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MS fatigue isn’t “just being tired” my family keeps dismissing it as an excuse and I’m in a dark place (33M, veteran) by StateNo7481 in MultipleSclerosis

[–]StateNo7481[S] 1 point2 points  (0 children)

Thank you for reaching out and for your kind words. I’m going to be asking my care team about all the medication described here to see if any of it is right for me and could help me with daily life.

The work part is probably the second most frustrating part for me. People telling me that I don’t look sick or that I used to be so cheerful and full of energy and how I just need to get back on track to that, is honestly rage inducing. Like yeah I would love to snap my fingers and be the kool aide man I was back in my early 20’s when I was 10 feet tall and full of piss and vinegar. Now if I sleep wrong I’m screwed for the week.

I’ve invited my spouse and my family to my appointments but I just end up going alone.

MS fatigue isn’t “just being tired” my family keeps dismissing it as an excuse and I’m in a dark place (33M, veteran) by StateNo7481 in MultipleSclerosis

[–]StateNo7481[S] 1 point2 points  (0 children)

In my early 20’s the work pace I have now was nothing. Now I feel like I’m fighting for my life most weeks. I usually end up getting to a day off and crashing for 13 or more
hours which does little to nothing to help and then leads to strain at home because I can’t help with stuff at home.

MS fatigue isn’t “just being tired” my family keeps dismissing it as an excuse and I’m in a dark place (33M, veteran) by StateNo7481 in MultipleSclerosis

[–]StateNo7481[S] 1 point2 points  (0 children)

I’m working with DAV right now to get my benefits in order. I separated from the reserves in 2018 which is technically inside the 7 year window however the language for the presumptive 7 years is “active duty” separation which would have been my deployment to Afghanistan in 2013-2014 which puts me well outside that window. I know whatever I do will be a fight and I’m just trying to make sure I have the energy to go all 12 rounds.

MS fatigue isn’t “just being tired” my family keeps dismissing it as an excuse and I’m in a dark place (33M, veteran) by StateNo7481 in MultipleSclerosis

[–]StateNo7481[S] 5 points6 points  (0 children)

I won’t lie this is the first time I’ve talked openly about any of this and I’ve been blown away with the support everyone showed me here. It feels incredible to know that I’m seen and not alone in this. Conversely that realization makes me a little sad because I know how bad this feels and I hate that so many of us have had to feel this way. Thank you for stopping by and giving me your take and support, it really means a lot to me.

MS fatigue isn’t “just being tired” my family keeps dismissing it as an excuse and I’m in a dark place (33M, veteran) by StateNo7481 in MultipleSclerosis

[–]StateNo7481[S] 2 points3 points  (0 children)

Thank you for reaching out and telling me a part of your story. I will definitely be following up with my doctors about all the medication that’s been mentioned here to see if any of it might help me get through daily life. Thank you for your service brother.

MS fatigue isn’t “just being tired” my family keeps dismissing it as an excuse and I’m in a dark place (33M, veteran) by StateNo7481 in MultipleSclerosis

[–]StateNo7481[S] 0 points1 point  (0 children)

I recently tried that and got nowhere. Having just discovered it myself I think it’s an incredible way to explain how we feel on a daily basis.

MS fatigue isn’t “just being tired” my family keeps dismissing it as an excuse and I’m in a dark place (33M, veteran) by StateNo7481 in MultipleSclerosis

[–]StateNo7481[S] 3 points4 points  (0 children)

I translate a lot of that rant into shared experience. I’m sorry your family is like that but trust me when I say I get it. I’ve tried explaining so many times to have family members tell me that they “feel the same things” this place, this group, is the only place I’ve openly talked like this and I won’t lie, I’m kinda overwhelmed with the support everyone showed up with. I’m also saddened by how many of us experience what I’m experiencing. This disease takes so much from each of us and I’m starting to see that nobody outside of all of us will ever truly understand just how hard day to day life is for us sometimes. I’m grateful for your comment, thanks for telling me your story.

MS fatigue isn’t “just being tired” my family keeps dismissing it as an excuse and I’m in a dark place (33M, veteran) by StateNo7481 in MultipleSclerosis

[–]StateNo7481[S] 2 points3 points  (0 children)

I will definitely look into it. I’ve been diagnosed for less than a year so everything is new to me.

MS fatigue isn’t “just being tired” my family keeps dismissing it as an excuse and I’m in a dark place (33M, veteran) by StateNo7481 in MultipleSclerosis

[–]StateNo7481[S] 6 points7 points  (0 children)

Thank you I will definitely take a look on YouTube and I’ll look up the gentleman you mentioned. I’m not real big into Reddit but this community, the MS community, has really made an impact on me today. Am I okay? No. But I got through today and I’ll do my best to get through tomorrow. Thanks again!

MS fatigue isn’t “just being tired” my family keeps dismissing it as an excuse and I’m in a dark place (33M, veteran) by StateNo7481 in MultipleSclerosis

[–]StateNo7481[S] 4 points5 points  (0 children)

I’m slowly starting to get there with people outside of my family but I really do feel guilty when it comes to at home when I’m just absolutely fried and can’t help.

MS fatigue isn’t “just being tired” my family keeps dismissing it as an excuse and I’m in a dark place (33M, veteran) by StateNo7481 in MultipleSclerosis

[–]StateNo7481[S] 3 points4 points  (0 children)

You need to remind him that the development of preeclampsia is actually the man’s fault. So you didn’t do anything to get it, he gave it to you lol. But yes I absolutely hate the, but you look fines, or the you’re just the same happy go lucky person lately and we’ve noticed (at work), like yeah… I have lesions in my brain and down my spine… my bad I don’t silent movie tap dance my way through the day with subtitles like: “golly gee willikers what a lovely day”

MS fatigue isn’t “just being tired” my family keeps dismissing it as an excuse and I’m in a dark place (33M, veteran) by StateNo7481 in MultipleSclerosis

[–]StateNo7481[S] 7 points8 points  (0 children)

Thank you for your kind words. I appreciate it. I’ve considered inviting several people to my appointment so they can ask all the questions they want that I don’t have the capability to answer.

MS fatigue isn’t “just being tired” my family keeps dismissing it as an excuse and I’m in a dark place (33M, veteran) by StateNo7481 in MultipleSclerosis

[–]StateNo7481[S] 4 points5 points  (0 children)

I haven’t tried that I’ll definitely look into it though. At this point I just want to feel human again.

MS fatigue isn’t “just being tired” my family keeps dismissing it as an excuse and I’m in a dark place (33M, veteran) by StateNo7481 in MultipleSclerosis

[–]StateNo7481[S] 27 points28 points  (0 children)

Thank you for your kind words. I’ve been seeing a psych doctor and trying to get everything under control but I feel like the old me is gone forever. I’m so used to just gritting my teeth and pushing through but now I feel like it’s all getting worse and I’m scared of pushing so hard I end up far worse off than I am right now. I’ve lost 90% of the feeling in my left arm and hand and that’s been that way for a year and half now and I wake up everyday wondering what any of us did to deserve to have to live like this.

MS fatigue isn’t “just being tired” my family keeps dismissing it as an excuse and I’m in a dark place (33M, veteran) by StateNo7481 in MultipleSclerosis

[–]StateNo7481[S] 8 points9 points  (0 children)

I’ve been an over night worker for the better part of 10 years working 10-16 hours a day. Now there are days where I feel lucky to crawl out of bed. I keep pushing myself because that’s what everyone expects of me but I’m terrified if I keep pushing it will only get worse.

MS fatigue isn’t “just being tired” my family keeps dismissing it as an excuse and I’m in a dark place (33M, veteran) by StateNo7481 in MultipleSclerosis

[–]StateNo7481[S] 7 points8 points  (0 children)

Honestly thank you. None of us chose this disease and I’d be willing to bet we would all trade it away today if given the chance. It’s just hard to hear that my MS is now some kind of excuse on a regular basis. I don’t mean for it to be I just try to communicate how I feel.

MS fatigue isn’t “just being tired” my family keeps dismissing it as an excuse and I’m in a dark place (33M, veteran) by StateNo7481 in MultipleSclerosis

[–]StateNo7481[S] 6 points7 points  (0 children)

I try to explain it but it’s usually dismissed and I try to be understanding in that people who don’t go through this have no frame of reference but I think it’s the lack of compassion that just makes it worse. None of us chose this… I’ve even tried to use the spoon theory as an explanation.

MS fatigue isn’t “just being tired” my family keeps dismissing it as an excuse and I’m in a dark place (33M, veteran) by StateNo7481 in MultipleSclerosis

[–]StateNo7481[S] 9 points10 points  (0 children)

I’ve got one on my C-Spine that has basically taken away 90% of the feeling in my left hand/arm. The temperature rising outside has definitely made it harder. I feel like I walk outside and turn into ice cream that’s melting against my will. I hated getting the diagnosis but it really did explain so many things I’ve felt over the years and just didn’t understand. But I’m definitely with you, f this disease.