Hello! Hi! Bonjour! Hola! Hallo! Kon’nichiwa! And many other ways to say hello to you lovely lot!
First, let me first address the elephant in the room.
I haven’t written a blog entry for a rather long time, and now here I am, showing up, wanting to post an entry, and hopefully, start writing on a more regular basis again. Although I can’t promise that it will be monthly, as unfortunately, the pandemic has scuppered all of my exciting adventures.
Some of you may feel let down by the fact that I haven’t been consistent in my entries, and that’s ok. You’re allowed to feel disappointed in the person who said that they were going to document their life, and their journey, living with mitochondrial disease, and then suddenly stopped writing, and only showed up now and again on social media to share others’ posts, or to leave a little video. And sometimes, not even that.
I’m sorry for that. And I won’t follow it up with a ‘but’, because if there’s one thing I learned from watching Drew Barrymore eat human beings in ‘Santa Clarita Diet’ on Netflix (it’s quite good, by the way), it’s that ‘inside of every ‘but’, is an asshole.’
There have been, however, reasons beyond even my own comprehension as to why I have not been able to come back to this blog sooner than I would’ve liked. The best way for me to explain it to you would be writers’ block. But before I’ve even started writing. It’s complicated. And Mr J, and my family, will tell you that when I start typing, I can really fly with my documenting/story-telling/whatever-you’d-like-to-call-it. It’s just the before bit. Before I even open my laptop. Before I even think about opening my laptop.
I can assure you that I haven’t just been sitting at home not writing; not thinking of you all, and what this blog - what Mito and Me - means to me. In fact, it’s been quite a source of anxiety for me, in the way that I feel that I’m letting people down, as well as myself, by not being present more often on here.
And that’s what I want to talk about today. Anxiety. Now, please don’t be offended by my chosen title for this entry. I do not, in any capacity, think anyone is a ‘dummy’. Anxiety is a very real, scary, debilitating illness. But as previously mentioned in a past entry, I do use humour to get through my days, and I will continue to use humour in my blog posts.
I’ve lived with anxiety for as long as I can remember. Since I was a little girl. I was going to say that I’ve ‘suffered’ with anxiety. And, whilst that’s true – I do suffer with this never-ending doubting, questioning, lying little shit living in my head – I believe that I also live with it. I live each day, and some days are better than others. I live with mitochondrial disease, so why do I have to suffer with anxiety? I’m trying to learn to take control of it, so that it doesn’t run my life. So that I can have more of a handle on how much it controls me.
For those of you lucky enough to not have to live, or suffer, with anxiety, and for those of you unlucky enough to have this on your plate as well as everything else, I want to try to explain a little more what goes through my head on a regular basis, so that those reading this, can perhaps have a little more understanding about how I may feel sometimes, and why I seek the reassurance that I do.
For me, anxiety is a constant state of worrying. It’s like being on the precipice of a panic attack almost all of the time. And a panic attack is not fun, let me assure you of that! It’s being scared of everything, whether those fears are irrational or not, and the logical side of your brain will know that your fears are irrational, but the stronger side of your brain, the anxious, worrying side that has control of you in that moment, that side will convince you that your worst fears are real, and that nightmares can come to life.
Anxiety continuously tells me that I’m going to ruin relationships. Be that with Mr J, with my friends, or even with my family. For me, personally, there are underlying issues involved with this particular fear, but nonetheless, anxiety tells me that one day, I’m going to be alone, and that everyone will finally abandon me. Mr J will realise that he can do better, that he doesn’t need to be lumbered down with looking after me, who is, after all, a burden (so anxiety tells me), and that his life could be so much happier without me in it. I fear that I will be abandoned, not only by him, but by my friends – that they too will realise that (especially after not seeing me for so long due to the global pandemic that is Covid-19) I am, in fact, uninteresting, not as funny as they once thought, and have no more adventurous stories to tell them because mitochondrial disease has taken away so much from me. So they too, would be better off without me. And finally, my family will not know what to do to help me anymore. There is nothing they can do to help me with mitochondrial disease, and it must be so tiring for them to look after me. They might get mad at me because I can’t control the fears that anxiety is hammering into my mind, so they will no longer know what to do for me. Of course, they’ll love me, but perhaps they won’t like me anymore. Anxiety basically tells me over and over that ‘they’re going to leave you’.
The self-doubt is crippling. I was told by my very wise Psychologist that anxiety is ‘The Doubting Disease’ There is no better way to describe it. Except by perhaps adding some expletives. I have Obsessive Compulsive Disorder (OCD), as well as anxiety, and they seem to go hand in hand together. In fact, anxiety seems to have a couple of friends. Another one being, Depression, which is also something I have experience in. But back to doubting myself; anxiety, along with OCD, makes you question everything – did I say the right thing? Did I lock the door? Did I turn off the oven? My straighteners? The plugs? The boiler? Did I word my text message correctly, in a way that can’t be misconstrued? Let me just rewrite this a couple more times before I actually press send. Did I use the right tone of voice when speaking to that person? Did I end that conversation in the right way? Should I have said that? Should I have said more? What if so-and-so is mad with me? And this is made all the more difficult when mitochondrial disease is constantly battling for the foreground, fighting to control your body. It can affect your memory, and so anxiety and OCD make it harder for you to turn away. You always have to double, triple, quadruple check.
Waiting is a huge part of anxiety. And it eats me up inside. For example, going back to text messages. When I send a text, if I’m having a particularly bad day, waiting for a reply sees me sitting on the sofa, a knot in my stomach, feeling so nauseous that I could vomit at any minute. It’s playing out scenarios in my head as to what I could’ve done wrong, or said wrong, to make the person angry with me, or to not want anything to do with me. It’s seeking reassurance from Mr J, who tells me rationally that the person could be busy, and that everything is absolutely fine (and it is), but my brain is telling me that my world is about to implode because the person I’m waiting to hear from hasn’t replied to my message, and so I have no idea what they’re thinking. Am I about to lose my best friend? How can I stop that from happening? Anxiety is constantly saying ‘I’m sorry’ for no reason, when I haven’t done anything wrong. I lose count of how many times a day I apologise to Mr J, and he always brings me up on it, asking why I’m apologising. And do you know what I do? I apologise, for apologising! I don’t know why I do it (perhaps there are underlying reasons, but I’ll let my Psychologist do the psychoanalysing), but I have an overwhelming need to let people know that I’m sorry, just incase I’ve done something wrong.
Acting is a part of anxiety. Acting as if everything is ok when you’re in front of others. Playing the ‘right’ part. Wearing a smile, and laughing and joking so that no one knows that anything is wrong. Of course, I’m not always acting. But I know when I have to. Because in truth, some people feel uncomfortable when you’re honest with them about your mental health, and about how you’re feeling. So, sometimes it’s better for me to be the one to decide when I let people know that something is wrong. And sometimes, they’ll never know.
Anxiety makes me an insane people pleaser. I think I would always want to make people happy, even if I didn’t have anxiety, but having it makes me so nervous that I’m going to do something wrong, or make someone mad, or disappoint someone, that I have a desperate need to do all I can to please people. As long as they are happy, then everything will be ok.
I think, on some level, for me, anxiety is procrastination. And that’s a difficult thing for me to admit. I think it may be the first time I’ve ever openly admitted it, here, now. When I spoke about having writer’s block earlier, before actually getting to the writing part, could that possibly be procrastination? I do believe that I get writer’s block, but I think I’m so terrified of failure, and not having something close to almost perfect, that I may just put it off for as long as I can, until it’s too late, and then it’s too hard to come back to. Perhaps that’s one of the reasons I’ve been away from here for so long. And if I’m being completely honest with you, I’ve had to do this entry in stages. And that’s been damn hard. I’ve not wanted to start once I’ve stopped. I’d rather keep going and get it finished. But as we all know with mito, fatigue and pain take over, and sometimes it’s not physically possible to keep going.
I’ve recently been diagnosed with Insomnia. I’ve had trouble sleeping for a while, but now it seems that sleep eludes me. I’ve tried everything I can think of. A regular bedtime, and wake time, a hot drink before bed, reading, audio books, listening to meditation (which is not for me, I might add), and just lying there counting sheep. But still, sleep is like a distant memory. As we all know, the fatigue and exhaustion that comes with mito is debilitating, so not sleeping, or only having a few hours here and there, is excruciating. But now I associate bedtime with negative thoughts and feelings, and, you guessed it, anxiety. Because my brain doesn’t shut down. It brings up all the memories that I have wanted to bury from years ago, and plays them in 4K UHD on a loop. I try to manipulate the scenarios, take control, change the outcome (just for myself), but they’re still as distressing, and I feel worse, because anxiety reminds me that it is something else I did not do in real life, at the time. That I was once again, a failure. When I manage to drift off to sleep, it is uneasy, restless, and filled with dreams that become nightmares. Flashbacks of my time in hospital with Pneumonia and Sepsis earlier this year, loop after loop of playbacks of memories that feel as real as you and I, constant nightmares of Mr J telling me that he doesn’t love me anymore, and that he’s leaving me, plaguing the couple of hours I have to get some rest. And when I get up, whether it be in the middle of the night, or the next morning, whether I have managed a couple of hours, or not, I need to get through my day with the burden of Insomnia, as well as the plethora of symptoms that mito throws at me from every which way. And mito is a bloody good throw.
Anxiety is more than just worrying and overthinking things for me. It has physiological effects too. It’s breathlessness, and palpitations that make you feel like you’re holding the Grand National inside your chest. It’s panic attacks that are sometimes so bad that you think the last thing that you’re going to see is your husband trying to calm you down, telling you to breathe as you clutch onto his arms, opening and closing your mouth like a guppy, hoping that some air will go in, but there’s nothing but darkness around the edges. It’s pain in your stomach as you try to figure out what ‘feels wrong’ because there’s been a shift in the atmosphere around you. It’s clutching your hands together and cracking your knuckles because you feel like you have no control over a situation, and with no control, comes uncertainty, and that is one of the worst things that you can imagine. It’s breaking down and sobbing until you don’t think you have any more tears left to cry, and you do all of this in the bathroom, in the middle of the night, because you don’t know how to explain to your husband why you’re crying. You’re not even sure yourself sometimes. It’s an overwhelming urge to self-harm at times, just so that you can feel anything but what you feel inside. And sometimes you believe you need to be punished. There’s no good, or sensible, reason for it, but it just makes sense in your head, at that moment. But you made promises to people you care about, and that outweighs anything else.
Because more than anything, anxiety for me, is about caring. Perhaps too much at times. It’s about never wanting to be alone. It’s about never wanting to hurt someone else’s feelings, and always looking out for others. It’s about putting other people before yourself. Put simply, I think it’s what every human being really wants - it’s about wanting to be liked, and loved, for who you are.
