I have learned to live with many challenging health issues over the last decade. Through my addiction recovery, my gender transition, and managing complex mental health challenges, I have become an expert at self-care. I have a rock-solid wellness plan. I have a well-practiced flexible routine that allows me to keep my self-care at the center, and still live a successful life around it. However, when it comes to the crippling chronic fatigue I am currently experiencing, I am stumped as to what to do for the best.
This Fatigue Is More Than ‘Just Tired’
When I say fatigue, I do not just mean tired, or even exhausted. I mean fatigue that sucks the very life out of you. When I stand up, I can barely stay standing. My body cries out to lie down, but even when I’m lying down it’s not enough. I know this sounds terribly dramatic, but I often feel so weighed down with this chronic fatigue that I feel like I’m dying. It feels impossible that I can be this utterly and totally shattered, and yet keep breathing.
I am no stranger to tiredness and exhaustion. I have lived with chronic anxiety and a mood disorder for years Managing mental health is exhausting. It takes huge mental effort each day to watch my mental health, to watch the thoughts, the self-talk, and to constantly course-correct so that I don’t slide. Living with the adrenaline from anxiety makes me tired too. It takes enormous effort to challenge the anxious thoughts and live my life regardless of it. Often, the next day after an anxiety-inducing event, I am tired and need to rest.
This Chronic Fatigue Makes No Sense!
However, I am used to this. This is my reality, and I am well-practiced at dealing with it. Over the last decade, I have learned tools and strategies to live my life regardless of my problematic mental health. I have developed a watertight flexible schedule, which adapts to my daily needs in living with fluctuating conditions.
I know how to predict and manage potential issues. This means I can still do the things that cause anxiety in my personal life and my professional life, such as public speaking and meeting with clients. Because I know that as long as I rest well before and after these big emotional or high-intensity events, I am OK.
But this fatigue does not work in the same way as anything else I manage. It is impossible to predict when it will happen. I cannot make sense of what triggers it. I cannot work out what to do for the best to manage it. Half the time it makes no logical sense, and I cannot find a pattern. The most recent flare was set off by a lovely 2-day camping trip where we did little more than relax and wander gently through the countryside! I have paid for it with a week in my pj’s canceling most of my work.
Fatigue Diagnosed As Hypothyroidism
The fatigue started in the autumn of 2017. I remember walking home one day and feeling so exhausted I wanted to just lie down on the pavement. It took every bit of energy to drag myself the short distance back home, then I practically crawled up the stairs into my flat. I spent most of that week in bed, barely able to move. Then suddenly the fatigue began to lift. This was the start of a cycle that has repeated ever since.
When the fatigue first started, I visited my GP for help. I had a lot of trouble getting this GP to take me seriously. I wrote a blog about the awful experience I had with this before the GP finally decided to run blood tests. As it turned out, the blood test results showed that I have Hypothyroidism. I was relieved in a way as this meant I wasn’t imagining it, and that there was a solution, in taking medication.
Fatigue Symptoms Persist Despite Medication
Though I did see improvement after a couple of months on Levothyroxine, it wasn’t long before the fatigue and other symptoms returned. The months that followed saw me returning to the GP many times and having my dose tweaked. We tried having me at various numbers within the ‘normal’ TSH range, to see if I fared better slightly low or slightly high in the range of normal. But each time, the same thing would happen again, a settling of symptoms followed by another flare-up. Eventually, my GP referred me to an endocrinologist, to investigate whether there might be an underlying cause. All tests came back negative.
It has been a year since those investigations started. Since then, despite my TSH levels staying in the normal range, the same pattern of a flare-up of fatigue and recovery persists. Each time I get a flare-up, my symptoms seem to be getting worse.
Strange And Increasing Symptoms Alongside Fatigue
I also have a strange set of symptoms. As well as the crippling fatigue, I have excessive sweating, uncomfortable heart flutters, muscle aches, brain fog, and the newest one, headaches that feel like my head is in a vice. When I am in the middle of a flare-up, the slightest movement causes me to look like I’m auditioning for the transgender version of Baywatch. Often my head hurts so much I can barely talk. When I do talk, my words come out in a muddle.
These heart flutters are the strangest thing. My GP says I have some ectopic beats, which in themselves aren’t dangerous (apparently). However, they are extremely uncomfortable. My heart isn’t particularly fast but it pounds, which is incredibly unnerving, and it feels peculiar in a way that’s difficult to explain like my heart is in my throat. All these symptoms begin as soon as the fatigue starts, and end when the fatigue ends.
Do I have The Right Diagnosis?
This doesn’t sound like Hypothyroidism, does it? Surely, medicated I should be symptom-free. Even if my levels were off, I wouldn’t get these fluctuating cycles, would I?
I’ve now moved location and registered with a new doctor. I am hoping that fresh eyes on all of this might help. I need to get to the bottom of this, so I can stop the fatigue from happening, or at least find a solution to manage it.
Currently, I am not managing the fatigue well at all. I am completely under its power and control. Covid makes seeing a doctor challenging work. I’m frustrated. I feel so embarrassed by it and cross with it. My videos are behind schedule. This is my first blog post for a month. I’m having to take fewer clients and have had to reschedule others. I have so many creative ideas, and important projects on the go, but against this fatigue I am powerless. Unlike everything else I live with and have learned to manage; I simply cannot work around fatigue in the same way.
Making Friends With ‘Fred’
Taking a leaf from my recovery program, I am reminding myself that all I can do is accept how it is. I can only do whatever is in my power and control and let go of the rest.
This week, I have been experimenting with calling my fatigue ‘Fred’. I found this cute picture of a sleepy koala for this blog post, and this is how I imagine Fred! I hope that renaming it might take some of the power out of it, and help me to make friends with it, whilst I wait for an answer.
If anyone reading this has any experience, ideas, tips, or advice, please do not hold back! I gladly welcome them all!
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I’ve had fatigue like that twice in my life. Once it was a kidney infection. The other was years later and it was fluctuating estrogen levels in menopause. That was the worst. Had everything you describe and thought I was dying. Couldn’t believe half the population went thru it and hardly mentioned it, and that medicos know zilch about it. Transitioned after so dunno if I would’ve had those symptoms while on T. Gabapentin gave me some relief—no idea why, but heard about it anecdotally and it helped me.
Its so good to know you understand how awful this is! One of the things the doctor wants to check, is whether despite having a hysto, that I might still be having menopause symptoms. I will update! Interesting about the gabapentin. Thanks for your comment, its once to know folks read these!
Fred the Koala is very very cute indeed! And describes in picture form what you’re going through perfectly! Sorry to hear about what you’re going through. It sounds really tough. Have you thought about possibly investigating chronic fatigue syndrome? Some of the symptoms you describe seem to fall into that. Sending lots of love and hoping you can get this sorted soon. Thinking of you xx
Thank you so much, he is cute, but annoying! ME?CFS is something that has been mentioned, but the doctor wants to rule out other things first…..so more tests it is!