Pregnancy and ME/CFS

[Rw057]

We're newly married and now thinking about trying for a baby. We've done all our research and know what's expected, the only hang up is that I've got ME. It can be crippling and it can be blimin frustrating at times. I do however feel that ME sufferers are constantly judged and patronised when it comes to whether or not to have children.

I would like to ask fellow ME/CFS (or other conditions!) what their experiences have been and what challenges they've faced (if any!)?

I understand my illness well and have a good support network in place. I may not always be able to do the things other mums do but I'm okay with that, it's just going to be a bit of a different (but hopefully amazing!) journey!

Hi OP! Not quite the same, but my DH has suffered with ME/CFS for over 10 years now - he's technically in "remission" and is mostly recovered, but still has days where he's exhausted from it. DD was born when he was about eight years into his official diagnosis.

DD is 4 now, but when she was a baby I did most of (all of!) the night wakings etc, partly because DH had to get up for work, and partly because I didn't want him to be more tired than he already was! He was fine with the day to day stuff when he was at home (so at weekends), and as she got bigger he was getting better, so was more able to cope with her being mobile and so on.

We were both a bit worried before she was born, with whether or not he would cope with it all. To be honest, he coped better than I did in the early days! We're having DC2 in a few weeks and aren't so worried this time around, but as I said he is mostly recovered now.

Is your ME getting better, or is it likely to? DH was very lucky - when he was first diagnosed he was extremely unwell, there's no way we could've had kids when he was in the early stages. They gave him 10 years to recover and he had a relapse after 2 or 3 years (so restarting the 10 years again!), but slowly got better. Now it's not really an issue anymore, and we're just keeping everything crossed that he really has recovered. Obviously he isn't the one going through pregnancy/birth, but it's still tiring being a Dad!

Having a good support network (especially a supportive DP) is a very good start. And don't worry about being able to do "what other Mums do" because we're all different. If you've got family and friends, and they eventually go to preschool and then school, they get a wide variety of experiences through that - it doesn't all have to come from you. Best of luck to you

Hi op, I'd say realistically write off 9 months of your life for the pregnancy! Honestly I didn't think I could get much more exhausted but pregnant with ME is a whole new level. I just move when I have to and bed rest whenever I can.

I agree with @SomeKnobend. For me, it's made everything worse. I am 38 weeks now. Creating another human being is exhausting for a healthy woman as is morning sickness and not being able to sleep... add that to being chronically ill and it's extremely hard.

It does vary though. I've had M.E. for 27 years and gained other health problems during that time. I know other women who developed M.E. later and who found pregnancy and/or breastfeeding made them a lot better. Then I know others like me who stayed the same or got worse. It's a bit like the roulette wheel...

I think if you are realistic then if things do not get worse, or perhaps you are lucky and are one of the ones who finds improvement, then at least you are prepared either way. That's how I view it for myself.

Hi, I have ME and am 27 weeks pregnant. Like you I had concerns about how it would impact the pregnancy/birth and life afterwards.
In terms of the pregnancy it’s gone so much better than I thought so far!
I’d read that it’s a bit pot luck what’ll happen, some people improve, some get worse etc. The first trimester was hard, but the second has been a dream!
In the first I had a flare up of the lymph node glands in my groin which made me lethargic, run down and miserable on top of the pregnancy nausea. They were enlarged for so long that I was referred for a scan on them at the hospital but all was fine. I think my body had just gone into shock!
I had about 6 weeks off sick as I was useless through all that. But then at about 14 weeks pregnant I started getting more energy, felt better and apart from a bit of back pain and painful trapped wind I felt great. My normal pacing was going out of the window as I couldn’t sit still and waste this new energy supply!

The third trimester is now upon me and my bump has made itself known. I feel a bit more tired but I genuinely think it’s the extra weight I’m carrying and the heat rather than the ME.

It sounds to me like you’ve both thought carefully about it, are realistic about the issues you might experience and have a good support system. Many people without a health condition don’t have half of that so I’d say you’re off to a wonderful start.

There are some great resources online too for those with ME. There is a website called Phoenix Rising where you can chat to others with the condition. Also there is a group called The Hummingbirds Foundation for ME who have a hospital notes template you can amend and add to your notes so any caregivers you interact with can see your specific ME triggers/issues at a glance. www.hfme.org/hospitalandcarernotes.htm

Thanks for your replys!
So we're definitely going for it!
It's good to hear other people's experiences, we know it's going to be tough (possibly an understatement!).
I suffer moderate to severe, but mostly moderately if I pace myself well. I can push myself if I have to, have a good family support network nearby and a very supportive DH and dog (who I've trained to be an (almost) assistance dog! Lol. I don't think I'd go for it if I didn't personally. I don't think putting it off 'until' I get better us an option as it's been the same for about 4years, having suffered with lyme disease for 4 years before that (possibly still have lyme but no way of knowing!).
I've read some scary things about congenital ME but I've not found any scientific evidence for this so it won't influence us.
I suppose the other big worry is how we'll cope financially, I don't work and although my DH is in a good job, I'm worried it might not be enough! Is there support available if I'm not working?
Thanks again!
Xxx

I'm not sure if you qualify for any sort of maternity allowance - there's a calculator here where you can enter your details.

Whether you work or not, you get child benefit of £20.70/week for your first child. It's not a lot but it's better than nothing. It might be worth reading around that section of the government website to see if you can find anything else, but I'm fairly sure if you don't qualify for benefits normally then you still won't, unfortunately.

Good luck with your pregnancy

Thanks TinyTerror1, every little helps! I do receive ESA and hopefully soon PIP as I've qualified for it for 3-4years and not claimed it yet. I do hope you get back to work too in Autumn. Going to try going self employed in a month or two so I can manage my own 'sick days' . It's near impossible to hold down any job with this illness as you never really know when you'll get a flare up and most employers are not very understanding sadly (ahem Edinburgh Leisure!).

Thank you Flamingo84 for your tips and links, and for believing in us! I do hope I'm one of the sufferers that get amazingly better during pregnancy but I know now that I can manage whatever happens!
Fingers crossed it does happen.
Thanks again!
Xx