Part of my story and in need of physical help
So I was diagnosed in May of 2020, but I've probably had MS since 2017 as subtle RRMS. It progressed to SPMS in 2018 or 2019, so a lot of damage has accrued and my onset of symptoms was delayed. Now I'm nearly bedbound/wheelchair bound, so you can understand how disheartening that is, especially when you're a 6'1 giant and my primary caretaker is my 5' wife along with a little bit of help from her brothers, my mom and my brother.. I'm in a living hell..
My heart goes out to you,
.
No one here will ever lie to you and say that living with MS is easy. And it IS disheartening to have MS wreak such havoc so quickly on your life. Let's be real -- MS just plain sucks.
Are you on a specific treatment plan right now? Do you feel like it's helping at all?
Are you and your wife able to qualify for any in-home care assistance? Even just occasionally or as needed? I will also say that it's important to not forget the toll MS can take on one's mental health and their relationships (you're probably thinking, "Well, no duh, Erin""😉. So, if possible, please consider finding someone to talk to and maybe even someone to talk to you and your wife as you navigate this change in your lives. You both have the right to have all your feelings heard and you deserve help in processing all the changes that have occurred in your lives in the past few years (and sometimes, having a professional individual you can vent to just feels good). I would definitely take some time (maybe you already have and if so, my apologies) to see what resources may be available in your area.
Please know you are not alone in this. We have a number of younger men in this community that understand quite well how hellacious MS can be. I wanted to share one piece from one of our contributors that I thought you might find relatable -- https://multiplesclerosis.net/living-with-ms/not-born-this-way. Also, one of our very popular contributors writes very honestly and frankly about his journey with MS. You can read a bit about him here (and find a link to all of his work) -- https://multiplesclerosis.net/community/experts/devin-garlit. And lastly, we have a married couple that both have MS (Jennifer has SPMS) and they help take care of each other and also talk pretty openly about the challenges (and yes, even the good moments) of their lives with MS -- https://multiplesclerosis.net/community/experts/dan-jennifer-digmann. I don't want to be all "Pollyanna" and tell you everything will be fine and dandy because, well, that's just not how MS works.
BUT. I do want you to know that there is life out there and it won't always feel like a living hell. Is it hard? Absolutely. Is it totally unfair that you and your wife have to deal with MS? 100%. Do I wish MS would be eradicated from the planet this very second? You bet.
We know this is hard. Unimaginably hard. But we also know (this community, I mean) that there is life to be lived, regardless of your MS. It's not always easy and it's not all wine and roses. But, it can still be good.
Do what you can to protect the good in your life, your marriage, and your relationships. And keep letting MS know that it can't take everything from you, no matter how hard it may try.
Hang in there. You are not alone.
Best, Erin, MultipleSclerosis.net Team Member.
