The Ragdoll Mum

Back in 2002, I was in the throes of new parenthood. Every day was wonderful, if a little tiring, and I couldn’t have been happier. I had my daughter at the age of thirty after being sure for so many years that I didn’t really fancy the idea of children. But after the events of 9/11, I took a step back and re-evaluated my life. It turned out I did, in fact, want to become a mum. When it happened quickly I was terrified, of course, but nevertheless ecstatic.

After the birth, I was weak and tired but put it down to the obvious things: breastfeeding, sleepless nights, and endless visitors. But when the weakness didn’t abate I began to worry. I struggled to chew which was rather disconcerting, especially when I began struggling to swallow my food too. Walking up the stairs became difficult; a sensation of having legs of jelly was the only way I could describe it. When driving for longer periods I would find my eyelids drooping and would have to tilt my head back to be able to concentrate on the road.

Terrified that I was host to a tumour, I visited my GP and described my many, varied symptoms. After a discussion the doctor sat, nodding her head as I gripped my husband’s hand so tight I almost cut off his circulation. ‘I think you have a condition called Myasthenia Gravis,’ she informed me. The very name of the sinister sounding condition—especially the appearance of ‘gravis’—sent shivers to my core and of course, my mind began to conjure up the most horrific scenarios. I was a new mum. I couldn’t leave my baby and my husband behind. Why was this happening? What had I done to cause it?

After a brain scan to rule out anything else I was sent to Oxford to meet with Prof. John Newsom-Davis, a Myasthenia Gravis specialist and was officially diagnosed. I had done nothing to cause it, thankfully. It just happened.

The neuromuscular condition, often nicknamed the Ragdoll Illness causes weakness in the muscles of moving parts of the body, i.e. arms, legs, lungs, facial muscles etc, and varies greatly from person to person. It’s caused by a problem in the transmission of impulses from the nerve to the muscle, meaning that prolonged use of the muscle causes fatigue and weakness. Until diagnosis, I hadn’t even heard of it! There is no cure…yet! But there is a treatment for the symptoms. After many more tests, a plan was implemented and I now take daily medication.

I’ve learned a lot about myself since diagnosis; one thing, in particular, is that I’m tougher than I thought. Although my particular case is well-managed and not considered life-threatening, there are now limits to what I can do. The most frustrating ones are that I can’t exercise lots and I can’t smile for long periods—annoying because I’m an inherently smiley person! But in all honesty, I refuse to let it define me. I refuse to let it get me down. Yes, it’s bloody frustrating and I do sometimes fear that it’ll get worse but those times are fleeting.

These days I’m the very proud mum of a wonderful, resilient teenager and I’m happy to say I’m living my dream of being a published, bestselling women’s fiction author. I know there are people so much worse off than me out there. And whilst I can spread a little positivity, awareness and happiness I will continue to do so!

For more information on MG please go to https://myaware.org/

Written by Lisa Hobman

Bestselling Romance Author

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The newest release is A Summer of New Beginnings with Aria Fiction.