Fibromyalgia and ME/CFS

You have to be sure to care for your needs and not over do it which is so hard with a newborn.

A lot of rest, if you have people around you that can help absolutely take it! My partner is my carer so I’m quite lucky that he’s always around to help

@Katrina I just feel so stressed out and like I shouldn’t have had her 😞

Rest plenty! Most newborns do is sleep, eat and poop. They don’t really play yet and they don’t really move. I coslept with my baby and still do (he’s 7 months now) it was the easiest way for me to get sleep and recover immediately. Do whatever works best for you and is easiest for you.

I have ME and fibro, I am a single parent and my baby is 13 weeks tomorrow. We co-sleep because I needed to get some rest and I nap with her in the afternoons too, sometimes we go back to sleep together in the mornings. It isn’t easy but you will get through it ❤️

Hey hun, I have ME/Fibro duel diagnosis. I now have a near 18m old, and I really struggled for the first year physically and mentally. I also felt often in that time that I had made a terrible decision, that I could barely function as an adult human let alone an adult with a child, and I felt so much guilt for my little girl, that I was her mum. Reach out to your dr if you can, as medication can help if you are able to take if not BF (I also exclusively pumped for 10m which made my health much worse but there are some safer meds, in hind sight I wouldn’t put that pressure again). It feels much worse when you are in the throes of small baby life as it is all consuming. We also co-sleep, even at 18m. At about 8m old, I applied for social care through my local council, as I physically needed the help for myself to be able to care for my daughter in the best possible way. Maybe that is an option for you? The process can take awhile so worth contacting them to see if you are eligible?

Please feel free to message me, it can be so isolating living with a disability and being a parent. Massive hugs. I personally have found toddlerhood so far, so much easier to manage than under 12m, and I wouldn’t have believed that if someone had told me when my daughter was 7w old, i genuinely believed the pain and fatigue would never lessen and I’d be stuck in that hell cycle whilst caring for my child. Some days are still really rough, but it’s finding what works for you. Are you managing to sleep in and decent chunks (4hrs?). Other little tips, snacks little and often, moving a small fridge into my bedroom so I could store my breast milk so I didn’t have to go downstairs if I was up there (could do the same with prep machine/kettle). Lots and lots of fluid. You are doing the best you can sweetie, big hugs 💕

I put off having a baby for a long time because of my health issues. Just take things one day at a time, listen to your body. If you think you’re over doing it, stop and take a break. It’s really hard to do but you can do it ❤️

@Lauren I just don’t feel like I can do it any more, I’m physically and mentally done. I don’t know what to do, I feel stupid for thinking I could do this.

It’s okay to feel like, it’s okay to have those days you think you genuinely can’t carry on anymore. Feel it, cry it out, make yourself a hot brew, snuggle your baby, and remind yourself, you are here right now, with your little baby. Breathe. Tomorrow will start a new, and plans can be made so you feel more supported and equipped to manage in the best way you can. Most parents, even without a physical disability feel completely helpless and like they can’t carry on at certain points. You aren’t alone with how you feel. Tomorrow is Monday, GP practices are back open, HV are available, reach out for support, and plans can be put in place. What is it exactly do you feel you can’t carry on with? Lack of sleep? Physical demands of breastfeeding? And or demands of newborn? Can you pin point or separate what is physical pain/fatigue or mental health? Sometimes figuring out exactly what it is and naming it can be a start of getting some help or relief. Big hugs 💕

@Lauren I just feel so broken. The physical demands of a newborn. The non stop 24/7 mix of feeds, nappy change, crying. I have postnatal depression too. I feel like I just need to give her away. Or that if I tell the HV or GP how I really feel then they will take her away anyway. I don’t know what to do. I hurt so bad and I’m physically burnt out. She won’t stop crying and it’s distressing.

If you tell your HV or GP, what they will want to do, is help you. If they already know you have PPD then they are aware you might need more support/and medication. Newborns are hard, postpartum is hard especially the first time anyone experiences it. Hormones are all over the place, babies are brand new and learning the world. Do you have anyone, a partner, parents, siblings, best friends? Who could have LO for 4-5hr straight, so you can have a decent stretch of sleep? With pain relief? when pain is lessened and you are slightly rested things don’t appear so dark and far more manageable. Things do improve, and reaching out for more support is the best way for that to happen. X