Discussing pregnancy and families in the context of M.E. will cause mixed emotions. Some of you will read this with understanding and some of you will feel resentment, hurt and disappointment. These are natural reactions when illness or circumstance robs us of the precious things that life can give.
My heart goes out to you and I am giving you a big hug now! It is not easy, I know. Tears are often shed on topics like this so feel free to get a box of tissues and just have a good cry! Releasing the emotions is good and healthy for us. We have all lost something as a result of this illness.
My husband and I had a conversation about starting a family around 13 years ago. We both longed for a family but having been bedbound for a few years, not being able to have sex let alone raise children, the whole idea seemed totally crazy. I could probably manage about five minutes of conversation a day. I couldn’t listen to any noise without getting ill and I needed help to wash myself.
After many conversations, we concluded it could go one of three ways:
- I could get worse;
- I would remain the same;
- I would improve.
We felt I couldn’t get any worse because I was already bedbound, so hoped for option three and decided to take a step of faith. Sex and M.E. is a minefield in itself! We had sex once (normal recovery time at that stage was three months in bed before I could recover the energy so it was a rare event!) I embraced the three months still in bed, but at week 10, I realised I had not had a period. My body was too much of a mess to have regular periods, so never thought anything of it. However, we did a test, which confirmed I was pregnant.
Now, in total shock, I began to panic about how I would cope?
The first three months I was stuck in bed. The middle three months I had a bit more energy and the last three months I was totally exhausted again.
Childbirth
We are all going to have completely different stories on childbirth, as our bodies are all completely different. I have two children and they could not have been more opposite experiences of childbirth!
With my first child my waters broke and then she was born four days later! With my second I went from 0 cm dilation to giving birth in less than 10 minutes. I was exhausted from both labours but in very different ways. After a lengthy period in my first labour I needed help with forceps to deliver the baby. My body had taken a total beating. I had taken the option of an epidural to help reduce the pain levels in the hope that it would reduce any post labour relapse. I remember being in the surgery room with a handful of people in there helping me.
I knew my body was struggling because I was vomiting as well. I remember they were all discussing the collapse of Woolworths and having a laugh, while I was laying with my legs akimbo! A surreal experience!
During the second labour I got to the point where I couldn’t cope any longer with being pregnant and I needed to be induced. After a long time, the hospital said the induction hadn’t worked and they were sending me home.
They suggested a bath, before I left, as a last resort. I love water, but every part of me hated being in the bath. As they were about to send me home, I suddenly felt I needed to poo. They looked quickly and I was rushed down to the labour ward and my son flew out, literally! The speed of the labour ripped me to complete shreds, which lead to a three-hour surgery to repair the damage.
The midwives were fantastic during the labour but didn’t understand M.E. I couldn’t fault the nurses on the ward though, during the night they offered to help me with night feeds so I could rest as much as possible. For both children, we paid for a private room after the birth. This enabled me to begin the recovery process and allowed me to sleep better. Not being in a ward full of other mums and babies made a big difference.
With my second child I experienced a fourth-degree tear. Unfortunately, the stitching was knotted in a really awkward place. Every time I moved it was agony and the midwives couldn’t do anything about it. I had an enforced period of time in bed until the stitches naturally dissolved. The rest was needed after the labour and the trauma I went through. I felt gutted to miss out on normal mum and baby experiences for a second time. It hurt like hell.
Top tip: Forget hospital food; when people came to visit, they came with fish and chips and a pizza! It tasted so good!
New Born
With new born children you have permission to rest, and rest lots. Focus on getting back on track and levelling your energy levels. Life with a new-born was challenging. The key was getting the right balances in place. My only priority was to make sure the bottles were sterilised and ready.
I rested whenever the children did. My husband and my mum have been the biggest blessing. My mum did endless washing and helped out whenever she could. Definitely use the people around you and ask for help. It takes the pressure off you lots. With both children, the hardest thing I found, was not producing any breast milk. It was just one step too much for my body.
Which meant I tackled some raw emotions about not being good enough to provide the most basic things like milk for my own child. In time I learnt to see it as a blessing that my husband and mum could do night shifts with the children while I slept properly, but it was still hard mentally
Getting Older
My children never grew up going to toddler groups. We have both missed out on the normal social interactions that happen around that age because of my illness. It made it very difficult for my children to form friendships. Even now we don’t meet up with friends due to my health. They are now at school and doing brilliantly.
Have they missed out? Perhaps, we don’t go on family days out nor do we have friends around much but they are grounded in family and love and have had a full-time mum around whereas had I been well I may have been out at work.
They are content playing games and chilling out in the house. They understand the concept of ‘rest’ which is a life skill. They aren’t pressured with a lot of the normal things of childhood that other children are and have learnt a lot about caring for others through my illness.
The decision to have a family was a big one and not everyone will have the same experience. The journey has been incredibly challenging on every level, mentally, physically, emotionally, and spiritually. We could not have done it without my mum being around and assisting us in every way, shape and form.
For those can embark on this journey, it has been an extremely rewarding and life changing experience. We don’t regret our decision.
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Information
- The ME Association: Post Viral Fatigue in Pregnancy | June 28, 2022
- Funding Announcement: The ME Association funds new study examining pregnancy in ME/CFS | July 15, 2022
- The ME Association: Pregnancy and ME/CFS | Sept 26, 2022
- The ME Association: BMJ: Research: A Systematic Review of Pregnancy and ME/CFS | Oct 6, 2023
- MEA Leaflet: Pregnancy & Childbirth