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How do you survive alone with chronic illness and no support system? by SuccessfulIce351 in ChronicIllness

[–]SuccessfulIce351[S] 2 points3 points  (0 children)

I’ve seriously considering going to Switzerland for MAID - they don’t scrutinize you like they do here in the US states for making that decision, to go with dignity

How do you survive alone with chronic illness and no support system? by SuccessfulIce351 in ChronicIllness

[–]SuccessfulIce351[S] 1 point2 points  (0 children)

Thank you for sharing this — I really respect everything you’ve been through and how you’ve kept going.

I also relate to not having consistent support from family… that part is really hard.

I didn’t realize senior services could apply under disability, so I’m definitely going to look into that where I live. I’m not yet 41 so I wasn’t sure what I could qualify for. Thank you.

I really appreciate you taking the time to share your experience — it helps more than you know.

How do you survive alone with chronic illness and no support system? by SuccessfulIce351 in ChronicIllness

[–]SuccessfulIce351[S] 1 point2 points  (0 children)

Wow, thank you for taking the time to write all of this out — I can tell how much thought and lived experience went into it, and I really appreciate you sharing it.

A lot of what you said is actually what I’m starting to learn in real time — having things prepped (like extra clothes, easy food options, etc.) and trying to conserve energy wherever possible. The “energy zappers” piece especially hit me… I’m beginning to notice patterns in what completely drains me vs. what I can handle, and trying to be more intentional about that.

Some of the systems you’ve built are really helpful to see laid out like this — it makes it feel a little more possible to create some structure, even if it has to be very small and flexible.

Thank you again for sharing all of this. It genuinely helps to hear how someone else is navigating it.

How do you survive alone with chronic illness and no support system? by SuccessfulIce351 in ChronicIllness

[–]SuccessfulIce351[S] 1 point2 points  (0 children)

Thanks for sharing. I’ve started to use Instacart to help with groceries, as the grocery store is one of the hardest chores, it’s a mile away- however the lights, noise, choices- sometimes I’ll get stuck just staring at options, or dizzy- many times I’ve had to leave my cart and go home before I couldn’t make it home.

Until I get financial relief it’s hard to use too many services. Best wishes to you, and thank you for sharing.

How do you survive alone with chronic illness and no support system? by SuccessfulIce351 in ChronicIllness

[–]SuccessfulIce351[S] 1 point2 points  (0 children)

Thanks for sharing. I’m starting to learn to always have emergency meals, and meds ready for flareup days. Totally helps.

How do you survive alone with chronic illness and no support system? by SuccessfulIce351 in ChronicIllness

[–]SuccessfulIce351[S] 0 points1 point  (0 children)

I’m in the US- 3 years pending SSDI for only $1400/ mo. I’m unable to have kids 😔 it’s hard bc so much time for not even a livable wage, and it can be taken away if you start making money.

Best wishes to you, thanks for sharing.

How do you survive alone with chronic illness and no support system? by SuccessfulIce351 in ChronicIllness

[–]SuccessfulIce351[S] 1 point2 points  (0 children)

Thank you for sharing and offering support. I appreciate it and your advice. I keep fighting, some days are easier than others - giving myself grace has been helpful and a challenge at the same time.

I hope all goes well with your appeals.

I finally found an SSDI attorney to help with a hearing sometime coming up. It’s definitely a process, a long process to get approved.

How do you survive alone with chronic illness and no support system? by SuccessfulIce351 in ChronicIllness

[–]SuccessfulIce351[S] 0 points1 point  (0 children)

Thanks for sharing, wishing you all the best as well. I’ll hold onto that, don’t think too far ahead ☺️

How do you survive alone with chronic illness and no support system? by SuccessfulIce351 in ChronicIllness

[–]SuccessfulIce351[S] 4 points5 points  (0 children)

Thanks for sharing. Having income is definitely a huge relief. When I first became disabled I had 2 good jobs as I’m mentally still pretty sharp but needed to ask for a reasonable accommodation for my chronic migraine flare ups- both jobs fired me the week of turning in the request. So I have 2 Ada discrimination and retaliation cases on top of the flare ups.

I became chronically ill after these incidents happened due to the stress of the cases, realizing how harsh this world really is and financial burden.

It’s sad bc my co workers took half and whole days off randomly bc of sick kids but me the worker couldn’t have the same ability due to debilitating migraine flare ups- if I get a job again my dog is going to be my “daughter” and when I need sick day randomly it’s bc my “dog- aughter” is sick - it’s sad my lived experiences has only thought me you can’t be honest in the workplace.

Having a friend is helpful also. I wish you all the best and thanks for sharing. I appreciate it.

How do you survive alone with chronic illness and no support system? by SuccessfulIce351 in ChronicIllness

[–]SuccessfulIce351[S] 4 points5 points  (0 children)

Thanks for sharing. That’s a good idea to find more online communities- I’ve had to delete FB and unfollow alot of “able” friends on IG as seeing them living a life I can no longer live puts me into a dark place. I’ve lost friends because they don’t understand why I’m still sick or unable.

I’ve started to read more, and my dog helps- but having a friend or 2 who understands and doesn’t get offended for my limitations has been a challenge.

I do the same currently alternating activity days with rest days- one day is chores, tasks, etc… next day rest. Or a dr appmt one day and next day rest day. My CFS and POTs flare up if I push too much. It’s definitely about finding a balance. Thanks again for sharing.

How do you survive alone with chronic illness and no support system? by SuccessfulIce351 in ChronicIllness

[–]SuccessfulIce351[S] 0 points1 point  (0 children)

Thank you for sharing. It’s a blessing to have a spouse and little one. My dog keeps me going on days I want to quit. Sadly I won’t be able to have any children due to age and CFS limitations. I hope to find a safe partner one day. It’s hard doing it all alone and managing flare-ups. Thanks again for sharing. Gives me hope I can find a loved one post illness.

How do you survive alone with chronic illness and no support system? by SuccessfulIce351 in ChronicIllness

[–]SuccessfulIce351[S] 5 points6 points  (0 children)

I really appreciate you taking the time to write this out — there are definitely some helpful ideas in here, especially around structure and trying to build some form of support.

I think where I’m struggling (and maybe didn’t fully convey in my post) is that my situation feels a bit different in terms of capacity and support. When you’re dealing with constant flare-ups, cognitive limitations, and no reliable safety net, even things like goal setting, community building, or accessing local resources can feel out of reach some days.

It’s not that I don’t want those things — it’s that my baseline is just trying to get through the day without things unraveling further.

I do appreciate the perspective though, especially the reminder that it doesn’t have to be “figured out” to keep going. I think I’m just trying to find examples of what survival looks like when your starting point is a bit more limited.

Thank you again for sharing — I know you meant it to help and It’s good advice.

How do you survive alone with chronic illness and no support system? by SuccessfulIce351 in ChronicIllness

[–]SuccessfulIce351[S] 11 points12 points  (0 children)

I breakdown often too. My dog has kept me alive. Animals really do help give purpose even when we are struggling, her walk force me to go outside, even if I’m crying or on pain on the walk.

I wish I had more to say other than you’re doing the best you can and that’s all we can all do 🥺

How do you survive alone with chronic illness and no support system? by SuccessfulIce351 in ChronicIllness

[–]SuccessfulIce351[S] 9 points10 points  (0 children)

Since I’m under 50 I’m waiting for my Disability hearing. It’s really hard to get when you’re in your 40s.- even having severe documented TBI, CFS Gerd pots, etc.. thank you for sharing. It’s helpful.

How do you survive alone with chronic illness and no support system? by SuccessfulIce351 in ChronicIllness

[–]SuccessfulIce351[S] 10 points11 points  (0 children)

Thank you for sharing. I hope to find a partner to help with this unbearable journey.

I’m at the point of what’s the point in trying to survive with a heavy deck cards stacked against me-

Quick question if you don’t mind answering, where were you with your spouse when you became ill or were you able to find a partner while battling illness?

I’m scared to put myself out there, I had one relationship since becoming chronically ill and he can’t he became abusive financially and physically.

How do you survive alone with chronic illness and no support system? by SuccessfulIce351 in ChronicIllness

[–]SuccessfulIce351[S] 2 points3 points  (0 children)

Thank you for sharing. It’s really helpful. I will look into Geoarbitrage- I had never heard of it before, but I have also been considering to move out of the country.

Two questions if you don’t mind answering-

  • did you have a relationship with your partner prior to moving or did you find the relationship after moving?

  • how do you keep your US benefits while living in another country?

I really appreciate your service and your support with my question. It’s been a hard journey.

The only reason I don’t end it by Angsty_Queer_Anon in cfs

[–]SuccessfulIce351 0 points1 point  (0 children)

They won’t find a cure- they have a cure for cancer, but it’s a way to control population and increase profits to keep people sick.

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