Written by Yvette Keitley

Parenting with ME: Definitely not easy, but rewardingly achievable - if you have enough support. Young mother Yvette Keitley offers advice on caring for a baby without breaking the energy bank.

Since my son Alex was born nearly three years ago, my ME has been through many different phases. While I was pregnant I felt relatively well, in contrast to the first six weeks after the birth, when I was extremely ill and exhausted; but now, happily, life is becoming easier again. In the final part in my series on pregnancy and motherhood, I will highlight many of the problems mothers with ME encounter during those precious early years and share idea's for tackling them.

Life after birth

Obviously, the amount of energy expending by giving birth is vast and plenty of time to recover is vital. For at least the first ten days try to ensure that your partner, mum, sister or a reliable friend is both available and comfortable with all aspects of caring for a newborn - including changing nappies and cleaning up baby sick! After those ten days, if you feel less exhausted, don't let your 'baby helper' disappear immediately; instead allow yourself time to gradually get used to your new family and routine.

If your partner can't take too much parental leave from work and finances permit, it may be worth hiring a full-time carer to help you adjust in the first few weeks.

Once you've got past the initial post natal period and your baby helper has gone, ask your husband, partner or carer if they'll make up your lunch either the night before or in the morning. This avoids you wasting valuable energy on making food when you need to be feeding, changing and caring for the baby. This also applies to making up baby's bottles if you decide to use formula milk. The more energy-consuming tasks you can delegate to someone else the better.

Plan ahead

35-year-old Alice has had ME for five years and is mum to Jack (one) and Molly (seven). She advises all new parents to plan their feeding and changing routing long before the baby arrives. "Keep a pack of nappies and wipes in each room, or upstairs and downstairs, then you don't have to move if you feel awful. Consider investing in a small portable fridge to keep in the main room where you will be with baby for formula/expressed milk, and high energy snacks for you. Again, this saves you leaving the one room if need be."

Another energy-saving tip I found when Alex was starting on solid food was to keep a highchair (or lowchair with tray attached) in each room that we ate in. We had a highchair for use in the dinning room when I had enough energy to sit at the table, and a low chair in the living room for when I needed to rest on the sofa so Alex could sit by me and eat. I kept a light hand held vacuum nearby to pick up crumbs afterwards.

It might seem a strange idea, but explaining to your baby when you need to rest may help you in the long term. Angela, who is mum to 18 month old Erin, always told her when she was feeling too tired. ' At first it seemed pointless as she didn't understand, but I persevered and eventually around eight months she seemed to pick up on the tone of my voice when I was ill and for short periods understood that I needed her to be quieter.'

Lower your standards

Exhausting tasks such as bathing should be left for days when you feel stronger and there is someone to help. Daily baths are not needed even though it may seem odd not to be doing as other mothers do. Personally, I often found it was easier to get in the bath with Alex. I wasn't leaning over, straining back and leg muscles, and my son was easier to hold and control when I was on the same level. The wearing jobs of lifting, drying and dressing baby can then hopefully be taken on by your partner or carer while you have a well-deserved soak.

If you need a rest and want your toddler with you then a safety gate can keep them secure with you in one room. A travel cot is also useful as this again keeps your baby in one place and allows them to fall asleep without you having to carry them upstairs to bed.

Make use of your child's willingness to help from the start. 40-year-old Maggie, who's had ME for seven years is especially proud of her three-year-old: "Patrick was always a helpful and placid child. When I felt well enough to do some washing he would try to join in, so now he's a bit older I ask him to empty the washing machine and load the wet clothes into the tumble dryer for me. I sit and supervise, but it saves my arm muscles and gives him a sense of responsibility as well as learning how to do the laundry!"

Ask for help

If you suffer from M.E. severely and you can afford it, consider sending your child to a private nursery. Even half a day there can give you enough of a break to catch up on some rest, while enabling your child to be independent and learn about sharing and playing with others. If you can't afford a nursery, ask if grandparents can have the child one night a week.

Should you find yourself in the position of being a single parent with M.E. then support from other people is even more vital. Priscilla found herself alone with Isabella, now two, unexpectedly. "I find parenthood with M.E. hard of course, but such a joy as well," she says. "My advice to others would be to get as much practical help as possible, accept any offers of help and don't be afraid to ask for what you need." Another port of call for any parent with M.E. is Social Services, who may be able to provide assistance with household chores such as washing, ironing and cleaning; just ask you local department for a needs assessment.

Find ways to cut corners

Another way of saving energy is to order your weekly shopping over the internet. Most of the large supermarkets now have an online or telephone ordering facility. Basically, any way you can find to save energy is a bonus for you and your growing child. Many parents with M.E. have a sense of guilt that they don't do enough things with their child like running around or that because of their illness the child doesn't spend as much time with them.

The best thing to remember in this situation is that we can make up for our energy shortage in many other ways. I read a lot to Alex and know for certain that he's more confident, helpful and sympathetic because of my situation, as well as being a real bookworm. Even though he may have to spend more time being cared for by other people, when Alex hurts himself the first person he cries for is "Mummy!" so I guess I must be doing something right.

Useful Information

Disability, Pregnancy and Parenthood International provides a personal and confidential enquiry service and produces a number of information sheets. Visit www.dppi.org.uk or tel 0800 018 4730

Help from Social Services - They Said What? is a guide to disabled parents' right for support from Social Services available from the Disabled Parents Network (see below).

The Disabled Parents Network has a contact register and can put parents and would-be parents in touch with each other. Visit www.disabledparentsnetwork.org.uk or tel 0870 241 0450

www.mecfsparents.org.uk is a website dedicated to parents with ME offering a message board and helpful articles.

www.mama.org.uk 'Meet A Mum' Association offering support to lonely and isolated mothers.

Home-Start offers support to stressed families with children under five. Visit www.home-start.org.uk or tel 0800 068 6368

The Association For Post-Natal Illness provides information and telephone councelling from volunteers with personal experience of post-natal illness. Visit www.apni.org.uk or tel 020 7386 0868

Taken with permission from the Action for ME's November 2004 edition of InterAction.