Guest post: Myasthenia and being a mum

Guest post by Lucy Whitaker

On the 2nd October 2013I found myself giving birth..

The unknown of being pregnant

I remember the day I took the pregnancy test, 9th February 2012, like it was yesterday. It was positive before I’d even set it down to wait! How can I be pregnant? How is this possible? Yes, we don’t need the birds and the bees talk, obviously I wasn’t just visited by the stork. I wasn’t sure I could be? How will I cope? What sort of mum will I be? Can I do this? Am I am ready? What will my MG do – will it behave? Will I make my baby ill? These were just a few of the questions that raced through my head.

Past the panic

My pregnancy saw me blossom; my MG behaved and I was stable on the drugs I had been on without any intervention from my doctor. My medication was the same and I was told nothing would harm the baby. I was safe and so was my baby. As you can imagine, that made me very happy.

I decided not to find out the sex of my baby. I thought that if I was to be given such a miracle I didn’t want to know. This just added to the excitement.

Baby time

1.37am saw the arrival of Jacob William Samuel – the whole 8lb6oz of him. It was all done naturally with help from the midwife and doctors  He was a healthy, hungry boy.

I have never felt exhaustion like I did during those next few hours, days and months. Not only did I have a new born who’s normal routine was eating, sleeping and screaming, but I also had to contend with the worst flare up of my MG in 16 years. My life turned upside in a matter of weeks.

The storm after the calm

I couldn’t pick Jacob up, whether to change his nappy or to get him out of his Moses basket to comfort him. Feeding became a challenge in itself so I resorted to the bottle, which helped to relieve some pressure as my family were all able to help out.

I still felt like me but my body didn’t; I didn’t have any strength…it was wiped out completely. I constantly panicked and wondered how was I going to cope with Jacob if I couldn’t even cope with myself.

Parental support

Mum and Dad came to our rescue, we moved back in. Even though I had their constant support and love, my MG flare lingered on. It was getting on my nerves as I felt completely useless. What sort of mother was I when I couldn’t take him to every antenatal class? Swimming group? Meet up with all the NCTmums and babies? Return to work after 6 months? Take him for a stroll?

I kept thinking that all that I dreamt of when I was a little girl was being taken away from me. For that, I hated my MG, despised it. Guilt constantly filled my thoughts – I felt that Jacob would be missing out on so much especially if I was so restricted.

 I wanted nothing more than to be able to pop him in his car seat and drive to his friends, show him off at work, have play dates, take him to the lakes to feed the ducks…but MG made sure that didn’t take place.

Despite my restrictions I’m thankful for always being there with Jacob – we’ve both had the comfort of knowing that his mummy is always there. He could see me, feel me and talk to me. I also felt that my MG took away a lot from me, so although Jacob has constant love and affectionI feel like I missed out on things.

Looking forward

So right now my MG is being controlled by fortnightly visits to Oxford for 2 days of IVIG treatment. I also take a concoction of other drugs daily, from steroids to cyclosporin.

Being a new mother is one of the most rewarding and challenging times any one can go through, let alone having MG to deal with and its constant little reminders. Jacob is only 2 and a half years old and it’s nothing like I could ever have imagined. There are times where I’m in awe of his kindness, even if it might be making sure he has enough sweets so he can give one to his Granny and Grandpa, to giving the cat his taggy blanket and letting him know “he’ll be alright”. He adds to my strength on a daily basis; I am definitely fighting my body, although I’m hoping sometime soon we may make peace again.

 

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