Endo Awareness Month Series: My Brain on Endo
It's been a long time since I've written anything for the diary section. Partly due to my insecurities that no one will be interested and wondering why they should be anyway, and partly because it's a scary thing, to open the box in the attic and try to make sense of it all and explain to someone else what you find in there.
The truth is - I have depression. I also have anxiety. And a bit of OCD. And Post Traumatic Stress Disorder. And my endo has been playing havoc with my life now for two long years. The depression and the endo is a bit like the chicken and the egg, I really don't know which one came first, but I do know that the symptoms of endometriosis heightened my already anxious nature ten fold and most recently, I've been having a panic attack nearly every other day. These sometimes have been mild and unnoticeable, but I've had a few that take hold of me for hours and weirdly enough I don't realise what's happening until about three hours in when I'm still wondering why I cannot breathe and everything looks a little bit fuzzy. Here is a list of some of the things I worry about with endometriosis:
What if my manager doesn't believe me?
What if my manager says they believe me but actually they don't and they're waiting for me to slip up?
What if they're planning to fire me?
What will I do if they fire me?
Could I sue? Could I sue a charity?
No, I couldn't sue a charity. So what would I do?
If I got made unemployed, the government won't believe me. I won't get ESA because it's hard enough to prove to doctors that you're suffering.
How am I going to pay my rent?
What happens if I get evicted? Does that mean I've become intentionally homeless so I won't get any help?
Could I really move back in with my mum? That would make my depression worse.
How could I live in a flat share with debilitating pain, intense hormone mood swings and a host of mental health problems? I'm too tired to talk to strangers.
I'm the main breadwinner. How are we going to afford to live?
How am I going to afford the diet I need to try and control my endo?
How am I going to enjoy myself when the little treats I do get out to do, I won't be able to afford?
Are people reading my instagram and thinking I need to shut up?
Is my website even helpful?
I need to do more to my website. People are waiting to read it.
I don't have time/energy to do my website.
THERE IS SO MUCH TO DO.
I have four weddings this year. That's four hen dos (or more these days) and bridesmaid duties. What if my period comes on the wedding days? What if I can't walk up the aisle? What if the food at the wedding triggers a flare up? What if I can't afford any of it because I lose my job? What if I'm too tired mentally and physically to do any of this?
Could I go part-time? How could I afford to go part-time?
Could I go freelance?
How much work would it take to go freelance?
Could I do both? Go part-time and go freelance? Would it be harder to do two jobs then hold down one 9-5? How does that work tax wise? How will I go part-time and go freelance at the same time? I'll be spending all weekend doing job apps, so how could I get my freelance off the ground in time before I make the jump? Will I have to do my freelance after work on top of my 9-5 until I go part-time? How do I cope with that? I am so tired.
My pain is changing. What's happening inside me?
Do I look ill?
Why can't I remember words? Why does it take me so long to finish a sentence? Do people notice?
Am I slipping up?
Do all my friends think I'm negative?
How am I going to go on like this? How am I going to live the rest of my life with this disease? Will I be this tired forever?
Is the depression ever going to go? What if I always feel this way?
Which hospital do I go for? Do I wait to see a specialist or go to the hospital that is offering an operation sooner?
If I go to the hospital which is offering an operation sooner, will they do a good job?
How long do I have to wait to a specialist? What if I get worse? What if I can't hold down a job?
What if the op doesn't work? What if nothing changes?
What if the op works? Will I still be of use to other women?
What if my doctor won't give me another sick note?
What if work say I have to start coming in at 9am? How could I do that? It takes me an hour to wake up.
I've had a job offer. What if I can't do my new job because I'm too unwell? What if I'm taking on too much?
Will my new job pay me sick leave for my operation?
Maybe I should have stuck to what I know?
This list goes on. And on. And most of these thoughts are happening at the same time and include scenarios that extend on for years and years. That's the difference between anxiety and worrying. It is not just a worried thought which comes in and goes out again once you've worked it out, it's not something you can talk yourself out of. It's a huge host of terrifying fears that are circling your brain like vultures, ready to attack. These thoughts come with their own baggage in the form of physical symptoms - difficulty speaking, palpitations, fatigue, heart pain, feeling like you can't breathe, feeling detached from your body, dizziness, nausea, feeling like someone is sitting on your chest, blurry vision, migraines....
Why am I telling you all this? I'm not sure - it's a brave/stupid move. Family, friends and even maybe work colleagues could read this. But I'm hoping we're in a time when the people who matter won't judge me for this - they'll see that I'm trying to bring awareness and I'm trying to let others know they're not the only ones. I know there are women out there who feel like they're going crazy - they're trying to handle a disease and all the other issues it brings a long. Depression is enough on its own. Anxiety is enough on its own. Throw endometriosis in the mix and you've got a war that very few have been prepared to fight - we're learning as we go.
Despite the doom and gloom of the above, I'm surviving. And in fact, anxiety and depression have forced me, in the most painful way, to make decisions about my life and where I want it to go.
This morning I sit with my cup of green tea, by my window, in my dressing gown, with four years of employment with a big homeless charity behind me. There have been many many days where I begged the universe for this day to come - where I considered just not going in, saying I just wasn't going back whatever the consequences, because I just couldn't cope anymore. Now it's all over, my heart aches. I went to sleep thinking about my clients and worrying about the issues they have going on or the exciting futures they're planning, and feeling a stab of pain that I won't be there to say "well done" or "we can work through this".
Ahead of me, lies a three day job share with a new charity, that is just as close to my heart and a cause that needs to be heard by every ear in every country. It aligns with my values, my current lifestyle and where I want to go moving forward. I am exited and terrified. All of the worries above have not gone, they have changed and adapted to the scenarios that lie ahead.
But still, I am making progress. If I had decided I needed to spend six month in a mental health hospital - it's still progress. Progress doesn't have to be what the world thinks it is - achievements, jobs, money. It is what it is to you. Sometimes progress for me is getting up after my hitting my alarm only twice.
Sometimes anxiety and depression makes you think you're not going anywhere because you're not 'sane' according to society and that they're controlling your every move. But life isn't designed to be smooth sailing. There is no point me asking myself would I have made this choice if I didn't have endo, because I do. I am not only trying to make the best of my situation, I am trying to embrace it and turn it into something that works for me. If that means going freelance and part-time, that's great - if it means somehow taking a year off, that is too.
Whatever is in store over the coming months, whatever my anxiety throws out me. What I do know, as a fact, is that I survived. I didn't lose my job, I didn't lose my home, I didn't lose my mind. In fact, I gained a whole lot. I gained a greater awareness of mental health, I gained direction, I gained a community of women who feel the same, I gained a therapist (a few of them), I gained a life coach, I gained mindfulness training, I gained nutrition knowledge and I gained an understanding of what's important to me.
So though anxiety often tells you it's going to take everything you have, perhaps our war tactic is taking everything we can from anxiety.
Image from Lizzy Cunliffe-Jones