CFS & pregnancy/ labour

[Vanilla_milkshake]

Hi everyone,

I have CFS, although undiagnosed. My pregnancy has been debilitating, and I have had to fight every step of the way to get support. I have 6 weeks till due date, and still no birth plan. Appts with senior team members are between 1-3 weeks away, so could be that long before I find out my options.

I would love to hear from those of you with any experience of child birth with severe CFS. Particularly symptoms like paralysis, and being wheelchair bound. Ideas on what helped for you will maybe help me, and your stories may give me an idea of what to expect.

For moral support, I would also love to hear about your experiences through pregnancy with CFS, and how it affected your mental health.

Thanks for taking the time.

[Loopy65]

Hi

I got CFS at 22 and had my first daughter when I was 36 (second at 39).

I found pregnancy absolutely awful!

I had elective c sections with both girls. There was no way I would manage labour let alone the fact that it could occur at a random time (aka middle of the night!) so I would have lost a lot of rest time and it would have been a horrible start to motherhood! (My nightmare scenario was that I’d be in labour for hours and unable to have the energy to push so then they’d have to do an emergency c section so I’d have had the exhaustion and surgery recovery to deal with!!)

I had to be assertive with the surgeon about that but the midwives totally backed me up.

Once the decision was made everyone was lovely.

Once C section was done I was in hospital for 6 days and that helped too as a lot of the baby care was done for me (as long as there was someone available!). With my second I was much more chilled so when they asked if I’d like her in the nursery at night and they’d bring her for feeding I jumped at the chance and got some decent rest while in hospital!!

Don’t be afraid to ask for help when/if you need it.

Incidentally I had to switch to bottle feeding as (we assumed because of the CFS) my milk didn’t arrive but that was fine too as it meant hubby could do middle of the night feeds which, again, made a massive difference to my health.

I actually felt BETTER once munchkin was born - I was the only new mum who had more energy after birthing than before!! It was quite nice to be able to be in that position for a change!!

Regarding mental health - this isn’t really CFS related but, as I was prone to depression, I took a hormone pessary for three months (slow taper down after too) which calmed all the chaos hormones down and made the massive hormone overload much, much better. Might be worth a mention to your midwife. You start them straight away and it doesn’t affect your milk at all.

Hope some of this ramble is helpful!!

[Vanilla_milkshake in reply to Loopy65]

Omg so helpful 😍 I am currently fighting with my obstetrician and midwives to get a birth plan sorted, and we only have 6 weeks to go! We've been talking about this for months and it's always consult another advisor, that then has to be chased. Or referrals to services being declined without me being told.

I've been having a really hard time worrying about the birth plan - for exactly what you've said! How do you look after a new baby when you're paralysed with fatigue?! They've seen some of my condition and have allowed for my partner to visit for as long as he needs to, to look after baby when I can't so that's a huge relief. But during pregnancy I've been getting so tired that I struggle to breathe, after much less exertion than what labour is supposed to be. I have everything crossed that after birth I will regain some energy like you have, although I have to prepare for the worst of course. When you had your c section, what was recovery like for you? I am in a wheelchair when I go out and I've been told that that can complicate your recovery.

I will definitely ask the midwife about pessary, and see what she says.

Thanks so much for this, I have felt as though I must be the only person to go through this. The nurses and doctors seem to have never seen it before, or if they have, much less severe, and yet I've had to fight to get any support. It's fantastic to know that not only did you get through it, but were able to manage afterwards! Really hope inspiring, thank you xx

[Loopy65 in reply to Vanilla_milkshake]

Awww thanks for your thanks .. really glad it helped a bit.

The problem is, as with most things and CFS/ME, we have to try and be really assertive in our interaction with the medical profession and it’s REALLY HARD! - especially as the very nature of CFS/ME is exhaustion and brain fog stuff!!

I didn’t have any trouble with the recovery from the C section and I am absolutely positive it was better than it would have been from labour!! Also the advantage of it was that I was in hospital for 6 days whereas with labour I’d have been in 2 max I suspect. I’m not in a wheelchair but I do move very little during the day and the one bit that I remember being hard was getting out of a chair.

I’m wondering if you have a good GP hidden somewhere who may be able to help with the ‘persuassion’ at all? .. it’s horrible that you have to try and force their hands and I’m disappointed that in the 20 years since I had my first daughter very little seems to have changed!

It’s so hard so have to spell out your ‘disabilities’ to people and frustrating that they just don’t get it.

The fact that utter exhaustion is a major factor in CFS/ME makes the natural childbirth route even harder to contemplate. You have mobility issues too and you mentioned paralysis - what on earth are these people thinking!?!?!?!

It may also make a difference to tell them that you don’t ‘want’ a c-section! It’s because your physical challenges will make labour impossible! .. if I sat and thought about it I decided that, randomly, in the middle of the night if labour started I would be able to cope for a couple of hours and would then have a crash so big that I’d not be able to hold, let alone tend to, my newborn baby! .. it’s not a choice for convenience it’s a choice from having thought things through in a logical fashion. For me, there was no alternative.

Hope you can get somewhere soon with it all .. I promise it’s all worth it .. when you have that cute little bundle out it’s amazing. Words can not describe it 🙂

[Vanilla_milkshake in reply to Loopy65]

Gosh yeah - you go in there and you can barely remember what they're saying to you, let alone what you need. Since my partner can't come in with me, I've started writing the doctor notes before I go in, so the message gets across!

Isn't it strange that recovery from surgery is easier than from natural labour 😅 i have found my god send gp after 3 years of changing, and he is fighting with me 💪

The paralysis part used to only happen at the beginning when I was really bad, and still learning how to deal with the fatigue. Unfortunately it came back strong at 3months+. I'm really hoping that it's caused by baby and when he is born I will begin to recover to where I had got to. Definitely interesting to hear drs talking about natural birth with Steve while I'm sat there fully immobile, and all I've done is be wheeled from the car to the consultants room 😅 it will be funny when this is all over.

After this conversation I feel MUCH more confident about having a c section. I will discuss it very seriously with my midwife this week and I think she will agree with me. I will tell her that I found someone with symptoms similar to mine who had a c section and was happy as it enabled her to become well faster after the birth! I hope you don't mind. That will really strengthen my case.

Thank you. Once labour has been planned, I will be able to look forward to the birth! Aside from the worry I'm so excited. You've been such an inspiration, thank you xx

[Loopy65 in reply to Vanilla_milkshake]

Awww more than happy to help! Let me know if there’s anything else! Also, weirdly, my other half is ‘Steve’ too!

[Vanilla_milkshake in reply to Loopy65]

Thanks 🙂 haha another thing we have in common! Xx