Life is tough.
Sometimes, life is shit.
Sometimes, life throws so much shit at you for so long that you start feeling that the deity you don’t believe in has some kind of personal vendetta against you.
Most of the shit that’s been sent my way is invisible, at least to anyone who doesn’t know me well. Which means anyone can say something, however well meaning, and remind me of what I’ve lost, or what I live with every day.
I’ve resisted writing this post for a number of years, because I hate to complain about my situation, or suggest that I have things worse than others – I am fully aware there are a lot of people who go through much worse than this, and cope just fine.
However, I’m not really coping at the moment, and I’m hoping it will help if people better understand what’s going on.
Until I was 15, life was good. Then depression hit. Treatment Resistant Depression, to give it its full title. It took approximately 10 years to find a stable medication combination that stopped me wanting to crawl under a rock and die. In the meantime I’d had a year and a half out of Uni, and failed to complete my degree in the conventional sense (they awarded me what is technically a full degree despite completing less than 1/4 of my final year successfully).
One of the medications I was taking (and still take) is lithium. Normally prescribed to bipolar patients, it’s a mood stabiliser, and for me augments the action of the antidepressant I take, along with other meds. It does however cause one major side effect – my mind is significantly dulled.
It’s not easy to explain to anyone who hasn’t experienced it, as seems to be the way with most conditions I contract… I find learning very much harder than I used to, I struggle to make connections between information, and in general it feels like trying to think through a head full of cotton wool. It put an end to my hopes of a career in Biochemistry, which I’d been pursuing since I was 12.
By the time I was 25, things had started to pick up. We’d just managed to get the medication sorted, I was buying a house and I’d just got a job doing events planning, a first step in a new dream of becoming a wedding planner. Then, in the space of 5 months, a friend from Uni was hit by a bus and killed, my maternal grandmother died of breast cancer, my cat had to be put down, my paternal grandmother died, and my maternal grandfather committed suicide (the last 2 on the same day).
Some time in the next 6 months, while helping my family cope with the deaths and so on, I developed Chronic Fatigue Syndrome – it was gradual. Work have been brilliant at accommodating me, switching me to part-time hours and changing my job description to avoid the tasks I can no longer manage. But it does mean I’m not involved in events planning any longer. I also had to give up organising Cambridge Geek Nights.
CFS is another of these conditions it’s impossible to explain if you haven’t experienced it. The Spoon Theory is a very good start, but to the outside world, I look completely healthy. Apart from the obvious fatigue, CFS has additional symptoms for my already slowed brain. It makes simple things like finding the words I want much more difficult, my memory is significantly impaired, especially trying to hold multiple items in my head at once, and things like learning are extremely tiring. It also causes anxiety problems (on top of the ones I already have from the depression), and renders me entirely unable to cope with stress.
My mind is severely hobbled from various sources, and I remember exactly how it used to be, which makes it so much worse. If I had a physical disability and was in a wheelchair, for example, people would understand – about what’s been lost.
I have had 2 career dreams destroyed, and outside of work my activities, especially physically but also mentally, are severely limited. But because I look normal, people have no way of knowing what’s happening. And that is so tough. Because the things people do or say with the best of intentions can often be the most painful. So please:
If I decline an invite to socialise because I won’t have the energy, please don’t try to persuade me to change my mind – it’s incredibly difficult turning down things I want to do because my energy won’t stretch to them.
If I can’t find my words, or my memory fails me, please don’t make jokes about dementia etc. – I know it’s meant in fun, but I find it impossible to take it that way.
If I’m learning a new skill, try to understand that learning takes me a huge amount of effort, and that I don’t have much capacity left after work and day-to-day living.
Life is tough. I hope explaining this to you will make life a little easier.