[Scaly Freak]

9 hours ago, Harriet said:

redbubble may take down my painting

 

Wait. You've had things on Redbubble all this time????!?!?!?

 

Ah, there's a link. Off I go.  

[Harriet]

4 hours ago, Scaly Freak said:

 

Wait. You've had things on Redbubble all this time????!?!?!?

 

Ah, there's a link. Off I go.  

 

Oh, it's nothing much yet. Unfortunately many of my earlier paintings I shared here are too small (resolution) to upload. I didn't know any better. I make my digital paintings with a larger resolution now, but I don't have much of a collection yet. So I just uploaded a few later things to try out redbubble's functionality and printing. I wasn't even planning on making them public. I hope to change that, though, and make a lot more stuff.

[Scaly Freak]

Out of curiosity, do you still have the original of the kneeling warrior woman with the broken blade?

[Harriet]

20 minutes ago, Scaly Freak said:

Out of curiosity, do you still have the original of the kneeling warrior woman with the broken blade?

Yep. It was the fact that you liked that picture that prompted me to explore redbubble and other selling platforms. That's when I realised that all my work was done in low res, and I wouldn't be able to use any of it. All the stuff I did in my most prolific work period yet. Alas.

 

But I still have the file: If you desire, I can put a PNG or JPEG in google drive for you, or I can upload it to redbubble, or both. It would only be available as a card or sticker or magnet on rebubble, though, as the resolution is not high enough to support a larger print. It could be a background for a laptop, I guess 😅

[Scaly Freak]

2 hours ago, Harriet said:

Yep. It was the fact that you liked that picture that prompted me to explore redbubble and other selling platforms. That's when I realised that all my work was done in low res, and I wouldn't be able to use any of it. All the stuff I did in my most prolific work period yet. Alas.

 

But I still have the file: If you desire, I can put a PNG or JPEG in google drive for you, or I can upload it to redbubble, or both. It would only be available as a card or sticker or magnet on rebubble, though, as the resolution is not high enough to support a larger print. It could be a background for a laptop, I guess 😅

 

I would love any of the above, but only if you get anything out of it. I still have the kneeling woman warrior as my desktop wallpaper because she is a focused badass who refuses to give up, no matter what the world throws at her. 

 

So, as I mentioned, I'm okay with whatever works out best for you. For myself, I like my desktop background and intend to keep it.   

[Harriet]

38 minutes ago, Scaly Freak said:

I would love any of the above, but only if you get anything out of it. I still have the kneeling woman warrior as my desktop wallpaper because she is a focused badass who refuses to give up, no matter what the world throws at her. 

 

So, as I mentioned, I'm okay with whatever works out best for you. For myself, I like my desktop background and intend to keep it.   

The amount of money I would get from the sale of a card or sticker is, like, 30 cents to a couple of dollars. Those are more or less meaningless amounts to me. Putting my stuff on redbubble is more about taking my art seriously, trying not to be so shy and self deprecating, giving me dignity and purpose by making art my "work" and making it available if friends want prints (or indeed, if I want prints). You have already done me a considerable service in that regard just by wanting my picture and using it for something 🧡 which as I mentioned, is what spurred me to explore printing services and start painting in larger resolutions. I haven't made a lot of progress in terms of finished paintings, but at least I am starting to think of my art as work worth doing and sharing.

 

Maybe I should upload some of the paintings I didn't think were good enough to share, since apparently others disagree with my assessments of my own work.

 

Anyway, I'll send you a link to the original file on google drive, just in case your desktop image is downloaded from my NF thread, in which case it may be even lower res than the original.

[Harriet]

I walked, read a little, did a little sketching, some knitting and German listening, but mostly packed for tomorrow's trip and slept a lot. Really tired today for some reason. I hope tomorrow will be better, because a six hour train ride is less comfy when one is very fatigued. It's reasonably comfortable otherwise.

I haven't noticed any improvement from wearing compression tights. Taking lots of salt does seem to keep the palpitations away though. But no improvements on the fatigue, which is really 90% of what bothers me.

[Scaly Freak]

9 hours ago, Harriet said:

Anyway, I'll send you a link to the original file on google drive, just in case your desktop image is downloaded from my NF thread, in which case it may be even lower res than the original.

 

It was, so thank you for the link.  

 

I've replaced my old wallpaper with the new file  

[Harriet]

I arrived in a little country town outside Munich. It is beautiful, and smells nicer than Berlin. I am very tired. Walking home from the Biergarten was really rough and I had to stop and sit down twice, once on the road. I am so unfit. But I am going to change that.

I saw a thread on reddit recently on the ME/CFS forum that was titled something like: "how do you cope knowing everyone wants us dead?" and the poster was talking about the lifting of mask mandates, and instead of dissenting, the comments were all affirming that this is, in fact, a genocide specifically against chronically ill people and I just... I think maybe that community might be making people more fragile, not less. Also every time someone says they were helped by exercise, others chime in and say DONT DO IT you will get PERMANENTLY WORSE and you will be BEDBOUND FOREVER.

Yeah so anyway my new awesome plan is to decide I do not have CFS, just chronic fatigue with some unknown cause, and I will do sensible very gentle exercise, taking into account my low capacity for recovery, together with rest and stoicism and self kindness and a schedule of meaningful life enhancing activities that don't depend on me getting better and not complaining so much or focusing on my symptoms or looking for cures. I'm already cured! The charite didn't give me a definitive CFS diagnosis, therefore, I don't have it. That's my second opinion. Now I just have to increase my cardio fitness from -300 to +800 and regain my deadlift and learn to cope gracefully with periods of intense fatigue.

[Scaly Freak]

1 hour ago, Harriet said:

I saw a thread on reddit recently on the ME/CFS forum that was titled something like: "how do you cope knowing everyone wants us dead?" and the poster was talking about the lifting of mask mandates, and instead of dissenting, the comments were all affirming that this is, in fact, a genocide specifically against chronically ill people and I just... I think maybe that community might be making people more fragile, not less. Also every time someone says they were helped by exercise, others chime in and say DONT DO IT you will get PERMANENTLY WORSE and you will be BEDBOUND FOREVER.

 

Well, yeah. That's pretty much how abusive relationships work -- the abuser reinforces their target's weakness and helplessness at every turn, while constantly reminding them why they have no other options for moral support because no one else cares about them anyway.

 

That sounds like a very toxic subreddit.

[Sovalis]

Wow, that sounds like a toxic space. I am glad you told us about it though. Sometimes I forget that not every corner of the internet is supportive (I have a very small digital footprint, and it's exceptionally well curated) and it's good to be reminded that what we create with our words can have such a huge impact. Especially to those who might be outside our regular orbit. 

 

I think your plan for slow and steady, self care, and compassion is the only logical way forward. 

[Harriet]

12 hours ago, Scaly Freak said:

 

Well, yeah. That's pretty much how abusive relationships work -- the abuser reinforces their target's weakness and helplessness at every turn, while constantly reminding them why they have no other options for moral support because no one else cares about them anyway.

 

That sounds like a very toxic subreddit.

Yeah, I don't think they're deliberately abusive, because it's a group dynamic... people might be unintentionally making each other more afraid and focused on the negatives as a way to make up for the total denial and dismissal they often get from doctors and family. I think it might start as a well meaning desire to "validate" each other. But there's got to be some more balanced path between total dismissal and unqualified validation of people's most pessimistic thoughts and feelings.

 

6 hours ago, Sovalis said:

Wow, that sounds like a toxic space. I am glad you told us about it though. Sometimes I forget that not every corner of the internet is supportive (I have a very small digital footprint, and it's exceptionally well curated) and it's good to be reminded that what we create with our words can have such a huge impact. Especially to those who might be outside our regular orbit. 

 

I think your plan for slow and steady, self care, and compassion is the only logical way forward. 

There are probably loads of other super helpful people and threads in that community, it just struck me as an illustration of the need to decide how I think about being ill. I think they're even trying to be supportive, but somehow the support means affirming how bad everything is (is this a generational thing? An online thing? I don't know). I think there could be a significant nocebo effect from that. And significant fear of getting worse, which I understand, because severe CFS has one of the worst qualities of life of nearly any illness. But I don't want their fear to rub off on me. Given my history I think gradually worsening depression and deconditioning through inaction are more likely for me than becoming severe. In fact, I'm not even sure I have the same illness as those people, since chronic fatigue is common to many conditions and since not everything about my case matches the typical presentation.

 

I read a book recently where the author presented quite a few different sick or disabled characters, and it really made me think. Some handled it with grace and strength and did what they could, and had a lot to offer despite limitations. Another made it their whole identity and cultivated fragility and self pity and sought pity or unreasonable accommodations from other people. And of course at least one character was a bit too stoic and didn't take care of himself or ask for help when needed. I realised I don't want to become the second kind of character, and that it's probably not good to spend too much time researching the illness or reading about people complaining in that subreddit.

I think I'd like to cultivate strength and stoicism but still take care of myself, and not make the illness my whole identity or have all my thoughts be about it. Wherever possible I should ask for help or express gratitude instead of complaining. Although I do use NF a bit to complain and list my symptoms as a kind of journal/record, I would like to say less about it in real life. And I probably already have all the information I need, and don't need any specialised support that wouldn't apply to everyone.

[Harriet]

Slept terribly--less than 5 hours with multiple awakenings. But I decided not to panic or assume that today would be terrible. I did mostly rest, but we walked to and from the biergarten to get dinner. It was fine. I mean, I felt tired, but so what? I can recover. I did German listening, reading, knitting. I didn't do art as that requires a bit more initiative than I had today.

What I like about the biergarten is you can just get meat and there is no obligation to have sides. So for example I got a halbes hendel (half of a little chicken, not one of those massive supermarket ones) and nothing else to eat. Other options are the bbq pork ribs or the pork crust roast. Vegetarians get cheese spaetzle (little dribble shaped fresh noodles with cheese and fried onion bits) or veggie knoedel (spherical dumplings of some sort). Fish eaters get the fish. There is one red wine. There is a beer, and a wheat beer. There is no Qual der Wahl, no agony of choice.

[Silmarilliane]

20 hours ago, Harriet said:

What I like about the biergarten is you can just get meat and there is no obligation to have sides. So for example I got a halbes hendel (half of a little chicken, not one of those massive supermarket ones) and nothing else to eat. Other options are the bbq pork ribs or the pork crust roast. Vegetarians get cheese spaetzle (little dribble shaped fresh noodles with cheese and fried onion bits) or veggie knoedel (spherical dumplings of some sort). Fish eaters get the fish. There is one red wine. There is a beer, and a wheat beer. There is no Qual der Wahl, no agony of choice.

 

This sounds a lovely place - also I now want veggie knoedel...

[Harriet]

I slept badly again, but didn't panic and had an okay rest day with only a tiny bit of walking and some time sitting outside to get sunlight and fresh air and views. I'm reading up on mind body approaches to chronic illness. The CFS patient advocate groups are very against them, because they supposedly undermine the purely physical explanation that patients and advocates think is necessary for them to be treated seriously and get help. But that doesn't make sense to me because the mind influences physical things in the body in a very concrete way. Not every thing. But it seems as though things like anxiety and the perception of fatigue might be somewhat amenable to interventions. Even the immune system is influenced by the stress system, and the stress system can clearly be influenced by mind body approaches. And it's not as though anyone is offering me a physical treatment anyway. So I'm thinking one of my next challenges should be about the mind body aspect--maybe a gratitude practice like the one I'm admiring so much in Tank's thread, or hypnosis (I found an app!) or just a don't-complain-about-my-illness challenge.

[Harriet]

I went for a bit of a longer walk this morning, and ignored the little whining "i want to quit" voice, since there was nothing objectively wrong with my body or its ability to walk. I did some reading and some art, and will do German and knitting tonight. I'm thinking about the next challenge, because things are going to change. I might need to do a whole themed year again. Hmm.

[Silmarilliane]

Good work shushing the whiny voice. What're you knitting at the moment?

[Snarkyfishguts]

2 hours ago, Silmarilliane said:

Good work shushing the whiny voice. What're you knitting at the moment?

I’d like to know too 😊🧶

 

I’m sorry about the Reddit space. I’m glad you’re sorting out what helps and doesn’t help

[Scaly Freak]

On 5/29/2023 at 1:17 AM, Harriet said:

I think I'd like to cultivate strength and stoicism but still take care of myself, and not make the illness my whole identity or have all my thoughts be about it. Wherever possible I should ask for help or express gratitude instead of complaining. Although I do use NF a bit to complain and list my symptoms as a kind of journal/record, I would like to say less about it in real life. And I probably already have all the information I need, and don't need any specialised support that wouldn't apply to everyone.

 

This is a really healthy approach that I wish I was better at when it came to some of my own issues. Like the anxiety. Especially the anxiety.

[Harriet]

15 hours ago, Silmarilliane said:

Good work shushing the whiny voice. What're you knitting at the moment?

 

Thanks! Cardigan pics below

 

13 hours ago, Snarkyfishguts said:

I’d like to know too 😊🧶

 

I am knitting this cardigan, but in a dark, hand dyed green.

 

 

 

13 hours ago, Snarkyfishguts said:

I’m sorry about the Reddit space. I’m glad you’re sorting out what helps and doesn’t help

 

Thank you. It's been a long journey made a lot longer by both my own avoidance/unwillingness as well as misinformation by others.

 

7 hours ago, Scaly Freak said:

This is a really healthy approach that I wish I was better at when it came to some of my own issues. Like the anxiety. Especially the anxiety.

 

It's tricky because I feel that, since my illness is invisible, if I don't complain, family won't know how sick I am and will blame me for being inactive, or push me to do more than I can handle. I was also encouraged by various people and sources to really note my symptoms, so I can discern patterns. And what is complaining but verbally noting my symptoms? But I thought I could get around some of this by expressing gratitude or asking for help e.g. "I might need to make today a rest day" or "I'm looking forward to going to bed early today" or "hey it would help me a lot if we could get takeaway today" instead of "I slept terribly and feel awful." I think that might make others feel less helpless, too. Or maybe it could be a statement of intent like "I'm going to meditate consistently this week to get my anxiety under control." And I will probably still note my symptoms here because it is a useful record, and I expect it is less distressing for my nerds than for my husband. I will try to keep it neutral, though, not bitter. lol. Maybe with RPE or a similar measure.

[Silmarilliane]

3 hours ago, Harriet said:

Cardigan pics below

 

Oh yes! For some reason I thought the cardi was crochet so the knitting must have been a new project!

[Sovalis]

Love love love the colour of that yarn, Harriet. Gorgeous. ❤️ 

And I think you’re right; it might be less stressful for us than Mr. Harriet. So glad you have us as an option. 

[Harriet]

17 hours ago, Silmarilliane said:

Oh yes! For some reason I thought the cardi was crochet so the knitting must have been a new project!

 

Haha no I do not crochet. I tried it and was so slow compared to knitting, at which I was already skiled, that I had not the patience to improve through the beginner phase.

 

11 hours ago, Sovalis said:

Love love love the colour of that yarn, Harriet. Gorgeous. ❤️ 

 

It's great. It's a nice German producer, too, which I feel good about. Good to buy from nearby.

 

11 hours ago, Sovalis said:

And I think you’re right; it might be less stressful for us than Mr. Harriet. So glad you have us as an option. 

 

Me too ❤️

[Harriet]

Yesterday was massive. We had to go in to Munich to speak to the architect and light expert, as well as another expert. It was an eight hour trip, which is a lot for me. I'm not even sure I was needed. But the lights lady is awesome and the cellar where my weights will go is going to be well lit with the small embedded ceiling lights being organically placed, like stars, instead of in neat rows. She made sure there isn't one directly above where the bench will be, because no one wants to be blinded while benching.

 

Today I just need to recover. But I can still do some art, reading, and German. I even did some art yesterday before the trip. Yay!

 

My brother asked me if I wanted to go and see the Harry Potter play, which is coming to Hamburg. I was torn, since it's a rather effortful adventure to go to Hamburg and to a play, but I eventually agreed in accordance with my new decision not to do strict pacing aka medically advised avoidance. He booked the tickets, so now I must go on an adventure. Later though, in July.

[Silmarilliane]

3 hours ago, Harriet said:

eight hour trip, which is a lot for me

 

Eight hour trip is a lot in general, so this must have been exhausting (especially if you didn't feel partic needed)

 

3 hours ago, Harriet said:

the cellar where my weights will go is going to be well lit with the small embedded ceiling lights being organically placed, like stars, instead of in neat rows. She made sure there isn't one directly above where the bench will be, because no one wants to be blinded while benching.

 

This sounds AWESOME though - my place isn't big enough for its own weights space so they're all just in the lounge, but the dream is to have a little separate space to workout 😃