Real Life ‘Would you rather?’: Dilemmas we face while living with MS

 

Would you rather spend the rest of your life being called an inspiration for getting out of bed or, spend the rest of your life being called lazy for staying in it?

 

Would you rather have your fatigue get worse because is too hot or your spasms get worse because it’s too cold?

 

Would you rather be told your symptoms are too mild so go away and wait to get worse or be told your symptoms are too severe, why didn’t you come in years ago?

 

Would you rather undergo a series of invasive tests to get evidence for your relapse or be denied treatment because there’s no medical evidence of your relapse?

 

Would you rather keep hearing ‘you don’t look sick’ or keep having people tell you ‘I’m tired too’?

 

Would you rather have everyone you meet ask if you’re worried that you’ll ‘end up in a wheelchair’ or have everyone you meet ask when you’re getting ‘that new MS cure I saw off of the news’?

 

Would you rather not tell people you have MS and have no chance of them helping you or tell people you have MS and spend the rest of your life trying to explain what that means?

 

Would you rather go to the disabled toilet and risk a stranger calling you out because you ’don’t look disabled’ or join the queue for the ladies and risk pissing yourself?

 

Would you rather have a friend suggest in a well-meaning but ultimately unhelpful manner that more structure in your life would help you feel better or have that friend be annoyed when your fatigue makes you cancel your newly structured, tiring plans?

 

Would you rather realize you keep falling off your most fabulous pair of shoes because your most recent relapse has left some damage in your legs or realize it’s not a relapse, it’s actually the shoes and you have to throw them out even though they are the prettiest shoes in human history?

 

Would you rather lose a friend because they ask you if your symptoms are psychosomatic or lose a friend because they are so afraid of the reality of your illness they just gradually stop talking to you?

 

Would you rather get in touch with your neurologist when you experience a new symptom and get attitude for bothering them when it turns out to be nothing or don’t get in touch with your neurologist and get into trouble for not bothering them when it turns out to be something?

 

Would you rather spend every day for the rest of your life fighting with your neurologist to get tests, treatment, an appointment, your results that got lost in the post or just leave it and maybe enjoy some of the quality of life your neurologist is supposed to be working with you to preserve?

 

Would you rather have a conversation with a relative who understands nothing about MS and keeps asking you if it’s ‘something to do with muscles’ but keeps it light and moves quickly on, or have a conversation with a relative stranger who understands what MS is but keeps crying and trying to hug you and will not let you change the subject?

 

Would you rather feel spiders crawling over your arms in the night and realise there are no spiders but you are having a relapse, or feel spiders crawling on your arms in the night and you aren’t having a relapse but the spiders are real and they are in your bed? Oh god, get them out, get them out.

 

 

@letty

 

Hi, I’m Letty McHugh an artist and writer living in Haworth, West Yorkshire.

 

My hobbies include falling off ill-advised clogs into oncoming traffic, an adventure sport I created and expect to sweep the nation soon.

 

I’ve been making jokes about my MS on the internet since I was first diagnosed with RRMS in 2012. You can read more posts from Letty at www.lettymchugh.co.uk  

 

Other blogs by Letty: