My Physical Health – Chronic Illnesses and Being Healthy

My Physical health
© DeviantSuccubus

Physical health means for me being able to balance the symptoms of my illnesses in a way that they don’t affect me in any major ways. For a lot of people, working on their physical health means that they want to lose weight, look slimmer, have more muscles or generally be more healthy so they can live longer and without any major health issues. It has never been that for me.

Health Privilege

I wish I had the health privilege to look at things from the perspective of a healthy person. It would be lovely if improving my physical health would mean that I just need to exercise more, eat less, stop smoking or cut down on drinking. Ever since the outbreak of the Covid-19 virus I have actually been quite appalled by how nonchalantly those with heath privilege treat the outbreak. “Ah, it is only the ones with underlying health conditions or those who are older who are at risk. Let’s not panic. Most of us will be fine!” – Yeah, well, fuck you for seeing millions of people as disposable.

Health privilege is something that most people don’t think about. But the cold truth is that it is one of those privileges that can be taken away from you really quickly, because illnesses don’t discriminate and everyone might eventually end up with a serious chronic health condition. I wish those nonchalant people would practice compassion and consideration for those less fortunate, because if that is what everyone conveys, they might receive a similar positive treatment when they are struggling with their health.

Health privilege has never been someone that I owned. Already as a child, I was constantly physically ill. If it weren’t broken shinbones (whoa, that one hurt) or shoulders, it was getting my appendix getting removed, constant ear infections and bad allergies. Ever since I can remember, I haven’t felt healthy. And things only got worse when I was getting older.

Allergies and Asthma

My allergies got really bad and first improved once I moved to my own place. For years I had daily asthma, trouble breathing, runny nose and red eyes. I am allergic to dust and my family decided that all the Persian carpets in our home had nothing to do with it (lie!). It got so bad that I couldn’t even hold food down because I was coughing so hard and was throwing it up again.

The asthma has still stuck with me but it mostly only bothers me during winter now, when the air is dry and generally not great for people with asthma. I still have my allergies but I can at least staying away from anything that can collect dust in huge amounts. I think switching from smoking to vaping a couple of years ago, made a difference too.

PCOS

In my early 20s, I got diagnosed with Polycystic Ovarian Syndrome (PCOS). It basically means (for me, because everyone has different symptoms) that I don’t have my period regularly, that it is not the same sort of period each time, that I have terrible PMS (even been suggested it is PMDD), that I have more facial hair growth than most women, that I am overweight and that I can’t have children. I also have long periods of pain in my nether regions, with no infection being present. PCOS is really the gift that keeps on giving.

It would have been quite alright it my physical health issues had stopped there. But nah, they didn’t. In 2008 I got diagnosed with pre-diabetes, which doctors said was most likely caused by insulin resistance, caused by, you probably guessed it right, PCOS! I managed to get my blood sugar back under control and lost a shitload of weight (60 kg) in the process. All good in the hood? Nope.

Hashimoto’s

In 2011, I got diagnosed with Hashimoto’s which is an autoimmune illness that attacks the thyroid. My second hormonal illness, oh the joy! Hashimoto’s gives me a lot of diffuse symptoms, but mostly, it just makes me lack energy, a lot. Most doctors believe that just giving thyroid hormone supplements is going to make everything better. Unfortunately that is not the case for many, including me. Even if my hormone levels are fine, my antibodies are still high and my thyroid is chronically inflamed. Other lovely symptoms I get are weight gain, inability to get pregnant, dizziness, cold sweats, and muscle spasms.

Long-term side effects from medication

Enough is enough I say! But life doesn’t work that way, ha! Due to psych medication, I ended up with some difficult long term effects on my physical health. There are the sinus issues, that are chronic for me now. My sinuses are always swollen and the only way to remedy that at least for a while would be surgery. The worst thing about it is the lack of ability to smell a lot of times, and the headaches. Oh oh, the headaches. For a while I was convinced that I had a brain tumor, but after some scans, and a camera up my nose, the real culprit to my headaches was found. I am glad it is not a brain tumor but man, those headaches suck.

The other long term issues I have gotten from antipsychotic medication are called extra-pyramidal side effects. They are more common than you think, but doctors rather not want to tell you about them when they put you on them. So what I got is called akathisia. It means that I have neurological damage that gives me an inner restlessness, and muscle and nerve spasms. For about two years, I had them every day, and yes, they drove me mad!

I tried meds for it but nothing helped. I have it in my arms, my throat, my clit and vagina, and my legs. It gets worse when I don’t sleep well or when I am anxious, and when I have walked or exercised. While I don’t have akathisia every minute of the day anymore (thank fucking God!), I still get it quite frequently. It is a terrible thing to experience, it is like your own body torturing you. Additionally, I also have dissociative seizures (also called “pseudo-seizures”) which I think are most likely linked to the akathisia as well.

Diabetes

We done yet? We are not. In 2017 I got diagnosed with diabetes. It was a no-brainer, really. My dad has it, my mum has it, my grandfather had it. And I was pre-diabetic before, the Hashimoto’s made me gain weight again, and then there is the insulin resistance from the PCOS. I have tried medication for it, but unfortunately I only ended up suffering side effects and only minimal improvement. The only way I am keeping me diabetes in check right now is through checking my bloodsugar levels a lot, and eating low-carb food. It is a struggle but I am very close to the pre-diabetes range, so it is quite under control.

IBS

Another wonderful chronic illness that I struggle with is IBS. Well, at least that is what doctors have suggested to me. Recently, I have had a terrible flare-up which still hasn’t gone away. I will spare you the gruesome details but a lot of times I am in pain and discomfort, I can’t eat most things and I keep wondering if something more serious is going on. Fortunately, this is to do with flare-ups for me. I can have a bad six months, but then things are calm for a year. I often don’t even know what has triggered it, and what makes it stop again. It is a frustrating illness!

Post-Concussion Syndrome

In 2018 I suffered from a concussion, a self-inflicted one. Basically, I was being an idiot. Unfortunately I got reconcussed a couple of times more that year, because fate is a bitch. What I ended up with is called postconcussion syndrome. Yay me! That basically means that the smallest bump can give me proper concussion symptoms, like headaches, sleepiness, dizziness, an inability to focus and a lack of physical energy. Every now and then I also get the really bad headache out of nowhere which feels just like a concussion one, without any proper cause. How long will this last? I don’t know, it can take years to get better. All I can do is to be properly careful to not get a new real concussion, and my brain might just recover.

Chronic Fatigue Syndrome

This leaves us with only one more chronic illness to discuss! Chronic fatigue syndrome. This one is a proper asshole. I had a bad flu in December 2018 and ever since then, I have felt an overwhelming fatigue. And I am drained quickly, meaning that if I go out and do something, I will have to pay for it by being absolutely knackered for days. I had to learn to start counting my spoons and plan properly, so I can do anything at all, really. But the fatigue is not the only bothersome symptom. I ended up in the ER once because my heartrate went all whacky and didn’t go down. Fortunately, my heart is fine. But I will have to live with episodes of scary high heartrate and everything that comes with it.

A lot of other things also come from this fun illness: insomnia, lack of focus, mouth and gum issues, feeling like you got the flu. There is not much that can be done about it, other than learning to count your spoons. I wish they were knives and I could poke the universe a bit for being a nasty asshole and giving me all these illnesses!

What Caused it All?

A lot of these illnesses are linked to the trauma I had to endure during my childhood. Trauma unfortunately affects your physical health long-term. Then there are the genes, the medications I have tried and the lack of care from doctors which has made it all worse. I know that people often think that chronic illnesses are linked to lifestyle choices. I don’t think that is the case with me. I don’t smoke cigarettes, I rarely drink, I don’t take drugs. and I have been a vegetarian for many many years.

Being Healthy?

I will never be able to wake up in the morning and feel energetic. I will never be able to have children. I will never be able to be slim. So all those things that might represent something healthy for others, they will never be possible for me. I can’t be healthy. I will forever be excluded from the group of people who have health privilege. None of the chronic illnesses that I have, are going to kill me any time soon. They make me more susceptible for other health conditions though: cardiovascular disease, cancer, viruses (Mr. Corona too).

For me, being healthy means to stay as healthy as possible under the circumstances that I have. I am trying to not gain weight, to exercise moderately (I go for walks), to eat healthily and to not make things worse by having an unhealthy lifestyle. There are some things that I can’t influence, like sleep, because they are strongly linked to my mental illnesses. So my health goal is to not make things worse and to stay as healthy as possible with the illnesses that I have. It might not be as positive as a goal as many others have for their health. But it is what it is.

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13 Responses

  1. Sweetgirl says:

    I really hope that you can manage your symptoms and illnesses successfully, and you get your health care sorted soon xx

  2. Julie says:

    I think you are so right about the way people dismiss their chance of developing an illness like Covid 19. For those of us privileged with good health, that’s important to remember. This is an interesting post. I used to be a rheumatology specialist nurse and so often my patients had a number of auto immune like illnesses, which seems to be the case for you. I’m glad you are able to manage things as well as you do, though it seems a relentless struggle. Thanks for sharing.

    • People have a difficulty to empathize with someone if they haven’t been through something similar. It is sad. Yes, some of my illnesses are auto immune, very rude, the body attacking itself. *shakes head at body* Thank you so much, Julie <3

  3. Zebra Rose says:

    I have a different constellation of issues, but I’m in the same universe – being ‘well’ is something I’ve never experienced! Chronic (and invisible) illness/disability is such a massive drag, I have loads of empathy for you and recognise many of the experiences you describe. Regardless of whether you fit into society’s and medicine’s ideal of ‘normal’, you are a brilliant, gorgeous, talented, valuable person and I salute your courage and fortitude!

    • I am sorry to hear that you can relate to the struggles of someone with invisible illnesses, and never feeling well or rested. Thank you so very much for your kind word, they almost made me blush 😀 <3

  4. Mr. A says:

    I love this post! Good luck on your fitness journey, and I wish you more success and good health! You are already there, keep pushing!
    Cheers! 🍸

  5. You are so right, Devie, sometimes people take good health for granted and forget that people around them suffer from health conditions. Covid-19 definitely made that clear. I try not to be too worried about the virus, especially as we are traveling to London soon, but I am keeping an eye on any symptoms, as I too suffer from allergies and asthma, and my resistance is not as well as it has been in the years before my burnout. So, I try to get on with daily life, while staying vigilant. As for physical exercise… well, I should do more of that…

    Rebel xox

  6. Jeez! You could almost start forgetting what you have with this long list, except for that you experience it every day. I think your goal is very positive for you and that’s all that matters

  1. April 8, 2020

    […] is hard to love a body that is broken. I have written about my physical health conditions extensively on this blog. But I never shared what it actually feels like to live in a body that is […]

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