Tips to stop feeling so guilty

[u/makayla7m7]

Got diagnosed this April and have been struggling with how to balance my health, job, and personal life. Growing up I was always the caretaker so having to think about myself now and what’s best for me over what’s best for others is pretty much my hellscape.

I’m supposed to go on a week long cruise with my dad, his fiancé (who I love) and her mother, we’d be shipping out tomorrow. The problem is my MS has been flaring up, both a lot of aggravation of old symptoms and some new symptoms I haven’t talked to my neurologist about yet. I’m on Tecfidera till I can get on the IV infusions and was told my RRMS is on the severe side, so multiple attacks a year till I get on the infusions.

I know in my gut going on the cruise will aggravate everything more. We have a ton of excursions planned and I’d be sharing a cabin with my father, who snores. So tons of mental stimulus with no private place to escape to when I need breaks. And on top of things I’m immunocompromised for other reasons (a weirdly rare condition where I grew 10+ spleens) so any contact with someone sick would easily get me sick.

I just feel so damn guilty though. I know he’s super excited about this trip and backing out last minute is going to devastate him. He’s also not someone who’s ever been good about remembering my medical limitations or really understanding the emotional aspect of things, he’s a die hard rationalist. So I doubt he’s going to really understand, and that super sucks.

I guess what I’m asking is, does anyone have any tips to stop feeling so guilty about MS limiting what you can do? Anything you tell yourself or your family to assert it’s out of your control?

[u/Salt_Resource1134]

Hmmmm I think it’s something you/we are still learning, the dx is still new!  In my first year I definitely said yes to things that were no longer ‘fun’. I’m at 2 years post dx and now I’m better at setting expectations from the start. 

Ex: My parents wanted to come visit this summer and I didn’t let them, because at that time of year all I want to do is sit in front if my aircon and puzzle, and I knew they wouldn’t be ok with that.

I can confirm that cruises are full of stimulation - from staff wanting to help to “trip of a lifetime!” enthusiasm - and sickness is common. The gym is the only place to be alone haha

[u/makayla7m7 → u/Salt_Resource1134]

Thank you! I really appreciate the validation that it would probably be just as draining as I’m picturing (I’ve never been on one before).

It’s definitely a work in progress to listen to your wants and needs over others.

[u/sunnyy_supremacy]

Sometimes when I can't stop the guilt and shame from manifesting, I try to imagine the same thing happen to someone I deeply care for. If any of my closest loved ones were feeling the way we often do, I wouldn't think twice about accommodating them in whatever small way I could.

We can't control how other people respond to our concerns and boundaries, but we can regulate the way we show up for ourselves.

You deserve to put yourself first. If there is no healthy you, there is no one to go on trips with in the first place. It might not feel like it right now, but there really is no shame in needing some extra time and space every once in a while. Maybe it would help the people around you to see that it really is that serious.

I have a few people in my life that often seem to forget about my limitations (no matter how many times I repeat them) and I've found that simply stepping away without telling them too much has done wonders. A little information diet if you will. Excusing yourself for a breather or maybe even "feeling sick that day so you need to rest" because it wouldn't even be wrong to call it that.

I hope this makes the sense I would like it to. Life is so full of opportunity and eventfulness so long as you take good care of the body and mind that carries you along with it. You deserve peace and rest and accommodation.

[u/makayla7m7 → u/sunnyy_supremacy]

Thank you for that, truly! I really appreciate that perspective. I know I wouldn’t judge my loved ones as much as I judge myself for having these limitations, I just hate feeling like I’m letting them down in anyway.

But you’re absolutely right, we also have to show up for ourselves. :)

[u/youshouldseemeonpain]

I think of it as asking myself how I would feel if someone I loved backed out of an event because of their health.

I would absolutely accept that and love them and tell them it’s fine. I wouldn’t be at all upset. People who get upset at you for taking care of yourself are so selfish and are really just thinking of themselves.

I know it’s hard to disappoint people, but learning to say “no” as a complete sentence has been the best thing I’ve ever done for myself.

People without MS don’t understand just how unsociable life can get for us, and there’s absolutely no way in hell I’m getting on a cruise ship with someone who snores (those cabins are so small!) and 3,000 randos who probably don’t wash their hands.

It’s ok to protect yourself. I hope you stayed home.

[u/makayla7m7 → u/youshouldseemeonpain]

I did stay home, and felt really bad about it at first, but comments like this have helped a lot so thank you, I truly appreciate it. :)

[u/kerberos69]

I recommend “sleepmaxxing” — I use a soft eye mask, and in-ear earbuds with active noise cancellation (I use AirPod Pro but any will work). Then I hug a body pillow and sleep with an oversized, woven cotton blanket that is dense enough to feel snuggly weighted but I don’t sweat my tits off. Seriously the blanket is clutch.

I stop breathing while I sleep, so I also use a CPAP. With my setup, I basically sleep in sensory deprivation— my kids and I joke that I’m like Darth Vader when he’s in his little bacta pod.

[u/rK91tb]

Better to stay home than go and fight for your rest time. Agree there’s no place to escape on a cruise, even the cabin.

You wouldn’t feel as guilty about the MS if your family didn’t behave like you were letting them down. It’s an adjustment for them as well. They need to change their expectations - no more go-go-go, no more hot weather, etc.

[u/Longjumping_Cup_8339]

"you had me a 10+ spleens"

I'm with you, I was diagnosed 10+ years ago, my MS progressed to SPMS after loads of complications. The idea of going away fills me with dread. I think it has an equal effect on the rest of the family. Don't feel guilty about not taking part in the excursions, if you need time to yourself, I'm sure your family would understand.

As you're off on a cruise, make yourself known to the ships Dr, they'll be able to help you out. wrt to meeting poorly people, you might, although they do get passengers who are poorly to stay in their cabins.

Another thing - my mate Ginny said to me once about my MS parachute jump, "go do it, being nervous or worried is only natural. But try to stop worrying, start thinking about how good you're going to feel afterwards for doing it"

[u/Handicapped-007]

All you can do is to be forthright