Myasthenia and post-thymectomy blues

A conversation I had over the last few days about the feelings you have after an operation got me thinking about my thymectomy. While there are a range of emotions you go through, my thoughts were focused on the disappointment you feel if it isn’t an instant success. I thought I’d blog about that nearly two years after my operation.

You go into hospital with high hopes when having a thymectomy –  you read that’s there a 30% chance it’ll make your MG vanish. You try to remember that’s still 70% of people who continue to live with it, but your mind says ‘be positive’. You think your consultant and surgeon have pushed this on you for a reason, right? I mean, it was practically from your first MG appointment that you were encouraged to have a thymectomy. 

Then, as happens for the majority, you have the operation and your symptoms are still there. In fact they may flare up because of the stress your body’s under post- operation. It’s spoken about or assumed by the medical team that you’re not one of the 30%. The good teams will tell you that it takes time for many people to feel the full impact of the thymectomy. Your loved ones will either be too polite to say anything or they’ll be straight up with you – they’ll remind you that hope isn’t gone. But once you’re strong enough to want more than basic comfort, you’ll begin to feel the loss of something you only ever had a slim chance of getting. An easy cure. That’s when you might hit a wall.

That wall will look different depending on the way your mind works and how you react to the thymectomy – for me, it looked like a mountain blocking my path. That I couldn’t hope to climb. Instead I sat down and looked up at the mountain – studied its sharp crags, the rain lashing down around it, the mist lingering at its peak, the broken path leading up at an angle I could hardly fathom. I sat still in the silence of the mountain’s valley and asked myself ‘why did I bother trying’. How deluded was I to think I’d be one of the ‘special ones’. 

As I sat stewing in that anger and frustration, I missed the initial changes.

I barely recognised the stable state I found myself in. Months past and all I had was ptosis and a bit of fatigue. No sign of double vision, slurred speech, difficulties swallowing or weak limbs. I woke from my silent trance to see that the mountain had transformed into a jagged cliff edge with gentle clouds over head and a calm sea lapping away. It was much more manageable now – everything was. While I went for little strolls, I didn’t stray too far. I was scared to try the path just yet for fear that it would shape shift before my eyes back into the terrifying rock face. Or that a surprise landslide would throw me into the sea and my legs would seize up. I didn’t believe the change was real or would last.

The symptoms stayed consistent and I found I was able to challenge myself more with work, with the blog and fitness. I began to feel stronger than I had for years – the only thing that remained of my MG was the fatigue when I overdid it and the ptosis. By the time it came to the year anniversary, I looked to the spot where the mountain had turned into a cliff and saw a rolling hill. The sun was peaking through the clouds now and illuminating a meandering path. This made me smile from my heart outwards and for the first time I considered that the mountain might not come back at all if I was careful. I went for further strolls now – roaming, seeking, testing myself. 

It’ll be two years in September since I had my thymectomy and when I find myself in that valley now, I see only that. A peaceful valley with mountains and cliffs and hills in the backdrop. I walk around safe in knowledge that I won’t fall or find myself scrambling on my hands and knees (unless I choose to).

 When I think about the first few months after the operation, I realise that the dark feelings I had are still there deep down. Like I’ve stored them away so I always remember. But I can look at them from a safe distance and know that accepting them and waiting for them to pass was the best thing I could have done. They probably won’t ever leave me because they were part of the journey of acceptance and because I think of them every time I see my ever fading scar. 

The majority of us won’t have that thymectomy miracle and while it’s good to be hopeful, it’s not the end of the story if it doesn’t happen. Even if it might feel that way at the time. 

Be patient, listen to your body and your mind, embrace what you’re feeling rather than trying to shut it out and pay close attention to the little changes. You might find yourself in that valley with me someday.

Guest post 2: Myasthenia and the challenges of raising a child

Guest post by Lucy Whitaker

In her last post Lucy wrote about being pregnant, giving birth and raising her son Jacob. Now she talks about

Our life

 We have quiet time with snuggles, blankets, hot chocolate and Disney movies and although I try to throw a new one in the mix from time to time, Frozen, Minions and Toy Story take the centre stage. 

We read stories together, taking it in turns as when my voice tends to go he definitely makes more sense reading.

 We have picnics, which he cooks for me in his kitchen, and we take the food anywhere in the house or outside when we get a dry spell. 

He likes to do his fixing with his workbench, and he uses the help of Woody, Buzz or Jesse at times…even Lemur lands a hand. 

Mummy is sick 

He knows mummy is poorly, as I have a pic line in so that’s an obvious clue and he can see where mummy gets her magic medicine, like his calpol.

 He has seen me in hospital and he knows mummy is okay as all the nursing staff are great with him, so he feels comfortable. So comfortable that he loves running around and recently found the bed control! 

He has not had many disruptions to his routine whilst I’m in hospital apart from me not being there and we’ve worked it so that I’m just gone one night every two weeks. 

The guilt and heartache does occasionally creep up on me. No mother wants their child to have to go through tough times, let alone having to deal with an ill parent who can be good one day and not so good the next. 

My family have all said that he’s known even from a babe in arms that mummy has restrictions, as he wasn’t a demanding baby and even now he’s not so much. I guess I’m lucky in that respect and just have to remember how precious he is so I’m not torturing myself or comparing myself to other mothers. 

Hard choices

It’s the time that I spend with him that is so precious and important to us. I felt like I had no control when my MG has been so aggressive. 

Having to make the decision of nursery was one of the hardest things for me as I didn’t want to be without him – I wanted to hold him all the time as I couldn’t do much else and all I wanted him to know was that I was always there. 

It almost felt like I’d failed as a parent; I kept torturing myself by thinking I was letting someone else look after my child. 

Ok, in a way I was but that didn’t and doesnt make me any less of a mother. I guess because I wasn’t back at work I felt like I didn’t have an excuse to use. Although it’s not an excuse, it’s my illness…one that at the moment is putting so many hurdles in the way of everyday living and is creating a learning curve to find out what’s best for us. 

I am so grateful for his childcare as its where he is able to make friends, get messy, learn, sing and dance and generally be able to play all day. What more could a child want to be doing everyday?

 I made the decision to put him in for a few days so that we both benefitted from it – him in his growth and development and me in my resting so I can have those precious moments of bath time and read him his bedtime story. 

We have play dates, just not every week due to the childcare or times when mummy may be having a tough day. So sometimes we don’t get asked again because we’ve rescheduled a fair few times. 

Looking back though, even though I had no choice due to being restricted, I couldn’t be selfish and hold him back. I look at him now and how he interacts and plays with his cousins and other children and I just beam with pride, as I know it was the best decision for us. 

Read Lucy’s earlier blog on finding out she was pregnant.