Did You Miss Me? Because I Missed Me.

It’s been a year and a half since my last blog post. How do you begin to make that make any sense?! I’ve mainly used my instagram to put down regular deep thoughts but recently I’ve decided to step away from social media for a little while while I figure things out.

So I guess the best way to go is explain what led me to take that step away when I was such a frequent user and what has brought me back to blogging instead.

*Takes a deep breath*.

Throughout 2018 I was on prostap to treat my endometriosis and it changed my life. For the first time in a very long time it allowed me to not be at the mercy of my period and the severe mood changes that brought. I was able to come off my antidepressants, hold down a job and still have time for family, friends, relationships, activities, hobbies and adventures. I was able to really invest in self care. It was like not being chronically ill.

Then I was taken off prostap. It’s quite a viscous drug and so you can only have it for so long - or so they said. That happened at the end of 2018. I spent the next year fighting to get back on prostap or honestly, just to get any support from the NHS at all. But it is underfunded and overstretched. I ended up paying to go private and getting prostap from an amazing specialist that way.

But in the year without prostap I slipped up. I became controlled by my hormones and menstrual cycle once again. There wasn’t enough spoons to share between work and family and friends and lovers and activities and hobbies and adventures and self care. Some things had to give. I chose working full time - and failed. I chose friendships - and didn’t manage to commit myself the way I wanted to. I chose lovers - I was fortunate enough to have one partner who I love completely and feels the same way but when it came to meeting others I failed (more about this and polyamory in another post). On the off chance I had any excess mental and physical energy left I put it into my poetry and while I was successful I couldn’t keep the momentum I needed to quite get where I wanted. After those things…there was just nothing left.

I pinned everything on getting prostap. I didn’t need to worry about therapy, or self care or any of those other things because I would get prostap and then everything would fall into place again. I fell back into old destructive thought patterns. My mental health plummeted and remained at rock bottom. I had no energy left to love myself. But still, I said, it didn’t matter. Because soon I’d get prostap and then everything would fall into place again.

And eventually I got prostap. But because of the length of time I was being given it I had to take another drug to manage the side effects. That was the deal. The consequences of not were severe for my health.

I got prostap. And nothing fell into place. The extra medication tore me apart - physically and emotionally. I tried it out for as long as I could bear it. I pushed my health and my relationships to breaking point. And then I broke. In a moment of unprecedented clarity among the darkness I realised I could no longer rely on prostap. It wasn’t working. It wasn’t worth it this time. I had to come off it and find another way to manage my health.

But we were at the start of a global pandemic meaning my next appointment was cancelled with no rescheduling and my existing medical anxiety increased massively. There was complete clarity as to what I needed to do and some knowledge of how I would do it. I felt in control of my health and wellbeing for the first time in a really really long time. But the treatment I had hooked so much on had failed. It ripped me apart.

I did what I always do, I survived and made a plan to do what I needed to do. I’ll talk more about this at another time. Part of my strategy however, was to read a book about trauma, until I could make it to some form of therapy. It was an excellent read and I will talk about it at another time. There was lots in there about sexual trauma which I read easily and without upset. Then there was an anecdote about medical trauma and it led to a full blown, horrendous panic attack. Even thinking about it now makes my chest ache a little.

It made sense and my partner confirmed what I thought - any other traumas I had faced were in the past and while I hadn’t fully gotten over them I had had therapy about them. But my diagnosis with a chronic illness, my first surgery and everything surrounding that was my day to day life. My past, present and future. Not something to box in. Not something I had received therapy for or discussed in detail. Not something I knew how to process.

I thought about how I usually dealt with this. I mainly used Instagram to talk about my problems and day to day struggles. It gave me great joy to be able to help people and to know I wasn’t alone. It felt like I had a community and people who understood and wouldn’t judge me in the same way. But there was another side to it. It caused me to focus entirely on my illness. Even when I did a month worth of positive posts there was always another overtone. Almost like I was lucky to live a limited life because it wasn’t as limited as others. As if the good days were a blessing when they were most people’s normal days. It wasn’t helping my healing in the way it should be and it might be hindering it.

So I decided to take a break from social media to focus on my healing. It’s only been a few weeks but I’ve been able to focus on ‘me’ a lot more and I am feeling optimistic about where I am heading. I still have a lot of thoughts and a lot of things I want to get down and share, in case it helps anyone. So I’m going to try a few “this is my healing” blog posts and gradually return to social media - using it to talk about my life rather than my limitations.