My story – Life with ME

Norwegian version posted on Trine Grung’s blog 26 February and 22 December 2018.  

ONE OF THE MILLIONS MISSING

It’s January 2018. Christmas and New Year have just passed, but I couldn’t join the celebration this year. I was alone on Christmas Eve. Gifts and dinner were delivered to the door. I just lay there with my eyes closed. I couldn’t watch TV, read or play music. I couldn’t participate in any social gatherings during Christmas-break, except a 3 hours lunch with some friends. I became bed-ridden afterwards. The exertion exceeded my limits, so I ended up alone on New Year’s Eve too. It was the 3rd year in a row I glazed up at the fireworks alone, knowing that I had lost another year of my life.

I have ME. The world’s most misunderstood, complicated, invalidating and stigmatized disease.

Jennifer Brea’s wise words in the award-winning documentary UNREST(available on Netflix) are: “Sickness doesn’t scare me, death doesn’t scare me. What scares me is that you can disappear because someone is telling the wrong story about you. ”

This is me in 2014. The year before I went missing. I hope you will take the time to read my story.

Skjermbilde 2018-05-11 kl. 08.17.27

LIFE BEFORE I GOT SICK

On March 22, 2015 I got on the plane that would take me to Bali. I updated my FB profile and wrote: See you in 3 months! I could hardly believe it! 3 months in Bali!! A dream was about to come true. I traveled alone and felt fearless and expectant. I had been on a similar trip in 2010, when I travelled to India alone for 2 months. I had never experienced a greater enrichment in my life, and now it was time for a new adventure!

I had been to Bali once before, in 2013. It was during a bike ride through the small towns I realized I had to go back and that I would be there for a long time. I was simply in love with the life of being there. I loved traveling, but I also loved working and had devoted much of my life to it. I was the PA to the Managing Director of an Oil Company, assisted the Board of Directors, worked with HR and organized all the company events. The latter was what I enjoyed the most, and I worked around the clock for everything to be perfect. I was happy at work, but I still had a craving to travel the world, and new destinations became the reward and the counterweight to an active life with a lot of stress and high work pressure.

Now I had been granted 3 months off work. The goal was to LIVE, nourish my own health and do something meaningful for others along the way. I said goodbye to family, friends and colleagues and left my 20 years old daughter in charge of the house. I laughed at the thought of my colleagues joking about me never coming back to work again. What if something exciting happens over there and they end up being right? Can you imagine?

BALI 2015

The months in Bali were amazing! I spent most of my time in Ubud, but also a couple of weeks in Seminyak, 10 days on the Gili Islands and a tour of Kuala Lumpur. I volunteered at the Bali Spirit Festival and made new friends from all over the world.  The days consisted of the FREEDOM TO DO WHATEVER I WANT!

Skjermbilde 2018-05-11 kl. 08.17.38

There was yoga, meditation, dancing, singing, tours, picking rubbish, massage, sun, swimming, books, sunsets, beach-club’s, cruising around on a scooter and lots of other fun activities.

Until May 28th.

DENGUEFEVER

I had been swimming in a waterfall with some friends during the day. It was an exciting day and when we drove the scooters through the most beautiful landscapes I remember thinking; “I have never felt happier as I am right now. This trip is the best thing I’ve ever done for myself. Everything that happens after this is perfectly fine. Because I’ve lived! I’ve dared to follow the dream of living in Bali.”

Skjermbilde 2018-05-11 kl. 08.17.51A couple of hours later whilst writing a travel letter home, I suddenly start to freeze. I feel really sick very fast, so I turn off my computer and crawl into bed. The next day I was diagnosed with Denguefever, a mosquito-borne tropical disease. There’s no vaccines against it and it is untreatable.

The virus caused great damage. In addition to attacking the blood, it attacked the lungs, liver and gallbladder. I was hemorrhaging and had an allergic reaction. After a week I was so sick I worried if I was going to die. I was hospitalized and 3 days later I was discharged again. I felt just as bad and left with a fatigue I’d never experience before.

The next weeks I was resting in the hotel room, waiting for a recovery which didn’t seem to take place. When I finished the travel letter I had started on May 28th, I compared myself to a broken cellphone which was only 5% charged no matter how long it was plugged in. How could I possibly manage the long journey back home to Norway? And what about my job? They were expecting my return on July 1stwhich was less than two weeks away… I needed to get well and fast!!

ME DIAGNOSIS

I received the dreaded diagnosis 10 months later. In April 2016. It didn’t come as a shock. I had googled it 6 months earlier and had a hysterical breakdown when I realized I might never get well again.

My body had collapsed a month after I came back from Bali. The brain too. I had ignored the Doctor’s advice of not going back to work yet, and I had ignored the new symptoms that arose during the working day. Even though I only worked for 4 hours a day, I was completely broken afterwards. I dived into bed, pulled down the blinds since I suddenly couldn’t withstand light and I lay there until the next day. The strange pressure I had started to get in my head always disappeared during the night, so I was 100% sure I would get well again if I only got enough rest. Meeting up with family and friends could wait. In addition, I had lost the right to sickness benefit since I became ill on unpaid leave. So I had no choice at all – I had to work!

The day before the collapse, I had been in a long meeting with the new Manager when cognitive difficulties had arisen along the way. I suddenly forgot words, couldn’t remember what to say or find the right words to use in simple sentences. My brain felt like it was about to explode before I had to excuse myself and ran out the door.And this would become my last day at work.

EXAMINATION

The Health Service called it “setback from Denguefever.” I said this was different, that itSkjermbilde 2018-05-11 kl. 08.18.00 felt like something was wrong with the brain. The Doctor replied that we don’t have feelings in the brain. A new Doctor said I had Borrelia/Lyme disease, and I was put on antibiotics for several months without this affecting the situation. A lumbar puncture would later also reverse this diagnosis. I was told to live as if I was hospitalized, so I was bedridden most of the time and had all the food delivered. But I kept getting worse and developed more and more symptoms indicating that something was very wrong. But all my blood samples, X-ray, CT, spinal tap and MRI of the head returned as normal. There was nothing to do. I just had to wait until it passed.

But it never passed and every time I tried to do something It made me feel even worse. It didn’t matter if I watched TV, talked, laughed or went for a short walk in the neighborhood. Absolutely everything I did made me worse and nobody could tell me why.

I had got ME.

THE SCANDOULESS HISTORY OF THE DISEASE

ME (myalgic encephalomyelitis) has been registered as a neurological disease in the WHO since 1969. (ICD-10 G93.3) It is usually triggered by a virus or bacterial infection, and it’s affecting 15 – 30 million people all over the world. Both children (as young as 5-6 years), adolescents and adults. Women and men. 75% are disabled and can’t work or go to school. 25% are completely housebound/bed-ridden. Approximately 5% will recover. A few have died. And there is no cure.

Early research had not given any results, so in the 80’s USA and the UK decided that chronic fatigue was the same as ME. They formed the new name ME/CFS (chronic fatigue syndrome), which now became the diagnosis to everybody who were exhausted for at least 3-6 months, regardless of cause, symptoms and functionalities. In this way people with a severe neurological disease ended up in the same category as those who were stressed, burned out, depressed, traumatized or anything else that might cause exhaustion.

Support for research ceased and the disease was considered a psychosomatic condition for the next 30+ years, to be treated through graduated exercise (GET) and cognitive behavioral therapy (CBT). Measures which may help people suffering from chronic fatigue, but which make ME-patients even sicker.

Due to the lack of research there is no medicine, nor any biomarker which can identify the disease. Diagnosis is therefore set according to criteria. 2.4% of Norway’s population meets the simple Oxford criteria, but only 0.2% meet the strict Canada/ ICC criteria. Apparently, we’re not talking about the same patients, but we still have the same diagnosis and “treatment.”

LIFE WITH ME

I experience my everyday-life as having about 10% energy compared to earlier. All I do that exceeds this tolerance makes me worse, whether it’s physical, mental or social. Positive or negative.

The medical term for this is called PEM (Post Exertional Malaise), which is the cardinal symptom that separates ME from other conditions of fatigue. We collapse after minimal activity.

There are 4 levels of the disease (Mild/Moderate/Severe/Very severe). I fluctuate between being moderately and severely ill. That is, I’m mostly homebound and spend most of the time on the sofa or in bed. But can manage on my own when I maintain a low activity level. Both personal hygiene, housecleaning, watching TV, talking on the phone, reading, writing, shopping, cooking, driving, walking and all other tasks are included in my 10% budget. In other words, I must prioritize and plan everything I do. And that’s not much. Sometimes nothing. Should I shower or clean the kitchen? Watch TV or surf the web? Food purchases and cooking are the most challenging part, as it can’t be postponed until I feel better. Therefore, I need a lot of help on food and I’m also a frequent take-away customer.

When I wake up my body feels heavy from lactic acid, with a headache compared to a hang-over and a body-ache resembling the flu. Every day! It won’t go away regardless of how long time I’m resting. When I have activities coming up I know will take all the energy, for example a Doctor’s appointment or a visit with family or friends, I have to charge my battery 1-2 days prior to this, by doing absolutely nothing, or as little as possible. If I don’t, or if the activity exceeds my limits anyway, I will pay a very high price. Let me give you a few examples of this:

SPAIN 2017

Skjermbilde 2018-05-11 kl. 08.18.16I was very proud when I arrived the family condo in Spain, a Saturday night last June. It was my first trip alone after I got sick. My dad had bought food and beverages prior to my arrival, so everything was set up in the apartment. The plan was to enjoy and hopefully benefit from a couple of weeks in the sun. As expected, I was feeling bad the first few days, and was looking down to the beach and the lively bars and restaurants I could only dream of being a part of.

Wednesday was my first good day. I rented a sunbed and lay on the beach all day long. I was SO happy and thought every day left of the holiday would be just like this. When I was back in the apartment, a 5-10 min walk from the beach, I enjoyed a glass of wine on the terrace and wrote in my calendar: “Didn’t need to rest after walking up the stairs. Hurray!”

It became my first and last day at the beach. 6 days later I returned home in a wheelchair, having been more or less stuck in a dark bedroom since Thursday. A few trips out to buy food made everything even worse. After taking the garbage out based on energy from a can of Coca Cola, my muscles just collapsed. I couldn’t walk or move any of my limbs! The muscles were twisting and twitching, and it felt as if the blood had turned into cement. The pain was almost unbearable, the nausea overwhelming, and the brain didn’t tolerate any form of stimulus or sensations. My earbuds didn’t provide enough protection, and I had to wear sunglasses towards the moonlight at night. It was an emergency! I needed to get back home!

My dad jumped on the first flight to Spain to help me pack and clean. I hung in his arms as he pulled me up the stairs to the car where other family members waited to accompany me home.

The return trip made me even worse, despite wheelchair assistance and that I occupied 3 seats on the plane. It was my birthday 4 days later, and when my mum, sister and brother-in-law came visit with presents and cake I could only be up for 10-15 minutes. I went back to bed without saying a word, as I couldn’t speak. I just wanted to die.

It took 6 weeks before I could drive a car again and 8 weeks before I could go for a walk. It felt like I was reborn!

Skjermbilde 2018-05-11 kl. 08.18.26

TREATMENTS

I have tried all kinds of treatments, ranging from acupuncture, homeopathy and supplements to the Dead Sea Clinic, LDN medicine and therapy, and much more. Nothing has helped.

When the local hospital referred me to a Stress Management course for ME-patients, which apparently had helped many, I gained great hopes. However, the course proved to have the opposite effect on me. I got home worse and was very upset about the attitude of the course leader.

We had only been 2 out of 8 participants with ME-diagnosis. The others attended because of stress, anxiety, pain etc. Yet, the Psychiatrist who led the course treated us accordingly, as if ME was the common name for any kind of fatigue. He said: “Don’t listen to your body. Ignore the symptoms. They are not dangerous. You can’t die from them. There is no energy failure. You have no disease.

ME is just going through a bad period. You can get ME in your relationships and sex-life too …”

And the receipt for healing was 4 meals a day, 8 hours of sleep at night, 1 hour walk a day and to practice Mindfulness.

After 2 days on the course and several hours of rest a day, I defied the symptoms and joined the others on a short walk in the forest. What if the Psychiatrist was right? The next day I was bed-ridden at the hotel, after a sleepless and painful night. I was too sick to attend the course.

Half a year later I sign up for an 8 weeks Mindfulness course, hoping it will help. Half way through the course, I wake up to a very good day and use it to write a long letter. I know I’m taking a huge risk, since I’m also attending the Mindfulness course in the evening, but I’m hoping 5 hours of rest will be enough.

Oh boy! When will I ever learn? My body collapsed shortly after the course had started. I lay on a mat with soundproof earplugs and a blanket over my head for the next 2 hours. I couldn’t talk or get up. The symptoms were the same as I had in Spain, and they got worse for each minute that passed by. The sound of the other participants talking and moving the chairs were so painful that I wanted to scream out loud. When the class finished, I had to mobilize everything I had left of energy and disappeared through the doors without a word or smile to anyone.

I lay in the back of the car on our way back home, and somehow managed to push myself up the stairs by leaning my weight and upper body over the railings of the staircase. I woke up 3 times that night, from my body shaking like a leaf.

I became bed-ridden for the next 3 weeks and lost the last classes of the Mindfulness course. I also had to cancel a new holiday I had dared to book, hoping that might be a good idea.  When I went to see my Doctor, he said: Maybe you will feel better if you start taking anti-depressants…?

That’s life with ME.

PARADIGM SHIFT

But there is hope! After 30 years of neglect, strong polarization and millions of patientsSkjermbilde 2018-05-11 kl. 08.18.37 worldwide who remain sick, the Institute of Medicine was assigned by the US health authorities to review 9000 research articles on ME/CFS. In February 2015, they (IOM) issued a report concluding that ME/CFS is a physical disease and that the idea of ME being a mental disease needs to stop.

The National Institute of Health (USA) later published two important publications in which they acknowledge ME/CFS as one of the most challenging diseases that science has yet to unravel;

1) NIH takes action to bolster research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
2) Moving towards answers in ME / CFS

ME/CFS is an acquired, perplexing, debilitating, chronic multi-system disease characterized by systemic exertion intolerance, resulting in significant relapse after exertion of any sort.The disease includes immune, neurological and cognitive impairment; sleep abnormalities; and dysfunction of the autonomic system, which controls several basic bodily functions. These symptoms result in significant functional impairment accompanied by profound fatigue. Additional symptoms may include widespread muscle and joint pain, sore throat, tender lymph nodes and headaches. “

In 2017 the United States authorities also removed the advice on GET and CBT as a treatment for ME, and several countries in Europe are working towards the same goal. More money is now being donated to research, and recognized Researchers are dedicated to break the code. The Open Medicine Foundation’s esteemed ME/CFS Scientific Advisory Board members, includes three Nobel Laureates and six National Academy of Sciences Members.

It feels like a revolution!

THE BRUTAL REALITY

However, most people are still unaware of the severity of ME, and the shift in medical consciousness. Some people hold on to old prejudices and stigma. Many professionals are ignorant, others fight to maintain the old view of ME as a psychosomatic condition. Patients meeting the Oxford criteria, are still being used in studies for ME, and the results are being tampered with.

Parents are deprived of seriously ill children, and many are denied care for nursing their sick children at home. Some people are forced into psychiatric care, some stay in nursing homes for elder people, and others give up and take their own lives

HOPE FOR THE FUTURE

I have gone from being an active and social person with unlimited energy, to lie alone and isolated in a dark apartment. Due to a mosquito bite. Others due to Epstein Barr, the flue, pneumonia etc.

I’ve been told that it’s all in our head, that we are at home feeling sorry for ourselves, being lazy. Apparently, we’re out of shape, suffering from heavy psychological problems, and can get better if we want by improving our brain paths (= positive thinking). Apparently, we’re also afraid of activity and therefore maintain the illness and remain sick. In addition, we are often distrusted because we don’t look sick the few times we are able to leave our homes.

The time has come to replace the stigma and harmful attitudes with increased knowledge and research. Enough is enough! Please don’t tell the wrong story about us.

All fatigue is not ME and ME is much more than fatigue.
We are seriously ill and need help to get well.

Thank you for reading my story. I hope it will contribute to raise the awareness, end the stigma and more support to ME research. (Norway/ USA/ UK)

Happy International ME Day, 12 May 2018!

Love Sissel, One of the #MillionsMissing

Skjermbilde 2018-05-11 kl. 08.18.50

4 thoughts on “My story – Life with ME

  1. Fabulously written! My daughter and I will be attending the millions missing event in Manchester. Here’s hoping if not a cure, that something can be found to give people their lives back

    Like

    1. Dear Helen

      Thank you so much for your kind feedback, and apologies for my late respons. Im just starting to learn how to operate this site, pheeww. 🙂

      I hope you and your daughter had a good day at the MillionsMissing in Manchester. I was also involved in organizing the event in my hometown.
      We’ve just got English subtitles in case it is of interest. Please see more info in yesterdays comment.

      All the best from Sissel

      Like

  2. Dear Sissel thank you so much for writing this excellent article about your life with M.E. I could relate with so much of it as I’m sure could other people with M.E. You are not alone when you are in your bed feeling so very ill. The symptoms are hellish, so isolating and it can be scary…life passes by….and we lay here completely exhausted in pain, brain-fogged plus so many other horrible symptoms. The UK government’s attitude to ME is appalling, we the sufferers have to educate and demonstrate until proper funding is made available for research which results in a cure being found. With love & solidarity to everyone battling with this hellish illness. Caroline from London UK

    Like

    1. Dear Caroline

      Thank you so much for your kind words and loving support, and Im so sorry about my late response.

      I was involved in organizing a MillionsMissing visibility action in my hometown on May 12th, which became such a nice event, but its also been a challanging time afterwards.
      But it was so worth it! We got coverage in 4 local media and have reached a lot of people, incl Politicians and Health workers, who now hopefully has a better understanding of of our disease.

      We’ve just got English subtitles to what was said on stage, in case you’re interested in listening. The first speaker (not the host) is the mother of a 17 year old girl, who is among the sickest pasients in Norway, sharing their story and how terribly they are treated by the Norwegian healthcare-system.

      The male speaker is a well-known Professor and ME Advocat in Norway. He also gave a very good and important talk.

      So glad for MEAction and how patients now are building networks across the borders, and for the togetherness between us. Its making it so much easier to cope with this brutal disease, when we can relate to each other. ❤️

      Wishing you all the best and sending you much love in return.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s