I swore I would never write a blog. I already talk too much and am sick of hearing about my own boring problems from my big boring mouth. But maybe in writing about my experience living with MS I won’t need to talk so much and I can use my verbal blabbing powers for more interesting pursuits (like celebrity gossip and auctioneer imitations). Because on the list of my Personal Disease Anxieties, torturing everyone with endless tales of MS woe is right up there with my fear of spiders and my inability to safely wear flip-flops.
I believe in living with MS. Like, really living. I would love to be the Gwyneth of having MS. I want to learn how to consciously uncouple from MS but also where to find the most bad ass cane and then determine whether simultaneously wearing a bowler hat looks cool or crazy, all while eating locally sourced organic crudités and sleeping in my perfectly feng shue’d bedroom.
You might find this blog glib or trivial and if so, good. MS has A LOT of serious information and bad press out there. We already know this sucks but if we scratch a bit deeper, perhaps we can find a little humour or the teeniest bit of levity in this absurd situation.
Recently I was asked how much I want to be an advocate for this shit show and I groaned. None of us applied for the job. We didn’t go to school for this. Nobody grows up wanting to be the spokesperson for a crappy disease, obvi. So, I won’t pretend to be an advocate, just one story. Because even with what feels like an all consuming disease, life is about more than just one thing.
Hey I just found your blog, very interesting! Im 24 (female) and have also just been recently diagnosed. I can’t find a blog post or much info about you getting diagnosed. I am in an awful situation where my partner doesnt really believe I have MS (having spent months in hospital and have officially been diagnosed). Id love to hear your thoughts!
If you search the blog for “diagnosed” you’ll find a few stories on this topic, but I didn’t actually start this blog until several years after my dx.
I’m so sorry to hear of your partner’s reaction to your own dx. Getting MS is a major loss, most especially for the person with MS, but also for the ppl who love you. I think we process the loss of the life we thought we were going to have, much like we process any loss, and we go through the various of grief. Perhaps your partner is hanging out in the denial phase? If this is the case, maybe including them in a doctor’s appointment or getting some counselling together might be helpful. I know that when MS presents with what we think of as ‘invisible’ symptoms, it can unfortunately be tough for some ppl to understand.
I’m so sorry to hear of your DX. Stepping back from work can be really tough on our identities, but also an opportunity to prioritize health and well-being. Fingers crossed that you see some benefit from Ocrevus. Hang in there.
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Thanks Tracy! I like your blog too.
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Facebook Group beought me here and I am happy to be subscribed now. Keep writing,you are sensational!
Aw, thanks for reading!
Hey I just found your blog, very interesting! Im 24 (female) and have also just been recently diagnosed. I can’t find a blog post or much info about you getting diagnosed. I am in an awful situation where my partner doesnt really believe I have MS (having spent months in hospital and have officially been diagnosed). Id love to hear your thoughts!
Hi Sophie,
If you search the blog for “diagnosed” you’ll find a few stories on this topic, but I didn’t actually start this blog until several years after my dx.
I’m so sorry to hear of your partner’s reaction to your own dx. Getting MS is a major loss, most especially for the person with MS, but also for the ppl who love you. I think we process the loss of the life we thought we were going to have, much like we process any loss, and we go through the various of grief. Perhaps your partner is hanging out in the denial phase? If this is the case, maybe including them in a doctor’s appointment or getting some counselling together might be helpful. I know that when MS presents with what we think of as ‘invisible’ symptoms, it can unfortunately be tough for some ppl to understand.
Diagnosed 11/19. Sucks, but didn’t kill me (yet).PPMS, started Ocrevus, Ampyra, ACTHAR,Doing PT. Prob going to go on perm dis. Holy Crap only 58.
I’m so sorry to hear of your DX. Stepping back from work can be really tough on our identities, but also an opportunity to prioritize health and well-being. Fingers crossed that you see some benefit from Ocrevus. Hang in there.