The following text I wrote back in January 2018 after watching the documentary ‘Unrest’ on Netflix, and I shared it afterwards with my friends on my private (protected) Twitter account. I haven’t edited the text. 

January 17 2018

I am one of the ‘Millions Missing’

My thoughts after watching the documentary ‘Unrest’

Monday January 15 2018 the documentary ‘Unrest’ from 2017 about the chronic illness ME was released on Netflix. I watched it that same evening and it was such a powerful experience that hit very close to home. I sobbed through the entire film and it left me thinking a lot about my own life, thoughts I can not seem to shake off, thoughts I just have to share with you all.

I am a ME sufferer myself. I’ve been sick for many years (I finally got diagnosed in 2012) and even though I am not bed bound like many in the documentary,  I am still what is considered to be housebound. I spend 95 percent of my life in my flat… If you look at an entire year.

It is not just that I have a chronic illness called ME. The illness itself comes with a lot of different symptoms and manifestations. Headache, pain, nausea, fever, flu symptoms,  brain fog, exhaustion of different kinds because of e.g. lack of sleep, various sleeping problems, cognitive problems, depression, massive fatigue, constant low energy level, no tolerance to exercising, problems with walking, IBS and stomach problems, food allergies and intolerances, light and sound sensitive…. This is just some of my problems, the list goes on.

I live with this every single day. I don’t know how my day is going to be when I wake up. I don’t know what symptoms my ME is going to throw at me when I open my eyes in the morning. It can be a bad day, a very bad day or an OK-ish day. It can be a day where I hardly can get out of bed in the morning because of pain. It can be a day where my brain is massively fogged and I can’t think straight and light and sounds are killing me.

It can be a day where my IBS is making a fuss and I have to cancel all plans I had made that day about getting out of the flat. I never know. It’s like playing a shitty kind of lotto every single day and all the prices are even more crappy than the other.

There haven’t been a – what normal healthy people call a good day – in years. My good days are what normal healthy people would call a bit off, perhaps even say they are a bit under the weather. I rarely have a good day. I have learned to live with it, my OK-ish days are what I live for, that is when I manage to go out, to clean the bathroom or do the laundry…. And get to pay the price afterwards, because that is how it is. You don’t get anything for free with ME. Everything that costs energy comes with a price and you get to pay. Some days you get a small bill to pay, other days you get a massive kick in the butt. You never know until it hits you. Pain. Brain fog. Massive fatigue. Flu symptoms. Fever.

That is why I rarely go out. Why I have no hobbies that requires I leave my flat. Why I do not do sport or exercise. Why I do not have a job.

I have lost all my DK friends. I have no partner or children. I am on my own and have to do everything myself. The cooking. Laundry. Cleaning – not that I clean much. Grocery shopping is done online now to save energy. Every single thing normal healthy people take for granted cost me a huge amount of energy. A shower. Making a light meal for tea. Emptying the dishwasher. Tidying the kitchen. Some days my brain is so fogged it is impossible for me to concentrate on watching telly, reading a book or even have a conversation – if I am so lucky I have someone to talk to.

I do not go out often, sometimes there are weeks in between. Some months I go out 3 or 4 times, if I have a doctor’s appointment, dentist appointment or an appointment with my hair dresser. Shopping is not happening often, sometimes once a month, others perhaps twice, simply because I have to go, because there are important things I have to take care of. It requires a lot of planning and if I’m not feeling well on the day, I have to postpone my shopping. Doctor’s appointments I never cancel, but I have cancelled appointments with my  hairdresser and dentist because I was too exhausted that day, in pain or e.g. my IBS messed with me.

I don’t drive, so I have to rely on the buses, and that is a constant pain even though I live in the third largest city in Denmark. It’s getting almost impossible to get around and I can’t spend a huge amount of money on taxi rides, even though it saves me a lot of energy. So transport is also something I have to think of when I am planning to go out.

Cinema visits are also rare. I love going to the cinema, but there are so many movies I have missed out on, because I was too sick to go. On other occasions I have forced myself to go, e.g. to NT Live performances, but have had to pay the price of being even more sick afterwards.

On rare occasions I go on holiday. It requires a lot of planning that takes energy, it cost me a lot of energy when I am finally on my holiday and I get sick when I get back home. But I have to go. For my own sanity and for my mental health. I need to get out and see something else. Meet my friends outside Denmark. Get inspiration. Feel free and just for a moment feel like a normal person. Have some fun. Forget I am sick. Do the things I normally don’t get to do. With other people. Not alone. Alone is what I am at home.

My trips to the UK give me life. I live for my trips even though it is exhausting and I get sick afterwards. They are so worth it. All the aches and pain when I’m there and all the aches and pain when I get back home.

It is not easy living with a chronic illness that is invisible and a chronic illness many doctors do not even believe exist. I am so unfortunate to in a country where ME is considered – a long with many other physical illnesses – to be either a psychiatric or a functional disorder. The latter is NOT a diagnosis at all, the same goes for the never term Bodily Distress Syndrome. As you see in the documentary ‘Unrest’ Denmark treats patients with ME in a horrible way.
I watched that hearing about ME (and other illnesses) and Functional Disorder back in 2014, it was live broadcast on the internet. Nothing has happened since. We are still treated as we are more mentally ill than physically ill. If you ask for help with your illness your treatment will be e.g. mindfulness, graduated exercise, and cognitive therapy. Watching those small segments from the hearing in the ‘Unrest’ documentary triggered my anxiety so badly I had to mute the sound and look away.

I was so fortunate to be diagnosed by a retired specialist – he has sadly passed away now. But that doesn’t mean my life is any easier, because it is absolutely impossible to get any help. You are really left to your own devices and no one believes you, when you tell them you have ME. I now have a GP that knows about ME and fibromyalgia, and doesn’t believe in Functional Disorders etc., but he too finds it difficult to help me, because the of the system and rules in Denmark.

It doesn’t make it any easier that my sick story is very complicated. I have many diagnosis, some of them psychiatric diagnosis, those the medical system and health authorities in Denmark just love to tell us are the main reasons in e.g. ME.

I can’t get any help with cleaning, I have to pay myself. I can’t get help with taxi rides or something similar, I have to pay myself. Basically, I can’t get any help, so yes, I have to do everything myself and I do my very best.

As I explained earlier, everything I do has a price I have to pay afterwards and I do not have energy for everything. A lot of things have had to go. My entire social life. My entire work life. My interests and hobbies. My long walks. My shopping trips. It is basically down to basic surviving on a daily basis. That my cat gets some food. That I get some food. That I get a shower at least once every second or third day… Or sometimes after five days or a week if I am battling a flare up.

It’s horrible to be constantly sick and just feel completely alone. That I have to prioritise my energy every single day. But I have somehow learned to live with it, because I have to. It’s hard, but this is how my life is. Yes, it’s often pretty boring, but at least I’m alive and most of the time somewhat pain free.
I live for the small things in life. I live for my cat. I live for when I am able to go to the cinema. When I can be a bit domestic. When I’m able to read books, dance ugly in the living room, cook something new for tea. Write. Sing. Finally get some sleep. And my trips to see friends. That is perhaps the best thing ever for me, even if it only happens once or twice a year.

Many people don’t know all this, because it’s all so invisible. They know I’m sick, but not how much or how much it affects my entire life. I really hope people will watch ‘Unrest’, because it will hopefully make them understand how horrible and debilitating this illness is.

… And hopefully they will come find me so I don’t have to be one of the millions missing anymore.

Less than a week after I wrote this very long and personal text and shared it, I had a major crash in my ME and I was really really sick and unwell for months. Now more than 7 months later I’m still struggling with the aftermath of this major setback. Many of the things I write about above are even more difficult for me today, but I’ve also learned some things about e.g. myself through all this. I’ve e.g. learned, that I might be entitled to get some help. I’ve also been on holiday, something that was just as wonderful as it was horrible because I was still really unwell. I don’t regret going, though. There have been both positives and negatives the last 7 months, but it’s not been a walk in the park. I wrote a new text (or you might call it a letter, there was a personal message to them in it) to my friends on Twitter a bit over a month ago. I might share that too on my blog, or extracts from it.

I will later try and write and explain more about the impact setbacks, flare-ups etc. have on a already messed up ME-life. My ME story/background will also be posted at some point in the future. 

On the medical and political side of ME, things have happened too, e.g. here in DK – please read the last two paragraphs here

The documentary ‘Unrest’ is – as I wrote above – available for streaming on Netflix. On the official website you can see how you can watch it in your country/territory.