[Harriet]

27 minutes ago, Mad Hatter said:

Yeah 100 euros is absurd. But I wouldn't worry so much about how much is markup because it's kind of irrelevant. There are plenty expensive brand name leggings that feel horrid and cheaper ones that feel fine. And if you find more expensive ones wait until they're on sale.

 

So, no shortcut, just try some. Makes sense. 

 

27 minutes ago, Mad Hatter said:

Now I'm curious, who's your lifting guru? ? It seems a very reasonable take and applicable for both athletes and recovering from sickness.

 

Mike Israel/RP strength. Seems to be evidence based. Not that I can put any of it into practice while I keep crashing. I have a lot more theoretical knowledge than practical experience at this point. Saaaaaad. Oh, and if you decide to watch his YouTube videos I take absolutely no responsibility for any shock or offence you might suffer. He's a very offensive and inappropriate man. He just happens to know about lifting. 

 

 

[Mad Hatter]

13 minutes ago, Harriet said:

So, no shortcut, just try some. Makes sense. 

Alas.

 

13 minutes ago, Harriet said:

Oh, and if you decide to watch his YouTube videos I take absolutely no responsibility for any shock or offence you might suffer.

Lol I'm not so easily shocked but thanks for the warning. ?

[Harriet]

6 minutes ago, Mad Hatter said:

Alas.

 

Lol I'm not so easily shocked but thanks for the warning. ?

 

If you want a more comprehensive guide with no sexually depraved jokes, the scientific principles of strength training and scientific principles of hypertrophy are the two books they put out. Very good.

[Mad Hatter]

36 minutes ago, Harriet said:

If you want a more comprehensive guide with no sexually depraved jokes, the scientific principles of strength training and scientific principles of hypertrophy are the two books they put out. Very good.

Since I tend to ignore all sensible advice anyway I won't read them at this point in time. ? My personal strategy is completely inverting the training pyramid and focus entirely on the fun specialized things and ignore the basics like eating sensibly. ? I'm sure it will change one day.

[Harriet]

6 minutes ago, Mad Hatter said:

Since I tend to ignore all sensible advice anyway I won't read them at this point in time. ? My personal strategy is completely inverting the training pyramid and focus entirely on the fun specialized things and ignore the basics like eating sensibly. ? I'm sure it will change one day.

 

No worries my approach is read all the fine details about optimisation for advanced lifters and then fail to even put the basics in place because I'm too sick to even show up consistently, let alone do any sort of effective volume. 

[Laghail]

8 hours ago, Harriet said:

Added a mini workout and a meditation yesterday. 

 

The vet confirmed my understanding of the situation--it is likely feline idiopathic cystitis (but we need a urine sample when Orange is healthy to rule out kidney insufficiency) and this is a chronic condition that is primarily managed by stress reduction. Important points are: I can give her the painkiller at home next time she gets it, and I don't necessarily need to bring her in for an appointment if nothing new is happening. But the painkiller itself impairs kidney function, so prevention is preferable and it shouldn't be given more for days than necessary. The rule she gave me is give it until symptoms are gone, then +1 day. I got an info sheet and website recommendation for reducing stress. Orange is lazy and doesn't like playing, but I shouldn't have given up so early--I will find other ways to enrich the environment.  They also gave me a bladder health supplement to put on her food, and a pheromone diffuser to reduce stress, and they even recommended I hire a cat behaviourist to look at the apartment. Lastly, they agreed that wet food helps, if the cat doesn't drink a lot of water.

 

ETA Orange is fine at the moment. She's quite comfy with the painkiller. My main job is arranging the apartment and routine to lower her stress.

 

Pretty impressed with you TBH. You're managing life on Hard Mode and showing a lot of grace. Is dad gone home yet? 

 

8 hours ago, Harriet said:

Yes, travel is stressful for me. But it's something I'm willing to prioritise for Mr Harriet. It's also probably mentally healthy to not just be in the same room in the same house every day of my life.

 

I mean, you not wrong, and prioritizing your partner is a good thing. Buuuuut if you need to not travel for a bit while you get your arms around your current bodily needs, shrug. You're the boss tho, I trust your own assessment of spaceship Harriet. 

[Harriet]

13 hours ago, Laghail said:

Pretty impressed with you TBH. You're managing life on Hard Mode and showing a lot of grace.

 

Thanks ?

 

13 hours ago, Laghail said:

Is dad gone home yet? 

 

No but he's keeping himself busy generally, and now he's vacuuming. We're doing breakfast and dinner together, and watching mandalorian after dinner. During the day, sitting in a different room or putting headphones on creates a "don't talk to me about every little thing that you're reading or that's on your mind--I'm not endlessly available for conversation" sort of barrier. 

 

It's not ideal. I would prefer to have more energy to do more interesting stuff with him. But those are my preferences; he's very tolerant of whatever situation he's in and this is enough for him, as he reassures me repeatedly. 

 

13 hours ago, Laghail said:

I mean, you not wrong, and prioritizing your partner is a good thing. Buuuuut if you need to not travel for a bit while you get your arms around your current bodily needs, shrug. You're the boss tho, I trust your own assessment of spaceship Harriet. 

 

Our next trip is for Christmas. Three weeks somewhere warm. So I've got a few months. Not that any amount of time will help me get a handle on anything. I'm not getting better, nothing I do helps, and about half my time is crash time and this appears to be unpreventable and occurs in two or three week blocks with two or three week blocks of being relatively okay. I could refuse shared activities like travel and outings, but my relationship would decay, and for no improvement in my health--just for temporary reprieve from effort. I guess you can see why I said I'm willing to spend my limited energies on occasional travel and outings. What else would I be doing? It's not like I can trade travel for an improvement in health. It doesn't work like that. I'm equally likely to crash at home for no reason. The time I need between travels is more about recovering mentally from the effort and crashes so I don't feel burned out and I'm willing to try again. 

[Mad Hatter]

Your dad sounds very kind. 

[Harriet]

3 minutes ago, Mad Hatter said:

Your dad sounds very kind. 

 

He absolutely is. He put us first, always. Which is why I feel so crap about being annoyed with him. He's a really nice guy, he just wants to share random information and thoughts all the time, and he *cannot* be taught that sometimes people are not interested. He doesn't gauge other people's interest and adjust. He just keeps giving information. He doesn't take hints. So you have to be incredibly direct and say "I don't want to hear any more about that" or "Not now, I am walking from the bathroom to my room in a towel, speak to me in a minute when I am dressed" or "Please stop telling me about the microViome, I literally just told you goodnight and now nothing can stop me from going to bed." And you can't just do it once. You have to do it over and over because he doesn't learn or adjust. 

[Mad Hatter]

Maybe it’d be less frustrating if you thought of him like an excited puppy. ?

[Harriet]

1 minute ago, Mad Hatter said:

Maybe it’d be less frustrating if you thought of him like an excited puppy. ?

 

It is like that. I'm not mad at him. I just get overwhelmed. With high fatigue, taking in a lot of information can become overwhelming, then painful and distressing. I'm more mad at myself because I have to continually be the bad guy and say no, stop talking, not now, shush, I'm going over here to be alone. All this boundary setting and policing makes me feel pretty bad. Of course boundaries are good, but it's not nice to be the one who is always saying no. 

[Everstorm]

6 hours ago, Harriet said:

he *cannot* be taught that sometimes people are not interested. He doesn't gauge other people's interest and adjust. He just keeps giving information. He doesn't take hints.

 

My mother is the same way, still talking away as I get into my car and put the keys in the ignition....

[Mad Hatter]

6 hours ago, Harriet said:

It is like that. I'm not mad at him. I just get overwhelmed. With high fatigue, taking in a lot of information can become overwhelming, then painful and distressing. I'm more mad at myself because I have to continually be the bad guy and say no, stop talking, not now, shush, I'm going over here to be alone. All this boundary setting and policing makes me feel pretty bad. Of course boundaries are good, but it's not nice to be the one who is always saying no. 

I get it. I know that you know this, but I'll keep reinforcing that it doesn't make you a bad person. You're doing the right thing. It might not feel like it but you're really protecting your relationship.

[Harriet]

13 hours ago, Everstorm said:

 

My mother is the same way, still talking away as I get into my car and put the keys in the ignition....

Noooooo that's terrible ? I just want a clean goodbye where I know what's happening next! 

 

13 hours ago, Mad Hatter said:

I get it. I know that you know this, but I'll keep reinforcing that it doesn't make you a bad person. You're doing the right thing. It might not feel like it but you're really protecting your relationship.

 

Thank you. I actually hadn't thought about it like that. I was just thinking of protecting my energy. Because I will give up energy for socially necessary purposes to a point, but when my energy drops below a certain red line something flips and I start doing socially unacceptable things to protect myself like sitting down on the floor like a weirdo in shops. 

[Harriet]

Gym Garnet: 4
Sauna Star Sapphire: 3

Paint Pearl: 3
Mindfulness Moonbar: 13

***** Diamond: 7

 

The infection that's been lingering for the last week and a half got worse yesterday and I felt quite unwell. But I think this means it will be better soon. To my collection I added only a mindfulness moonbar. My brother sent me a non-sleep deep rest track ("protocol" lol) by a certain husky voiced health influencer so I tried it. 

[Everstorm]

8 hours ago, Harriet said:

"protocol" lol) by a certain husky voiced health influencer so I tried it. 

How did it go?

[Harriet]

34 minutes ago, Everstorm said:

How did it go?

 

It didn't feel remarkable when I was doing it, but I was undeniably calm afterwards. Obviously we need a lot more data.

[Harriet]

Still alive. Dad is still here and I'm still sick. Thinking a lot about the fact that I used to do more. Was I less tired? Or just less kind to myself? I have some lingering worry that my decline is due to resting too much and not pushing myself. But maybe it would have happened anyway. 

 

Or maybe I got permanently worse from pushing *too hard* like literally every information source on cfs says. 

All I know is I'm worse. Resting doesn't make me better, pushing doesn't make me better, and I don't know how to proceed. 

[Mad Hatter]

Big hugs!

[Laghail]

6 hours ago, Harriet said:

Still alive. Dad is still here and I'm still sick. Thinking a lot about the fact that I used to do more. Was I less tired? Or just less kind to myself? I have some lingering worry that my decline is due to resting too much and not pushing myself. But maybe it would have happened anyway. 

 

Big hugs. I feel dumb for suggesting this, but have you had any luck in seeing a specialist? Not for the "miracle cure" angle, but for some input on exertion patterns that have worked for other people in the same diagnosis-family? Apologies if you already have, you're so pro-active it's hard to imagine you haven't already thought of this. 

 

6 hours ago, Harriet said:

All I know is I'm worse. Resting doesn't make me better, pushing doesn't make me better, and I don't know how to proceed. 

 

That's agonizing. 

Zero guarantees, but if you're okay with it, Laura offered to ask her provider who specializes in CFS for any German recommendations. Very understandable if you've already gone this route and don't need daft American's mucking about in Deutsch medicine.

[Harriet]

8 minutes ago, Laghail said:

Big hugs. I feel dumb for suggesting this, but have you had any luck in seeing a specialist? Not for the "miracle cure" angle, but for some input on exertion patterns that have worked for other people in the same diagnosis-family? Apologies if you already have, you're so pro-active it's hard to imagine you haven't already thought of this. 

 

I'm not sure what specialist I'd be looking for. I went to the Charite--they have a section that deals with CFS--and they tested and diagnosed me with POTS, a mild immune defect, and chronic fatigue. They don't treat people. I went to a cardiologist and they noted my tachycardia and told me to do some exercise. I went to this fatigue doctor (actually a Heilpraktikerin--a sort of alternative functional doctor) and she gave me a fucktonne of supplements and the hypoxia, infusions, and so on. No improvement. Other than the Charite, the only other non-alternative place I found is a children's hospital in Munich. I am not a child so it's not for me. I don't really know who else I would go to. Maybe a different cardiologist could treat the POTS, at least. 

 

8 minutes ago, Laghail said:

Zero guarantees, but if you're okay with it, Laura offered to ask her provider who specializes in CFS for any German recommendations. Very understandable if you've already gone this route and don't need daft American's mucking about in Deutsch medicine.

 

That's very kind of you both. I am open to suggestions. 

I suspect that, since there is no cure and no approved treatment, my best bet is learning to manage it, reducing my crash triggers, and trying to figure out how to have an okay life despite it. 

[Laghail]

47 minutes ago, Harriet said:

 

I'm not sure what specialist I'd be looking for. I went to the Charite--they have a section that deals with CFS--and they tested and diagnosed me with POTS, a mild immune defect, and chronic fatigue. They don't treat people. I went to a cardiologist and they noted my tachycardia and told me to do some exercise. I went to this fatigue doctor (actually a Heilpraktikerin--a sort of alternative functional doctor) and she gave me a fucktonne of supplements and the hypoxia, infusions, and so on. No improvement. Other than the Charite, the only other non-alternative place I found is a children's hospital in Munich. I am not a child so it's not for me. I don't really know who else I would go to. Maybe a different cardiologist could treat the POTS, at least. 

 

This sounds very thorough! 

 

47 minutes ago, Harriet said:

I suspect that, since there is no cure and no approved treatment, my best bet is learning to manage it, reducing my crash triggers, and trying to figure out how to have an okay life despite it. 

 

Yep. I'm not a doctor but anyone someone talks about a "cure" for CFS or other autoimmune conditions, it's been a scam every time. Mannatech was/is a popular scam here in the states that operated around promising cures from their magic panacea powder. 

 

More talking about comparing notes with state-of-art management recommendations and expectation setting research. Which, Laura having access to them, she says it's helpful but still not magic. FFS.

[Sea-to-sky]

20 hours ago, Laghail said:

I'm not a doctor but anyone someone talks about a "cure" for CFS or other autoimmune conditions, it's been a scam every time

This. The going one here that purports to be a “cure” is actually toting a type of CBS (cognitaive behavioral therapy) ( which can actually be very helpful and doctors do recommend), but is definitely not something thats a cure

 

i hear people find mindfullness and meditation useful. They are often recommended now a days. Because your mood really effects your energy levels so much. 

[Harriet]

Dad went home today. Hopefully I can get over this illness, recover, and make a new plan. Might take a few days off for non-improvement, though. Need to reflect on what it means to get better now I'm coming to the end of my belief in healthy lifestyle changes. 

[Salinger]

1 hour ago, Harriet said:

Dad went home today. Hopefully I can get over this illness, recover, and make a new plan. Might take a few days off for non-improvement, though. Need to reflect on what it means to get better now I'm coming to the end of my belief in healthy lifestyle changes. 

 

I love you Harriet. Sending solidarity, support, cuddles and lots of love xx