEWS

MEAction. Volunteer of the month: A Scottish trio!

https://www.meaction.net/2018/06/29/volunteer-of-the-month-scottish-trio/

The Canary. There was a political tremor this week over one of the world’s most neglected diseases

https://www.thecanary.co/discovery/analysis-discovery/2018/06/08/there-was-a-political-tremor-this-week-over-one-of-the-worlds-most-neglected-diseases/

ME/CFS Research Review. Analysis of data from 500,000 individuals in UK Biobank demonstrates an inherited component to ME/CFS.

https://mecfsresearchreview.me/2018/06/11/analysis-of-data-from-500000-individuals-in-uk-biobank-demonstrates-an-inherited-component-to-me-cfs/

Simmaron Research. Large NK Cell Study Points to Autoimmunity and Inflammation in Chronic Fatigue Syndrome (ME/CFS).

http://simmaronresearch.com/2018/06/natural-killer-cell-chronic-fatigue-syndrome-autoimmunity/

Virology Blog. Simon Wessely himself, in a recent Twitter exchange, invited Mike Godwin, an American attorney and social commentator, to review the PACE trial controversy. After scrutinizing the published record, including the PACE research and the special issue of the Journal of Health Psychology dedicated to the issue, Godwin pronounced PACE to be “so profoundly flawed that it cannot be trusted.”

http://www.virology.ws/2018/06/18/trial-by-error-sir-simon-scores-an-own-goal/

MEAction. Westminster Hall debate could be a ‘Turning of the tide’ for ME.

https://www.meaction.net/2018/06/21/westminster-hall-debate-is-turning-of-the-tide-for-me/

The Canary. A cross-party debate has offered a ray of hope for the ‘millions missing’.

https://www.thecanary.co/discovery/2018/06/22/a-cross-party-debate-has-offered-a-ray-of-hope-for-the-millions-missing/

Health Rising. Ron Davis (Finally) Gets His Big Grant! “This proposal aims to uncover the immunological basis of ME/CFS”.  

https://www.healthrising.org/blog/2018/06/25/davis-nih-grant-chronic-fatigue-syndrome/

The Canary. A global campaign group needs the UK’s support to find the ‘millions missing’

https://www.thecanary.co/feature/2018/06/25/a-global-campaign-group-needs-the-uks-support-to-find-the-millions-missing/

ME/CFS Research Review. Dr Ron Davis’s big immune study is looking at HLA genes. Here’s why.

https://mecfsresearchreview.me/2018/06/28/dr-ron-daviss-big-immune-study-is-looking-at-hla-genes-heres-why/

Pro Health. Major Research Group Highlights Inflammation Energy Production Connection In ME/CFS. The Simmaron Research Foundation is bringing the brain, the immune system and metabolism together in a way that’s never been seen before.

https://www.prohealth.com/library/major-research-group-highlights-inflammation-energy-production-connection-cfs-83470

 

 

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