197/365 – Setting the boundaries

At the wedding I wrote about in my last post, one of my friends told me about her recent diagnosis with an auto immune disease. She’s still in the very early stages of dealing with it and hasn’t sought support from people with the same condition yet. She was saying many things that went through my own head during the early days of MG and is currently battling many things I still struggle with. 

The main thing she was swithering with was going full throttle with dancing and drinking or holding back knowing that she would be in a better state over the following days. I too have this fight regularly – I’m pictured above on the day after the wedding in ‘recovery’ mode. It’s the constant battle for someone living with a condition like ours – the instant reward of having fun in the moment and dealing with the consequences later or being steadily well behaved. It’s what the spoon theory is all about. 

While people deal with this differently, being consistently well behaved is hard to adapt to for my generation as we’re told that it’s boring. So it’s a balance I haven’t mastered nor am I particularly keen to get to grips with. It takes strength of character to say no when you know yes is the fun answer. It’s the space where you might lose ‘friends’, where ‘relationships’ might break down and where you try to figure out what your new limits are. 

There are no easy answers and, as I say, it’s still something I still battle regularly. The main thing is being honest with those around you and expecting them to understand. If they don’t, it’s time to start questioning why they deserve a place in your life. More often than not, I find my loved ones gently challenge me if I’m being wreckless or destructive. 

2 thoughts on “197/365 – Setting the boundaries”

  1. Hello, I just began developing ocular MG symptoms about a year ago. At that time, they were so infrequent that I didn’t bother to take any Mestinon. In the last few months, I’ve noticed that without fail I will lose control of my left eyelid for about 30 minutes to an hour the morning after a night of drinking. Do you experience a similar thing? Do you find taking Mestinon in the morning helps? I know, obviously just avoiding alcohol is the best answer but I just don’t think that is realistic. Thank you!!

    1. Hey, thanks for getting in touch. It’s great that you are relatively symptom free excluding the morning after. I can’t say my symptoms are that predictable so it sounds best to have a chat with your consultant re mestinon. Completely agree that not drinking is unrealistic – have you found the level you can drink to without your symptoms being affected or does it happen even after 1 drink?

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