Pregnancy, birth and ME/CFS- my experience

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Hi, I just wanted to note my experience of going through a pregnancy and birth with ME. When I got pregnant I found very few testimonials from people who’d been through it and wanted to offer up some information for anyone else going through this.

I’ll start by saying that my ME pre-pregnancy was manageable. I worked 4 days a week in an office and could cope with one or two short trips out on weekends (food shopping, errands etc). Housework or chores involving lifting, standing for periods were harder and limited to once a week.

In terms of fertility/getting pregnant, I didn’t have any issues. I’m 33 and my husband and I expected that it could take a while due to my age and health however we fell pregnant very quickly. I read a few pieces about it being harder to conceive with ME which prepared us for the worst. However I used a period tracker app to find my fertile days and conserve energy(!).

The first 2 and a half months of the pregnancy were awful and I was terrified the whole pregnancy would be the same. It was like my severest ME days. I felt like I had weights on my back and even sitting up was impossible. I spent weeks lying on the sofa, nauseous and exhausted. My husband had to pre-prepare my lunch and snacks so that I didn’t have to stand for long. I experienced headaches, sore muscles and felt like I could barely walk.

However, by the third month I felt like a semi-functional human being again. I think it was a bit easier as we were telling friends and colleagues by then so at least there was a bit more understanding.

As it turns out the rest of my pregnancy was pretty textbook. I had one incident with shortness of breath at about 6 months and due to a family history of DVT they were very thorough and tested me for a pulmonary embolism. Everything was fine in the end. To be honest I think as the baby was getting bigger, my body was getting tired and I was still working etc, it was just too much for me.

After the initial wave of symptoms was over I experienced trapped wind, pelvic girdle pain and aching back. The girdle pain spread across my right hip and continued throughout my pregnancy and still flares up months after the birth.

At my booking in appointment with the midwife I mentioned my ME and she was very supportive which I wasn’t expecting after my experience with GP’s. She said that she’d have a chat with some colleagues who had experience with ME patients. She also gave me lots of encouragement and support at all my follow up appointments.

I used my annual leave to tag on the start of my maternity leave. So I ended up having a month off before my due date. This really helped as by that time I was exhausted and my work was becoming stressful. It also gave me time to potter about at home and relax before the baby came.

I really struggled with the birth plan. On one side I wanted a water birth. I love the water, it sounded more relaxed and my husband could stay in a room with me afterwards. On the other I really wanted a c-section. It would give me a defined date and time of the birth so I could mentally prepare. It would also mean that I wouldn’t experience a long labour, the exhaustion of hours of contractions followed by pushing whilst already beyond tired. My main concern was the exhaustion of labour. I worried that I’d go into labour at the end of a busy day and be running on empty before I even started. Or that I’d have a long labour, need assistance and end up having a c-section anyway. So I’d not only have the surgery recovery but also the preceding hours of labour to get over. In the end, because the thought of surgery terrified me, I opted for a water birth.

I can safely say it was the best decision I could have made. My waters broke at 7am 2 weeks before my due date but I had no pain or contractions so I was told to wait at home until 6pm then if nothing had happened go along to get checked. At 2pm I had some blood so I phoned to discuss it and they asked me to go in. After a quick listen they said everything was fine and that they’d book me in for an induction the next morning. This terrified me as inductions are normally longer labours and can be more painful. We got home by 4pm and I had been feeling a dull ache low in my tummy. They said I’d know when the contractions started and this didn’t hurt so I ignored it. Until it kept happening regularly. By 4.45pm they were a minute and 30 seconds apart and they told me to go back in. Luckily we live close to the hospital as by time we arrived I was 7cm dilated and by time the pool was full I was ready to push. My labour was 2 hours 30 mins long. I think my body just took over and did what it had to do (for possibly the first time ever!). It was so fast that I had a stream of midwives coming through to see the woman who went from 0 to 7cm in 2 hours!

An hour after the birth I had a very shaky shower, I think the adrenaline was pumping after such a quick labour. Then I walked to the recovery room and settled in for the night. In the days that followed I waited for the crash, the swollen glands, exhaustion all of the normal reactions to physical and emotional stress. But they never came. Yes I was tired, 2am and 4am feeds will do that, but I didn’t have the overwhelming blanket of fog I was waiting for.

I struggled emotionally for a while when my husband returned to work but physically I was doing well. At 5 weeks old my baby caught a cold, then my husband caught it, then I caught it last which is unheard of, I’ve always been first to catch anything. I thought, this is it, this will be where it all catches up to me. But again, I suffered for a week (normally it’s at least 2) then I was back to normal.

My baby is now 4 months old and I’m still doing well. I’m still on maternity leave and don’t know if this is helping my ME. Today I cleaned the nursery, baked Christmas cookies and looked after the baby alone while my husband was out for the evening. Last year I would have been shattered doing one of those things let alone all three. I’m cautiously optimistic that my symptoms have improved. I’m not overdoing it but I’m also trying to make the most of the extra energy for however long it lasts.

I really hope this offers some knowledge, comfort or solidarity to anyone going through or watching a partner go through pregnancy with ME.
 

RebeccaRe

Moose Enthusiast
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Thank you so much for sharing your experiences! I'm newly married and hoping to have a baby someday, but have been nervous about how ME/CFS would affect pregnancy, birth, and parenting. I know that some people have had a harder time, and some people have had an easier time. It's just nice to hear the voice of someone who has been there.
 
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Thanks everyone! I’m loving every moment, it’s even got me back into writing a journal. I’d given up over the years (weeks of illness and watching tv aren’t fun to look back on!) but re-started during the pregnancy and I’m continuing now.

@RebeccaRe congratulations on your marriage. I know exactly what you mean. There were a few clinical pieces about the birth side of things but very little from women who’d done it and come out the other side.
I put off having a baby for a long time as I was worried how I would cope and what type of parent I could be. But what I’ve learnt is that you take it one day at a time like everything else in life. You’re not going to be handed an energetic toddler the moment you conceive (thank goodness!), it all comes in stages and you learn to adapt.

I kept seeing families on Facebook who go hiking and outdoors every weekend. It made me feel like I’d be a bad mum if I couldn’t organise 10 educational adventures a week. But just because they do that sort of thing doesn’t mean I have to. Plus recent studies say kids are being over scheduled and not learning to entertain themselves and use their imagination to escape boredom! If there’s anything we can teach our kids it’s overcoming boredom in inventive ways! :)