Image description: the view from my bed, showing a room with high ceilings and white walls. There is a tall wardrobe with shoe boxes on top, two shelves filled with artwork and books, and an ornate mirror and some plants.
Is anyone still reading this blog? If so — hi. Hello. I’m sorry it’s been so quiet here. I’ve been sick, you see, and not just with my usual combo of ME/CFS and mental health issues. In January a virus decided to settle in on my balance nerve, where the balance organs in the ear communicate with my brain. As a result, my head could no longer understand what was up or down, whether I was moving or sitting still. It’s such a small thing, such a small part of the body, but the impact it’s had on my life is massive.
I spent most of the beginning of the year in bed, clutching my duvet in an effort to still the world. I couldn’t focus on anything more than moving as little as possible. The dizziness was awful. The nausea was worse, and relentless. The headaches were both dull and sharp at the same time. The tiredness was even heavier than I was used to from ME/CFS. And I was so afraid. It’s a terrible thing when your mind literally cannot understand the world, as the lizard part of your brain becomes convinced that you are dying, and the lizard brain does not listen to reason. I only left the house to force myself to various doctor appointments.
Even through all of that, the worst part was that I could no longer read, write, watch TV, use my iPad, or do anything with my phone besides make calls. I couldn’t even listen to music. Whenever I tried, nausea would wash over me like a tidal wave, the world would tilt and spin, and my head would ache as if squeezed in a vice. Effectively I lost the possibility to distract myself, and to communicate with the outside world.
This lasted several months. No books. No movies. No leaving the house, except for fruitless medical appointments and stubborn, stumbling trips to the grocery store. No writing. No music. Just me, in a bed or on the couch, trying so desperately to be still.
I am no stranger to loss of function. I got ME/CFS ten years ago, and with that I lost being able to run and dance and perform. I couldn’t use my bachelor in music. I couldn’t have a regular, full-time job. I lost friends. I lost freedom, the ability to move through the world as I wished. It was like I had to stand by and watch as the world calmly, dispassionately took all this from me, and no amount of pleading or bargaining could stop it.
After years of numbing, sneaking depression, I started to build a new kind of life. Okay, I couldn’t run a band and perform live, but maybe I could still make songs and record them, with some help? Okay, I wasn’t able to hold a traditional job, but maybe my writing would still give me some kind of purpose and meaning? Okay, so I had neither the health or the economy to see the world, but I could learn to find joy in small things, like going to the movies or riding the tram aimlessly. Okay, so it was hard to be social and meet new people, but at least I could make sure I took good care of the friends I had. Okay, my world had shrunk, and I needed to alter my ambitions and desires — but there could still be something. It might still become a lovely life.
Then came the virus, and a whole new level of loss. No, Maria, you cannot escape into a book. No, you cannot ride the bus or a tram. No, you cannot talk to your frinds on skype, you cannot visit them, you cannot text them. No, you cannot look up your symptoms online. You cannot work on your novel. No, Maria, you cannot play music with your bandmate, or start to learn that cello you just bought. You cannot listen to music, not even in the crappy iPhone earbuds.
In the beginning I did pretty good. I was so careful with my thoughts, refusing to fall into depressive loops again. So I thought about my book, the world I had created. I thought about the small improvements I felt, like when I no longer was dizzy when lying still in bed. I found joy in small things, like the luxury of being clean after a shower. Time moved oddly during this period, as an hour lasted a lifetime, but weeks flew by and I hadn’t really done anything, nothing but wait. It was surreal, especially since I was so isolated from people. There were times when I thought I was literally going mad, just for the lack of connection, the lack of being touched. The hardest time wasn’t in the beginning, but rather when I became well enough to realize how horrible it all was.
Time did pass, though. My greatest victory was travelling north, to my home town, to stay with my mum for a month. After six months of dreading even a simple bus ride, I armed myself with earplugs, sunglasses, breathing exercises and some helpful pills, and left. I’ve actually only just returned to Oslo, three days ago now. It’s been hard to be back, in a way, because of all the vivid memories, and because I can see how far I still have to go before I’m as well as I was before the virus.
The combionation of the virus and ME/CFS is tricky, you see. I haven’t been able to find any info about it online, and none of the doctors are familiar with it. Here’s what I’ve been able to piece-together-slash-theorize-about: ME/CFS in all probability “lives” in the nervous system. Some of my symptoms are extreme tiredness that cannot be “rested away”, hypersensitivity to light and sounds, and a slow and unstable immune system. The virus thing damaged the nerves between my right ear and my brain. The virus itself disappeared after a while, but my brain still has to re-wire itself, which is a slow, difficult process. The ruined nerves cause dizziness, nausea, fatigue, trouble focusing the sight, sensitivity to sensory stimulation (like light and sounds), and a very anxious lizard brain that thinks it’s going to die.
The main way to “handle” ME/CFS (there is no medication or cure yet) is to keep your body, particularly the nervous system, as rested and calm as possible, and to not over-exert yourself. The best way to re-train your brain after this virus-damage, is to move your body, to do things that activate the connection between the brain and the body, like “walking on uneven terrain, or exercising”, as they say online.
You’re smart people — I don’t have to explain why this makes it incredibly hard to know what I can do to optimize my recovery.
Right now I can live somewhat normally, for me. I can shower, buy groceries, make dinner. Do laundry. Pay bills. I can even watch TV most days, and I can listen to music and audio books. Alrik and I have even had a couple of short band rehearsals in my apartment. I cannot, however, read books, or use a computer or an ipad or phone for much longer than ten minutes (I’m writing this blog post by hand, on actual paper, with frequent breaks to reast my eyes and brain and body). I cannot sit in cafés or spend much time in busy streets, since all the visual input and noise confuses my brain. I don’t feel comfortable on trams or buses, especially since I know I’ll be exhausted once I arrive; there are few places ou can travel to where they have a nice, dark room available for a quick lie-in.
And finally, it comes down to the ME/CFS, as it always does with me. I’ve basically had to re-learn how to live with it, since my limits and triggers have changed so much. Everything is so much more sensitive now. Resting after a grocery run isn’t just nice, it’s mostly mandatory. I cannot plan more than one “activity” a day, and I need to plan for much more resting days than I used to. Sunglasses and earplugs are lifesavers, not just comfortable. And as for re-building some kind of social life… I’m still working on that, too. I love my friends dearly, but it’s been difficulat to navigate such uncertain, serious waters, difficult for both them and for me. We are still young, after all, and lack both the experience and the language for such situations. But if there’s a will, there’s a way, right?
The two hardest things for me now are the uncertainty of my future, and allowing myself to grieve what I have already lost. Uncertainty is something we all have to live with, of course. And I am thankful for all the things I can do now that weren’t possible six months ago. I certainly don’t want to live in the past, either. But… my stories, my books. My music. My relative freedom. My people. My words.
I have no guarantee I’ll ever recover enough to get my pre-2017 life back. I might, but then again, I might not; I’m mostly worried about how this will affect the ME/CFS in the long run. That will affect my whole future, again, my whole life. And in the meantime, I feel so trapped. I am full of things I want to do and experience and create, but most of it has to just stay inside me, for now.
So I try, when I can bear it, to allow myself to feel that loss. To feel the loss, and what follows close behind: hesitant, desperate hope.
Post script: I’ve just finished typing in this blog post from yesterday’s handwritten pages, and I realize that this might be tough for some people to read, particularly the people closest to me. So let me just add: I did not write this to give anyone a guilty conscience, and I hope you all know how grateful I am to have you in my life. Writing is simply my best way of processing things, and this has needed processing for a long time now.