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.

 

Guest post: summing up

Elaine is the partner of the author of this blog. You can read Elaine’s other guest posts on the tagged page.

Thankfully, I have come to the end of my short career as a ‘blogger’. Over the last few weeks, I have tried to share some personal perspectives on supporting someone with Myasthenia. I hope you found them even slightly useful.

Extracting some themes from the jumble of words in my blogs, I will leave you with the following summary of my ramblings

1) having a team is important – yours can be made up of anyone who has a positive influence in your life.

2) Communicate with your team – tell them what you need and don’t feel guilty or awkward about it.

3) Try to put your pride to one side – by letting people help you, it will indirectly help your partner.

4) Know your boundaries – to help you be a supporter, there are some things you may need in return from your partner e.g. communication, being involved in decisions and compromise.

5) Be patient – you can’t fix everything.

6) Google is a horrible place – stick to the facts and avoid the ‘but what ifs…’ where you can.

7) Guilt is not constructive – try and focus on all the good things you can and have been doing to support rather than what you can’t do.

8) Unspoken thoughts can be there to protect you – there is often a nugget of value in the middle of the madness:

9) Be kind to yourself and be kind to each other – you’re both already doing great.

My final point is the most important of all:

10) Give a big two fingers to Myasthenia – When Laurna got diagnosed, I quickly learned that there was a time for talking. Retrospect has shown how important it was that there was also a time for not talking; just being us, having fun and enjoying the life we had chosen together. 

When I look at Laurna I don’t see someone with Myasthenia – I see Laurna. A person who is passionate, smart and kind. A person who I can’t spend enough time with. I completely refuse to let Myasthenia change that – there are so many more interesting and fun things about Laurna and she will never be defined by her condition in my eyes.

So there you have it. If you have made it this far, thanks for reading. I am really looking forward to hearing about other people’s experiences.

 Like Laurna, I have much to learn and more bridges to cross. I always appreciate the support and perspective from the Myasthenia community and can’t wait to read the next instalments. 

Guest post: The fear, the guilt and the irrational thoughts

Elaine is the partner of the author of this blog. You can read Elaine’s other guest posts on the tagged page.

This entry is about the period after diagnosis when the initial shock is starting to wear off and the fear, guilt and crazies start to creep in.

The Fear

The aggressive onset of Laurna’s initial symptoms made me fear for her and how much further her condition would deteriorate. Within a year, she had gone from having no symptoms to having regular tsosis, speech slurring, difficulty swallowing and weakened limbs. Google was a terrifying place with its doom and gloom articles and pictures. I have never been a particularly creative person but during that time, I dreamed up every scenario possible (and even those that were impossible and frankly ridiculous).

Selfishly, I feared that Laurna would want space after her diagnosis and maybe break up with me. As it turned out, Laurna did need space to figure things out but thankfully not in the way I was worried about. I had to learn to be patient and accept that I can’t ‘fix’ everything. Looking back, I have always really appreciated how patient Laurna was with me learning to be patient!

The Guilt

I am sure lots of partners can relate to this but put simply – ‘It Should Have Been Me’. I just felt guilty. I felt guilty for having fears. I felt guilty for feeling guilty. Laurna had Myasthenia and I couldn’t take it from her or even share some of the load. 

Laurna has always been so active and it seemed a particularly cruel thing for such an energetic person to get. It left me feeling very helpless for quite a while. Ultimately, this kind of thinking doesn’t help you and it doesn’t help your partner. I tried to focus on the things that I could do rather than what I couldn’t do and I found that helped a lot. 

The Irrational Thoughts

I know it’s different for everyone but my brain turned into a tumble drier of questions, thoughts, doubts, concerns, ideas and plans.

How did I feel about Laurna’s diagnosis? What did it mean for her? What did it mean for me? How much training would it take to be able to run every marathon ever organised and raise thousands of pounds for research? What impact would it have if we wanted to have children in the future? Was I going to give up my career to look after Laurna? On second thoughts, I could never give up my career because I may have to support the both of us? What if I retrained as a scientist and single handedly developed a cure – can’t be that hard, right? Am I really the right person to deal with this….

As you can see, I went from having a total crisis of confidence to being overly exuberant in wanting to defeat Myasthenia. There was also a lot of fear driven hypothesising and general concern for the future. I worried what people would think if I shared my doubts or concerns and so they remained largely unspoken. 

I now understand that it is important to engage with the unspoken and feel more comfortable allowing myself to feel whatever it is that I feel. Sometimes ‘unspoken’ thoughts are there to protect you – there can be a nugget of value in the middle of the madness.

Conclusion

I’m not really sure when the ‘fear, guilt and crazy’ stage ended. It all just phased out as we ‘got on with stuff’. The main thing I would take away is to be kind to yourself and to each other. It is a complex phase to navigate and requires patience, empathy and communication. It’s when your support team can really help too. 

The priority is the person with the Myasthenia who has much more to deal with than you in this moment. If you feel that this phase is getting in the way of your support or your relationship, there are lots of options available. Counselling is always a good place to start and the Myaware charity (amongst others) has great resources including a counsellor and support groups. Just remember you’re not alone.