Looking after a baby is hard enough normally, let alone when you have ME/CFS. I have tried to come up with a few things that might make life just that little bit easier.

Feeding

First of all I would recommend breastfeeding over bottle feeding, not only because of all the health and emotional benefits, but also because breastfeeding requires none of the preparation that bottle feeding does. There has been no research showing that ME/CFS can be passed on through breastfeeding, in fact breastfeeding is far less likely to pass on ME/CFS than the placenta is, if ME/CFS is transferable (which is not believed to be the case).

Next if you are breastfeeding I recommend you use a pillow or cushion of some description. It doesn't have to be a specific nursing pillow (which is often overpriced) just so long as it is comfortable to use, deep enough to bring baby level with your breasts and has a washable cover. I would recommend using a "V" shaped pillow; I bought mine for just less than £10 for the pillow and a cover. I also found this pillow useful when Adrian started sitting up, as with it behind him he has something soft to fall on when he lost his balance.

If you are likely to be out and about in places that don't have readily available pillows (e.g. town centers) you might want to find an inflatable pillow of some description to help support your baby on. Alternatively you could use the changing bag that you are bound to have with you.

For night feeds or when you are feeling very tired you might find it easier to breastfeed your baby lying down. This is a very relaxing position which puts no strain on your back and you can prop your baby onto its side using rolled up blankets or pillows to allow you to rest your arms too.

Changing

If you live in a house with more than one level and find it hard work going up and down stairs I would suggest buying two sets of changing equipment (changing mat, bin and possibly a box to store nappies and wipes in if you want). That way you won't need to journey so far to change your baby's nappy. Remember to ensure you have enough nappies and wipes in both changing stations. Even if you are usually able to go up and downstairs easily it may be worth getting two sets for times when you are feeling worse. If money is tight you could always use your travel changing mat in one of the stations (though most travel mats are considerably smaller, making wee and poo on the carpet a higher probability).

If you are using water and cotton wool or cloth wipes then keeping some warm water in a thermos flask near the changing mat will save you journeys to a tap.

Bath time

If you can't lift heavy objects then don't bother with a baby bath, once they have water in they become very heavy to move. I have one and struggled to carry it to baby's room every night for his evening wash (no room in bathroom to wash him in it). Instead look at buying one of the bath seats or supports that you can use in your normal bath, there are lots available, ones that float, hammocks, and plastic ones. Just make sure you get one that's age appropriate!

People with back problems may find it easier to bathe their baby in the sink while it’s still small enough to prevent bending over, just be wary of the taps, and make sure you run a little cold water last so the taps aren't hot if baby touches them.

You could consider going in the bath with your baby if you have trouble lifting a baby bath or kneeling and reaching over the normal bath. Though make sure someone is available to pass you your baby once you get in and take it from you when it wants to get out. Babies that dislike baths often enjoy them more when someone is in the bath with them.

A slip proof mat will also be useful as a less slippery baby will cause less arm strain!

Sleeping

In the first few months you are not likely to want to be far from your baby, and having somewhere that it can sleep downstairs as well as upstairs is a lot easier than going up to check on him/her every time you hear a whimper (babies can make quite a bit of noise in their sleep!). So I would recommend having a carry cot, or similar that can be moved to which ever room you want during the day.

Currently it is recommended that your baby sleeps in your room for the first six months to reduce the risk of cot death, but this also makes practical sense for sufferers of ME/CFS. Ideally you want baby to be in arms reach so you can pick it up and feed it without even getting out of bed at night. You can buy cots specially designed to go on the edge of your bed (called bedside cots) where one side can be removed for easy access, this would make it easier to get to baby, and makes practical sense if you are likely to want baby next to you once its outgrown its carry cot/Moses basket. Alternatively you might consider having baby in bed with you, some people resort to this anyway even if they didn't intend it as baby's often sleep better next to their mums. If you do bed share make sure that your baby can't roll out of bed, and don't share if you have taken sleeping pills, been drinking or if you smoke.

For daytime naps when you baby is a little older I found a bouncy seat very useful, you can buy ones that self vibrate which sounds like a very good idea, my one I had to bounce myself and it was quite tiring on the legs. The more expensive end of this market is the mechanical swings, which are supposedly very good for getting babies to sleep or for soothing colicky babies, but they cost around £80- £100 and are quite bulky.

Out and About

If your unlikely to go out of the house often when the baby is very small it may be worth skipping the notion of a pram and looking at pushchairs that you can use from birth. Many pushchairs now have adjustable seats so that you can make them reclining (though only a few will go completely flat), and you will get a lot more use out of something that will last you around 3 years rather than a few months. Pushchairs are also lighter weight than the pram alternative, which will make them easier to push, plus they are a lot cheaper.

Travel systems are a great combination of pram, pushchair and car seat. The car seat can be placed on the pushchair to make a pram and allow you to move baby to and from car without waking them up. The pushchair can be used on it's own when the baby has outgrown the car seat and some are quite lightweight and foldable so they are easy to put in the car.
Carrying a baby in a sling or baby carrier is an awful lot easier than in your arms as the weight is distributed better , but do bare in mind that you will be carrying the weight of your baby, so don't expect to be able to use it for a great length of time. They are not just for country walks, being very useful for around the house, especially if you use walking aids, have bad balance or a colicky baby that needs holding and walking around. Baby slings are also invaluable if you use a wheelchair. Try and avoid slings and carriers which support the baby’s weight at the crotch, as this can cause spinal stress, instead look for ones that use a seated or lying down position.

First stage car seats (for up to 9kg - or 13 months) are designed to be carried around, but when they have a baby in them they become very heavy, and I usually leave my husband to do the carrying unless it’s a short distance (and my babies only 6kg at the moment). If you do want the portability of one then fine, but you can get car seats that work for this age group and up to 3 or 4 years, saving a lot of money in the long run. We wanted one of these car seats but unfortunately they wouldn't fit in our fiesta so we had to buy the first stage seat.

Looking after you

Try to rest or sleep when your baby sleeps, leave housework or do only the most essential tasks. If you’re breastfeeding you can give feeds lying down in bed to add to the amount of rest you get.
Accept all offers of help you get, if people want to know how to help suggest them bringing over a ready cooked meal or doing some laundry for you.

Ask your partner or a family member to take the baby off your hands for a short time to allow you some time for yourself. It’s worth making sure baby is fed before you hand it over else you may find yourself presented with a hungry crying baby while you’re still in the bath! Once breastfeeding is established (at about 6 weeks) you may like to express some milk so that you can leave baby with someone for slightly longer time stretches without worrying.

Ask your health visitor if it would be possible to have home visits to weigh your baby and for chats/support.

Other

If you have any needs that cannot be met by general purpose products REMAP (www.remap.org.uk) is a charity which can help make or adapt equipment for you (such as an infant carrier for a wheelchair).

Thanks to Jane Shaw and Clair Coult for some of these suggestions. If anyone has any more tips to add to this collection please let me know!

Written by Sally Lambert, ME/CFS Parents.