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26 Tips for New Moms Living With ME/CFS

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Following a difficult spell with illness and sleepless nights with my toddler, it got me thinking about how I managed to cope when he was a tiny baby. Looking back to those early days when he didn’t sleep much at all during the night, it was such an exhausting time.

Having a new baby is unbelievably tiring for all new parents, but when living with a chronic illness like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), it really does push you to your absolute limits. It can be challenging enough trying to look after yourself, never mind adding another little person into the mix!

Thankfully it’s all very rewarding, and for me without a doubt, most definitely worth it. Despite all the rewards, that’s not to say it’s not really tough going. There are days when your body is crying out to stop and rest, but you have to push through and keep going. This is the opposite to all the things we learn to best manage our illness, like pacing and getting adequate rest.

However, by putting coping strategies in place, I found ways to adapt and find a new kind of “normal.” I also think that to a certain degree nature kicks in, and your body goes into “survival” mode to allow you to cope in those first few months. Once my son got a bit older, I was able to adopt better pacing and resting again.

I decided to come up with a list of tips that helped me to cope when my son was tiny. My hope is that they may help others who find themselves in a similar situation, or perhaps those who may be considering having a baby. So here goes!

1. My first and top tip is to not worry about anything other than looking after you and your baby. As long as your baby is loved and cared for, that’s really all that matters. You won’t have the time or energy to worry about anything else. I think I was in a “fog” for a lot of the first year, but we survived and got through – with some happy memories made too!

2. Set up a changing station downstairs. Keep some small storage boxes with diapers, wipes, clothes, and other things you may need to hand. This saves energy by not having to go upstairs for things, as well as not constantly having to think about what you need.

3. Nap whenever your baby naps. This is important for all new mums but “essential” as a mum with a chronic illness. Don’t get caught up in other “stuff.” You need every single ounce of rest you can get. If the house is a mess, it really doesn’t matter!

4. Pre-warn family and friends that you may not have the energy to speak on the phone, or even text. I had to hand over all baby announcement duties to my husband. Plus, I wasn’t able to speak on the phone to anyone for the first few months and could only manage very short texts. Social media was also a big no no for me for almost the first couple of years.

5. Accept any and all offers of help, such as babysitting, someone making meals for you, cleaning, etc. My sister was like a fairy godmother in the early days and used to bring us home cooked meals that we just had to heat in the microwave. This was an absolute godsend! I also remember her coming over in the first couple of weeks to sit with her new nephew so we could go to bed, and get a few hours sleep in the bank.

6. If possible, batch cook and freeze some meals before your baby arrives. Preferably ones you can eat with one hand – think chunky stews!

7. Make a packed lunch in advance (or ask your partner to make it) so you don’t have to use energy making something on the day it’s needed.

8. Try and eat regularly and keep well hydrated. I’d love to say eat healthily, but I found it wasn’t always possible in the early days. As long as you’re eating something to keep your energy levels up, that’s the main thing. Healthy eating can come later. In fact, I think having cake is essential in those early days.

9. You will need to have your baby weighed regularly in the first year. Ask your health visitor to call to your house for weigh in appointments (explain your illness) rather than go to the clinic. This helped me out so much.

10. Don’t feel guilty if you are not able to breastfeed. You may be made to feel you “should” by healthcare professionals, family, friends and even your very own self. I would have loved nothing more, but I knew I just wouldn’t have the energy – and that I would also need help from my husband with the night feeds. Do what is best for you and your family. It’s your overall happiness and wellbeing that is most important. Remember a happy mum means a happy baby!

11. If you are formula feeding, make life as easy as possible for yourself. Let your partner or relatives help with feeding your baby. You don’t need to do everything yourself. It’s nice if your baby is happy and adaptable to go to others. I also found it helped to have little storage pots of the formula powder measured out in advance. My brain would struggle to function to count the correct number of scoops for each feed, so this meant I was already prepared!

12. If you’re breastfeeding, make sure you rest whenever you can. Get your partner or relatives to help with other baby “duties.”

13. Have a prepped changing bag ready by the front door for occasions when you do go out. This helps to avoid any rushing around and having to think on the spot. Again, another energy saver!

14. Keep visits very short and well spaced out. Everyone will want to come and see your baby, but let them know in advance that these will need to be time restricted. This helps to manage expectations. Helpful visitors that stick the kettle on or bring food are definitely the best!

15. Set reminders in your phone to note down any medical appointments, feeds, or any medication you need to keep track of. In fact, just note down anything you need to remember! I found this helpful to refer to when asked any questions by healthcare professionals, and also just to keep track myself when brain fog was at it’s highest!

16. Don’t compare yourself to anyone else. Some mums will sound like they have it all sussed out! Yet, they probably don’t. Remember that they likely don’t have a chronic illness to contend with.

17. Do take time out for you. You may not get long, but even a bath or short meditation will help a lot.

18. Do your shopping online or accept any offers of help from family or friends to do your shopping. In the early days my brain wouldn’t even function to do it online.

19. If you have a partner and you’re able to, then set up sleep shifts! My husband and I would take it in turns to go to bed for a few hours in the early days and it helped us both get some sleep. You never know, you may have a baby who is a wonderful sleeper. We weren’t quite so lucky, so this helped us get by.

20. Dress your baby in easy clothes as it will save energy and stress. My son lived in baby grows (also known as sleep suits or rompers) until he was about 6 months old. You will be doing a zillion nappy changes, so make life easy. (Thank you to my sister for this tip!)

21. Set up “stations” in the kitchen and bathroom for when you need to move about, to make life easy for yourself. I put a bouncy chair in each so I had somewhere safe to put my baby down.

22. Remember you’re doing well if you manage to get dressed and brush your teeth before the end of the day!

23. Take snaps on your phone to record baby “moments” and create memories. I was given a memory book to complete, and I’m sad to say I just didn’t have the energy to fill it in. I’m so glad I took loads of photos and videos though.

24. Don’t worry about attending mum and baby groups if you don’t have the energy. I didn’t! I used to worry my son was missing out, until I realized that these are mainly an opportunity for mums to have a chat. Your baby just wants to spend time with you in those early months.

25. Have a friend or relative you keep in contact with for times when you do need to chat or ask advice. It can feel lonely trying to manage with a baby when you can’t get out easily, so it’s good to have someone to talk things through with. Mine was my sister.

26. Give yourself a massive pat on the back for getting through each day. It’s really is a huge achievement!

I hope you found these useful. I also try to remember that everything is just a “phase.” The sleepless nights don’t last forever, and once your baby is older, it’s not quite so exhausting. Try and enjoy each precious moment, as it all goes so very quickly. You’ll find your way of coping and managing things. I know I found an inner strength that I didn’t even know I had.

Getty Image by jacoblund

Originally published: June 10, 2018
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