Self-Advocacy Story: Kirstyn Flemming It is vital that you advocate for yourself, all of the time! I am affected by MG every day. MG affects my speech, and I can also experience bouts of swallowing issues where I choke on my own saliva, as well as food. My vision can be affected; I have blurred and double vision, along with a droop and sometimes complete closure. I also experience brain fog and can often not get my words out. I sometimes experience weakness in my legs, and my mobility isn’t good at all. I can start a day off by feeling like I could run a marathon, feeling energetic and able to do things which make me very happy, but by late afternoon or early evening, I can start to feel like a rag doll, like not much is holding me up. I can also start a day off feeling fatigued, feeling like I have not slept. On these days I know I am going to be restricted with regards to what I am able to do. Pre-diagnosis I experienced a crisis, and I never ever want to experience another one! I always tackle things in stages, for example, housework or going out. Sometimes I need to sit down for a while or rest in between doing things; I describe it as recharging my batteries. I find it difficult to make others understand exactly how my MG is affecting me, although those who know me well can tell straight away when I am struggling; they can see the changes in me and hear my voice alter. When I struggle to hold my head upright or experience choking episodes, especially while eating or waking up at night, it can be quite frightening. Over time, I’ve learned to stay calm during these moments. I have to be very cautious about what I eat to prevent choking, and I always eat slowly, sipping liquids carefully. Sometimes, it can take me hours just to finish a small coffee. So, you can see I have good days and bad days, as well as good and bad parts of a day. It is very much like being on a never-ending roller coaster that you can’t get off! One of the things I hate most about MG is when my walking is affected. When I am so uncoordinated and I know perfectly well I look like a drunk, I hate it, especially as I am aware of it. It feels like my brain is not in sync with my legs. It’s the same when I experience speech difficulties when I can’t get words out. I hate when my left eye doesn’t match up with my right eye and it looks like I’ve spent half the day in a pub - I know people look at me and make assumptions! Enjoying the good days I do really enjoy when I am having a good day; when my brain, my thoughts, my speech and my mobility are all in sync, I try to be more positive and do more. I love walking my daughter’s dogs. I must be careful as it’s all too easy to really overdo things, which I’ve learnt the hard way. You learn to adapt and just get on with things, and I am in a much better place now. Keeping as healthy as I can, eating healthily and just going for short-distance walks can help. It is vital that you advocate for yourself all of the time, even when chatting with people, no matter who they are. It is key to be able to convey exactly how you feel especially if you are in the company of family or friends; then hopefully others can begin to understand how you are affected. People are very accommodating but only if they know how they can be supportive. Only you know how you are affected by MG; therefore, it is essential you voice exactly how you feel so you receive the most effective support and treatment. Keeping a diary To help me do this I keep a diary and notes on my general health for things like GP visits and clinic appointments. I also note whenever I have been prescribed any new medications such as antibiotics. I take my diary to every hospital consultation with my Neurologist. I use it to explain how I have been since my last visit as it is very important to voice how you feel. When I was prescribed Azathioprine, I experienced reoccurring infections, and I knew this immunosuppressant wasn’t for me. Because I had documented everything, I was able to advocate for myself with my Neurologist, who was extremely supportive and changed my medication. Keeping a diary has been crucial for my self-advocacy and communication journey, and I would recommend it to anyone, especially the newly diagnosed. Kirstyn Flemming Manage Cookie Preferences