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#MillionsMissing from ME: 2019 Stories

Categories: Featured news

#MillionsMissing in Edinburgh

We asked you, the #MillionsMissing from ME to tell us your stories.
We are grateful for all that you’ve shared with us and each other.
We are proud to publish your words.
We won’t give up the fight.
Here is the collection of your stories from 2019.
*We tried our best to include all of the submitted stories. If we left yours out, we sincerely apologize.

Tamara, Australia

I was an enthusiastic, energetic primary school teacher when I first noticed things weren’t quite right! I pushed through for 3 1/2 years before I just couldn’t move any more. I spent 3 months unable to move, sleeping 22 hours a day.

As soon as I could I returned to work, I crashed again. I took more time off, I returned to work part time and crashed over and over again. This was a cycle on and off until I had children and then I really couldn’t handle even a day teaching. I guess I was already using the limited energy I had at home being a mum and there was just nothing spare. I worked on Thursdays and then had to sleep until Monday. I would spend Tues. and Weds. recovering and they cycle would continue. I persisted for many years trying to return to work and finally last year accepted teaching was just too physically demanding for me and retired. It was heart breaking for me to give up not only my career but what I felt was my calling in life. I know I am a good teacher. I know I have a lot to offer, it is such a shame I waste my life in bed not contributing to society. I have had people say to me “you are so lucky you don’t have to work” I reply with “you are so lucky and privileged to be able to work, I wish I could”.


Lori, Tracy, California, USA

Prior to July, 2018 I had worked since I was 13, and had spent my last 20 years in management. July 2018 I came down with a cough, a cough like no other I had ever had, though I’ve had asthma and many bouts of bronchitis all my life. After three doses of antibiotics and two rounds of steroids my GP said I just needed more time. I said NO, something is terribly wrong. My joints ache, I’m exhausted, I don’t feel right, my brain is foggy, I can barely walk from room to room, my skin is dry and flaky, I cannot tolerate light or noise, a shower is exhausting, I can’t drive, my short term memory is shot something is TERRIBLY WRONG

After two Pulmonologists, a Rheumatoid specialist, and a Neurologist, I was told I had Fibromyalgia. I said no, that doesn’t make any sense. I left my current insurance, started using my husband’s, and went to see his family doctor in town. I was immediately diagnosed with CFS/ME triggered by the virus that attacked my lungs. I then went on to see a new Pulmonologist, who has luckily been able to treat my lungs with an antibody therapy, and they are slowly clearing.  However CFS/ME has left me unemployed, unable to drive, and unable to do much of anything. No more live music, I am no longer able to go on a motorcycle ride with my husband, or go for 4 x 4 rides in our jeep, unable to tolerate loud restaurants, and I can no longer travel to watch my granddaughter in her dance competitions. I am unable to do typical chores, unable to cook, unable to take a shower more than once or twice a week. It has taking me from a fully functional, commuting, working, active person, to a homebound 57-year-old virtually overnight. CFS/ME has taken my old energizer bunny self, and left me with a shell of my old self. A shell that struggles through everyday, just trying to find a moment of joy to keep pushing.


Funny Dutch Girl, The Netherlands

It’s hard to work when all I can do is lay down. The disappeared concentration and thinking abilities don’t help either. I hope I’ll be able to work someday.

I’m happy I live in the Netherlands where we have paid sick leave, if you can convince the social securities doctor you’re ill. Which is not an easy feat.

 

 


Katarina, Sweden

I lost my job because of my ME. 

Liz, England

I was a trainee accountant before I had this illness I worked so hard to get there just to have it stripped away from me. I’ve had this illness for 2 and a half years.

Tiel, The Netherlands

I had a wonderful job with lots of potential but fell ill before I was 30.

Pictured below (from left to right): Katarina, Liz, Tiel

 


Lorraine, Hileversum, The Netherlands

 

I’ve had to give up work in the past 4 years. I hate the fact I had to give up my independence, as I have always been very independent.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


dsavannah, Atlanta, Georgia

I miss being able to create. I miss my career as an artist. Now I can’t hold my camera because it hurts too much. I can’t hold or use a paintbrush or crochet hook because I’ve lost my fine motor skills. And I can’t see well anymore. I miss my career something fierce. I miss being able to help others. It saddens me when I think of all the students whose lives I never got to touch.


Lainey, United Kingdom

My name is Lainey, and I have lost my career due to ME. I am barely into my 30s and I feel like I am on the scrapheap already. Before this disease began to manifest, I was already heading into a quarter-life crisis: I think the eventual nervous breakdown was the catalyst. I was stuck in a low-paid job I hated, with no light at the end of the tunnel. I thought that I found it difficult to concentrate because I was unhappy. I thought that I struggled to wake up in the morning (and sometimes fell asleep at my desk) because I was jaded and depressed. Something inside me eventually snapped, and I applied to return to University as a mature student. However, I still struggled to wake up in the mornings, nor could I focus on my assignments. Why? This is what I had been looking forward to, after being in a dead-end job for the past few years! When my tutors started to get annoyed with my timekeeping and I found myself struggling to reach deadlines, I knew something wasn’t right. Further education was what I wanted, I just couldn’t understand why I was listless, lethargic and finding it hard to focus.

To cut to the chase, after many medical tests and investigations, I was hit with a diagnosis of ME. I still find it hard to take it in sometimes. Naively, I hoped that it wouldn’t stop me from finding a fulfilling career, but unfortunately there is only so far that determination can get you. As stubborn as I am, I tried to “forget” the diagnosis and applied for an internship with a local business, arranged by my University. I even fully disclosed my condition to these employers, with the hope I could make a career work around my illness. I met some lovely people, but it became apparent that I could not fulfil the hours they needed, or often turned up to work looking and feeling like a walking corpse (or sometimes not able to turn up at all). The stress exacerbated my symptoms and often led to breakdowns or “crashes” in the office. Eventually a difficult conversation was instigated by my employers. I was hurt, but ultimately, they are running a business, not a charity.

I don’t know what each day will bring, and any potential employer in their right minds wants employees they can rely on. ME makes me unreliable, its unpredictable. Living with this condition feels like a full-time job in itself. When people ask the dreaded “so what do you do” I tell them I work from home as a writer, as I am embarrassed and saddened by what this disease has reduced me to. How can I tell a world that already struggles to understand, “no, I don’t work, because I have ME.” I hear my close friends and family talking about their careers, their ambitions…I feel happy and proud for them, but sad at the fact it is highly unlikely that I will be the high-flyer I once dreamed. Sometimes they say, “I wish I could stay in bed like you” and I want to scream back, “NO YOU DON’T!”

They don’t realise that I would give almost anything to feel like I am making a difference; to be an active, useful part of society who is doing something that fulfils me and gives me a purpose. I want to have hope, but instead I just feel like I am a forgotten one of the Millions Missing.


Jeanette, Norway

I miss teaching. I miss making a difference.


Wilhelmina Jenkins, Atlanta

I will be 70 on my next birthday. I became sick with ME/CFS when I was 33. Full of excitement about what I was doing, what was ahead. I taught physics; I did research in physics; I loved physics. When I became sick, the physics that I so loved became impossible. My brain couldn’t even understand my own work. I vanished from the world of physics and from my colleagues’ minds. They went on to the careers that we had dreamed of – I was at home in bed.

Year after year, I tried to sustain my dreams, although they became smaller with each passing year. Now all of the people I once knew are retiring after fulfilling careers. I am still at home. I watch as bits of my small life continue to fall away with each passing year. Things that I could do just a few years ago are impossible now. Loss after loss, year after year, decade after decade.

Now my dreams of treatments and possibly a cure are not for myself. I dream for a younger generation, calling for the research that will allow them to return to the full lives that they long for. I will not stand by as they endure the losses that I have experienced. I am old. But fighting for justice for people living with ME/CFS has no age limit.


Nan, Columbia, MO

Three Decades with ME.

First decade: “I think I can, I think I can, I think I can.” I don’t really see any choice as I’m a single mom and MUST be there for my kids. Home schooling them (since I’ve had to retire from teaching), as that is easier – both “schedule” wise (no such thing!) and because teaching just comes naturally to me. Thankful to be able to retain that small part of my identity, as I’ve had to give up working for an employer and all volunteer work – and that was painful.

Second decade: This was the best I ever felt living with ME. My kids were grown. I could now pace and do only what’s necessary, only when I felt up to it. Meals on my own time. Disability case won and financial aid programs in place, so less paperwork and less fear.

Third decade: Aging means now my parents need my help. One lives with me, and the other across town. I’d like to be more help, but ME is making what little help I can offer them supremely challenging. Now I have grandchildren I’d LOVE to be teaching. I do my best to spend time with them, as it is worth the expense to my energy budget. I seem to have even less energy and cognitive function (even with the coping mechanisms in place after decades with ME). Is it “only” aging, or is it losing some control over my ability to pace or only do things when I feel up to it, now that so many other people’s needs are putting demands on my time and energy? The thing I miss most is losing my ability to cope gracefully.


Tom, Columbia, MO

In the spring of 2002, I started to till our small vegetable garden. After only one row, I was beyond exhausted and stumbled into our house to collapse on the couch. This made no sense, as I had been tilling our gardens for years. My stamina and my ability to recover from exertion seemed to have evaporated into thin air. Eight months and referrals to 3 doctors later, I was diagnosed with ME/CFS.

As the sole source of income for my family, I continued going in to work, but found myself needing to take off more hours every week, and spending entire evenings collapsed on the couch. Eventually my employer fired me. Now we get by on social security (one advantage of getting ME later in life and surviving ME into old age), and hiring help with our vegetable garden and other tasks around the house. At age 78, my stamina and even my ability to read, think and write are steadily fading. This candid photo was taken by my wife 10 years ago, after the last time I thought I could till just a little bit by myself with a smaller tiller. Apparently, I could no longer even make it into the house to collapse.


Becca, Edina, MN

Forty years a special education teacher, now I cannot care for my precious granddaughter.

 

 

 

 


Elaine, Taunton, UK

I am in my 60s and had reasonable health for a few years before being hit with Labyrinthitis, a virus that affects the inner ear and therefore balance. After 10 months I realised the extreme symptoms had reduced but so many other symptoms had taken their place. My doctor diagnosed Post Viral Fatigue Syndrome. I asked him what I could do about the host of symptoms I experienced. He said, “Develop a philosophical attitude.” He offered no support at all.

When my vision blurred, I went to the same GP who said it was age related. When I had pain in my neck and shoulder, again I was told it was age related. The horrible sensations in my feet were nerve damage that was something people of my age had. My insomnia was because i did not practice good sleep hygiene. As with many others, I have become more expert in the symptoms and would really advise doctors against looking at age as the first line diagnosis. Aging with ME is bad enough without confusing the issue.


Elaine, Taunton, UK

My whole life was taken from me when I was 27. I’m 57 now and will never know anything else but sickness, disability, weakness, exhaustion. Old age is kicking in early as M.E. has destroyed my body. At 37 I had my menopause without ever been pregnant.

 


Elizabeth, Columbia, MO

Symptoms began in 1991. Diagnosis in 1994. Became disabled in 1996. I had to stop working at age 46. Had some periods when I could attend church, shop, garden a little, and travel. But as I have aged, symptoms have worsened and now I am mostly housebound. I feel forgotten and invisible. At age 69, any hope I had for recovery or improvement is gone.

 

 

 


As I get older my ME gradually gets worse. Still I get no care or treatment except that which I find for myself. Will I die before ME is truly recognised as a severe neurological illness?


Glenn Yonce | Greenwood, USA

My ASD daughter doesn’t understand why Dad is unable to get out of bed anymore, always living in the dark, always having to be quiet around Daddy, doesn’t understand why I cannot play with her to help her with her daily challenges, why mommy has to bathe Dad from the bed. More funding is a must for this horrid disease. It impacts our families in ways most cannot conceive of. We are the millions missing. Please save our lives. One voice from the dark.

 

 


Jes, Atlanta

For me, parenting with ME is the most heartbreaking aspect of living this way. Before, I was the ever present, guiding and loving force in my son’s life. I homeschooled him his whole life and I felt pride in the fact that I was shaping my son’s educational experience. We went on adventures to explore his curiosity and practically lived at our local museums.

Now, beginning this school year, my son is in school and I haven’t even met most of his teachers. It took me 8 months to be strong enough to even see his school in person. How can I let go of him this soon. We had plans for travel and experience based education. Now he’s in a classroom often learning from a computer. My illness stole my son’s education from my grip!

He was 9 when I got sick and I’m grateful for those years that he got to see me at my best, but now at 14, we mostly hang out in my bed to talk and catch up when I can tolerate it. And the worst fear of all is him showing signs that scare me to death: he’s having some similar symptoms. That’s the worst nightmare as a parent. How can we make this stop?!? I can handle this physical torture, it sucks, but I can put a smile on my face when I need to for my family. That mothering instinct takes over. But I don’t want him to have to endure all this. Don’t let this beast attack my son! I don’t know that I’ll be able to handle that with any grace at all.


Amy Mooney, Chicago

Our daughter is 13-years-old and has been home bound for over 4 years with myalgic encephalomyelitis. She is in bed 99 percent of her day with fatigue and excruciating pain. She can’t nap and doesn’t sleep. Because of how weak she is, all of her meals must be eaten in bed. In fact, every aspect of our daughter’s life has been negatively altered. So, picture yourself or your child/grandchild/spouse/friend feeling like you just ran a marathon and then were hit by a bus. Your brain is so foggy it is the functional equivalent of stage 3 Alzheimer’s. Your body aches like you have the flu, every day for the rest of your life. Every sound pierces, sunlight hurts.

Imagine you feel this way and there is nothing you can do about it. There are no FDA approved treatments and very few people are trying to find answers with very little money. That is how our daughter feels every minute of every day without an end in sight. Our daughter has plans. She has dreams of her life without illness. When asked, “if you could be well tomorrow, what would you do?” she replied, “I would leap out of bed and be the first one at school. And I would stay there for the entire day!” The reality is that because she is so sick most of her day is spent in a darkened bedroom with very limited sound and movement. Socializing is a luxury. She has a constant headache, body aches, brain fog, and the constant companion- fatigue. These symptoms worsen by the minute when she gives any physical, cognitive or emotional effort.

Without any reason or cause, one year ago our daughter’s health changed from moderate to severe ME; all of her ME symptoms intensified (referred to as a “ME crash”). She is no longer able to leave her bed or perform any of her daily activities without assistance. She cocoons herself in her blankets to protect her fragile neurological system from the hyper-responsive reactions she has to any stimulation. This is the new reality for our child and our family.

What could have turned our powerhouse of a daughter into a weak and bedridden child? We figured finding answers would not be hard; after all we live in a major metropolitan area with many top-ranking medical facilities. We started out with getting her evaluated at major medical centers and in multiple departments. Each of department searched for a cause and ruled out countless conditions. One doctor told us, “Send her back to school. Kids with cancer still get themselves to school.” The search for a correct diagnosis was an excruciating process and financially crippling but getting the correct name for this monster gave it an identity. Another doctor told us, “It doesn’t matter what we call the condition, there’s no treatment or cure. So, the name doesn’t matter.” We disagree. Knowing the name of the disease matters and having a path to treatment is vital.

Our focus now is to protect and nurture our daughter’s fragile body. and to fight for ME’s recognition, funding and treatments.



– Wilhelmina Jenkins, Atlanta
Parenting with ME/CFS means parenting with hope in one hand and fear in the other. When I became ill in 1983, my children were young. My doctors were kind, but completely baffled. I was terrified that I was dying. One of my most painful memories is sitting in a hallway after a brain scan that my doctor had ordered to check for adrenal cancer, praying that, no matter what was wrong with me, my children would be okay.

I received my diagnosis in 1988 for what had been recently named chronic fatigue syndrome, now known as ME/CFS or ME. I learned that it was unlikely that I would die, but I could not be the parent that I wanted to be.

The unthinkable happened in 1991 – my teenage daughter became ill with ME/CFS. Seeing my daughter so ill was truly a nightmare. We were more fortunate than many – with the help of our wonderful doctor and severely limiting her activities, she managed, with agonizing effort, to stay in school. And, miraculously, when my first grandson was born, my daughter went into remission.

My grandsons are the joy of my life. But not a day goes by when I do not worry that they will have to deal with the same disease that has been so devastating for their mother and me. How, after all of these years, are we left with the terrible question – How many generations?


Before ME.

Life with ME.

– Lin | East Preston, UK

I am a parent who has ME. My daughter misses out on so much she misses the old me, our old life. Our life has drastically changed and she is struggling to deal with it. I miss being able to spend full days out without needing regular rest. My quick wit has melted away. My strength is withering away. I miss my job, the pride that it gave me. The holidays, now I struggle to cope in 15 degrees because of my heat sensitivity. I wish I could be reliable. I miss my confidence and independence. My girl has to help me a lot and she is only 11. I am housebound a lot of the time.



Tamara, Penrith, Australia
I am a mother of two very energetic children aged 8 and 10. I have ME/CFS and I have had their whole lives. I go through many surges and crashes as I try to be as ‘normal’ a mother as I can be.

Each morning my children wake and eat breakfast and then shower and get ready for school. They then come into my bed and rub my back (quite vigorously) to wake me! I sit up and one of them has usually made me a cup of tea beside the bed. I do my daughter’s hair and kiss them goodbye and my husband takes them to school. I then sleep. My alarm goes off at 2:50, (in fact about 10 alarms go off) and I wake and try to eat something and get in the car to pick them up from school. I then sit with them while they do their homework and lie on the lounge and listen to them about their day and then cook some dinner before bedtime again.

Our house is never tidy as my husband works full time to earn enough for all of us and he also does as much as he can such as dishes, washes clothes, irons uniforms etc. The children do a lot of chores too. On weekends, my family love the outdoors and so do I so often we go places and I sit in the car watching or lie on a picnic rug while they are active, on the days when I can’t even leave the house with them I stay at home feeling like my bed is my prison sentence.

I’ve heard all mum’s feel guilt about what they are and aren’t doing right for their children. I struggle to fight against the guilt. Guilt for not working, guilt for a messy house, guilt for not doing more with my children, guilt when I can’t participate in family outings. I won’t lie in my darker moments, I’ve considered how much better my family would be without me as a burden around their necks. However, fortunately most the time, I still remain positive and hopeful and so do my children that one day a cure will be found and I will be energetic once more!



Sara, Bayamón, Puerto Rico

Myalgic encephalomyelitis changed my daughter’s life. My daughter was diagnosed at age 12 with Myalgic encephalomyelitis, after having the Dengue virus. She was a very talented girl in music, she took transverse flute lessons and had a lot of sports potential, practicing Judo after school. Suddenly, this energy was drained and she spent days lying down and very sick. I kept an eye on what had changed my daughter. But, it was not the same, we changed everything for medical visits, laboratories, and a lot of fear.

It is terrible to see the days go by, and your daughter is in her room, alone, crying, and suffering. We cried together, and I’ve always understood her, living something unknown, something painful, and that nobody cares. I stayed by her side, night after night looking for information, looking for more people, trying to understand, and I could tell that this disease was real. I became an advocate for her, to claim her education rights, to make the family understand. Although it is a difficult task, it is not impossible. It is exhausting, but in the end, you are filled with satisfaction to find the best health, the best stability of symptoms, and to get her to go to school, even if it is just to see her classmates. Life wastes away, it goes by, and nobody cares.

We, the parents, have to defend our children, because nobody knows them better than we do, and we know that they are not just depressed. They are filled with joy and willingness. They are children who only need our help to face this unjust illness.



– Chris | Hull, UK

I am a parent with a 46 year old daughter who has had ME for over 25 years. What do you think it is like to wake up in the morning so tired that you can hardly go to the bathroom? What do you think it feels like to see your pals go off for an evening’s enjoyment after work while you are in bed, exhausted? You go to your GP only to be belittled and told it is all in your mind. No job, no income, no house and all because you suffer from something that is not on the good doctor’s books and the welfare state does not have any boxes for you to tick to even get the basic state aid. What a future to look forward to. My daughter knows what this is like.


Before ME.

Life with ME.

Tanja, Schweiz, Wädenswil

I am a single Mum with ME and Asperger Syndrome. I was also a World Fitness Champion before getting ME.

 

 

 

 

 

 


Before ME.

Life with ME.

– Donna, Brisbane, Australia
Always one for going the extra mile, I did a bachelors and Masters degree with 3 young kids, followed my passion to work in environmental sustainability and community engagement, kept fit, bushwalked with my kids, went bike riding, bought and renovated a house as a single parent of 3 school aged children and worked full time. Then I got influenza A and B at a work function that turned into pneumonia mycoplasma in July 2015. I never recovered.

The mental adjustment to not being able to do as much as before was the biggest hurdle. Getting a diagnosis and finding acceptance that after 4 years I may never recover and not being able to have fun with my youngest child bites the hardest. I haven’t worked for 7 months after pushing myself to manage minimal hours since becoming ill and when I do manage to get out to a function or a gathering, I wear makeup and gratitude for escaping the 4 walls of my house to take a breath in the living, dynamic world. I can then take days or weeks of profound fatigue before I can raise myself again. People don’t see this part of my life and I doubt most have any genuine empathy because I keep that struggle largely to myself. To identify as someone who now has severely truncated abilities is awful and when the door opens on the lions cage I run on adrenaline because I am so happy to be out. The debt then has to be paid back. Often it’s worth it. I am a prisoner of my body, bed and house now.

I have 3 kids. The youngest is still with me at home. I love being a mum but now that my time as the one who cares for my child is coming close to the end before he leaves home too, I am missing the adventures we used to have. We would go camping, bike riding, bushwalking, skating, exploring new places with the dogs in the car and overnight trips away. Now I lay in bed and my son watches tv or plays games online. I resent what this illness has taken away from us all.


Dancing before ME.

Life with ME.

– Mar, Hilversum, The Netherlands

I can’t be the bonus mama for my partner’s kids I would like to be. In the weekends when they are here, I lock myself up in my bed chamber. Because of my inability to interact without getting exhausted and my intolerance to noise, I can’t be around them for more than 5 minutes a day on average. I dream of the day I can go out with them to get an ice cream and be more than the woman in the other room for them.



– Lorraine, Glasgow, Scotland
I’ve had ME for around 13 years. My children are 22 and 24 now. It was a real struggle to look after them and work look after the home as they were growing up. The guilt still eats away at me of all the things as a mother I would like to have done with my kids.


– anonymous

In 6 years of living with ME I lost my career, my social life and my independence, but everyday I am most acutely aware of losing my roll as an active parent. My son had just turned 3 when I got sick and now at almost 9 he has no recollection of hiking, running or swimming with his mother. His mother doesn’t pick him up at school, go to his baseball games or take him to the beach every summer. His mother is one of the Millions Missing so he gets all his maternal attention from the bed, couch or electric wheelchair. I believe there will one day be a cure for ME, but my fear is it will come only after my sweet son is grown and gone from my home, taking with him all the memories we never got to make.


 anonymous | Stroud, UK
I have not been able to become a parent.


Katarina, Alnö/Sundsvall, Sweden

I want to visit my daughter who lives 300 km from me.

– Katarina | Alnö/Sundsvall, Sweden


Jeanette, Bergen, Norway

I dream of the day I can dance, run and go for walks with my son and husband. I dream of the day I can say YES to everything I want to do!


Great braxted, UK

I thought Ellie was just struggling from being a premie baby, always poorly, tonsillitis in endless bouts. Costochondritis got her in year 6 at school and within 2 years she had the flue and glandular fever. She barely got back up to get back into school, and then she had the hpv jab with her friends and has been very poorly since then. No education. No friends. No social life. Adapting to a wheelchair just to ensure fresh air.

KT, United Kingdom

My name is KT King and I have suffered with ME for over 25 years.

ME has ruined my life.

After graduating from university I relapsed and spent 6 months in bed. At that time my parents and I didn’t know what was wrong and the Dr’s didn’t either. For the next 25 years I was made to think it was all in my head, that I was pathetic and weak.

I recovered enough to go to Australia where I began to realise that I would never have the career I had dreamt of which was working for UNICEF or the UN. The hours needed in and out of work to build a career were too much for me. I returned to the U.K and worked part-time. When I ended up in a full-time job I relapsed again and had to leave. At that time I had a partner who helped support me and with small redundancy pay I began to train in complimentary therapies (which I had started to use due to getting no help from the NHS). I slowly built up a business doing counselling, hypnotherapy and healing. I struggled to make ends meet after my partner left, still only able to work a few hours a week. After 10 years I had a bumper year and quickly became a victim of my own success. In 2012 I relapsed harder than ever before. Overnight I lost my home, my business and my independence.

I spent 2 years in bed 24/7 and still the Dr’s didn’t care. Finally, after 3 more begging attempts, my GP agreed to refer me but warned me it wouldn’t make any difference as there was nothing they could do. I live my life horizontally and invisibly most of the time.

Since then I have lived with my elderly parents I began to write a novel to help raise awareness of ME. I self-published in 2018 and am getting 5 star reviews but I can only work a few hours a week at most. I get no state aid and am reliant on my parent’s charity. It is this creativity and escapism of my writing which keeps me going now. Although the future is one of likely homelessness and poverty, I am hoping that my novels might be the miracle I need to support me when my parents are gone.

To download my novel, see reviews and more please visit: https://linktr.ee/ktkingbooks

 

Miranda, Sweden

MISSING SINCE 2017

As healthy I was very active; trained spinning, swimming, circle gym, yoga, gymnastics, strength 4-6 times/week and was a yoga-instructor.

My health problems started in 2014. In 2016 I was diagnosed with Fibromyalgia and in 2018 Myalgic Encephalomyelitis. My ME has been come and gone in episodes, the episodes has become increasingly denser, longer and more difficult. Have had several episodes since I have been completely bedridden up to six months. Located like a living dead in bed, involuntarily isolated in the bedroom. When I’m in a episode I have extreme pain in my body and head, total lack of energy, muscle weakness, memory difficulties, impaired cognitive functioning, hard to find words and are incredibly sound-sensitive.

I have post‐exertional malaise, sleep disturbances, sore throat, intolerance to chemicals and foods. I use pacing to minimize the risk of “crashing”. I am resting much, but never feeling recovered. It´s like trying to charge batteries that won’t charge.

I can not choose what I want to do, not plan something, it’s the disease that governs my decisions and my life. I don´t know when the next episode come, and if it will be permanent or not. Having ME means to never know how I will feel minute by minute, whether I will be left bedridden again, and if so, for how long this time? I have to take one day at time. I’m missing training, traveling, socializing, spending time in the nature, cooking and baking.

 

 

Tanja, Schweiz

I have been dealing with ME and other Illnesses. I was a World Fitness Champion. 

 

 

 

 

 

 

Rebecca, United Kingdom 

 

I’m fighting all my anxieties this year and speaking at MM in bristol, opting for a further away venue so i can avoid public transport..and sleep in the car. I’m almost 15 now and I am so worried for my future. I have my mum and dad in my corner fighting all the time but when will this end? I dip from low energy to no energy, from long sleeps to no sleeps. Just tired but wired..hearing everything but not able to join in with any of it. I’m learning to pace now.

 

 

Lynette, United States

My not living and just existing a miserable life with cfs getting beat while limbs are weak and won’t move even while pregnant.

Alan, United Kingdom

I’ve had it since 1987 After a traumatic shock & it has completely ruined my life. Sympathy & help here VERY hard  to come by. I’m a veteran of the armed forces & they are pretty bloody hopeless at understanding it & helping me with CFS/ME/FMA.

 

 

Liz, United Kingdom

 

The doctor has no idea how to help me so I’m left to rest with the hope that with research they will find a cure or effective treatment. I was discharged from my specialist because I couldn’t attend the sessions. I tried 3 separate occasions & now I’m left to try make myself better.

 

 

 

Sarah, United States

Since I was a child, I knew I’d be an artist. In my first exhibit at 12, someone approached me to collect my still-life. As a young adult, I maintained my creativity then eventually went in to teaching at the college level after various creative jobs. My ME onset was 20 years ago as I had an unexplained 30 pound weight gain. For a decade, I continued to teach a range of subjects (nine total) but struggled with unexplained symptoms like frequently vomiting the night before class. In 2016, I was diagnosed with POTS by a leading world expert which explains the nausea & vomiting as ME shares a mitochondrial overlap with POTS. My first POTS episode was at 25 where I actually passed out.

While I was a lecturer at an elite university, I collapsed and went to the ER. 22 hours in the ER with full spinal MRI. The resident came in and said: your spine is really messed up, but we do not know what’s wrong with you. The day after the semester ended I had to file for disability. ME was challenging in the first decade, but my disease has made the last decade impossible to teach. I’ve been in severe stage for the last five years where virtually everyone tells me I don’t look sick and that I should go back to teaching, but they do not grasp my limitations.

Over the last decade, I’ve maintained my creativity to paint in my studio even though teaching was too demanding. My process is based in improvisation which allows me, when already set up, to create quickly. My aid drives me to the studio as my immunologist told me I can’t drive anymore. My art has sustained me thus far to create when I’m physically able, but my movement, thinking and walking are getting markedly worse. I use my father’s cain to help with balance. My specialists’ office is working on a wheel chair via a foundation. I can’t remember the last time I was in my studio, but I have not given it up.

 

Amy, Scotland

I am 30 and have been ill for 9 years. Lack of understanding of M.E meant I was not diagnosed for 5 years. The delay in my diagnosis resulted in me trying to push through my illness. This made me more ill and now I spend 99% of my life in bed or on my sofa with further decline obvious year on year. I miss living my life, flying, skydiving or just going out with my family for the day together.

 

 

 

Elaine, United Kingdom

The Loss of What Might Have Been

I had worked for non-profit organisations earning less than my contemporaries and working longer hours. At last I cut my hours to work part-time to follow a lifelong dream of going to Art School, also part-time. I was accepted at a college and was so excited to finally be studying something I loved and to be doing something for myself.

ME put an end to that after barely one term. I had to leave and because my vision was affected. At home I could hardly sketch and had no energy to paint. I hoped that I might return to the college but after 4 years it seems now like an impossible dream.

The grief and loss of everything that is important is enormous. The loss of social life, friends, intellectual stimulation, the sense of self and the ability to choose one’s activities be they as small as reading a newspaper or as large as travelling to visit family. There is no way to describe the ongoing grief and loss of what might have been.

 

 

 

Embla, Norway

I was 14/15 when I first got sick. When I was 16 I had to drop out of school. I didn’t see my friends for months. I spent all my time alone, in my bedroom, ill. I became invisible. It was almost like I didn’t exist anymore. My teenage years, lost. I got better, but I never fitted in at school or in my friend groups. My illness made me an outsider. All teenagers feel lost, but I think it feels a bit different when you have this illness. Sharper, more painful, more terrifying.

 

 

 

 

Laurie, United States

I’ve been missing since 2012. I was used to working and being capable and independent until I was hit with this disease. I’m in my 50s, I live alone, and I don’t have a caregiver. There is no one else to earn an income, run an errand, do a household task, help maintain my home, solve a problem, assist in an emergency, or be an advocate for me. With my foggy mind and failing body, it’s still all on my shoulders. I struggle to take care of myself and my necessary responsibilities. This is my life now. If I get worse, there is no one who will step in and take care of anything. There is no one who will make arrangements for me to get the help I need.

 

 

dSavannah, United States

 

I miss seeing my friends. I was the party planner. I got everyone together. It seems everyone has forgotten me.

 

 

 

Lainey, United Kingdom 

My name is Lainey, and I am missing from the mosh-pit. Before I got diagnosed with ME, I remember how much I loved live music – you could always find me looking eagerly for the next gig, or disappearing into the thick of the music festival crowds. A rock and metal fan at heart, I felt so alive when I was moshing with the energy of my fellow music fans.

But then, years later, ME struck. As the symptoms manifested and took hold, I found my love of live music being pulled away from me.

Sensory overload means that I struggle with bright lights and loud noises (yes, even with earplugs). Brain fog has rendered me unable to cope with large crowds. I get overwhelmed which can in turn trigger a “crash” or panic attack. Muscle pain and joint stiffness mean that I cannot cope with standing for a long time, and certainly would not be able to hold my own in the pit anymore. Yes, some (but not all) venues provide access for customers with disabilities, but often, those with invisible illnesses can get overlooked. On the surface, we often “don’t look in pain.”

 

Typically with ME, we may experience a day where we are just about able to get out and about, but then we know full-well that we will be likely rendered bedridden for days afterwards. When I have tried to enjoy live music on such days, this has always been the case for me. ME has rendered me incompatible with a lifestyle that brought much joy to my life. I hope one day I can enjoy live music again, the way I used to. Sadly, with the lack of treatment and understanding of this condition, I just feel like I am a forgotten one of the Millions Missing.

 

Scarlett, United States

My Illness is invisible.

I look normal on the outside but inside I’m in a constant battle with pain and PEM along with many comorbids that go along with ME. People will look at me and because I look normal, they will automatically think I’m recovering from my illness. (In the beginning I looked far from normal I had lost all my hair and was swollen all over). They think after seeing me for 1-2 hours and looking normal that I must be fine. What they do not see is once I leave you is, I will first have to take a 3-4 hour nap then still be unable to do anything for the rest of the day. My days are spent in prisoned in my bedroom in the bed with blinds drawn to keep the light from hurting my eyes. I will not let you see that side of this illness. I’m too sick at that point to see anyone. I only emerge after I’ve rested up. Everyday I have to make a choice as to what I will do with my envelope of energy because I only have so much and it’s gone. I only do what is necessary and a lot of times it may just be one thing that gets done but that’s ok there is always tomorrow and I can try again. Recovery from a little outing of 1-2 hours can be anywhere from 1 day to months. I pay dearly for anything that I do so I am very choosy about how I spend my time. It has to mean a lot to me to do something to give up my precious time and energy and to suffer the consequences. Those out there without invisible illnesses please reserve your judgement of us as we park in the handicapped parking spaces, just as I do not judge your disability that is visible. Let’s all be kind to one another.

 

Tiel, Nederland

Relationships: Every relationship suffers from your illness: with family, friends and even your partner. Those who can’t take it anymore, run and you stay behind, bereft of the most important things in life: the love and care of other people.

Guilt: You cannot live up to the expectations anymore. You love to have people around you, but you’re just too damned tired all the time.

 

 

Linda Lancashire, UK

I am invisible and suffer in silence.  I live inside my body, trapped, but still me.  I have been suffering with ME for nine years and as my husband says I have been robbed of a normal life. I make jewellery as a way of making my life a little more bearable.  It’s hard because the face I present to the world is nothing like the truth. I can be in bed, or just undressed and in pj’s for days but that’s not what people see. They look at me and see nothing wrong, and have often said so.  I have been treated very badly when out because I dont look disabled in any way. This adds another level if complexity to my condition as it adds to my feelings of inadequacy as a functioning human being. I hate that this disease has done this to me.

 

 

 

CJ, Canada

Do you know what it’s like to lose your identity, your self worth, or your career?  I do! In May 2012 I was living and working in Mexico, doing what I loved – teaching people how to scuba dive and others to become industry leaders.  I was a PADI Master Instructor and I could teach 21 specialities. I was a Divers Alert Network Instructor or Instructors. I was an Emergency First Response Instructor.  I was a trained sidemount and Tec diver with over 3000 dives under my belt. Now, I am NONE of those things. I am now trapped in a body that has only once been diving since 2012. I spend 85-98% of my day in bed and though I do get out a few times each week, there is always a penalty to suffer.  I choose to continue to life life joyously within the tempest of adversity, but if I had a choice…I would be back in my beloved oceans, beneath the waves, dancing with the sharks, turtles, and rays.

 

Marian, United States

I was an athlete and overachiever.  I was out on a hike when this horrible illness hit.  I suddenly felt extreme exhaustion and weakness. My friends got me back home, I slept 12 hours, woke up and thought it was weird.   Until that extreme exhaustion and weakness became my new “normal”. This illness is torture and has taken my career, my joy of being active, and my mind.  It’s like having a combination of MS and Lupus for those not familiar with ME/CFS. See ME.

 

 

 

 

 

Jackie, United States 

Extreme fatigue, insomnia cycles, constant crashes, pain and constant hives covering my entire body have always been my top complaints. Of course, I have at least a hundred other symptoms, diseases and syndromes from this. I am always resting but getting no rest, never feeling refreshed. I miss friends and going out to have fun or even a restaurant! I miss the possibility of a relationship and not being alone the rest of my life. I miss being social! I miss the beach. I miss working as a hairstylist. I miss FAMILY. I miss eating but now Im allergic to everything. I miss living on my own. I miss being able to shower by myself. Being able to think clearly or remember anything! I miss being able to comprehend TV. I miss being able to do my makeup and hair and put clothes,jewelry,shoes on and not living in pajamas 24/7. I miss laughing. I miss human contact. I miss the thought of normal life and being able to leave the house.  I miss driving. I miss not having to feel so ACHY WEAK HEAVY DIZZY EXHAUSTED PAIN which makes you grumpy. I miss being able to stand or walk for more than 2 minutes which would allow me to make food for myself. I MISS LIFE!!!

 

Gibana, Austin, Texas

I live my life horizontally.My illness is invisible.I may appear in public for one hour, and then spend the next 5 days recovering from that hour where I appeared “normal.” Most people do not see me during the time that I am in bed. I am supposed to attend a mandatory court ordered class that I continue to miss classes because I just do not have the energy. I used to have a career in Accounting and than I went into remission and decided to be a Medical Assistant. I worked with patients in Wound Care.  I got sick again and I am currently on disability. It just sucks to feel this way and I PRAY for a cure and Hope for more Awareness so people are more sensitive and understanding.  

 

Anonymous, Brighton, UK

I became ill with ME when I was 29. I am now 65. I have never been able to have a career despite being well educated. Thank God I have been able to do some things in my life but I never dreamed at 29 that I was never going to recover enough to be in paid employment. I have had better and worse phases. During the worse times I have had less energy than people in the last stages of terminal cancer. This is a serious illness and needs to have well funded research.

 

Ashley, Drammen, Norway

I may appear in public for 1-2 hours, laughing, seeming HIGH on energy, looking good in my make up and dress but what YOU don’t see is the aftermath, i spend the next 1-2 weeks recovering from that depending on how happy and talkative iv’e been and how long after the pain, brain fog etc appears until i put on my breaks and go home. The earlier, the better prognoses are for me on recovery. Please don’t say stuff like «Are you leaving already?!» it is so hard for me to say it is enough and thats why I rather not go in the first place. Encourage me and others with ME «to stop and go home. That it’s okay that I couldn’t stay longer – it was nice to meet me!»

 

Michelle, Darwen, UK

I’ve had M.E for 11yrs this September. It all started on the 22/09/08. I was working as a nursery nurse when one afternoon i started to feel extremely sick. A migraine surged through me, i felt sick & my head was spinning. I couldn’t lift my head from the table.. I was sent home immediately. Around 3days later i started to come around, i had been diagnosed with a virus. It had literally knocked me off my feet. I went back to work, but i never seemed to get any better. A month later i fainted and started feeling like i was constantly drunk. Fast forward 5months and i blacked out at home, then came the pain, it brought me to my knees everytime. I went to the doctors (you’re fine!) I saw specialists (you’re fine) I saw mental health professionals (as the doctors where saying it was all in my mind!) Guess what they said? (You’re fine!) By now even i thought i was having mental health issues. Then one day i had a seizure and lost all feeling down the right side of my body. I couldn’t walk or even move. I went to the hospital (You’re fine!) I dragged my right leg for 2wks.. In the end it took 3yrs and a mariad of symptoms to get my diagnosis, which left it to late to treat. I had spent 3yrs being made to feel like i was going crazy, feeling like i was imagining my symptoms. I was so grateful to have something wrong with me, because now i had something to fight! Sadly the fight goes on and for the last 2yrs I’ve been pretty much housebound. Bed to sofa, sofa to bed day in day out. Its a living hell watching the world go by, watching my children grow without their mum being, fully there for them. Thankfully i do rarely get a couple of hours respite and i make the most out of it, whilst i can. I’m extremely lucky! I may have severe M.E & Fibromyalgia but i occasionally get that much needed break. Sadly so many M.E sufferers don’t even get that. They’re laid in a bed day in day out, in a darkened room. Unable to eat without tubes and unable to take care of their personal needs. With no hope for the future but a life, living a death. They need a treatment, a cure & respect. We all need research, we all need help and most importantly we need understanding and respect!

When you live with M.E you live with..”Well you don’t look sick!”

No I don’t look sick! But, then those two hours where you saw me manage to get out and socialize, are then followed by at least a week to six weeks of recovery. That means laying in bed or laying on the sofa, unable to stand, bath or shower. Unable to spend time with my children, to talk on the phone and quite often unable to eat. Wrapped up in severe pain whilst praying for my next good day. Watching life pass me by as i lay there.. I will NOT stop fighting though and every hour i manage to spend outside of these four walls is worth the pain. The photo included is me straight after managing to spend two hours sat in the pub for my daughters 18th. I got home fell into bed in severe pain and cried. I couldn’t remove my makeup or my clothes so i had to crawl onto the bed as i was. I finally managed to clean off my makeup with wipes the next day. But i was unable to bath for over a week. The second photo is me before M.E, During a very good day & me on an average day. Again i will not let my life fully pass me by without a fight! Yet there are still dark, dark days where the point of life surpasses me.. What is the point? I can’t LIVE i just survive! I’m no use to anyone, i can’t work, i can’t help my children with their homework, i can’t keep my house clean, i can’t take a lovely relaxing walk in the woods, damn half of the time i can’t even brush my teeth. I cry in pain both physically & mentally.But then i fight for my life once again! I hope one day for a treatment, for understanding, for respect for the life i once had. I will never give up!! But, i will cry and consider giving up on a daily basis. Friends and family lost, just my husband, children and a few close friends & family left.Everyone else has long gone, given up on me 10yrs years ago, taken me for a lost cause, a hypochondriac, lazy and selfish for missing special occasions.They all saw my healthy look and took that for gospel.They didn’t see my pain, my seizures or my life slipping away, nor did they care! I will never feel angry and i will never lose hope, I will just keep hoping that one day we will all have our lives back 💙

Liz, Atlanta, Georgia

I was a backpacker and a hiker. I loved to walk through the woods, to camp out, to feel the earth under my feet. I had a backpack that I would stow with 35 lbs. of gear, pull it up over my shoulders, buckle the hip harness and hike confidently into the backcountry for days at a time. I can’t do that anymore. In April of 1991, I caught what seemed to be the flu. It was a Monday.  I remember it clearly because I was angry that I was suddenly so sick – this flu interrupted my plans, my work, my life. I never recovered. In that first maddening year, I consulted 7 doctors and endured numerous tests. I was prescribed medication for nausea, head-aches, insomnia and pain. Nothing worked. All the while my health declined so precipitously that by the end of that first year, I was bedbound.   It was the 7th doctor that said, “Chronic Fatigue Syndrome.” I was both relieved (it had a name!) and insulted (it’s called Chronic Fatigue Syndrome?). Fast-forward to today and I’m still battling the same, damn disease. And I’m one of Millions. As a long-term, disabled ME/CFS patient, I endure for lack of any better options. I hold on to the hope that I find within the ME/CFS community. We are down, but not out. From my bed, I see my backpack leaned against the wall of my room.  I cannot bring myself to move it. I like seeing it there – I like to think it waits for me. It reminds me that there was a time when I walked on my legs. A time when I walked far.

Melinda, USA

I was the breadwinner, achieved HR Director for a multi-million dollar account, traveled extensively and was in demand for assisting other accounts. All by the age of 28.
My identity WAS my career and success. Working 60 hours was nothing, I’d also go and volunteer heading committees for my local Relay For Life.
Even when first ill, not knowing what was going on, I had to take positions with less responsibility but still kept pushing in my HR career ensuring I was the best in what I was doing.
And then, in my thirties I started to become unreliable after a horrible virus. I had built my reputation on getting things done and getting them done right. I suddenly lost the very thing that was me. I couldn’t be that resource, that go-to person. Disappointing my superiors and especially my employees was devastating – and I couldn’t even tell them why it was happening.
My Advocacy comes from that place. I still feel I owe them the why in how I failed them, unable to do my job. It’s been 4 years since I completely lost my career. I now have a diagnosis, but I still don’t have the answers.

Renea, USA

I’ve been dealing with this hideous disease for over 31 years. I was 28 years old. When my life, became just existing. Before ME/CFS, I was so active. I worked with youth, taught Sunday school, cared for sick in laws, and grand mamas, spent joyful times with family and friends, co built, our home, with my husband, and was able to enjoy time with my beloved husband. That STOPPED SUDDENLY! I’m NOT even able to enjoy sitting on my porch; on a beautiful day. I can’t enjoy music. It hurts, my ears. I’m unable to enjoy holidays, with family. I’m unable to, go and start, my car, whenever I want. I don’t have the strength. Unable to go, anywhere. Somedays, I watch TV, with wielding sunglasses. Because, the light, from the TV, hurts my eyes. At times, my eyes throb. My complete body hurts. I suffer from severe migraines, severe muscle spasms; that can be seen and includes all my internal organs. My digestive system, and ability to eliminate, my body’s waste, is difficult and causes tremendous pain. I don’t have osteoporosis. Yet my bones, from my ankles, up to my my neck are degenerating, and shifting. Before this mess. I was extremely sociable, and possessed a large, and ever expanding vocabulary. I was a excellent problem solver. Now, I do well, at simplistic speech. Forget, correct spelling or simplistic problem solving. I will not place, myself, in a crowd. My anxiety, goes through the roof. I went from sleeping 14 hours, a day, to an average of 4 hours, a day. A really good week, is being able to bathe, and wash my hair, 3 times a week. That’s with my husband’s help. That’s where, I am Blessed. My husband, and Primary Care Physician Believed, I was REALLY SICK! Friends and some family, exited, within, a year, of my diagnosis. My Faith, has been, extremely important, for my desire, to continue. As has been, my love, for my husband. And his love and devotion to me. I am Angry, Flustrated, Exhausted, Heartbroken, and Grieving, for the loss of simplistic living. I Will Not Give Up! There’ve been times, when I’ve came really close, to giving up. And just ending my life, by my hand. I’m glad, I didn’t. My spirit is uplifted by those, whom have dedicated their time and talents; to bring attention to, diagnoses, and healing, of this disease. Hopefully to end the suffering of ME/CFS.

 

Emma 

 

I came down with a virus during my AS exams, aged 17. It never went away.

I’m lucky, I’d almost finished school. I’d had my childhood and most of my teens, and I was starting to become more confident and work out who I was. But this was made it feel all the worse when I lost everything. I’d been a person that was always busy, getting involved in anything I possibly could. Then suddenly I couldn’t. I pushed myself so hard to finish my A levels and made myself so much worse because of it. I was constantly being told to stop, take a break, but in my head it just wasn’t an option. I wish I had now.

The next three years I watched all my friends go off to uni, meet new people and get on with their lives. I cut myself off from them, it was too painful and I never knew what to say when they asked what I’d been up to. One day I managed to go out for a meal when they were home for the holidays. Someone I vaguely knew asked what I did at uni or for work. When I mumbled something about being ill their response was ‘so what is the point of you then?’. Others stood up for me but they were exactly right. There wasn’t any point in me any more.

Slowly I managed to rebuild my life in a new way. I learnt how to pace myself and what I could and couldn’t do. I joined a band and did some online volunteering that I could come and go from. Eventually I started looking at open university courses, then actually found one I liked at a brick uni fairly close to home. I’m now 23 and just finishing my second year there. It’s the hardest thing I’ve ever done- no one expected me to last two weeks let alone what I have. I rely on my parents and boyfriend so much for food and practical support, and the uni are great at giving me the adjustments I need and time off etc. I hate having to do that but it allows me to put my energy into having a little bit of a life. So far I’m averaging a first so I must be doing something right, despite the struggle.

Most people still don’t know about my condition. They only see my good days, then I disappear back home after a couple of hours to bed. The only treatment I was offered in my three years at home was psychotherapy and antidepressants. My family have had to fight for every investigation and the other diagnoses I’ve received, which I’ve still not had treatment for. My GP now at uni is brilliant bit there’s still nowhere he can refer me to for treatment of CFS/ME. He just does his best to listen to me and treat new symptoms where they come up. At the minute due to lack of funding and research, that’s all ME patients can hope for.

I’m one of the lucky ones. I retained a basic level of functioning and am now despite how hard it is moving on with my life. But I’m constantly exhausted, dizzy, shaking, in pain, unable to think straight, the list goes on and on. The mental and emotional tolls on myself and my family are huge, not even mentioning the physical ones. But with their help I’m surviving, which I’m eternally grateful for. So many others don’t have that option.

 

Thank you for bravely sharing your stories with us. Follow the conversation on social media to hear more stories and interact.   

 

 

 

 

 

 

 

 

 

 

 

 

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