Written by Yvette Keitley

Feeling broody, but worrying how you'll cope with pregnancy, labour and motherhood? In the second in her series on having children Yvette Keitley addresses some common concerns raised by mums-to-be with ME.

After making the decision to start a family, the next big step is actually conceiving and then coping with pregnancy and birth. Many people with ME find even the mere thought of pregnancy exhausting - after all, your body is doing the very strenuous job of creating a new life.

My personal experience of pregnancy and birth is a very positive one. Thankfully, I felt better during the pregnancy, but not all women do.

Lets do it

Any way of making intercourse less strenuous, but still pleasurable, should be considered. Probably the best way is the 'spoons' position where the woman lies on her side and her partner lies behind her, enabling easy and comfortable penetration. It sounds complicated, but practice makes perfect!

If your ME is severe, then it might be worth buying an ovulation kit. Simple to use, they measure the hormone levels in your urine to detect when you are ovulating. If you know when the best time to conceive is, this will allow you to use energy for lovemaking when it's most likely to help you fall pregnant.

It's a good idea to have a chat with your GP before you try to conceive to check on any contraindications of drugs you may be taking. Plus, you will need to organise folic acid supplements to cut down your chances of having a spina bifida baby.

One thing that puts some people with M.E. off starting a family is the concern that their illness might be a risk to the baby. But as Dr Charles Shepherd, author of Living With M.E. writes, 'There is no evidence that women with M.E. are more likely to have a miscarriage. Neither are there any reliable reports of such women producing anything other than perfectly normal healthy babies. There is however, a small but theoretical risk of passing a persisting viral infection across the placenta. Consequently it may be better to err on the side of caution if you are continuing to experience infective-type symptoms.'

Countdown

Just because you're pregnant and have M.E. doesn't mean you are facing a disaster. You will just need more help, love and understanding than the average mother-to-be. It's important to inform your GP, midwife and consultant about the way M.E. affects you as early as possible, so that extra care can be arranged if possible.

The best piece of advice anyone gave me while I was pregnant was: Let your body get as much rest as possible now, because once the baby is born, there won't be much chance to take a kip when you want it.

Eating a well-balance diet is also important to give your body the extra energy and nutrients it needs to create a new life.

Be Prepared

Jessica, who had her daughter Holly 13 months ago, says, 'A few weeks before Holly was born I had a massive cooking session. My partner and mum helped me make up loads of shepherd's pies, soups and lasagne which I froze. Once Holly was born we had lots of meals ready. That way I could rest and devote my time and energy to Holly.'

Some women find their M.E. goes into remission while pregnant, probably because high levels of hormones suppress the immune system to prevent rejection of the foetus. I know I felt my best while I was expecting Alex. I was tired, but without that horrible M.E. - type exhaustion. I could definitely differentiate between the two types of tiredness.

A recent survey of 72 women with M.E. and fibromyalgia found that during first pregnancies, one third of women felt better. Unfortunately, a small amount of women find that pregnancy and M.E. don't mix and experience a deterioration in their health.

This was the case for joanne, who says, 'During most of my pregnancy, I was very exhausted and slept through many afternoons. I was so unwell that I couldn't go to the parent-craft classes, and I have to say that my midwife was fairly uninterested in M.E. so I took to reading as much as I could. I dreaded all the hospital appointments as I felt too ill to attend, but in fact they went quickly and smoothly and I found the staff to be kind and reassuring.'

Private vs. NHS midwives

Another option, if you can afford it, is to hire an independent midwife. One member, who has severe M.E., paid a total of £2000 to use a private midwife who was able to spend more time with her, addressing individual concerns and problems while acting as her advocate. Too ill to attend regular hospital appointments, this member was lucky enough to have a consultant who agreed to talk with her on the phone instead - 10/10 for him! However she says it's vital that you do make it to scans to check the baby's progress.

Private midwifes mainly deal with home births. Jenny wanted to feel in control of her environment and for it to be quiet, but she feared a home birth in case of complications. Her midwife contacted the head of midwifery at the local hospital to get her 'on side', and due to Jenny's illness, managed to get her a private side room in the hospital.

Dietary problems also make going into hospital extra stressful for some with M.E., as as well as earplugs and an eye mask, do have foods you can tolerate to hand.

Many people with M.E. who are drug intolerant have found that alternative remedies can be used to treat a wide range of common conditions during pregnancy. Acupuncture, herbalism, aromatherapy, and some forms of massage have been used beneficially by expectant women to alleviate their symptoms.

Even though holistic therapies can take their time to work, they aim to address the cause and heal the whole body, rather than suppressing symptoms. These alternative practices can often be included as pain relief during labour Or if you wish to use a birthing pool for this purpose, notify your midwife early on in your pregnancy to see if this can be arranged.

Pain Relief

As I didn't know what effect pain relief drugs would have on my illness, I decided to steer clear of anything I hadn't had before. In the end I used just one paracetamol and a TENS machine, which works with your body's natural electrical impulses to block the pain. Towards the end of my 16-hour labour I had two puffs of gas and air, but didn't like the floaty sensation it gave me, and threw the mouthpiece across the room!

Visualisation, breathing techniques and relaxation are good skills to learn if you can manage it. They can help you turn the negativity of pain into a positive feeling, getting you closer to delivering your baby. Plus, the more relaxed you are, the easier it is for your body to dilate the cervix.

A popular option among women with M.E. is an epidural, where an anaesthetic is injected into the spinal canal, allowing your body to labour without the exhaustion of pain. This way you can save your energy for the pushing and delivery. However , it does mean that you can't move around, and it blocks all sensation from the waist downwards.

Labour Day

If you can manage it, any position during labour that allows gravity to help is ideal to help reduce labour time. Some people use a birthing ball (a big bouncy gym ball) to sit on while making gentle rocking movements. This eases pain and also helps the baby's head to descend. If you need to lie down, be sure to lie on your left side in the recovery position, surrounding yourself with pillows or beanbags to get comfortable.

For women with severe M.E. or those who feel that they couldn't cope with labour at all, a caesarean section is worth considering. An epidural is preferable over general anaesthesia as this provides a quicker recovery time. However, you need to weigh up the benefits of avoiding a lengthy labour against the recovery time of abdominal surgery.

Michelle felt she was too weak to go through a natural labour so opted for an epidural and caesarean. She explains: ' I was worried about the effects of the epidural, but it couldn't have been better. I was awake the whole time and felt no pain. I'm glad I chose to have a caesarean, as I think my M.E. would have been a lot worse after a natural birth.'

Ultimately, writing a 'birth plan' for your midwife long before you go into labour is the best option. Keep it straightforward so it can be read quickly. As well as including which drugs you prefer, mention about having M.E. and the ways it might affect your labour, birth and recovery period. This might include drug sensitivity, muscle fatigue and possibly the need for an assisted delivery (forceps or suction cap) if you get too tired. A birth plan helps others know what you would prefer to happen if things did go slightly off track.

Ask for help

One the baby has arrived, you will not only be on cloud nine, but also very exhausted! To limit the risk of relapse, ask your midwife if you can have a single room on the ward away from the noise of other babies. Explain that you may need extra nursing support during your stay.

If a single room isn't available, make sure there will be support available at home, so you can have a full nights sleep and plenty of rest periods on your return.

Anna, who gave birth to her son Jacob two years ago, felt guilty for taking offers of help. 'I wanted to be a super-mum; breast-feeding, nappy changing, washing ironing and cooking, but in reality my M.E. was wiping me out. All I could manage to do for the first three weeks was lie in bed with Jacob and feed hi every two hours. I felt awful that everyone else was running around after us. I'm glad I did give in though - I thin I would have had a major relapse if not.'

No-one, especially your newborn, will hold it against you if the ironing is piling up and the pots are left in the sink!

As you and your new baby adjust to life together you will be able to do more things, but during the first few weeks, take time to get to know one another. Everyone agrees that your health is less likely to suffer if there is help on hand from your partner or family.

Worth it in the end

Pregnancy and childbirth, although painful and exhausting, are amazing experiences. Some women with M.E. find that they are in complete awe of their body creating a new life - doing something right and good for a change!

Others say that it makes them feel 'normal' - after all, nearly every pregnant woman suffers from morning sickness, piles and varicose veins; having M.E. doesn't make you any different in that sense, though you might be surprised at the increased level of support and compassion people show you while you are pregnant.

Further Information

www.mecfsparents.org.uk - Contains features on pregnancy and parenting with M.E.

www.survey2002.org.uk - results of the CFS/M.E. pregnancy survey mentioned above, including hundreds of quotes vividly describing CFS women's experiences of pregnancy, childbirth and looking after their children

www.wellbeing.org.uk - reputable charity offering a 'virtual pamphlet rack' with detailed leaflets on subjects including infertility, pregnancy nutrition, coping with loss through miscarriage and post-natal depression

Independent Midwives Association - provides help on finding a private midwife for one-to-one support. Visit www.independentmidwives.org.uk or call tel.01483 821104

Taken with permission from the Action for ME's February 2004 InterAction.