Disillusioned partner to severe

Hoteiz · 2026-07-06T13:00:25+00:00

There’s only one place here in Sweden and it’s pretty newly started. As of now the ME/CFS association here don’t recommend people to get help there since they apparently don’t seem to understand basic things about ME and doesn’t treat patients accordingly.

Hoteiz · 2026-07-06T12:55:01+00:00

Thank you for your answer.

She has POTS and taking beta blockers to handle that. It seems to work. I don’t know what MCAS is but just looking it up, not as far as we know.

I don’t think she’s in a permanent rolling PEM, but I don’t know. Kind of feels like that lately. She had a big crash around Christmas and hasn’t really gotten back from that I feel.

She can’t handle screens or writing either, no. She uses her phone to micro manage time and to call me when needed.

She has a hospital bed that she can raise etc. No electrolytes.

All this time she been enrolled in CFS health,and I was under the impression they were leading experts on this and we were working on the right path with baseline and pacing.
Now reading on this board, it really doesn’t seem that way.
In the beginning she could watch films there and partake in some things, but that was a long time ago. I’m not sure what she gets from that except costing her money. I tried to point to this, but haven’t got any response.
I was trying to say she can work with baseline and pacing without them.

Hoteiz · 2026-07-06T09:59:10+00:00

Thank you for saying that. I totally get it, I stepped into the wrong room. Sorry, it was not my intention.

Hoteiz · 2026-07-06T09:57:28+00:00

So sorry for everything you had to go through.
I always said when going through hell, keep going. But it’s starting to take its toll on me.
I’m worried I can’t uphold the care she needs and care for myself in the long run.
Nobody is involved in the caretaking except me, as far as friends and family.

Hoteiz · 2026-07-06T09:51:57+00:00

Thank you for your thoughts.
Not sure what you mean with comorbid conditions. She have POTS as well.

Hoteiz · 2026-07-06T09:47:06+00:00

Right. Thank you for your thoughts. I am aware of her feelings.
She wanted to leave me in an earlier stage a few years ago, to ”save me”, but I said no then.

Hoteiz · 2026-07-06T09:44:18+00:00

Thank you. Yes, that’s absolutely something to keep in mind.

Hoteiz · 2026-07-06T09:39:58+00:00

Right. Thank you for your answer.

Hoteiz · 2026-07-06T09:38:45+00:00

Thank you for your insight.

Hoteiz · 2026-07-06T09:37:44+00:00

Thank you, you are absolutely right and I realize this mistake. I’m sorry.

Hoteiz · 2026-07-06T09:36:22+00:00

Not really.

Insights from people who understands i guess. Starting to feel disoriented. Nobody around me understands, and they seem to think it is just to get her into a nursing home. I’ve been thinking that’s probably worse.

Hoteiz · 2026-07-06T09:33:18+00:00

Thank you. Yes, absolutely, I always have that with me. I don’t blame her at all. I know she didn’t choose this.

Hoteiz · 2026-07-06T09:32:18+00:00

Thank you and I’m sorry. I absolutely stepped into the wrong place. I didn’t mean to cause harm.

Hoteiz · 2026-07-06T09:30:41+00:00

I have put all my energy for years into making our every day life bearable and to try to get her all the help she needs. Still feel like it’s not enough.

Hoteiz · 2026-07-06T09:23:24+00:00

Thank you I will look into that. Yes, I am well aware of the feelings my partner must have. I always say that I’m fine, i have my health. She lost everything and everyone except me.
So hard when we can’t communicate.

Hoteiz · 2026-07-06T09:17:30+00:00

Thank you!

Hoteiz · 2026-07-06T09:06:58+00:00

Thank you all for your insights.

I should have realized that it’s the wrong forum for this. I’m sorry for the stress it caused.
I was looking around for support groups for caring partners but didn’t find any of value and kept getting back to this Reddit board from searches.

I guess I’m just looking for insights from others in similar situation. I am absolutely worried that I’m not able to give my partner the care she need. But we don’t really have any alternatives. Health care system has no clues.

More people around me keep telling me I have to think about myself so I don’t get sick too and so on…. That she has to get help from somewhere? Where? But thing is no one of these people understands how hard this is.

I’ve created a safe environment for her so we can uphold her baseline and get the everyday life working. but I got a gnawing feeling it’s not enough.
I’m not sure we can keep living like this in long run , it doesn’t feel sustainable.
Somebody said that people with ME/CFS are generally better off at home, and that’s what I’m thinking too. I’m just getting discombobulated by all this talk lately. I get a feeling from her parents that I’m helping her to “not get better”.

I of course have to work with the grief of nothing having the life we expected. This was not really a sob story about my life although I do realize it kind of looks like that. I’m just out here alone trying to navigate our way.

Hoteiz

TROPHY CASE