hello,

i'm not a parent yet, but i'm seriously considering becoming one in the next couple of years. i have moderate ME/CFIDS, and i'm wondering if there's anyone out there with advice who has been through it themselves?

i'm wondering how i would be able to cope. i have a supportive husband, but obviously he would have to work full time. we are not poor, but we certainly couldn't afford nannys and the like. we live near both of our sets of parents, but i wouldn't want to ask them to do very much - especially not my parents, who simply have too much to do on their own account.

are there any books anyone can recommend about parenting with fatigue-based disabilities?

Thanks

Penni

-- Anonymous, June 10, 2003

Answers

Hi!

I have ME/CFS and I have a wonderful 2 year old son.

No-one can really predict the effect having a baby will have on you. Some women with ME have said that their symptoms improved during pregnancy, others have felt worse. Some women report relapsing after the birth whilst others sail through without any problems. I have managed without too much impact on my health but I have had a lot of support. My husband spent the first 3 weeks at home with us and I was on Direct Payments so I had people to do the housework for me. All I had to do was concentrate on looking after myself and my baby.

The advice I would give is to get plenty of support incase you need it and do your homework. If you are on any medication, even herbal remedies or vitamin supplements it's worth checking with a doctor or pharmacist if they are safe to take in pregnancy.

There used to be a wonderful website called Pregnet run by Action For ME but it closed down recently. It had lots of good information from doctors, nurses and parents about ME, pregnancy and parenting. If you contact AFME and ask they might be able to help you.

There is a website called ME/CFS Parents you might like to visit, www.mecfsparents.org.uk. You can chat there with ME parents and would-be parents on the message board there.

Having a baby is hard work, and having ME can make it a lot harder but it is possible!

Clair

-- Anonymous, June 11, 2003

Hello Penni,

I have a two year old Son who is very lively and exhausting to say the least. I didn,t know I had ME before I had him but was made moderate/severe ME after I had him. Live has been simply hell - mainly because I didn't know what was wrong with me and went on the NHS roundabout. My Son was a constant feeder and slept very little (the opposite of what the books tell you)with no help from anyone. However, my lad goes to nursery 4 days a week and my mum helps out 2.5 days - plus I have a miricle husband. Things are getting a little easier now as my child is now two and he has brought us the most happyness you can't imagine. All I can suggest is if you do your homework into childcare/help and support before you get pregnant it will give your child the best start. There is no way I would put anyone off if it is what they really want. Good luck.

-- Anonymous, August 14, 2003

I am 6 months through my pregnancy, I have chrnoic CFS/ME and we decided that as i was the best i had been for a long time to give pregnacy a go.

I have had bad morning sickness all the way through it, but lukily my husband is my full time carer, so he has been able to do a lot of sorting out etc after me. We also use the Direct Payment scheme and have a VERY supportive social worker.

My GP is not clued up on CFS/ME and the local hospital needed to be sent a copy of the DOH guidlines before they acted on my fears etc, but since then they have been great!

I would say.. get as much help as you can as soon as you can. Eat as well as you can during your pregnancy... If you dont want to eat healthy.. just eat. (I coudnt face anyfruit and veg for the first five months of my pregnancy.. No idea why not.. i normally live on the stuff) Use online services as much as you can.. that includes pricing stuff and ordering it, for when baby arrives.. Budget, so that you dont need to go for big shopping sprees in the last three months.. when you will be more tired.. We only need to go out to get a pram now.. we know where we are getting everything else from...and how much it is.. so all we need to do is use the internet.

Hope this helps.. CFS/ME and pregnancy has been hard for me... But feeling the baby kick makes it all worth it ;)

Vicki xx

-- Anonymous, March 27, 2004