Preparing for a newborn when you have a chronic illness

Preparing for a newborn when you have a chronic illness

I’ve been extremely lucky that mine has been an “easy” pregnancy, despite having ME/CFS. I wasn’t sure what to expect at all, but have been really pleasantly surprised since I first found out that I was expecting in July.

My third trimester has been more challenging than the first two (which I wrote about here if you’d like to find out more) as I’ve pushed myself to take action and get ahead of myself work wise before the baby arrives. I’m definitely noticing my energy levels are lower, although I can’t say whether that’s pregnancy or ME/CFS to “blame”.

That said, pregnancy is hard work regardless. It’s physically demanding and it’s emotionally tough, whether you have a chronic illness or not.

Want to know more about my ME/CFS journey? This post will tell you more.

In any event, my due date is looming and rather than ruminate on what’s causing my to snooze my afternoons away, I’m taking this time to get ready for our little pudding’s arrival. Since January we have been focused on preparations and whilst every first time parents face a level of uncertainty, I feel like ME/CFS adds to that. I have no idea how my body will respond to labour and birth and so it’s important to me that we have as much ready as possible in advance to help our future selves out.

I’m sure, we’ll be exhausted no matter what, but I’ve been more relaxed in the lead up to my due date as a result of our advanced planning and that’s important too. When I’m stressed, I risk a flare up of my ME/CFS symptoms so with a due date to work towards, we’ve been happy to get ready steadily since 28 weeks.

So where did we start?

There are so many things to consider, so after reading a handful of books and delving into Pinterest, I made a list of the things I wanted ready by the end of March. They overlap a little but are;

  • Physical preparation

  • Mental preparation

  • Home preparation

And since I made the list, I’ve been keen to do at least one thing from my list every day. Does this sound like a lot? Hopefully it’ll make sense when I explain what they are! I can promise you that I haven’t felt overwhelmed by what I’ve been working on. In fact, it’s been the very opposite. Taking control now, of what I can do, has made me feel much more relaxed towards everything. Little by little we’ve made huge progress.

Physical preparation

ME/CFS has changed my body a lot. I cannot stress how much. I used to be a fairly strong person. I went through phases of physical activity but I enjoyed strength training more than anything and have lost so much of what I was able to do. I was super aware of this early in my pregnancy, and my morning sickness made me lose weight and feel even weaker.

So during this pregnancy I have been focused on doing regular light exercise to maintain and regain what I can. That has included walking, swimming and at home yoga, so I pick from these and try to do a little bit each day. I know that a little is better than none. Gentle exercise that I can do every day or so is far better than punishing my body and risking a flare up. I focus on what I can control and do and I choose from my selection of activities. I feel stronger for what I’ve done, and my baby is now in a good position to be born. This may or may not have anything to do with the exercises, I’ll never know, but I feel as though I’m helping things along. Feeling like I’m doing the right thing and feeling productive are two big things I struggle with, and if you’re the same, then regularly doing what suits you is far better than regretting what you can’t do.

Whilst I have no idea how my body will manage in labour, I feel more in control by moving my body in these ways. Some is better than none after all.

Mental preparation

The biggie here is our hypnobirthing course that we are taking at home, and the practice exercises that go along with it. By doing the course with my husband, it feels as though we are in this together, and that I am as prepared as I can be. We are doing The Yes Mum Birth Project course which I feel is excellent value at £95, if you can’t get to an in person course, or would prefer to learn from home. It’s taught us about the physical aspects of birth, how deep relaxation is helpful and breathing techniques for all aspects of labour and birth.

I took the decision to keep my reading list short and I’ve found 2 books extremely helpful. The Positive Birth Book by Milli Hill and Your Baby, Your Birth by Hollie de Cruz have been read and reread over the last 6 months and they’ve helped us with so many aspects of pregnancy and what to expect from birth. Again, reading (and discussing what we’ve read) is something we’ve aimed to do each day or so, from about 6 and a half months, to ensure that we don’t feel uninformed or rushed. Talking things through repeatedly has helped us both feel calm, knowledgeable and ready. I know if we’d left this until later in the pregnancy that I would have been more stressed by now, and as I keep saying, reducing stress is key to avoiding a flare!

The mental preparation has been the hardest part. Fulfilling our dream of having a family with a chronic health condition feels as though I’m preparing to jump off the highest diving board without knowing if I can swim or if there’s water in the pool. Terrifying, and altogether too much on some days. In the past, I have felt deeply worry about whether I will be able to be a good Mum, and so being equipped with the information to have specific conversations with my husband has been really important. There is an exercise in the Yes Mum Birth Project around releasing fears which has worked well for both of us. A safe space to discuss the worries we have, be they big or seemingly insignificant, has been really important to us both.

It doesn’t help me if my husband (or anyone!) brushes off my worries with a “Oh it’ll all be OK, don’t worry.” What has helped is being able to refer to actual strategies from our birth prep and things we’ve already done at home (more on that in a second) to ensure we’ve made life easier for ourselves in those first few weeks. Because anything can happen and it might not be what we’re expecting, but I’ll do better if I at least go into it feeling like I’m prepared.

I’d really recommend writing down worries that you have and addressing them with your birth partner or someone close to you. When we keep them in our head, they go around and around and tend to feel both never ending and as though there are hundreds! I usually find that actually I have a handful. That in itself helps me realise the scope of the “problem” isn’t as massive as I’d feared. Talking about them isn’t a magic solution, but it is an excellent starting place for you to feel heard and supported.

I’ve found the Headspace packs on Pregnancy and Pain Management very helpful too. Although I haven’t been in very much discomfort or pain during my pregnancy, the Pain Management pack was such a support to me when my ME/CFS joint and muscle pain was intense and so I wanted to remind myself of the techniques so that I’m able to remember them and draw on them when the time comes. Now that I’m in the later stages, I am starting to feel sore so I have some pains to practise with and more often than not, the meditations help me focus on the pain in a different way which allows me to see that it isn’t solid and never ending. I think the practice will serve me well in labour.

Home preparation

This is where most of our time, energy and money have gone since January.

One of the big things we’ve been working on is the baby’s room, and of course lots of people have pointed out that it’s not necessary to get the baby’s room ready before the birth but to me, it is. My husband works away quite a bit and I have absolutely no idea how I’ll feel in future. My symptoms may not return, or I may have a flare up. The thing with a chronic illness is that you really don’t know and whilst I try not to get stressed about that fact because doing so could trigger a flare up, I like to get ahead of things as best I can.

So we have a decorated nursery ready to go that we slowly worked on over the course of 6 weeks, because it’s not feasible for us (well, me) to do in a short space of time, like some people can. It’s been nice doing it this way and because we’ve done things steadily, I’ve been able to be super involved in the process and enjoy it. It has also allowed us to maintain a bit of a social life and for me to have to energy to do other preparation work. When you have a chronic illness, it’s important to spend your energy (spoons) wisely and so I plan ahead. It has been typical for us to spend a few hours on a Saturday and Sunday working on the preparation jobs and then go out, eat lunch and have fun with our afternoons. Knowing what I could manage and being honest about it was key.

What else have we done? Well, I’ve also been slowly gathering up what we need for our hospital bags, batch cooking up a storm, stocking up on things so we can just have some quiet chill time at home post baby, I’ve taught Rich about the essential oils that I love to use for relaxing and energising myself and tackling the niggly little jobs that I’d rather get done before the baby arrives. This I believe, is what they call nesting.

I’ve been a bit of a maniac, tidying out drawers and cupboards, throwing away mis-matched Tupperware (why did we have 10 lids with no pots to go with them?!) and organising anything I can get my hands on. Again, it’s been really helpful having a list to go back to each time I have a few minutes spare. Some people are happy to leave their preparations until the last few weeks, but I like to be organised and I think it’s suited my health too.

Although there are a couple of things that I’ve yet to finish on my list, I’ve had all of the important things ready since 34 weeks. It’s enabled me to stay focused on my work and enjoying these last few quiet weeks with my husband before life changes entirely!

I have still been overwhelmed at times about how I might feel after the baby arrives, as I’m sure all new mums do at times. However, I do think that slowly but surely making our way through all the tasks that need to be done has kept my energy levels fairly steady, empowered me as I’ve felt like I’ve been able to be involved in everything I’ve wanted to be involved in and given me the confidence that I can do most things, as long as I work to my own schedule.

My top tips for preparing

  • Work out what is most important to you and write them down. Do you want to make sure you have a stash of freezer meals or are you happy with takeaways? Do you want to organise a cleaner?

  • Work out a realistic amount of time for each task. That’s realistic to you. It doesn’t matter what anyone else can do in their days/weeks. It only matters that you give yourself the time to dedicate to your priorities without aggravating your health condition.

  • Start early and don’t listen to other people when they say you have plenty of time or don’t need to do that yet. If you want to, or feel it would benefit you, then go right ahead.

  • Know that your health and experience of birth and recovery are important, as well as having a healthy baby. There’s a lot said about how the only thing that matters is having a healthy baby but I don’t agree. Healthy Mums are important too! Take time for yourself, however you like, in between your preparations.

Do you have a little one? How did you approach preparing for their birth? Are you super organised or do you like to leave things until later?