Laura’s Pen shares her story of the loss of self and grief she experienced when she became chronically ill, and how she found herself again…
I instantly regretted watching it on my own, I cried my eyes out for roughly one hour of the hour and a half. It was Les Misérables all over again, except this time Ivan wasn’t laughing at how violently I was sobbing beside him, body heaving with each cry of anguish, for I had chosen to watch this alone.
But this was a bit different. Yes I was crying because the story was sad. Yes that was worse because the story was true. But the worst thing was this: it reminded me far too much of my own life.
There was an element of grief, of loss, far beyond the fear of death itself. For the loss of yourself, who you define yourself as, losing the ability to do the very things that make you… Well… You.
Here’s a secret. I didn’t write this blog post in one go. I usually do, and I end up suffering for up to a week afterwards for it. That’s why I’ve written so few. Writing about something I care about still gives me a rush. But that rush leads to a burst of adrenaline that means I push myself beyond my fatigue, that keeps my brain on-the-ball for longer than I normally can, that makes me forget my pain, if only for a moment.
Sounds good right? It would be, if forgetting myself, forgetting that I have to pace my energy, to keep having rests, to notice the little signs that say “uh-oh” you’re heading for meltdown, didn’t mean several days where I’m so tired that merely standing up makes me feel woozy and unwell like I’d got out of bed in the middle of full-blown flu and decided to go out clubbing.
But my aim now is to do something a little more like that inspirational lady who wrote and laughed through her struggles. Which means I’ve got to be sensible and clock-watch as I write. Stop when the five minute bell rings and continue my thoughts on a new day, with a fresh brain.
This is also how I write my novel, two x 10 minutes of novel writing a day, or one 20 minute burst if it’s a good day. Without the adrenaline that’s all my brain will allow before it packs up for the day and I need to lay down to regain basic function.
It’s hard to describe how this illness affects my brain. But I will try by explaining why I had to give up work.
It was like someone had come along and cut out part of my intelligence while I slept.
I used to be a journalist. I wrote for a living (and did a bit of html and website updating on the side). I LOVED it. For the first time in my life I felt like I had figured myself out, I had figured out what it was that made me tick. Yes the job came with a lot of stuff that made me uncomfortable, mainly the very important aspect of talking to new people. But it was worth it. And I’ve never been somebody to shy away from facing a fear.
The illness hit both slowly and suddenly. I know that doesn’t make sense (I rarely do these days). But for probably a year before I knew I was ill something had started to happen, I couldn’t work as fast as I usually did, I found it harder to write, and I was a lot more worn out at the end of the day. If I went to a conference I would be floored by about midday.
Then the sudden hit came. I went from being able to work at about 90% of my normal quality and quantity to about 10%. I literally sat in front of the computer and stared at press releases, reports, things that would normally spark off an idea in about 30 seconds, and struggled to even take in the meaning of the words. My work was terrible. It took me hours and hours to write basic stories, and it would be riddled with mistakes and add nothing new or insightful.
calledIf anyone spoke even once sentence within about 30 metres of me while I was redrafting or writing I would lose my train of thought entirely. I would turn in stories knowing that the redraft consisted of me staring blindly at my monitor, failing to make sense of my own words let alone improve them, for about an hour. It was like someone had come along and cut out part of my intelligence while I slept.
And then my body started to go to pot. I started walking stiffly and unevenly as though in a lot of pain, although it was actually due to my muscles feeling weak and unstable as though I hadn’t used them for months. I put on a fair bit of weight very quickly. My skin broke out in acne worse than I ever had as a teenager. And this was the breaking point: I started wetting myself. Only slightly, but enough to make me feel ashamed and embarrassed, to soak my knickers but thankfully save my trousers from anything too visible.
It’s hard, once that happens, to feel like the same person you were before. The last day I spent in the office at work, was the first time this happened enough for me to notice. I was stopped by two colleagues as I walked to the toilet, concerned for me for the way I was walking. They told me I should go home, I wasn’t well.
Then I discovered my wet knickers. I tried to soak up the moisture as best I could with tissue, whilst trying but failing to hold back the sobs. I put a sanitary towel, which I luckily had with me, on, walked back to my desk, rung my boss, who was out of the office, sent off my last news story to my colleague, waited for him to return from lunch, and went home on the train crying my eyes out all the way.
If I continue to define myself by what I can’t do, or what normal people do, I will destroy myself.
This was the day I lost everything I once was; I’d lost my passion, my intelligence and my dignity. I walked like I was about 50 years older and was awaiting a hip replacement, I had lost control of my bladder as though I’d had complicated births with several large babies (I’ve had none), and my brain had got up and gone on vacation. And it never even sent me a postcard.
Being chronically ill means having to redefine yourself. I’m glad to say that because I’m no longer working I don’t feel as bad as I did on the last day of work most of the time (but I would no doubt be worse now were I forced to do it again). But all of those problems I went through above are still something I live with every day.
My work, while initially putting a lot of pressure on me when I first got ill, thankfully allowed me to work four hour shifts three times a week from home. I stopped writing, I couldn’t do it anymore. I just sat at home tweaking the website, checking for bugs, moderating the forum at my own slow pace.
Even this was a challenge. I slept until the last possible minute before turning on my computer, I struggled to concentrate the whole way through, and then I would crash for the rest of the day, sleeping until early evening and then attempting to put together something edible without actually cooking.
It was during this time that I managed to cut myself whilst making a sandwich, because it didn’t occur to me that putting my hand in the path of the knife to steady the bread was a bad idea. Luckily it was just a plaster job, although I did manage to get a fair bit of blood on my sandwich. I ate in anyway, I didn’t have the energy to make another. I was eventually made redundant when I was at the point of admitting defeat myself. I couldn’t cope.
And so this became my life. My core beliefs of what made me me were challenged.
I’m a high achiever, so achieving nothing made me a failure.
I’m creative, so creating nothing made me unimaginative, uninteresting.
I was destined for success, I thought, so what is the point of my current existence?
And that’s what it was, for a while, an existence, nothing more. I slept, ate, stared vacantly at the television set, and then repeated.
I had, I’m ashamed to say, defined my worth in part by my looks, so everything that had happened, the plagued skin, the tired eyes, the weight gain, the old comfy clothes and the wet practical knickers, made me feel worthless.
It took a good long while to get past that, to redefine those beliefs. In a big part I have Ivan to thank, for helping me laugh at my failing body and mind, for holding me when the only thing I could manage to do was curl into a ball and cry, and for encouraging me to do those things that gave me back some of that self worth. They key of which was writing again.
I can’t sit in front of a computer all day and reel out pages of text anymore. But the key thing is, I don’t value myself by my inability to do that, I value myself by the fact I am writing a novel.
I will shyly say “I’m trying to write a novel,” or “I’m very slowly writing a novel,” if you ask me about it. But to be honest, I’ve always been one to downplay my achievements before I have achieved them. I would rather people be pleasantly surprised than disappointed.
I’m still aware that other people may question the speed at which I am writing it. But to me, that’s not what’s important. What’s important is that I’m writing it, that if I talk about it my eyes light up and I get excited. I’m doing something I love. If I continue to define myself by what I can’t do, or what normal people do, I will destroy myself.
Now I was doing quite well with this little routine, I would write three times a week until my mind lost focus, which would normally be about half an hour.
Until the pain started. The pain made everything more difficult. I couldn’t sleep properly. I barely left the house anymore. It was a struggle to find the motivation or energy to do anything that gave me self-worth. I had to go through the whole process again.
This time I had the help of a local Cognitive Behavioural Therapy group for chronic pain. They didn’t quite get the fatigue (although they did allow for it). But they did get the pain. They did get how it changes your life and stops you from being what you once were.
That course reminded me that, while I wasn’t defined by my illness, I also had to accept it as part of who I am
The writing was no longer just a mental struggle, although the mental struggle had got a lot worse due to my struggle to sleep. Now my hip hurt if I rested a laptop on my legs. My hip hurt if I sat at a normal table. My elbow and shoulder hurt if I used my breakfast tray for my laptop (and so were unsupported as I wrote).
I pretty much gave it up, other than the occasional attempt to restart, which never really came to much. But that course reminded me that, while I wasn’t defined by my illness, I also had to accept it as part of who I am and be “compassionate to myself”. That meant instead of the internal dialogue that consisted of telling myself I should be able to do that, or how stupid and pointless I was, I had to say “ok, what can I do to make this easier on myself?”
The first thing I realised was how important the writing was for my mental health. It made me feel like I was achieving something, like I had some worth. And it allowed me to hold on to something of what I was before, although within different parameters.
When I started writing again, it changed me. The optimism creeped back in, the laughter started ringing around our house again, I found myself again.
But, I had to get better at pacing and making adjustments to allow this. I mostly write on my iPad now. I occasionally use my laptop to backup my writing, and update my word count (which means I update my word count in chunks that make me realise little and often is actually amounting to something tangible). I use a cushion to support my arm. I set an alarm for my writing. Which means I stop before my brain clunks out.
I am still drained afterwards, I still have to go and lay down for 20 minutes (which is the same length of time I write for), but it means I can still hold a conversation in the evening, that I haven’t “overdone it” and made my brain power worse for the next few days. If it’s a bad day, I will do this in two 10 minute chunks and rest in between, or if its a really bad day, I will allow myself the occasional day off.
And my looks? Well, I managed to lose some of that weight slowly over the course of a year or so. I asked the doctor for some benzoyl peroxide to clear up my skin. I gave in and started using pads in my knickers so that I could forget about my leaky bladder and leave it to it.
None of this makes me feel particularly sexy, but it makes me feel more confident that I can pass for a normal person when out in public. But I have had to let it go to a certain extent.
I mean, putting makeup on to go the shops is a ridiculous notion to me now. It’s pointless wasting energy on it, especially when I wear massive sunglasses that cover about a third of my face outside due to my light sensitivity anyway. Why make a difficult task even harder for the sake of some stranger possibly thinking I look good? And actually, the less I wear it the more confident I become in how I look without it.
And sometimes my outfit choices are somewhat bizarre. I will wear a nice summer dress with big warm socks (because my feet get cold). Or I will spend all day wearing a jumper inside out or with crumbs all over them. But now that’s part of me. I’m a bit ditzy and a little bit kookie.
But you know what, I’m starting to embrace that as part of my new personality (although I have a feeling Ivan will argue it was always there to begin with).
If I could turn back time and cure myself from day one, I would, I’m not going to kid myself. But I think I would hesitate, because I’ve learnt a lot from this illness. This is going to sound like a greeting card, but I’ve learnt how to find inner strength. I’ve learnt what is most important to me. I’ve learnt to be kinder to myself and to never stop dreaming.
But, saying that, having learnt these lessons, I would be very grateful if this illness could now sod off.
Best of luck to those fighting hidden battles, from Laura (and her virtual pen).
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