PTSD and exhaustion

A couple of days ago I went on a really long walk. Well, a really long walk for my current self. I gave up wearing a Fitbit in December because I was barely managing 500 steps every day and I didn’t want a reminder of how inactive I was. My partner had his on though and reckoned we’d done around 15,000 steps. That seems incredible to me!

Before I was hit with PTSD I was a super active person. I ran, went to the gym to do Olympic weight lifting, and did a lot of circus stuff! That’s where I met my partner, in our local circus school (take that, internet dating). We did aerial circus stuff – I love the aerial hoop – and also do acrobalance together.

Around this time last year I had a huge 40th birthday party and performed on the aerial hoop during it. My partner and I also did an acrobalance routine. Some awesome circus friends did routines too. It was such a great occasion – prancing around in a sparkly leotard, happy and happy with my fitness. Then we launched into trying for a baby and it ended up in an emergency operation and the loss of my baby and PTSD.

For most of the last 5 months I have been unable to get up in the morning. Most days have been spent fighting to feel less tired. The kids have got used to walking themselves to school in the mornings, and my day has revolved around finding enough energy to be able to collect them at 3.30pm. It’s a 3 minute walk down the road but many times, I’ve been sweating with the effort, feeling faint and nauseous, struggling to stay upright – like I’m carrying a huge weight on my back. Often I’ve gone in my pyjamas, hidden by a long coat and boots with my unwashed hair hidden under a hat.

I don’t recognise myself anymore. Fitness and physical pursuits are a huge part of my life, and a huge part of how I spend time with my partner. It’s also how I’ve dealt with emotional difficulties. I took up running when I split up from my husband and it was my lifeline. Running allowed me to process things in a really positive, controlled way. I felt physically better after a run, and life just seemed better generally and more manageable. This is how I wanted to deal with the loss of a baby, but my body has prevented me from doing it. That has been incredibly frustrating for me. The way I would deal with something is not something I am allowed to do – my body is truly at war with itself.

When I’ve picked my kids up from school so many people – who only know I had an operation – have told me how well I look. First, that’s total nonsense as I don’t look well or like my old self at all (brightly coloured hair, make up). Second, my illness is invisible. I may be present at the school but it’s taken me 6 hours of slowly getting out of bed to get there. That isn’t being ‘well’. It’s made me really tired and defensive – thank you but I’m not well actually, I’ve been stuck in bed all day. Thank you, but I am just the same as I was last month. ‘Why?’ I’ve been asked so many times. I’ve only been able to say PTSD recently; before then it was just upsetting as I didn’t know.

I have been to the doctor so many times, distressed at how I can’t get myself well, railing against why I am so tired all the time. She’s always just said there is no obvious reason for it and that she can do nothing. Not once has she asked about events that led up to my operation. Not once has she broached possible mental health issues. I find that staggering, especially looking back.

It isn’t my normal to be floored by exhaustion all the time. I tried to go walking so many times before Christmas and every time I did, I’d be back in bed for days afterwards. It felt as if I was being punished for trying to be active. There was a clear before and after too – and that to do with the baby. Of course that is the reason for all this tiredness. I have no idea why my doctor wasn’t prepared to try and help me, but that’s been very unhelpful.

‘Just rest,’ everyone has been saying. But resting isn’t doing anything – and it isn’t resting, as in restful, it is being trapped in a stillness I’d do anything to avoid. And also, I’ve been resting for 5 months with minimal improvement – how long am I supposed to put up with doing that?

There has been some, slow, improvement. I’ve been able to go swimming from January – that, I’ve find, I can still do when I have almost no energy. It’s been so wonderful to be somewhere else, and be in the water – I find it very freeing to be in the water. And it’s somewhere I can go from my bed, in my pyjamas, and come back again. But it hasn’t helped with feeling wobbly, staggering around, like walking is the most difficult thing in the whole world.

I have felt like a shadow of my former self, and mostly distressed, for 5 months. But since I started EMDR I have felt much less tired after sleeping. I have had sudden bouts of tiredness, or sleep, during the day (actually very impractical when trying to look after two children). But I have suddenly found myself feeling…more normal. More me. I am also much less nauseous too, which has been with me as a nearly constant companion since I lost my baby (fun!).

The walk we went on, I was struggling near to the end but I’d walked so much further than I thought I was going to be able to manage. And, crucially, it hasn’t had a knock on effect in the days afterwards. Yes, I was tired the next day, but not laid up in bed tired. A few months ago, a walk like that would have been impossible – and if I’d attempted it, I would have been stuck in bed for a week.

I am so cautious about thinking that I might actually be beginning to get better – every time I’ve said that to someone, I’ve been back in bed within a few days. But this time really does feel different. That huge weight I was carrying on my back before isn’t there – I can walk upright and it isn’t the most difficult thing in the world. I now also sense that I need to do some exercise in order to sleep well – and that’s the old me. The me that I’ve been with the last 5 months has been someone who has done no exercise at all during the day but still slept quickly and deeply.

I’ve also noticed a change in my hunger. I haven’t been super hungry but I’ve eaten a normal amount of food for me, even though I’ve not moved from the bed or the sofa most of the day. I have needed that food. This past week I’ve been carrying on eating that amount, whilst also trying to do a reasonable walk every other day, and just be as active as I can the other days. And now I’m much less hungry. I’ve been unable to finish things – or I’ve eaten a normal portion of food without thinking and have felt uncomfortably full. Things seem to be changing.

One of the greatest difficulties about all this is that I still want to have a baby, and with that would come hyperemesis gravidarum (not to mention the sleepless nights for years afterwards if it’s anything like my other two children). That’s why I’ve found the whole ‘you must get well’ thing futile. Why bother, when I want to do something that’s going to make me ill? And in the back of my mind – what if I enjoy being well so much I realise I can’t go through any of that again?

I can’t hope for a future where I’m back running, going to the gym, and doing circus things because that would be a future without a baby. It will take months for those things to be possible again and I don’t have that time. If I could get there in a couple of months and got pregnant again, I’d be losing all of that all over again. It’s a huge amount of turmoil churning away for me.

To try and be positive though – I am so pleased about that long walk. It makes me remember, just a bit, what being out and about and running feels like (I couldn’t remember that anymore). I need to stop hoping or thinking about what I might be able to do physically – or not – in the future. I have to try to embrace today.

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