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.