Tag Archives: Chronic Illness and pregnancy

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.

An ME/CFS Pregnancy

18 Jun
Baby grows

© Jess Bruce 2016

Thank you so much for all your lovely comments on my last post about my baby news. It was so nice to hear from you both here on my blog and via social media.

This week I am 23 weeks pregnant and loving feeling our baby girl move more and more inside me. Whilst I was watching the England football game on Thursday she was going mad, not sure if this means she is a footie fan or not!

The big milestone this week was purchasing our first baby clothes which you can see in the picture, just so cute 🙂

Today I thought I’d write an overview of how my pregnancy has been in terms of my ME/CFS so far.

First thing to say is that ME/CFS is very much an umbrella term and very different for each sufferer and I have quickly learnt that pregnancy is equally unique and individual. No two pregnancies are the same. So if you’re reading this as a fellow ME/CFS sufferer who is pregnant or hoping to become so, don’t take what I say about my pregnancy and ME/CFS as a given, your experience could be totally different.

Before trying to conceive, as my ME/CFS was relatively stable and no longer severe, I was advised to gradually reduce my medications over 4 months. I wanted to do this anyway to see how well my body actually was without the medication masking symptoms. Despite some teething problems with withdrawal symptoms, I didn’t suffer a resurgence of symptoms and haven’t had to start taking anything again. (Please though, don’t reduce or stop medication without speaking to your own doctor first).

I had been told by my neurologist that some women with ME/CFS do really well during pregnancy, with  the surge of hormones meaning they feel better than ever with far fewer symptoms and much more energy; others however struggle with the impact of the growing baby depleting their body to such an extent that they deteriorate and relapse and for some there is no real impact with their level of functioning remaining the same. My consultant advised me to be prepared for the worst and then anything else would be a bonus.

For myself, I’m glad to say that, touch wood, so far so good and there hasn’t been any major relapse. I would however say that it has been a combination of the above, with my level of functioning varying at different stages of my pregnancy.

At the start I felt pretty good, with more energy and very little to complain of for the first 8 weeks or so. Even the bleeding I had at week 7 didn’t trigger more than a week of increased fatigue. Sleepy tiredness and fatigue (there is a definite distinction between the two) began to creep in towards the end of the first trimester but to begin with things were good.

As the first trimester turned into the second, things deteriorated both in terms of ME/CFS symptoms and issues with my pregnancy. And the two were most definitely linked. With all the bleeding and accompanying abdominal and back pain that I suffered weeks 12 – 16,  my fatigue and myalgia levels greatly worsened. I suspect this was due to the enormous stress and worry I felt about the bleeding and my ME/CFS wracked nervous system went into overdrive.

Time helped heal all of this, but there was a lag effect on the fatigue and myalgia with it lasting beyond when the bleeding stopped.

And to be honest, the fatigue, although improved and now not day in day out, is very much still worse for me than it was pre pregnancy. But that is a small price to pay for growing a little babe inside me and something I’m more than capable of adapting my life around. After 5 + years of ME/CFS I’m very used to it.

Leaving aside my pregnancy specific symptoms for a later post (there is of course overlap but clear differences too), here is a quick synopsis of the impact being pregnant has had on my ME/CFS symptoms:

Energy – better initially, then worse

Fatigue – worse as pregnancy has progressed

Myalgia – much worse weeks 11 – 18, now it’s about the same as pre pregnancy levels, probably slightly more prevalent as my fatigue is worse and the pain always spikes when I’m more tired. I suffered quite a bit with pain during our holiday to South Africa in March (11 weeks pregnant) but as I was doing more it was to be expected I guess

Sleep – good despite more wake ups during the night needing the bathroom and to change position / rearrange support pillows, most days I wake up feeling rested, some not so much

Headaches – worse until 16 weeks but settled touch wood, they were pretty bad and without being able to take painkillers really depleting on my energy levels, these cooling forehead strips are amazing

Dizziness – worse on getting up from bed and out of chairs until 20 weeks but better now

Anxiety – worse

Gastro – worse initially (iron in pregnancy vitamins did not help ) but now much the same as before i.e. my usual combination of regular and under control most of the time – provided I stick with my restricted diet and take my soluble fibre supplement (which I am still taking having okayed it with my GP) – and then unexplainable blips where bloating and constipation take over for a few very frustrating days.

So that’s my whirlwind tour of how I’m coping with ME/CFS and pregnancy so far. Next post I will talk about some of the extra maternity care and birth advice I have received as a result of having a medical history involving ME/CFS.

Do you have ME/CFS or another chronic illness? Are you, or have you been, pregnant? Please share your experiences in the comments below, I am very much learning as I grow!

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