ME/CFS in pregnancy, birth and postpartum.

Being pregnant with ME is at once amazing (look at my body doing what I have asked it to do!) and also confusing (is this normal pregnancy tired or ME tired?). This miracle that your body is suddenly performing following years of giving you absolute grief is confounding to say the least. 

For many people with ME there are hallmark symptoms, or rather the ones you become overly familiar with. These are different for everyone. For me they have been consistently fatigue (shocker), brain fog, a buzzy body (a feeling you’re nervous system on the fritz), floaty body (dissociation), lightheadedness and dizziness and a whiplash of debilitating flu like symptoms following any audacious uptick in mental or physical load. 

It sounds quite the cocktail and it is. But I'm also used to it. One of the most annoying parts though is when your body sends you a weird curveball every once in a while. I once  felt like my organs were on fire for a week for example and another time my lower limbs felt so heavy I just couldn’t mobilise for an extended period. Every so often my life just seemingly capsizes for a bit, and just as I reach the point of acceptance that this is going to be my new life forever, the boat flips back over into its ‘normal’ ME state. So for what for most would be a panicked dash to A&E, for the ME/CFS aficionado is just another spin round the merry-go-round. 

And that’s when the intersection with pregnancy gets quite spicy. This unfamiliar ground throws up many a new symptom. Morning sickness is perhaps the most expected, you know when it hits and can handle it to some extent. Other things that come out of the blue that are less known however can bring a sense of fear and unease. For example when you feel you might pass out suddenly during your second trimester or have weird heart palpitations in your third, it is hard to know whether ME is playing tricks on you or if it's something you should genuinely investigate. The mind can play horrible tricks when you are in such a high-stakes state and the sense of responsibility for decision-making around yours and your baby’s health can be crippling. 

There is discourse in the birth world to ‘trust your body’ in birth and pregnancy. This can be quite triggering for the chronically ill who have been betrayed by their bodies often for years. That kind of trust once broken is very hard to regain which adds a level of precarity to pregnancy that is hard to describe. So the same body that couldn’t get out of bed for days because you had an extra glass of wine at dinner, worked for that extra hour in the evening, or watched that extra episode of trash tele too late is the same body I’m supposed to grow and birth the most precious thing imaginable? It's hard to imagine, even harder to trust.  

I wish I could write a long list of all the weird and wacky symptoms we can put in the ‘normal’ box to give my fellow CFSers the mental break they so deserve. However, given the lack of high quality research around ME in pregnancy there is little I can offer beyond an expansion on my own experience and what I found to be helpful. This may all be futile given the expanse and diversity of experience (not to mention possible co-morbidities and complications to pregnancy) out there but if one person can take even one little nugget then it’ll be worth it. So here goes, some titbits you might put in your locker:

• Add a dollop of conservatism to your energy planning - i.e. ditch optimistic pacing. Pregnancy tired + ME tired do stack. So if you’re used to having a restful morning to account for work in the afternoon, stick some extra buffer time on top of it to account for pregnancy (if you can!)

• Pace even on your good days - don’t let that second trimester trick you into thinking you have extra reserves. It’s so great to feel great but don’t let it bite you in the bum too hard by going wild as a result (tell that to the me that thought I could handle a festival with thunder crotch).

• Get a good team around you - not everyone ‘gets’ ME and that’s ok. Having trusted people who I could share my fears and concerns with was invaluable. Get over your fear of telling clinical teams about your condition (I know, I know they ignored you before but keep telling them) and someone might just write it in your notes.  

• Build an ME-aware birth plan - we all know that birth can be a marathon and can be exhausting beyond belief. Help yourself as much as possible by planning for the most rest as humanly possible - think restorative positions, genuine nourishment, conservation in early labour and avoidance of interventions that will prolong and potentially complicate your labour.

• Don’t accept complete exhaustion as normal. This is a weird one I know as often people with ME have fatigue that isn’t improved with rest. However if you feel completely depleted and cannot catch your breath this could be a sign of some form of iron deficiency, thyroid or other clinical issue which is worth exploring with your GP. I caught some very low iron levels in my second pregnancy which I was able to get supplementation for for example. This can be hard to do, I know. As a community we are used to adding symptoms to our rosters and generally avoid the doctor for fear of dismissal but your pregnancy health matters and if there is something else going on then you may be able to find some support.

• Get to know your local Maternity Assessment Unit (MAU) -they provide urgent care, monitoring, and triage for pregnancy-related concerns. I am a BIG believer in trusting your gut so if anything is truly niggling at you then it's worth contacting them for peace of mind. 

• Don’t google your symptoms - this needs no explanation.