Elaine is the partner of the author of this blog. You can read her other guest posts on the tagged page.
Laurna is the writer but I’m going to try something out of my comfort zone over the next few blogs. You see personal/creative writing is not a strength of mine. My friends often joke about how formal my writing is – it often includes a bunch of ‘thereins and heretofores’. If you can bear with me I will try to lend a different perspective on living with Myasthenia because in any household, Myasthenia is a team effort.
When Laurna was first diagnosed, the prospect of ‘our household’ was still an unspoken future hope. Laurna and I had been together for about 6 months when she started experiencing symptoms. The insecurities that naturally come with a relatively new relationship seemed to be magnified as I simultaneously worried about being suffocatingly attentive or appearing aloof in an attempt to give some space.
Another year and six months on and Laurna was being wheeled into an operating theatre in her hospital nightgown to have a Thymectomy. I have never felt as useless as I did that day putting her care into the hands of complete strangers.
In the days and weeks after the operation and despite initial stubborn objections, I was able to help out more and we found humour in most things from the ‘sexy’ hospital gowns to making up outrageous stories to impress people about how she got her scar (did I ever tell you about the time Laurna got into a bar fight with a shark?)
Two years after the operation and we have settled into our usual Myasthenia related routine. I give Laurna a hard time about reducing her medication, over-exercising and not getting enough rest. She is mostly appreciative of my perspective and I usually know when to back off. It can be a hard balance to achieve and continuing to find that sweet spot can be a delicate task.
I have also had to really improve the relationship with myself over that time to be strong physically and emotionally so that I can cope with all the things Myasthenia, with its almost comedic inconvenient timing, throws at you.
Over the next few days, I will give some examples of the kinds of things that work for me.
Retrospect gives 20/20 vision and these observations, while seemingly straightforward now, were not always so apparent. Of course, all experiences and relationship dynamics are different.
From attending the Myasthenia events, I have met the most amazing Mothers and Daughters, Friends, Husbands and Wives etc. Hopefully most people will find something to relate to over the next few days, regardless of the capacity in which you support someone with Myasthenia.