My mom would tell you, if she spoke to me or spoke to you about me, that my attitude is why I got sick. Some people think illness is a state of mind. I think she believes this because she doesn’t want to accept someone can become ill through no fault of their own, if they are doing everything ‘right’ and I understand that fear.
Truth is … you can get ill for any reason or without reason, it seems.
And the bad part? When you’re sick people really don’t want to know.
I became sick in 2017. Suddenly. Violently.
I’d been exercising almost daily (which for me, ex-workaholic sitting all day at desk, was a big deal), juicing daily, eating a clean organic diet, going to acupuncture, blah blah. I took no medications, had no medical conditions that were serious, didn’t smoke or drink or even drink coffee (acidic stomach) blah blah.
Some hateful people would joke; Maybe all that clean living did it! But honestly, how sick I got? Wasn’t a laughing matter.
I’m not perfect. In the past, I had my experimental moments with things, and I did smoke and quit. So to some extent I’m less ‘clean’ than someone who has never done that. But I tried to make up for it and I was doing pretty well.
WHAM! One day, literally one day, I got so sick in the middle of the day with terrible stomach cramping, like nightmare painful, and the worst nausea I have ever experienced in my entire life. Think super-nausea on steroids. The bad part? It didn’t stop. Not the next day, not the next week, not the next month, no, not even after a year. I lost my job. I couldn’t work or function at all. I was in and out of the ER weekly.
I went down to 80 something pounds, stopped being able to eat, basically became anorexic not by choice, but who can eat when every time you do you throw up? Dr’s see a woman who is 80 something pounds and they wonder if it’s an eating disorder. The difference being, I was a slim but healthy weight just months previously. I got stretch marks and saggy skin as a result of rapid weight loss and then gain, it was surreal and like my body was hijacked. I had no appetite at all, I had to force myself to eat, and that’s true even to this day, as if my body ‘learned’ to reject food because of how many times it threw it up.
People don’t just have a break-down mentally and become anorexic over-night and fall apart. Without any reason. As a therapist I can attest, this just doesn’t happen. Nothing was bad in my life. I have always had some depression (organically, inherited) but I was over-all high-functioning and actually in a good place. As a woman, you are often immediately assumed to be hysterical which I think is so detrimental, as I’d love to see how anyone could handle this suddenly happening to them.
Luckily, few Dr’s really believed it was psychological (but I mention this because of the number of colleagues and friends I have, who ARE accused of it being a mental disorder when it’s clearly physical). The bad part was nobody seemed to know WHAT it was. For so many of us, it’s the not knowing that is the worst, or knowing and having no treatment, like my friend with a Brain Tumor, who subsequently had a VP shunt put in, and developed seizures and blindness. As she says, was the cure even worth it?
I had every test you can imagine. It took months. And was terribly expensive. It broke me financially. I thought of going back to Europe but I wasn’t convinced I could make the flight as I was non-stop-throwing-up and terribly weak. I also wondered what kind of support I would get there, and it turned out my mom quit talking to me a couple of months later partly because she said my illness was a burden and I scared her by calling her when I was suffering. So I stayed in the US which proved to be a good thing because on my 5th Gastro Dr I got an answer. Gastric Arrythmia. Cousin to Gastroparesis but quite different in how it is treated.
Basically with Gastroparesis your stomach stops working – your brain doesn’t send the right messages to the stomach and the Cajal cells in your stomach are disrupted, so the motility of your stomach goes out and that causes extreme, extreme, extreme nausea, throwing up, food not staying in you, non absorbing of foods, weight-loss, etc. I also had my thyroid completely out (it never had been before, it never was since) and other things, some of which have never got better.
My kind of Gastroparesis is Gastric Arrythmia which means your stomach spasms and is spastic and empties too fast in the top and too slow in the gut, causing a huge build up and combustion of processing, causing incredible pain and epic nausea 24/7. The medicines I was given whilst in hospital sped my stomach up, as they were for Gastroparesis which is usually a slowing of the entire system, and they exacerbated my symptoms. I had to take a medication for my specific issue, which basically is a form of anti-depressant for the stomach, that calms it down.
It wasn’t a quick or entire fix. I have felt nauseated every single day since August 2017. But after a while you make choices. After so many medications and invasive procedures and scans and probes, I just couldn’t keep doing it. I grew up in a family who were against traditional medication, with good reason. I knew it was traditional medication that had helped me the most (I tried months and months of every alternative medication and treatment I could find, at huge expense, nothing worked even a little bit) but I didn’t want to become a slave to it. I see the side effects are often worse than the so-called cure.
Eventually I weaned myself off and it made no difference, because by that time I had plateaued and wasn’t going to get any better on my current regime. I also knew I probably had a chronic condition, which is where an illness becomes systemic to some extent. People don’t know why that happens, but it’s more likely to happen in women, under the age of 50, Sometimes when you get really sick you develop an autoimmune response and it becomes an autoimmune illness that is longer term, which is what occurred to me.
That’s the sticky wicket, because generally, auto immune illness is poorly understood and Dr’s generally cannot see how you go from: Sudden onset illness to life time illness. I can understand their incredulity but imagine ours? Going from: Well one day to never feeling okay again.
The other aspect oft neglected, is what caused it in the first place. Dr’s I met, didn’t seem to care what the cause was, which I found worrying. Even my miracle cure Dr didn’t really think that mattered. They treat symptoms, they don’t consider prevention or causation. This is why I can never be 100 percent behind conventional medicine. It’s not a good or smart mind-set to not consider how to avoid in the first place, but then, where would the profit be?
Likewise, with alternative medicine, which profits hugely from people like me, there seems to be an emphasis on prevention but it doesn’t go far enough. I was doing all that they would typically prescribe to stay healthy, but it’s not that simple.
My Epstein Barr Virus (EBV) tieters were really high. I have no way of knowing if they were high before I got sick, I only know they were high afterward. EBV is in most of us, and most of us have had it in the form of Mono. Sometimes it can get out of hand and ‘reactivate’ and this happens when your immune system takes a hit and/or you are re-exposed. It can lead to a plethora of disorders including Chronic Fatigue, cancer and MS. It is implicated in the development of Gastroparesis.
I still don’t understand how if most of us have EBV, and I was taking care of myself, this led to EBV causing Gastroparesis causing a life time chronic illness. But that said, I have come to understand a lot by researching things that are poorly researched and understood, namely that: EBV can also be reactivated when your immunity falls, so instead of being the trigger, it could be the red-flag (for your immune system). I stopped getting my EBV tieters tested when I realized the test doesn’t tell you much aside you have an immune response to an existing virus in your body. I don’t know the exact relationship or trigger. My guess is I probably got another virus, that triggered the assault on my system, that led to Gastroparesis and when my immune system was down, my EBV reactivated. But the truth is, no Dr looks at the BIG PICTURE so I will never know.
The hardest thing aside the nausea (remember: Crippling nausea, not morning sickness, not car sickness, nor even food poisoning grade nausea) is the depression. As I said earlier, I had always had depression which I kept in check as best I could, and was high-functioning despite it. The problem with stomach issues, is the first thing that hits you is the impact on your mental health. The stomach produces 70 or more percent of your immune system, so if your stomach doesn’t work well, neither does your immune system (hence why I regularly got bugs despite my best attempts) but your mental health is also affected.
The stomach produces Dopamine, Seratonin and Melatonin. The first two are intrinsically linked to good mental health, if they are ‘out’ in their production in any way, this impacts your mental health severely. The latter helps you sleep and regulates your moods. I was waking up feeling suicidal for no reason, until I learned how much Melatonin impacts your brain. The bad thing is you cannot just replace the missing hormones with supplements, it’s too subtle, basically your body needs to work right and when it doesn’t and those hormones aren’t produced, you’re bang out of luck.
I’ve had worse depression since 2017. At first I denied that because of the stigma with mental health. Then I thought it was connected to having a chronic illness, and the chronic pain and nausea I have daily. Around the same time I was also incorrectly diagnosed with a heart problem (which turned out to be nothing more than a leaky heart valve which isn’t a deal breaker) and very early onset (considering my age) Macular Degeneration. I had too much on my plate and I figured this was causing the depression along with having lost my job due to my illness.
But now, a little down the road, I can see, it’s more likely it’s the disruption to my stomach that has never quit, that has impacted the production of those vital hormones. Obviously the more you have, the harder it gets, and it’s been a struggle, not least with the Macular Degeneration diagnosis, which like everything else, has been under dispute with 4 Dr’s saying I definitely have it and showing photographic evidence, whilst 3 say, no way, not at my age. Who knows? I only know if I lost my sight enough that I couldn’t work/read etc then I would probably lose hope. Especially without family support.
This isn’t a sob-story. People have FAR worse than I do. This is a story about how before you get sick, you don’t really believe in it. And I saw that directly when my best friend got a Brain Tumor. It just strikes you out of the blue and it’s terrifying and sometimes, you’re never the same again. As an optimist, I believed I would over come, get well, and never look back. I feared the opposite, but I strove for the idea of full recovery. I never imagined for a minute I would be this sick this long afterward, or that despite that I would work and try so hard, and that despite that, I would suffer and life would change irrevocably.
The biggest change for me is my level of fear. I have always been a bit of a worryier. But I never had a panic attack or suffered from panic disorder. Since getting that sick I had several panic attacks from the sheer terror of throwing up uncontrollably for days on end, in agony. Since then, I have lived with a mild fear of it happening again and being as bad as it was (it’s not as bad now, hardly ever, it’s more of a consistent soul-crushing low-grade pain and sickness). I have not felt like traveling or doing a lot of things from the fear of that. I forced myself to but I am not the person I was before I got sick.
Maybe we all change when bad things happen, when people we love die, when we get sick, etc. I naively didn’t understand this well until it happened to me. During this time my mom quit talking to me for good. On one level like my friends say, was it really a surprise when she wasn’t my biggest fan? But yes, it did surprise me. I had thought we were doing all right all things considered and I hoped to have a relationship with her. That didn’t come to pass and when she stopped talking to me in the midst of this, it was kicking me when I was at my lowest. I don’t hate her for it, I’m not angry. But it hurt a lot. Especially as I really wanted us to have a good relationship and I knew we could if we both wanted it.
I mention her, because she was and remains, very important to me, she is my mother. I may not have grown up with her, she may not have been in my life that much, but she was a thread in my tapestry that meant a great deal, and to not have her in my life has affected me profoundly. I have chosen to focus on the positive, which is what positive things she did by existing as my mother. I don’t blame her because there are always two sides to every coin and I’m sure she thinks I’m the cause of everything and I can’t speak to that perspective, so I just accept that’s how she feels because I have tried to change it and reconcile and I failed.
So now I’m here, in this nomadland called chronic illness. I don’t qualify for disability and I never wanted to be on disability (I doubt anyone does). I’m not sure about the future. I worry about it a lot even though I know that does no good. My goal is to be a good person, as that’s what I’m best at. To keep working and producing and trying. To have good boundaries (which is what I’m bad at, hence a few stalking incidents in my life) and to get as well as I can and not slip into destitution financially or let depression destroy me. I would like to have bigger goals than that, but right now that’s what I can do. It sounds paltry, pathetic, but I am a realist, this is what I can try to do.
Every once in a while I will write a prose piece like this about ME because why not? And if you want to read it, then why not? Thank you for listening.