ME/CFS Maternity Care

25 Jun
© Jess Bruce 2016

Bump at 24 weeks © Jess Bruce 2016

It has been quite a week here in the UK with apocalyptic rain storms and shock referendum results. I’ve been at my parents house avoiding the fallout of the Brexit vote and also the paint and decorating dust of our home improvement works.

I saw my tummy move for the first time this week from the baby’s movements which was so weird but also amazing! It really is incredible, feeling the baby move more and more inside me. I can’t wait for the movements to increase that bit more so Mr B can see and feel them too.

I just wanted to say following on from my post last week, that although my ME/CFS is certainly more active with increases in symptoms at varying points during my pregnancy, it is still totally manageable and I still consider myself very lucky and am very grateful that my body is coping as well as it is with my pregnancy. I’ll save pregnancy symptoms for a separate post, but I am getting off pretty lightly (so far at least) compared with many other entirely ‘well’ (i.e. without a chronic illness) women in terms of the typical symptoms of pregnancy.

So anyway, onto today’s post. Despite my medical history, I am classed as a low risk pregnancy – hurrah! Though there are some extra considerations that have been raised that I will share now.

Pregnancy

In terms of pregnancy care, due to my medical history I was referred to an obstetrician consultant by the midwife at the start of my pregnancy. This served to give an overview of the issues we needed to consider due to my ME/CFS.

I am having extra growth scans to keep a closer eye on the baby’s progress and having my thyroid function checked every 4 weeks. I came off my thyroxine before conceiving, and so far my levels are within the normal range but if it drops too far I will have to go back on it. Thyroxine is  safe to take when pregnant and as your thyroid is vital to a baby’s growth in the uterus it is important to have it monitored when there is a history of underactive thyroid as there is with me.

Beyond that I am having standard maternity care, having been seen by the midwife at 8 and 16 weeks so far, with my next appointment this coming week, at 25 weeks. In my area you are not assigned a specific midwife and instead they operate as a team. Some of them seem very clued up on what ME/CFS is whereas others it is less so -‘so you’re just extra tired then?’ was what the midwife at 16 weeks said…. But that sadly is often the greeting you get in mainstream medicine about ME/CFS so it wasn’t a massive surprise. The other midwives and obstetrician have been much more informed.

Birth

The obstetrician consultant explained that where fatigue is in the mother’s history, they tend to advise earlier admittance to hospital during labour so that pain relief can be administered earlier as pain is obviously highly depleting in terms of energy and if fatigue is a concern then extra measures need to be taken in order to conserve energy for the actual delivery stage of labour.

That said, my preference is for a natural birth. Mr B and I attended a Hypnobirthing workshop last weekend (more on that in a future post). We both found it very empowering and informative (I think Mr B was surprised by how useful he found it, he was pretty sceptical beforehand). Hypnobirthing comes from the same science and neurology as the Lightning Process, which has helped me so much with my ME/CFS recovery; so it is something I feel very comfortable and confident using.

Adrenaline and cortisol are highly depleting in terms of energy and also inhibit cervical dilation, so I will be aiming to use all the tools I have learnt to keep my stress levels (and consequently pain and fatigue) as under control as possible.

But we will see how things go – everyone says it’s important to not be too tightly set on a certain birth plan as birth has the tendency to go its own way and do the unexpected.  So if an epidural is necessary due to my fatigue levels or otherwise, then so be it.

The obstetrician also advised against an elective c-section. Given labour is called labour for a reason – it is not exactly a walk in the park – I had thought perhaps an elective c-section would be recommended. But whilst this would obviously help with fatigue management at the actual birth, it is major surgery and relapse rates of ME/CFS following surgery are far higher than after a vaginal delivery. A woman’s body, even one with ME/CFS, is designed to deliver a baby, it is not designed to be cut open through major invasive abdominal surgery, and as I am learning through my pregnancy, my body is amazingly resilient and adaptable.

Post-Partum

Regardless of the type of birth, a new mum who has ME/CFS may need more help post birth in order to pace herself and to cope with the ‘normal’ post delivery fatigue and of course the tiredness of having a new bundle of joy to care for at home.

It is that first month or so when the mother is most depleted and vulnerable to ME/CFS resurfacing that extra support needs to be considered. Prevention and pre-emptive action is very much key here.

In our case, Mr B may take extended paternity leave, my mum is lined up to help and we are looking into post-natal doulas and sleep nannies. We will have to keep our inner circle pretty small, limiting social visits in the early weeks/months, both in frequency and duration, to keep my activity, fatigue and stress levels at the lowest level possible.

Again, a newborn is unpredictable so our approach is to have different plans in place as options and then to do what feels right and necessary at the time, and to adapt as we need to.

I think that covers most of what we have discovered so far. I’ll update this post as we learn more. If anyone has anything to add in terms of pregnancy, birth or life with a newborn, from an ME/CFS perspective or otherwise, please share in the comments below.

If you would like more information, you can order information leaflets (which I have found very helpful) from the U.K. M.E. Association. They also run online forums for parents with ME/CFS and have a helpline.

To read more about how being pregnant is affecting my ME/CFS, see this post.

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10 Responses to “ME/CFS Maternity Care”

  1. Melissa June 25, 2016 at 8:41 am #

    It’s so great careful they’re being of the ME even as far as to conserve energy during labour. Mine never even treated me at all differently for Fibro and this time the midwife again hasn’t heard of it and hasn’t appeared to research it. I’m hoping a specialist appointment next month will provide some insight 🙂
    So glad to hear that your symptoms are manageable!

    • myjourneythrume June 28, 2016 at 4:41 pm #

      I hope your specialist appt helps. Let me know how it goes, I’d be interested to compare notes. As ever with these illnesses, knowledge and care of medical professionals is a bit hit and miss so I’m pretty lucky with the attention I’ve got I think!

  2. Valerie June 25, 2016 at 1:57 pm #

    I’m glad you’re feeling well and it’s wonderful that you and your husband found the hypnobirthing class helpful/encouraging!

    • myjourneythrume June 28, 2016 at 4:40 pm #

      Thank you! We really did find the class helpful, I plan to write more about it soon.

  3. thehomeschoolingdoctor June 26, 2016 at 2:43 am #

    I’ve never heard of a sleep nanny! That sounds BRILLIANT! And visitors at the hospital were exhausting for me. You never sleep well at the hospital (at least here) due to night patient checks, nursing, post-delivery discomfort, etc. I kind of wished people would have waited. On the other hand, knowing they cared so much was kind of special, though. Glad your doctor is thinking of your unique situation.–Terri

    • myjourneythrume June 28, 2016 at 4:40 pm #

      I’m worried about the hospital stay for exactly that reason, I can’t see how you can sleep well. The only time I’ve spent any time in hospital (one night for tonsillectomy) I didn’t really sleep at all due to noise, lights, night checks etc never mind baby and pain! I’m hoping I can get in and out of hospital as quickly as possible, though here I’m pretty sure for first baby that will still mean at least one if not two nights having to stay in. Though I believe sleep is in short order for a long time with a new bundle of joy!

  4. Lucy Grove-Jones June 28, 2016 at 2:32 am #

    Oh my gosh! Congratulations on your pregnancy! (clearly I’m a bit behind).

    This is something I am so worried about for my own future — cfs plus parenting, I mean. It sounds like you’re handling it really well so far!

    I don’t think I’d recommend an elective c-section. Not that I’ve had one. But I had an enormous ovarian cyst removed and the surgery ended up being similar to a c-section. Not only was it revolting to recover from, but it’s probably what triggered my cfs in the first place.

    • myjourneythrume June 28, 2016 at 4:35 pm #

      Thank you! Not behind at all, this was only my second pregnancy post. Thanks for the info on the c-section. I have heard them likened to ovarian cyst removal ops and it definitely isn’t something I am keen to experience. What you say about the operation probably being your CFS trigger definitely makes sense and reinforces why I want to avoid c-sections. Fingers crossed my body and baby play ball and I can have a natural birth.

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