Me, myself and I
It has been ages since I’ve been on here and looking around it seems I’m not the only one. I just needed a place to write this off though. As it’s been a tough time for me last couple months and I’m not doing too well.
For a while last year, I had dizzy spells where my ear would go deaf, blood pumping through it, terrible high-pitched beep and the world would spin. These always only took a couple seconds and then they would die down, so I always forgot about them and moved on. Unfortunately last December, as I was on the train back from seeing my PSV boys play in Eindhoven, I got deaf in my right ear on the train. At the time, I thought this was just cos of air pressure, as it felt like when you are on a plane, but when I asked dad at the end of the journey how his ears were, and he looked at me puzzled, I knew something was off. When we got off the train, I could hardly walk cos the entire world was spinning, and I had another half hour on another train and a car journey home to go.
That week my ear did not improve that much, I felt lightheaded and wasn’t sure what the hell was up with me. So I saw a weekend doctor Saturday after the match. Who told me I had Meniere’s Disease. An untreatable, chronic ear/head problem where you have the feeling you are in a merry-go-round continuously, the world spins round and round and you go deaf. The two weeks after I saw the doctor were the worst ever. I have never been that ill in my life. Which you guys know says something. I honestly thought I would end up in hospital. The world would not stop spinning. I could not stop throwing up despite not having eaten anything in days and I was stone deaf in my right ear all of a sudden. Doctors saw me, but could do nothing. Thankfully they did rule out scary things like haemorrhages so I knew it wasn’t ‘that’ serious.
This is how I spent my Christmas and New Year’s. In total isolation, never having felt that bad, thinking I’d never get well again.
After two weeks of lying in my room and occasionally being able to sit very still in a chair staring at the opposite wall with my mum needing to hold me as I used a bucket right next to my bed for you know what, I could finally watch a bit of telly again. But moderately, as too much sound or too much movement made the world spin again. This continued for about a month. Mid January I finally made my first appearance downstairs again. More and more hours every day, sometimes taking a couple steps back and having to go back to my own room and be alone in silence and sleep.
Thank god for my amazing mum who took care of me so amazingly well. No idea where I would have been without her. No fucking idea. It all took its toll. Both physically and mentally. I’m pretty sure my chronic fatigue syndrome was part of my slow recuperation. Now, nearly five months on, and I am still not doing well. I am permanently deaf in my right ear for about 80%, have tinnitus which gets worse when my head is bad, I’m lightheaded all the time, still have dizzy spells, chronic headaches and migraines and no fitness to speak of, and as several doctors have told me, there is no medication or treatment.
What used to be a distraction for me, fandom, hasn’t been lately. For a month I wasn’t able to look at a screen, I couldn’t talk to friends, I was unable to listen to music and still am for a large part. Being partially deaf means the noise that your ear does pick up, comes through distorted, shrill and it hurts my ears. I can’t watch tv shows anymore on my laptop because speech on my ear plugs is uncomfortable. I can’t watch downloads on our tv much either, because the sound is too shrill and without subtitles I misunderstand half of what they’re saying, and since I don’t live alone I can’t do that to my folks or my neighbour. So what used to provide happiness only provides me with sad at the moment because it is so confronting.
Thankfully there was an amazing football season with PSV, but even that had its unhappy moments with missing games I had tickets to because I had relapses. I have tickets to the last home game of the season during my birthday weekend next week. Since I’m having a bad week, I think I am going to have to give that one a miss too. Which hurts a lot.
So what is left is realising and accepting that my situation does not look like it will improve any time soon, or at all. Doctors have sadly been pretty clear about that. Insomuch that it could actually get worse. Which means that I’ll never be able to do the work, have the job or the career, that I want to have. I’ll never be able to have a normal life, with going out, have a normal social life where you actually meet up with friend every week. And that’s really, really tough on me at the moment and I have no idea what to do with myself. Even hope, which is what I’ve always clung to, is escaping me a bit at the moment with the harsh realisation of my reality. Which is that I’m hardly able to leave the house and I am unable to make a living for myself, which gets me into serious financial trouble by the end of the year.
This has all left me in a mild depression. I am not on mental medication (yet), but I am starting to see a psychologist in two weeks, as accepting my situation is tough, because this is another chronic disease without a treatment or medication. Where CFS already made my life just a tad more difficult, because I don’t have the energy other people have, now I can’t even do work away from home at all. So my apologies for not chatting as much as usual, for maybe not being myself lately or in the future. This is something I’m going to have to get through and I’m not sure how long it will last.
For a while last year, I had dizzy spells where my ear would go deaf, blood pumping through it, terrible high-pitched beep and the world would spin. These always only took a couple seconds and then they would die down, so I always forgot about them and moved on. Unfortunately last December, as I was on the train back from seeing my PSV boys play in Eindhoven, I got deaf in my right ear on the train. At the time, I thought this was just cos of air pressure, as it felt like when you are on a plane, but when I asked dad at the end of the journey how his ears were, and he looked at me puzzled, I knew something was off. When we got off the train, I could hardly walk cos the entire world was spinning, and I had another half hour on another train and a car journey home to go.
That week my ear did not improve that much, I felt lightheaded and wasn’t sure what the hell was up with me. So I saw a weekend doctor Saturday after the match. Who told me I had Meniere’s Disease. An untreatable, chronic ear/head problem where you have the feeling you are in a merry-go-round continuously, the world spins round and round and you go deaf. The two weeks after I saw the doctor were the worst ever. I have never been that ill in my life. Which you guys know says something. I honestly thought I would end up in hospital. The world would not stop spinning. I could not stop throwing up despite not having eaten anything in days and I was stone deaf in my right ear all of a sudden. Doctors saw me, but could do nothing. Thankfully they did rule out scary things like haemorrhages so I knew it wasn’t ‘that’ serious.
This is how I spent my Christmas and New Year’s. In total isolation, never having felt that bad, thinking I’d never get well again.
After two weeks of lying in my room and occasionally being able to sit very still in a chair staring at the opposite wall with my mum needing to hold me as I used a bucket right next to my bed for you know what, I could finally watch a bit of telly again. But moderately, as too much sound or too much movement made the world spin again. This continued for about a month. Mid January I finally made my first appearance downstairs again. More and more hours every day, sometimes taking a couple steps back and having to go back to my own room and be alone in silence and sleep.
Thank god for my amazing mum who took care of me so amazingly well. No idea where I would have been without her. No fucking idea. It all took its toll. Both physically and mentally. I’m pretty sure my chronic fatigue syndrome was part of my slow recuperation. Now, nearly five months on, and I am still not doing well. I am permanently deaf in my right ear for about 80%, have tinnitus which gets worse when my head is bad, I’m lightheaded all the time, still have dizzy spells, chronic headaches and migraines and no fitness to speak of, and as several doctors have told me, there is no medication or treatment.
What used to be a distraction for me, fandom, hasn’t been lately. For a month I wasn’t able to look at a screen, I couldn’t talk to friends, I was unable to listen to music and still am for a large part. Being partially deaf means the noise that your ear does pick up, comes through distorted, shrill and it hurts my ears. I can’t watch tv shows anymore on my laptop because speech on my ear plugs is uncomfortable. I can’t watch downloads on our tv much either, because the sound is too shrill and without subtitles I misunderstand half of what they’re saying, and since I don’t live alone I can’t do that to my folks or my neighbour. So what used to provide happiness only provides me with sad at the moment because it is so confronting.
Thankfully there was an amazing football season with PSV, but even that had its unhappy moments with missing games I had tickets to because I had relapses. I have tickets to the last home game of the season during my birthday weekend next week. Since I’m having a bad week, I think I am going to have to give that one a miss too. Which hurts a lot.
So what is left is realising and accepting that my situation does not look like it will improve any time soon, or at all. Doctors have sadly been pretty clear about that. Insomuch that it could actually get worse. Which means that I’ll never be able to do the work, have the job or the career, that I want to have. I’ll never be able to have a normal life, with going out, have a normal social life where you actually meet up with friend every week. And that’s really, really tough on me at the moment and I have no idea what to do with myself. Even hope, which is what I’ve always clung to, is escaping me a bit at the moment with the harsh realisation of my reality. Which is that I’m hardly able to leave the house and I am unable to make a living for myself, which gets me into serious financial trouble by the end of the year.
This has all left me in a mild depression. I am not on mental medication (yet), but I am starting to see a psychologist in two weeks, as accepting my situation is tough, because this is another chronic disease without a treatment or medication. Where CFS already made my life just a tad more difficult, because I don’t have the energy other people have, now I can’t even do work away from home at all. So my apologies for not chatting as much as usual, for maybe not being myself lately or in the future. This is something I’m going to have to get through and I’m not sure how long it will last.