The Fog

It’s inescapable and suffocating, a fog that consumes me entirely.

No, I’m not talking about that fog–the killer horror movie kind–but the kind that is always inside of me, all the time. Its name is Postural Orthostatic Tachycardia Syndrome, and today it came out with a vengeance.

If you know me or are familiar with this blog at all, you’ve likely heard me mention it before. Honestly, I don’t talk about it very often because I try not to focus on it. I refuse to let my illness win, become a part of every aspect of my life, and suck the joy out of everything that I enjoy.

But today, it did just that.

Sorry for the past few days of relative silence, but I’ve had a good reason I promise. Normally, I’m good about “powering through” my bad days. I’ve been living with my illness for more than seven years, so I’ve gotten pretty good at managing it. But if you are one of my unfortunate comrades who have chronic illness yourselves, you are all too familiar with the fog.

I’ve been reading the Shadow and Bone trilogy, so I am comparing it to the Fold. A lot of days, I am able to summon enough light to pierce through the fog, just like Alina, but others, I don’t have the strength, or it’s just not enough.

Today was one of those days. After I was up all night being physically ill, my body is completely wiped. I slept for twelve hours, then napped, and still didn’t have the energy or strength to get out of bed. I haven’t been able to sit up for more than a few minutes at a time without feeling dizzy, let alone make it out of room or down a single flight of stairs. I didn’t even have energy to hold a conversation with my boyfriend or family, and spent the day more or less in isolation, but for my ever present cuddle buddy and sick day companion.

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It has been a long time since I have had such a bad day as far as my illness. But I am reminded, even now, when it is difficult to summon enough strength to write this post, that no matter how bad things are in this body, I can escape to a hundred others.

Being trapped in this bed can feel an awful lot like sitting in a jail cell–but books and writing are a portal to an endless possibility of worlds, and freedom.

This is why I love writing, and why I will never, ever stop being a writer. I can’t. Words and ink are like oxygen and blood to me. They are my light, to pierce through the fog and the muck of this life, no matter how dark it seems.

Reading Siege and Storm got me through today. For a few hours at least, I could forget the pain and discomfort of this body, and become someone else entirely, lost in a rich, vivid, fantasy world. What could be better than that?

The reality of my illness means that I cannot always push through, and I will have to miss out on things, sometimes things that I love. I’ve missed staying connected with the writing community, work, a party, and interacting with friends and family. Please be patient with me in times like this, and know that I have not forgotten about all you lovely people, I am trying my best 🙂

I will have this illness for the rest of my life, and nothing can change that until there is a cure.  In the mean time, though, books make life a whole lot better.

And with that, I am going to finish this book, and then nap for the third time today.

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36 thoughts on “The Fog

  1. *hugs* I think the worst part about chronic illness is that it can be unpredictable. I was bedbound for 16-22 hours a day in the past 3 years. I don’t think anyone besides my closest friends, husband, and the women in my hip and Ehlers-Danlos group understood. I couldn’t even write for a full year because I was too emotionally drained by my illnesses and the uncertainty of my future. Not sure if it would help but there are several POTS support groups. Many of them are on Facebook, and are private so other people can’t see what you post in the group. The majority of the people in POTS groups have Ehlers-Danlos syndrome, and because of that they tend to be very compassionate and supportive. It helped me a lot talking to others afflicted with the same illness. I need to get tested for POTS but I’m lucky I’m only affected by it mildly :$ I’ve heard horror stories of how bad it can be from my EDS groups. I hope you start to feel better. Take as much time as you need. And I know what you mean about pushing through. If I overdo myself on any particular day then I spend days and sometimes weeks paying for it. So I have learned to limit myself. I had to lay down at my sisters wedding reception because the pain was ramping up and I had to sit for 8 hours coming home, which is brutal on my hips and lower back. Not sure if you have heard of the spoon theory. If you google it you’ll find it. It’s so true, and one of the best explanations for chronic illness that I have found.

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    • I’ve never read the spoon theory before, but I’m so glad you mentioned it because it’s such a precise way of explaining the daily life experience in a way that some people might be able to empathize with. I’ll probably use it the next time I have to explain to someone. Thanks for sharing.

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      • Yeah, it puts chronic illness into perspective for those that don’t have it. My sister cried after reading it because she had no idea what I was going through. It only helps with people that want to understand though. My parents don’t want to understand, so I haven’t shown them because I don’t think it would change the way they think. Several EDS ladies refer to themselves affectionately as spoonies 🙂 I met one lady who even had a spoon garden with a large spoon hanging on the wall. It was a reminder to her that even though her garden was not magnificent, it still brought her joy. She had embraced her limitations, but found meaning within.

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    • Thank you! Wow, that is awful. I was bedridden for 3 months, and it was more than I could bear. Yes, the unpredictable part is so frustrating. Like I’ve been doing well lately, and able to function, then with no warning and for no reason WHAM I’m physically sick and stuck in my bed for a week. The worst part about chronic illness though, I think, is feeling alone. When I was bedridden I lost all of my friends but for one. I do have a supportive boyfriend and family, but it can still wear me down not being able to interact with even the people I love most. And though I do have support, no one really knows what I go through (except for my brother who also has POTS) so some groups might be worth checking out, thanks for the suggestion. I can totally relate to that–and the spoon theory is really perfect. I am lucky that over the years my symptoms have somewhat improved and I am able to manage it, but everything is still conscious. One night with friends might cost me a week’s worth of spoons, so I have to be really careful. Thank you for commenting, and for your support 🙂

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  2. Also, thank you for sharing and bringing awareness to chronic illness in young people. It’s very hard to put yourself out there like that, but I believe awareness is needed. Society is definitely biased against young healthy appearing people. I feel like that is part of the reason I have so many people, including my family and doctors, that tried to convince me nothing was wrong. Well the diagnosis of EDS shut them all up 😉

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    • Yes! Oh my goodness, for so many years nobody believed anything was wrong with me. Well, my mom did, and I am always grateful for that. Without her kind of championing to find answers for me, I never would have, and would ten times worse today. So many doctors would just check me for physical things in their specialty then pass me on, or write me off completely. Like pulmonologist did some lung tests, then “Well, not your lungs, try a cardiologist.” And a cardiologist telling me it was because I was out of shape, even though I was in JV volleyball at the time, and my EKG was off the charts. And don’t even get me started about teachers and school. It finally took one special doctor to look at me as a whole and put all of the pieces together to figure it out, and I am so glad. Now I have an answer to tell people, so it’s not just “I have health problems.” Because no one really understands, and assumes you’re overexaggerating or just lazy or even making it up entirely. Because no one healthy could ever really understand, but having a diagnosis and answers to their questions can really help. Which is why I think it is important to talk about it, and educate people. Because if you read even the comments on here, everyone is so supportive, but some of them really have no idea. I think it would help a lot for people to be educated and have their eyes opened, and navigating life with chronic illness would be that much easier without everyone around us trying to hold us back.

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  3. I really admire your bravery, Victoria – not only to post about such a personal (and no doubt painful on all levels) topic, but also for getting through it all with such a brave face. While I’ve never experienced the truly awfulness of chronic illness (touch wood!), I’ve been bedridden for days on end with glandular fever and tonsillitis before, and like you, I found reading to be the main coping strategy, if only because disappearing into another world is much more preferable to wallowing in self-pity!

    I’m glad you at least have amazing books and a damn cute snuggle buddy to help get you through the tough times, and know that I’m sending you buckets of hot tea and armfuls of hugs from across the pond! Keep us all updated on how you’re faring, and I hope you’re up and about in no time at all, ready to kick some writing ass 🙂

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    • Thank you so much! This almost made me tear up, what a perfect comment to wake up to the other day. I really appreciate it, and your support. Books really are everything, and she is pretty damn cute 😉 I am glad you have never had to experience anything like this, and hope you never do, but really appreciate that you understand and support me. Thank you 🙂

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  4. I really hope you feel better soon!

    Having an illness can be so debilitating, and sometimes just having the strength to try and keep pushing through it can be exhausting. So I admire your ability to keep going.

    Make sure you take the time you need 🙂

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  5. I hope you feel better soon!
    I haven’t had anything more serious than an ear infection and strep throat, and that was enough for me.
    I can’t imagine what you have to go through with your illness, but I admire your courage, and the ability to talk about it openly.

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    • Thank you! Haha, I wish. Before my surgery I had strep throat an average of 12 times a year, and that’s because of my immune deficiency and not my regular chronic illness. It is definitely no fun. Thank so much for trying to understand, and for your support 🙂 It means a lot.

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  6. This reminds me of a quote by T. S. Eliot, one of my favorites: “The purpose of literature is to turn blood into ink.”

    We can’t always power through. But we make it to the other side. See you when you get here, Victoria. (I have missed you. :x)

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  7. Hope you feel better soon! Books are an amazing escape from real life. Have fun going to battle dangerous enemies in the heart of man-eating forests! We’ll all still be here when you get back. 🙂 (By the way… does your snuggle buddy have a name? He/She’s super cute!) See you when you get back! 😀

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  8. I am familiar with this fog of which you speak. Sending you all the love, hugs, and good juu-juu for a speedy recovery my friend. If there is anything at all I can do, don’t hesitate to reach out. Love you bunches!

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  9. Aww, adorable cuddle buddy! Reminds me of my old dog I used to have that was a lhasa apso.

    I didn’t know about your chronic ailment until this post. You seem to have such a level-head about it, that’s good. I resonate with “Honestly, I don’t talk about it very often because I try not to focus on it. I refuse to let my illness win, become a part of every aspect of my life, and suck the joy out of everything that I enjoy.”

    I hold a similar attitude when it comes to my chronic issue of occipital neuralgia. It can be so startling how different the two body states can feel; in pain and out of pain. Especially when a bad (pain) day happens, it’s tricky not to focus on it because the pain seems to limit and restrict most/all usual abilities.

    When I have a bout of headaches, I can’t do anything that requires extreme stillness or focusing with my eyes – probably why I’m more of a writer than a reader when it comes to the two activities, because I can haphazardly scribble in a notebook while I pace off the pain (walking around randomly) and burst-write on a keyboard while standing, but reading strains my eyes. So, in this very specific context, you’re lucky that you are able to stay still and read in bed!

    It’s difficult to navigate how much to share about having a chronic issue, especially in regards to building a career as a young author. So, it is “nice” to see others managing similarly. I mean, it’s hard in general to navigate a chronic pain in our society anyways – on a regular basis – but then adding on the competitive publishing industry to wade through… thus, why it is great to know the purpose and intent of your writing, allow for that to come to be in its own time and caring for the body-mind with compassion and understanding… that’s as far as I’ve gotten in figuring it out.

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    • Beautifully said Dominika! Writing has been a coping mechanism for me as well 🙂 That and cats X3 I adopted two cats to help me cope with life, and there isn’t a day that goes by that I don’t smile at least once a day from their antics.

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    • Thank you! Lhasa apso are very cute, she is maltese/yorkie mix 🙂 Yes I can absolutely relate to that, but I can’t imagine if I weren’t even able to read or write! That would truly be awful, my heart goes out to you. Chronic illness can be something hard to talk about and even though I don’t talk about mine very much I think it is important to be open and honest about because it is not something to hide or be ashamed of, and it’s great to connect with others and show people a different side of me. Thank you so much 🙂

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  11. I don’t have the same illness, but I do have epilepsy and I totally agree that any type of chronic illness is hard to deal with, especially at first. I’m so jealous of people who get to live so healthily and don’t have to worry if they’ll seize in public or anything like that. I have seized in public and it was humiliating. When you’ve got a chronic illness it’s like you’re on edge all the time and you never truly feel normal.

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    • I am sorry to hear that, I could only imagine. I think every chronic illness is somewhat the same in the fact that it really takes over your life. But it always reassures me to hear others who have chronic illness as well, because we don’t realize how many of us there are, and we are not alone. Thank you for sharing!

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  12. I hate the fog! I feel for you, I am still new in my diagnosis and am learning to accept it. It sounds like you have a pretty good outlook and have learned how to accept it without letting it dominate you. I hope to be there. I still find that denial is where I fall most days. It is difficult not to when some days you feel “normal” and then others you are symptomatic. The fog is the worst though! I can deal with low energy, pain, and even find peace in my cold spells, but when the simple act of following a sentence is confusing, it is a huge blow to the ego.
    I really can relate to what you said about pushing through as that is usually my mantra! Thank you for your inspiration!

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