Being Pregnant With CFS/ME
I had no idea what my pregnancy would be like going into it with ME/CFS, but of course no one does. Even if I was totally healthy I may have had a hard time and experienced some of these things regardless, but of course I’ll never know.
Now that I’m in my third trimester, I wanted to share a few of the things that I’ve experienced in pregnancy because there isn’t a lot of information available about CFS pregnancy and this might perhaps be useful to someone else.
So let’s start with the basics. I’m a Brit, living in Spain and I’m 34 years old. As a first time mum, this is on the older side, but here where I live it isn’t unusual at all. I would say I’m one of the younger mums whenever I go to the hospital for appointments.
I had glandular fever in 2017 (and I’ll post more about my recovery soon) and was diagnosed with CFS/ME when I didn’t recover well. We put baby plans on hold as a result, until early 2018. Looking back we didn’t wait long, because of our ages. Parenthood wasn’t something we wanted to miss out on so as soon as I thought “OK, I think I might be able to manage this,” we began to try.
I work from home, for myself, so I set my own hours and workload and that gives me the ability to do more or less depending on my health. I am under no illusions that it will be difficult to add a baby into this mix, but I’m up for the challenge. As I say, it’s not something we want to miss out on and I’d rather continue to adapt our lives to do what we can with a baby, than live without that joy in our lives.
The First Trimester
I found out I was pregnant on 11th July 2018, with a digital test and it was still very early. The test told me I was 1-2 weeks pregnant which I had suspected as I had felt nauseous and dizzy for two days. However these were also regular CFS symptoms and having CFS symptoms and not knowing what was causing it was a common theme in the first trimester.
I felt OK until I was about 6 weeks pregnant, with a small and manageable amount of nausea and dizziness that I was used to, before week 7 came along and I couldn’t even think about food without being sick. I survived on plain crackers, ginger biscuits and apple juice and had to avoid other people eating because that would set me off too.
I felt a lot worse when it was warm, and as it was August and both the UK (where I was visiting family) and Spain were experiencing heat waves, that did present a difficulty.
I continued on my bland diet until the end of the first trimester, and I was also ridiculously tired. I hadn’t been sure if I would notice the usual pregnancy fatigue on top of my CFS fatigue, but it was as if someone had taken my batteries out. I slept for 3 hours each afternoon and couldn’t be woken up. It worried me, as I wondered if it was just caused by pregnancy or whether this was a new thing I’d always have to contend with. It meant that I worried a lot, because what if I’d done this to myself and made my CFS worse for life? Having lived with CFS, I told myself not to worry because symptoms come and go all the time. Most things are phases, but it didn’t stop me being really worried at the time. When I was in it, I couldn’t see the end of it.
I also found myself much more anxious and emotional than usual. I worried about miscarrying every day and was reassured by each appointment that we had. I didn’t feel in control of my emotions at all and would rage one minute and then cry the next. I think both of these things contributed to how tired I was, which was surely exacerbated by how little I was eating. I lost 6kg/13lbs and found it odd, given that everything was still too tight around the stomach for me to wear.
The biggest win of my first trimester? Well that had to be the 95% reduction in pain that I felt. I used to have daily muscle and joint pain that required strong painkillers to control. I came off them before I got pregnant and was worried about 9 months without them, but the pain disappeared almost entirely and I was thrilled. I used to find the pain to be my most challenging symptom so was really glad to be rid of it, at least for a while.
I was counting down to the end of the first trimester when I would hopefully have more appetite and be slightly less hormonally crazed, and I know my husband was too!
The Second Trimester
I was lucky. My hopes were realised when I became able to eat, almost as normal, around 16 weeks. I had almost entirely gone off meat though and didn’t eat any at home until around 20 weeks, preferring veggie options whenever I could. As I felt more hungry and nausea became rare, I felt sure that I’d put weight on quickly, but it wasn’t until 26 weeks that I got back to my pre pregnancy weight, but then I quickly lost a kilo again.
My need to nap went from essential to desirable and between weeks 20 and 22, I had more energy than I’d had in the last 2 years. Sure, it didn’t last long, but most days in my second trimester were OK to good energy wise. I didn’t have to nap every day and I was able to get work done and concentrate well. After being so worried that I’d be exhausted forever, that was extremely welcome.
Having read about the increased chances of CFS Mums miscarrying, I was grateful to reach our 12 week and 20 week scans and see everything was well. When I had episodes of bleeding around 16 weeks I was seen quickly at the hospital and I took it as a sign to slow things down again. There was no obvious reason for it, but taking better care of myself was never going to be a bad idea. I bled again at 26 weeks and again was told that there was no obvious reason for it, but to take things easy and relax. This time the stakes felt higher, having felt our little one moving around so much for the previous 7 weeks, and it took a lot of meditation to calm me down.
The thing that I’ve most enjoyed in the second trimester has been feeling good in my body. I love seeing my bump grow and feeling as though my body is doing something impressive, after months of feeling let down by it. I loved the initial flutters and pops that I felt from 19 weeks onwards. They became strong kicks from 22 weeks and reassure me that our little one is doing OK in there. I still don’t have much muscle or joint pain at all, which is a relief. I had felt uncomfortable at times as my bump grows (and when I had a stomach virus) but I would most definitely trade that for the daily pain I used to suffer. I manage fine without painkillers so far and that is such a blessing.
The biggest focus for me at the moment is increasing the amount of pregnancy appropriate activity I do. I haven’t been as active as I would have liked at times during this pregnancy, because things haven’t been as straightforward as I had dreamt they would be. I would like to be in the best physical shape I can be for the birth, so I am walking, swimming and doing yoga as and when I have time, energy and remember to!
Because I never know what will happen with my energy, I have also started preparing for the baby earlier than I think I would ordinarily. I didn’t want to leave all the preparations for the third trimester as my husband travels for work and it can feel like a lot of pressure to fit in big jobs to concentrated bits of time when I don’t feel good. That said, we do still have most things to shop for in the third trimester and it’ll be a priority for us to organise in January around my husband’s work trips, until it’s time to welcome our Baby Chicky, as he or she is referred to.
Better than expected
Based on how the last six months have been, I feel very glad that we took the leap to have a baby now. I have no idea what’s coming up in my final trimester, or indeed for the birth or anything beyond that. None of us do though.
I’m been preparing as much as I can by reading The Positive Birth Book and Your Baby Your Birth which have made me feel informed and as prepared as I can be and I have also bought a home hypnobirthing course which we will be working our way through in January as well.
If I had spent too long thinking about what I’d read online, I may have talked myself out of it entirely and I want to add to the information online about CFS pregnancy as I’m pleasantly surprised by my experiences so far.
That said, I will be very interested to see how my body deals with labour and birth and how my recovery is. These are things which I bear in mind, but try not to worry about. It’s a delicate balance as I prepare myself as much as I can.