illustration by © Thies Baert
2016 turned out to be one of the most challenging years I have ever had to deal with. My housing situation was impossible in combination with my disease. I reached a real breaking point and became in need of urgent help. What did the Dutch health care system have to offer me? Did I get any help??
My new place of abode.
Beginning 2014 I moved into my new flat. After being without my own place for 1 ½ years and living with friends and having a moderate form of Myalgic Encephalomyelitis (M.E.) this was a great moment. The city of Amsterdam (Dienst Wonen) decided that I could look for a flat. I was in far better shape than now but my disease was chronic and it was hard living together with other people because of it.
So while I already decided on this flat I crashed very hard just at the end of 2013 where I spent 3 months in the dark in bed, a whole new experience for me. So as I was too ill to look for anything else I thus signed the contract.
This place was perfect.
I also took this flat because it was cheap, close to my friend who could take care of me if needs be and although it was an old house my upstairs neighbours were apparently quiet folks. It had a beautiful back view over a garden with a big balcony and the street at the front was rather quiet.
The first weekend my neighbours went on holidays for a whole month. So it was great. I could relax and get used to the place. But even when they were back things were super. Yes you could hear every step but it was doable. They had their sofa and TV on the other side of the room so at times I forgot they were even at home. This place was perfect. I was slowly improving a bit again.
A few months later she (I’ll call her Trudie) told me the good news, they were expecting a baby together with her boyfriend Simon (also not his real name). My face probably made a strange little twitch because she immediately recognised that with my condition it was most likely not such good news for me. She had told me before that she would love it if she could take away some of my symptoms and she knew sound was a big issue. Super sweet. But with a reassuring closed eyed nod of the head she said we would be able to work that out. No need to worry. As the things went so well I had no doubt that we would be able to work it out and communicate about it in a way that for both parties would keep the situation livable.
Akachan (The baby)
About 9 months later there was a small baby boy Michael (yes, you’ve guessed it, not his real name). Obviously it was busy upstairs, diapers, milk, crying, running, stress. Completely normal and I didn’t complain. But once the baby was at the daycare and one of them or both were at home they were still at that pace stomping around. So I told her and she was very understanding. She answered me with “Oh that terrible, we’ll take extra care.”
A while later the baby was in his bouncer seat or something and moving around enjoying himself like babies do. The only problem was that the metal frame of the seat was directly on the wooden floor. The noise was crazy loud. So I gave a call upstairs as I knew Simon was taking care of Michael that day. In that conversation Simon basically told me that noise is something you get used to and it’s just a way of how you deal with it as he also experiences that problem (yes I was rolling my eyes when he said that, a healthy person claiming they have the same). He also asked why did I move here in the first place and that he would gladly write someone to help me move, aka fuck off….
I didn’t want to move at all. I just moved here, had a good spot and if he would put the seat on a carpet things would be solved. From that day on, I knew that that reassuring nod of Trudie’s was not going to keep its promise.
The adult baby
Now Trudie was a sweet woman, so she came down one day to listen to the noise. She thought that you would only hear some squeaking of their wooden floor. The ceiling was also of a wooden construction so yeah, it was noisy.
Anyways, she called Simon and when she asked for him to demonstrate the noise with walking he held back. The noise was maybe an 8th of what it was normally. Even for me it was not loud at all. She then asked for him to run or stomp and he did the same, he held back….I couldn’t believe it. He tried to fool both of us. What an @#$%&@!!
You could see that she obviously was not impressed by the noise but as it was more than she expected she did politely admit that you could hear the walking. Right…..so whenever I complained from that they day on it was not really taken seriously anymore.
As with my illness, noise is such an issue that I had to communicate it with them. I tried to see if we could come to an agreement or talk about it, you know having Michael at least not run with shoes in the house for example. And although she answered very politely with “Yes, we’ll take extra care,” it was impossible to get to any real agreement or really talk about it. Her “we’ll take extra care” would work for a few days, maybe week or if lucky one week and a half or even 2 but then they forgot…..If they would’ve tried and it didn’t work I could say fine. But it did work for days or weeks. So it was possible. For me this situation was horrible. In the beginning when Michael was crawling it was loud. But once he started walking and running things became too much. My nice and quiet house became a battlefield of noise inflicted by, as it sounded like a sumo baby. And I became more and more sick.
Now for those who are familiar with ME, you know that the hallmark of this disease is Post Exertional Malaise (PEM). After a small exertion you become ill. I would say that my most annoying symptoms are feeling like you have the flu or fever 24/7 without the actual fever, cognitive impairment, visual disturbances, orthostatic intolerance (not being able to remain upright long enough either sitting or standing because of blood flow issues), gastrointestinal issues, light and noise sensitivity and Post Exertional Malaise. And during PEM all those symptoms multiply in strength. A lot.
So even just walking to the kitchen is literally like running a marathon.
One thing that is very intense is the feeling of lactic acid and a burning muscle pain. You know how when you bike up a hill you first feel ok which is the aerobic metabolism but then when your legs get lactic acid and you can’t keep going that’s when you reach the anaerobic threshold and you need to stop. Your body stops. Well with ME the aerobic metabolism doesn’t work well and we switch directly to anaerobic. Even when we are lying down and are just having a conversation or for example processing noise. The amount of lactic acid is comparable to someone who just ran a marathon and it’s not only in the muscles, the same thing takes place in the brain. It remains in your body in such a way for at least 3 to 4 days. So even just walking to the kitchen is literally like running a marathon. Current research is pointing in the direction of this disease being a hypo metabolic disorder where sugar (glucose) is not being converted into energy. It does switch to fat and amino acids but that’s the one from biking up a hill when you absolutely can’t do any more. It’s not efficient and you feel horrible.
In order to battle the noise I first bought myself a pair of those construction workers headphones with 23 db protection which was when Michael was still crawling, which I could still handle. I did notice that going down the stairs to take out the trash started to become harder. I would first crash from that for a few days but as time went on, just going down the stairs without bringing down the trash slowly became a 3 ½ weeks recovery from a PEM crash. I didn’t connect the dots that that might have already been from the constant noise, but in hindsight it was.
Towards the end of 2015 I started having trouble with people coming over. All my energy was used to process the noise from upstairs and the crashes it provoked. In November 2015 I hit a wall when I had a friend over. He was wrapping some food in plastic which took a while but that sound became so intense my brain couldn’t process it anymore. It was too heavy and I became too overstimulated. I crashed super hard. From that moment on I stopped seeing people.
Home horror home.
In February 2016 Michael started walking and “running” which meant that I couldn’t use my living room anymore as he was running up and down like mad. I resided in the bedroom where it was better as he wasn’t able to run all the way yet. When the noise, his abilities and his weight increased I bought headphones of 37db. After a while that didn’t work either and worse, the stomping became more heavy and intense.
The constant lactic acid is obviously not good for the system.
My crashes became super draining. You probably have seen those marathon runners fall down after the finish line vomiting and lying down on the floor. Completely out? Well that’s what I felt like on a daily basis. If I was lucky a crash like that lasted 4 to 5 days. But as with climbing the stairs they also became longer. Because of the lactic acid I could barely walk around or do anything really. The constant lactic acid is obviously not good for the system.
Until January 2016 I was still able to cook a bit but being upright started to turn into an issue. I would crash for days if I stayed up. This is where my friends started cooking meals for me. I became more dependent. Cleaning the litter box while squatting like a real Sri Lanka guy was impossible because of the blood flow. Everything would give me a PEM crash. The only thing that worked a bit was being in a horizontal position.
The dirt inside of M.E.
September 2015 was the last time my house was cleaned. I already had trouble then with having someone in the house for that long. I’m quite messy, blame it on the artist in me, however when things were too much I would clean everything spotlessly. But things not only got messy but really dirty and I couldn’t fix it for a length of 5 months. I really couldn’t tolerate people inside of my home. Even if they would just come into the kitchen for a minute my cat would jump up. So I knew I had to expend energy that wasn’t there as I was in a full crash of a heavy flu and lactic acid and therefore in real need of help.
The noise became overbearingly too loud. You know that feeling at a concert or party where you stand too close to the speaker and your clothes vibrate because of the sound? That’s what my freaking blankets did when Michael ran on top of me. Wow!! I had no other choice but to put a blanket in the bathroom on the floor as the mattresses were upstairs in the storage. It was way too thin, it was cold, hard and as I couldn’t clean the toilet it smelled awful. It felt for me as one of the most denigrating experiences I ever encountered, and that says a lot coming from my messy self. I should be in bed, as I already was mostly bed bound. Instead of that I was forced to lie in my 1 meter by 2 ½ smelling of old toilet urine, not being able to use my own living room and bedroom anymore.
As you can guess this didn’t work out after a while either. The next step were earplugs of 39 db, which are the highest you can get and also taking refuge in a closet where I put a better mattress and tried to remove stuff in order to create a more suitable place. That alone took me about a week. A healthy person would have done it in 5 minutes but I needed to take real care of not experiencing more crashes and deterioration. I was lying there stuck between my clothes and boxes. This was a “better” solution than the toilet. But still…
I wasn’t able to fill or clean the dishwasher as standing or sitting upright would give me a huge crash. So I ended up using 2 plates that I rinsed quickly while sitting on the toilet. The 90 degree position helped me to be able to sit up a bit longer, but I couldn’t do too much for too long, otherwise I would crash from that activity too. The food shopping was put in a bag outside the front door. If I didn’t have to clean a plate or a cup I would pull the shopping in over the floor and then sit on the toilet and unpack. Then I would take the most necessary stuff to my bed in the closet as that’s where I ate.
The rest would stay there until the next time I would come to the toilet. I couldn’t do everything at once because of the blood flow. It felt like my body was an hourglass only an eight filled with blood instead of sand. I had limited time to get my stuff done, however once the blood was gone I felt that someone had pulled the floor from underneath me like falling into a hole. Being upright even for a few seconds took me an hour to recover. Going to the toilet was a big issue, so bottles were introduced….
As showering was impossible I tried to wash myself in bits in bed. But as I was in a huge crash all the time, washing also became a problem as this would give me an even heavier crash for days as well. Washing my hair, shaving, changing, these most basic of needs would make me crash.
The most important on a day was for me to get to the kitchen in order to get food. Getting to the toilet was also essential and the rest of my time was spent on recovering from the noise. But as everything gave me more crashes. It was really fudging impossible and really not manageable anymore.
The blindfolded beggar.
I wrote my neighbours an email explaining my situation, that I made the decision to move and also asking if we could maybe make some temporary changes so that I could handle the situation with my disease and be able to survive the last couple of months, because really, the noise was coming from their side. Controlling a child is hard if not impossible I totally get that but as some of my friends with kids suggested, they could at least put the furniture in a way that he couldn’t run full flow over my living room and subsequently my bedroom as a temporary solution?? It took them 1 ½ months to answer after promising 3 times to write an email as soon as possible. I got a whatsapp in the end saying they didn’t know what to do other than put a carpet somewhere and “take extra care”…
I begged my friends to find a solution for this situation but unfortunately there were none. For me staying at someone’s house would be too heavy unless it would be in an attic or something else that was separated from the rest. I was getting extremely desperate. It took all my willpower to stay positive. This situation totally got out of hand.
In 2010, 3 years after I became ill, my partner whom I had been together with for 7 years committed suicide. Heavy stuff of course. It was also related to this disease. Our relationship changed because of it. But for some reason this gave me the strength to keep holding on. His passing taught me that there is always a solution even when at times it doesn’t seem like it.
The isolation was intense though. No social interaction with anyone for almost 1 year. Not in real, no phone calls, no Skype, no videos as that became too heavy to process, no music, reading and writing was extremely heavy and I was living in darkness as light was too heavy to handle as well. I was dirty, my house was dirty and I hadn’t been outside for 1 ½ years. On top of that the exertions with the noise were daily, being a few times per day. The crashes were super heavy and became worse and so became my physical state and mental state. When was this going to stop???
I get by with a little help from my friends.
My best friend came up with a great idea to install a second hand sound isolation cabin for musicians. It had about 20 db of sound isolation. Not enough as my earplugs had about 39 SNR db but maybe it would help take the edge off. It was quite an operation. Suddenly I had to go up 2 flights of stairs to the storage room. I stayed there for the whole day. Obviously totally out of it. My friends cleaned or rather disinfected my home which hadn’t been cleaned for 13 months. Can you imagine, OMFG!! It felt so good. Anyways, the cabin worked a bit provided I did wear earplugs but it was more tolerable for about 2 months or so. And the 3 weeks of recovering kind of happened without any new crashes.
In September 2015 I informed the relevant authorities and applied for a new house. I already felt that I was getting worse. The guy on the phone said I could try because my situation had worsened. As I got worse I didn’t feel it was the best time to move so I waited for improvement that clearly never came. In June 2016 I continued that application for a new home.
The Dutch organisation in charge of social housing (Dienst Wonen) was very kind and helpful. The person I was talking (emailing) to was the head of a department and was sure with my situation I would get the help I needed. He also understood that the hassle of a woningruil (exchanging of houses) would be too much in my case if many people needed to come and look at my place. Great. It sounded very hopeful.
The situation had definitely taken its toll on me. I went from being able to cook and bring out trash at the corner of the street to being bed bound, not able to take care of myself and currently in 2017 I applied for a wheelchair. This was not just neighbors’ nuisances because of a bit of noise, this was because of a medical condition that needed to a real solution. On the 8th of November a doctor came to inspect my situation. Next blog I will explain how that went. After reading this and looking at the pictures you would expect a positive outcome. Right???
editor: Russel Mohan
Former professional ballet dancer, teacher, aspiring choreographer & photographer.
Currently life on hold; Myalgic Encephalomyelitis.
Blogging out of necessity.