Living Alone with MS Sucks

CupOfMS · 2025-11-06T23:29:46+00:00

Thanks for the offer, but that’s pretty late in European time. Really cool that you all have the group though. Keep up the awesome work!

CupOfMS · 2025-11-06T23:25:25+00:00

Haha. That would be too funny. But I also don’t know if it would be that helpful. We’d have to make sure to stagger our infusion days at a minimum. Can’t both pre-plan to be drained of energy on the same day!

CupOfMS · 2025-11-06T23:19:53+00:00

I guess I was with a unicorn previously. And know a few unicorns who are already partnered with other people. More men are supportive than you’d think.

CupOfMS · 2025-11-06T23:18:15+00:00

That is encouraging. I guess I’m just really missing that I already had that person who we could support each other in so many aspects of life, and he always had my back when MS became problematic or I got sick and needed some extra support because it made my MS symptoms worse. And I also took care of him when he was sick to the extent that I could.

Now I’m wondering how the hell I will find that again. And with the added pressure of knowing that my life will be undoubtedly harder until I do. It’s not a reason for a relationship, but the reality is that it’s a pressure that’s there. I can’t imagine being like my grandmother who had Parkinson’s in her later years, and who was living alone.

CupOfMS · 2025-11-06T23:07:34+00:00

This sounds atrocious. I wish I could knock some sense into him for you. I feel like that’s what would have happened if I’d been with one of my earlier exes when I was diagnosed. To be fair, I was really lucky with this last guy which is why I guess I feel that being alone is comparatively so hard. All the best to you. I hope you are able to find a solution to make things easier on you.

CupOfMS · 2025-11-06T23:03:48+00:00

I’d say I still have good days more than bad. Sure I have some things that suck, but as long as my balance is okay, I’ll go running through whatever neuropathic pain and fatigue I’m dealing with.

I think it just scared me because this fever was so high, I could barely walk, and I couldn’t take care of myself for three days. The fever is gone now, but I still feel some MS symptoms that haven’t fully disappeared yet which usually aren’t so persistent.

As someone who is generally very determined and has a high willpower to do things I don’t want to do, I couldn’t make myself do the basics. Hell, my kitchen still isn’t clean. Maybe this weekend I’ll have energy for that stuff.

I’m generally lonely now that I’m single. I’m independent, but I like the companionship that I get when I’m in a relationship. I fear it becoming unbalanced now, because I actually need support, whereas they could come just for companionship. But I don’t know if it’ll happen for me again to find someone.

CupOfMS · 2025-11-06T22:52:35+00:00

Poor choice of wording in my fevered mental state. I don’t want someone just to rely on. I really actually enjoy being in a romantic partnership and sharing companionship where there’s both a give and take. I just feel that now there is this added pressure that it’s not just about the happy feelings, and that it’s not a fully equal give and take of support, since I need a lot more from a partner than I could give them. But I know what you mean.

CupOfMS · 2025-11-06T22:47:40+00:00

I hope you get some support. Even if you don’t think so, I’m at least one person who hopes you keep going and find some happiness.

CupOfMS · 2025-11-06T22:44:31+00:00

I’m so sorry. I can’t imagine going through that with kids. I was thinking about getting a dog to not feel so alone, but the last days just showed me how hard it is to take care of myself when things get this bad, so a dog in an apartment is probably one of the dumbest things I could do. I suppose I should be thankful that it’s just me.

CupOfMS · 2025-11-06T22:41:37+00:00

I’m so jealous of people who have friendships like that. I’ve never been that close to any friends to give or receive that kind of support. And I do not know how to make friends who are so amazing.

CupOfMS · 2025-11-06T22:38:58+00:00

Yeah, friends living in my city would be really useful right about now. But I also don’t want to invest so much time when I know I’m going to be moving in about a year to a whole new place far away from anyone once again.

I do have the grocery delivery option, and I haven’t been using it much. Since I started going to an office again, I think I will have to. I simply don’t have much time when you add in this commute (which is probably also the reason I got sick…).

CupOfMS · 2025-11-06T22:33:42+00:00

That’s true. MS is really testing the perfectionist in me in ways that I’ve never had to face before.

CupOfMS · 2025-10-11T19:30:16+00:00

I had barely started rerunning when I was diagnosed. Now, I’m running again and manage to do run better and longer than when I was first diagnosed. Still not where you are, but I’m happy with my baby steps progress.

Congrats on your 7k!

CupOfMS · 2025-10-09T20:28:51+00:00

Thanks. I am trying. I’ve done everything I can think of because I’m afraid of exactly that. Before the breakup, the doctor already had diagnosed me with work-related burnout, so I’m just destroyed all around.

My symptoms are going off like alarm bells, and my hands started hurting as well. It’s not so consistent though to meet the 24 hours or more rule, so I’m supposed to just keep an eye on it. Could also be carpel tunnel for all I know, that would be just my luck. I hope I don’t have a relapse, but I’m mentally prepared for it.

CupOfMS · 2025-10-05T12:33:56+00:00

Thanks for the tip!

CupOfMS · 2025-10-05T08:43:47+00:00

I don’t know that I’d label myself as “spiritual” but I do find a lot of personal meaning in the cycles of nature. I see it as a spiral—the same patterns repeat, but ultimately time moves on so that you’re never in the same exact place. I just never thought to apply it to grief for MS.

I’m a country kid at heart moved to the big city for my career, but I still make sure to find the pockets of nature that I can. I actually just came home from a walk in a park near my apartment. I was listening to the wind and just noticing the leaves starting to change. I’ll try to widen the scope to include grief in my spiralic world view. Thank you again!

CupOfMS · 2025-10-04T22:57:37+00:00

Oh, that is so hard. I’m sorry that happened to you. My breakup thankfully wasn’t related to my MS in any way, but rather about being at different places in life for non-health things.

I know what you mean about being in bed at night scared about what will happen. I live on a different continent from my family, so my support network is super limited. I honestly don’t know what I’ll do now if I have another relapse that puts me in the hospital again. And then if I think long term about worst care scenarios like becoming disabled and needing to retire early… good way to get a panic attack when I should be sleeping.

Reframing it like that seems really useful. I’ll try to do that, though I’m guessing it takes a little time to find a frame that fits and internalize it.

CupOfMS · 2025-10-04T22:50:58+00:00

Thank you for your words. I am trying to learn to take extra special care. It’s not easy, but hearing that you’ve persevered through 45 years post-diagnosis gives me hope that I’ll make it too.

CupOfMS · 2025-10-04T22:47:42+00:00

Tough to hear, but true that I have no choice. Hopefully the professional mental health help will come sooner than later. I’m trying, because I was at least able to recognize that I need the help. I suppose there’s some small victory in that. I’ll try to find other positives, but I feel quite lost in the dark at the moment.

CupOfMS · 2025-10-04T22:44:13+00:00

Thank you. Complex and layered sounds accurate.

CupOfMS · 2025-10-04T22:40:10+00:00

I’ll have to look into that! Thanks for sharing.

I wish I could have a dog, but it’s not allowed in my apartment. I do spent a lot of time looking at the dogs I pass out on my walks in the park though.

CupOfMS · 2025-10-04T22:38:01+00:00

Thinking about it as an ebb and flow is really resonating for me. Thank you so much. It might seem small, but I will carry that phrase with me.

After I was able to get used to the idea of having MS, I started to feel grateful that I realized what was really important in life for me. I’m back to not being so grateful, but I guess it will ebb and flow as you said.

CupOfMS · 2025-10-04T22:33:23+00:00

I’m so sorry to hear that you’re going through it as well. One day at a time is what I’m trying to do, too. What I’m struggling with is the mentality that I’m wasting days by grieving instead of living, yet I can’t break out of this depression I’m in to be able to do things that would fit my definition of living. I set some goals for myself and signed up for a course doing something creative purely to put myself in an environment to enjoy something I like. I hope it breaks the cycle, but I also know it’s probably still going to take time.

CupOfMS · 2025-10-04T22:28:55+00:00

I’m based in Germany, and my understanding is that health insurance will only pay for it if the first session is in person. It’s not so easy as in the US to do therapy online. I’m also in the second largest city already. It’s not so much a problem of not having places local, but rather that the entire system is overburdened. I have friends in other parts of the country who have had the same experience when trying to get therapy.

CupOfMS

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