[Scaly Freak]

Don't worry, @Harriet, we're not expecting you to tell us about the secret plan. Telling us that you're okay would be appreciated though.  

[Harriet]

On 9/12/2024 at 10:12 AM, Salinger said:

Hey Harriet, love to you!

Glad you are putting boundaries in and taking care of your needs ❤️

 

You are amazing. 

 

Have a safe trip back to Berlin, when you head home xx

 

Thanks, Sal. I don't really feel like my needs are met but I'm back at home now. ❤️ 

 

On 9/12/2024 at 12:49 PM, Sea-to-sky said:

How on earth did i manage to miss your thread?! here now, and am loving this challenge so much. Bonus points for awesome hobbit art on header post ?

(that is one of my favourite dragon images. It was the cover of the copy of the hobbit i read to death in primary school and Very nostalgic) 

 

here for dragon shinies and evil machinations

 

It was the image on the paperback I read as a child, too. Very curly and worn out now. 

 

On 9/12/2024 at 1:09 PM, Sea-to-sky said:

I get this too. And i agree, it’s intensely frustrating. But socialising takes energy too, so its all pulling from the same well im afraid.
breaking it into smaller chunks and rests in between can help (two solid hours of nothing but talking would floor me for the day also). Even being in a room with other people can be a bit much when I'm tired so I've basically explained to the family if i say i need space just to let me be quiet and recharge. If you have a room people wont walk through, this is a good spot to pick. 

 

Yeah, I'm finding out that just being aware of others also drains the well. I need to explain this to dad without hurting his feelings. 

 

On 9/12/2024 at 1:09 PM, Sea-to-sky said:

when out, sometimes finding a quiet cafe or park to sit in can help. Possibly getting the people you’re with to go do something else (like wander round a few shops or something) for 20mins can be a good thing to try. Or explain you just need to chill for a period and get them to bring a book. 
not sure if any of this is helpful for you, but its how i juggle it. As usual, pinch of salt with everything. 
had to work hard at not feeling like an inconvenience when i do this. But putting your energy constraints first is so important. 

 

Yeah. I think I need to put dad to work. Get him to go grocery shopping and set tasks for him. Otherwise he has no plans.

 

On 9/12/2024 at 1:09 PM, Sea-to-sky said:

hope you have a lovely time with your dad over. 

 

It's not lovely, that's the sad and horrible part. It's awful because I'm exhausted. 

 

On 9/15/2024 at 1:12 AM, Scaly Freak said:

I think if we did, it would no longer be a secret plan....?

 

Indeed. The plan will be revealed once I have made some progress.

 

On 9/15/2024 at 1:12 AM, Scaly Freak said:

Aside from being snarky, I'm strictly here for the dragons. 

 

 

That's a really cool dragon air sculpture.

 

6 hours ago, Sovalis said:

How are you, Harriet? ?

 

Not so good. I've been overdrawn since last week and no amount of sitting around has helped. Every day we went out to restaurants, partly because my brain was so fried I couldn't imagine shopping and cooking for four people with different dietary requirements even though I had planned it. Sitting and socialising at restaurants is also tiring, though, and I had zero ability to resist the dopaminergic foods--alcohol, wheat, dairy, sugar--that could cause a small and temporary improvement in my miserable baseline. Then Mr Harriet's well meaning in laws decided to drive down for a five hour visit and I had to sit and chat with them for two hours *before* we even went out to dinner. I took the train home yesterday. I was nauseous and have a lot of joint pain. Including chest pain. And my throat is tight and feels like something is pressing on it at night. I feel exhausted and unwell and unhappy. Obviously I did nothing from my list of valued activities (paint, meditation, exercise, secret plan) while I was away, since my will and desire were in negative numbers. 

 

5 hours ago, Scaly Freak said:

Don't worry, @Harriet, we're not expecting you to tell us about the secret plan. Telling us that you're okay would be appreciated though.  

 

Thank you for respecting the secret plan. It's so secret.    I'm alive. Not really feeling okay to be honest.

 

I got back yesterday night. I feel generally horrible. Why so much random pain?

 

Orange cat is very clingy. I found an open tin of tuna on the ground when I got home. I hope that is not how the neighbour's daughter fed her every day, since Orange has no hands and a very short nose and cannot eat out of the tin very successfully. I am not completely sure I trust that she had enough attention and fresh water every day, either...

I have cancelled an appointment with the GP. I was going to ask about the low dose aripiprazole she offered me a year ago, but I changed my mind after reading other people's experiences with it. Some said they felt suicidal or had other bad side effects, that it worked for a few months then stopped, that the withdrawal was horrible, or that they became permanently worse. It is a drug that messes with dopamine, and that's not a system I'm keen to make worse than it already is. I am thinking it would be safer to just treat the symptoms individually, and to maybe get a second opinion on the POTS. The cardiologist I saw said they had no medications for me because my blood pressure rose instead of dropping, which is atypical. Except it isn't. Low blood pressure during the standing test is *incompatible* with a diagnosis of POTS, and means the patient has orthostatic hypotension instead. I was doing some reading and saw that an increase of more than 10mg blood pressure during the standing test might indicate a subtype they call hyperadrenergic POTS, which is characterised by high sympathetic nervous system activation, with more extreme tachycardia, high blood pressure when standing, anxiety, insomnia, excess peeing, migraines, and a couple of other things. It fits perfectly except the migraines, which I had as a youngster but not any more. My blood pressure rose about 30mg while standing, to 150. 

 

It's not true that there's no medication for this. There are two medications that reduce sympathetic tone; clonidine, and beta blockers. I should research these. I also want to give compression garments and the rowing programme another go. I have tried high salt and I do not like it--it gives me no improvement and I just get puffy around the face. I think this is because in contrast to other types of POTS I might not have low blood volume. But I haven't tried the compression leggings consistently, so I could do that. And I gave up the rowing after three months when I had a crash, but maybe the trick is to circle back to that, as well. It's much easier for me than other forms of cardio that should be objectively the same difficulty. Then perhaps I could ask about safe pain killers for longer term use, and safe supplements for sleep. The GP has already refused to give me anti-anxiety medication.

 

Perhaps I need to impress on her that this is ruining my life; that I cannot do even minimal activities with my family without a massive increase in symptoms, and that I can only achieve an adequate symptom management and quality of life if I do almost nothing almost every day; that apart from shorter, solitary trips for groceries and gym, I can only do outings of a few hours long once or twice a week. 

 

I may also do one more high dose vitamin C infusion, but other than that I am dropping the fatigue doctor. Mr Harriet is sick of paying huge amounts of money for tests and supplements that do nothing. We've given it more than a year, so that's fair. 

[Harriet]

I feel so completely trapped. I cannot do as little as a couple of hours activity each day--not physical nor cognitive/social activity--without driving my energy below the threshold where I start to feel exhausted and my mood deteriorates. This is so little that it is below what other people consider "doing nothing". It is so little that even after I refuse all activities, people *assume* that the remaining stuff, like a quick grocery shop or sitting up at a table for a long, chatty dinner, doesn't even count.

[Salinger]

I am so sorry Harriet, this is so unfair and frustrating for you. 

 

I dont have any advice because I do no know enough but i want you to know that I completely support you, and adore you and wish i could send cuddles via teleport. 

 

I completely believe how bad this is for you and I wish that medical professionals with the power to treat, would take things as seriously as this is. 

 

Sending SO MUCH LOVE. xx

[Sea-to-sky]

5 hours ago, Harriet said:

Yeah. I think I need to put dad to work. Get him to go grocery shopping and set tasks for him. Otherwise he has no plans

This is a sound idea. 

 

5 hours ago, Harriet said:

It's not lovely, that's the sad and horrible part. It's awful because I'm exhausted

Oh, that really sucks. Being too tired for things you want to enjoy is the worst. 

 

god that sounds like a lot all at once to deal with. Even more family down when you are wiped is not what you need. 

[Everstorm]

I hate that you're so miserable right now.  Love and hugs.

[Sovalis]

Damn, Harriet, that sucks so much. I wish I could help. Crossing my fingers and toes that your recovery is swifter and more complete than we can imagine. ?

[Elastigirl]

That sounds so hard. I'm sorry  you have to deal with that.

[Harriet]

19 hours ago, Salinger said:

I am so sorry Harriet, this is so unfair and frustrating for you. 

 

I dont have any advice because I do no know enough but i want you to know that I completely support you, and adore you and wish i could send cuddles via teleport. 

 

I completely believe how bad this is for you and I wish that medical professionals with the power to treat, would take things as seriously as this is. 

 

Sending SO MUCH LOVE. xx

 

Thank you Sal. There are some researchers taking it seriously but they haven't discovered anything that helps a lot, yet. 

 

You know, until 2015, the official position was that CFS was psychosomatic and should be treated with therapy and exercise. They could have checked my standing blood pressure and heart rate any time in those twenty years with a ten minute test that requires no equipment except the standard blood pressure cuff that every office has. They could have given me hard numbers and saved me twenty years of wondering if I was just lazy and depressed. They didn't bother, and I can only think it's out of contempt for people with invisible, mental and psychosomatic illnesses. So the actually dedicated CFS researchers deserve so much respect and gratitude. Anyway, now that long covid is impacting a lot of valuable workers, there's more funding for research. In fact, Bernie Sanders has proposed a long covid "moonshot"--a billion per year for research on post infection syndromes. I hope it can get bipartisan support. 

 

Sending heaps of love right back, gorgeous ❤️ 

 

14 hours ago, Sea-to-sky said:

This is a sound idea. 

 

Oh, that really sucks. Being too tired for things you want to enjoy is the worst. 
 

god that sounds like a lot all at once to deal with. Even more family down when you are wiped is not what you need. 

 

It is a lot, I suppose. Thank you ❤️ I'm glad someone understands how exhausting family is  ?

 

12 hours ago, Everstorm said:

I hate that you're so miserable right now.  Love and hugs.

 

Thank you, Ever ❤️ 

 

5 hours ago, Sovalis said:

Damn, Harriet, that sucks so much. I wish I could help. Crossing my fingers and toes that your recovery is swifter and more complete than we can imagine. ?

 

Thanks, Sov ❤️ Even if I recover from the current crash, I'll still be exremely limited. But I have to remember that with a well ordered mind, even a limited life of very small activities can bring joy. I can't get back my health but I can get back the joy. 

 

4 hours ago, Elastigirl said:

That sounds so hard. I'm sorry  you have to deal with that.

 

Thanks Elastigirl ❤️ Hmm, what is the short form of Elasti girl? Is it Elasti? Or is it Girl? ?

[Mad Hatter]

I am so so sorry Harriet, the whole thing really sucks. I'm glad they're taking CFS more seriously now, but it must be awful knowing how long the potential wait will be... Big hugs to you!

[Harriet]

Gym Garnet: 1
Sauna Star Sapphire: 3

Paint Pearl: 3
Mindfulness Moonbar: 9

***** Diamond: 6

 

I haven't been to the gym or sauna because I've been away, and am now unwell. No painting because I didn't feel like it. But I managed a few bits of mindfulness and some secret plan actions. 
 

15 minutes ago, Mad Hatter said:

I am so so sorry Harriet, the whole thing really sucks. I'm glad they're taking CFS more seriously now, but it must be awful knowing how long the potential wait will be... Big hugs to you!

 

Thanks, Hatter. ❤️ I'm not actually expecting any treatment. I'm actually going on the assumption that this is permanent and I have to figure out what to do with my life and try not to get so deconditioned that I'm completely frail and powerless in my old age.  

[Elastigirl]

9 hours ago, Harriet said:

Thanks Elastigirl ❤️ Hmm, what is the short form of Elasti girl? Is it Elasti? Or is it Girl? ?

?Usually, people just say EG.

[Mad Hatter]

3 hours ago, Harriet said:

Thanks, Hatter. ❤️ I'm not actually expecting any treatment. I'm actually going on the assumption that this is permanent and I have to figure out what to do with my life and try not to get so deconditioned that I'm completely frail and powerless in my old age.  

It's the most actionable assumption. But I still hope there will be help for you and all the other people suffering in the future.  ❤️

[Harriet]

1 hour ago, Elastigirl said:

?Usually, people just say EG.

 

EGGY!!!!!

 

28 minutes ago, Mad Hatter said:

It's the most actionable assumption. But I still hope there will be help for you and all the other people suffering in the future.  ❤️

Cheers ❤️ 

[Snarkyfishguts]

Your feelings are valid.  I hope you can find some relief soon. ?

[Sea-to-sky]

Not sure how i can contribute but what helped me

 

getting the a good awareness of my energy levels and not pushing myself to a point of crashing. (Gets called pacing officially but i dislike that term as it doesnt describe how it feels at all).

It takes practice, but is very worth doing. Stopping and checking your energy levels (ironically quite like checking how much petrol you have in a car whilst driving) is a really important habit to get into.

Being able to judge how much energy a thing will take for you and whether you have enough left is a thing you can only learn through experience. But like anything, it’s just a matter of practice. (Nb. You will screw it up. This sucks but is normal. Building an out or lots of breaks into things incase you run out of energy unexpectedly is a good back up plan. When you go out finding spots you can use to rest in (like a quet cafe, library, museum or park) is a good safety net. I also keep a local cab number in my phone incase of emergencies. 
 

I definitely recommend trying to keep fit in whatever way you can manage within you energy levels. Learn from my mistakes, try to avoid getting muscle atrophy. It just adds to the problem and is a bugger to get rid of. 
 

Youve probably already noticed  there are different types of energy (and thus different types of being tired). You will have days where your mentally tired but can do physical things because you physical energy is good. And vice versa. I often find when im wiped mentally, or have bad brain fog, i can be restless and need to do something physically. Working out some activities that work for these situations is a good plan. Knitting was my go to for low physical energy. Walking for low mental energy. 
 

so. Some good news. I personally know 4 people who have recovered from M.E/CFS (one of whom was bed bound and had to use a wheelchair for many years). Recovery is very possible. (I am also on the way there). Downside, it took a long time. Im sorry i cant make it quicker for you. At least they are researching it now so definitely keep your ear to the ground. 

[Harriet]

7 hours ago, Snarkyfishguts said:

Your feelings are valid.  I hope you can find some relief soon. ?

 

Thank you, Snarky. ? Today is a little better already.

 

17 minutes ago, Sea-to-sky said:

Not sure how i can contribute but what helped me

 

getting the a good awareness of my energy levels and not pushing myself to a point of crashing. (Gets called pacing officially but i dislike that term as it doesnt describe how it feels at all).

It takes practice, but is very worth doing. Stopping and checking your energy levels (ironically quite like checking how much petrol you have in a car whilst driving) is a really important habit to get into.

Being able to judge how much energy a thing will take for you and whether you have enough left is a thing you can only learn through experience. But like anything, it’s just a matter of practice. (Nb. You will screw it up. This sucks but is normal. Building an out or lots of breaks into things incase you run out of energy unexpectedly is a good back up plan. When you go out finding spots you can use to rest in (like a quet cafe, library, museum or park) is a good safety net. I also keep a local cab number in my phone incase of emergencies. 

 

 

I guess I already do this automatically. But the fact that I have unconsciously arranged my daily life to be within my limits meant that I was shocked and unprepared for how bad I'd be hit when my routine was disrupted. 

 

17 minutes ago, Sea-to-sky said:

I definitely recommend trying to keep fit in whatever way you can manage within you energy levels. Learn from my mistakes, try to avoid getting muscle atrophy. It just adds to the problem and is a bugger to get rid of. 

 

You know me, I'm always trying to work out. 

 

17 minutes ago, Sea-to-sky said:

Youve probably already noticed  there are different types of energy (and thus different types of being tired). You will have days where your mentally tired but can do physical things because you physical energy is good. And vice versa. I often find when im wiped mentally, or have bad brain fog, i can be restless and need to do something physically. Working out some activities that work for these situations is a good plan. Knitting was my go to for low physical energy. Walking for low mental energy. 
 

 

Indeed. I was surprised at how my cognitive/social tank is so empty, even though I can do a little exercise.

 

17 minutes ago, Sea-to-sky said:

so. Some good news. I personally know 4 people who have recovered from M.E/CFS (one of whom was bed bound and had to use a wheelchair for many years). Recovery is very possible. (I am also on the way there). Downside, it took a long time. Im sorry i cant make it quicker for you. At least they are researching it now so definitely keep your ear to the ground. 

That's encouraging. But... how? How did they recover? Why did they recover? What did they do when there's no treatment? 

[Harriet]

Looks like today is going to be reading the applications and publications of candidates for leadership of a research group on women and gender justice (for scholars from Africa). For Mr Harriet. He wants my opinion as is prepared to pay my standard editing rates for it. Four candidates, many articles. 

 

Currently taking a tea break after reading just two of the articles from the first candidate. 

[Sea-to-sky]

7 hours ago, Harriet said:

was shocked and unprepared for how bad I'd be hit when my routine was disrupted. 

Yeah, having to go outside a set routine and make it up on the fly is hard. Getting the flexibility right without tanking your energy takes much practice. I still screw up sometimes doing it. You just have to try and be really aware of your energy levels and call things before you hit empty. So tricky.

 

7 hours ago, Harriet said:

That's encouraging. But... how? How did they recover? Why did they recover? What did they do when there's no treatment

I wish i had answers for you. Thats the thing, i really don't know. The lack of answers as to cause currently on it means everyone is very much on a trial error type scenario. 
theres some m.e. Charity's out there that are very good info resources for alot of info on managing it and they are definitely worth checking out. 
 

[Harriet]

2 hours ago, Sea-to-sky said:

I wish i had answers for you. Thats the thing, i really don't know. The lack of answers as to cause currently on it means everyone is very much on a trial error type scenario. 
theres some m.e. Charity's out there that are very good info resources for alot of info on managing it and they are definitely worth checking out. 

I've seen all the advice, of course. Sigh. 

[Harriet]

I didn't manage to add any gems today. I read the applications and went for a walk. My chest hurts a fair bit, and my neck feels like it is being squeezed. I am reasonably sure it's inflammation of the cartilage between the ribs and the sternum and not a heart problem. But it's a little difficult not to be nervous about it. I feel uncertain about how to proceed with the exercise. How can I be so frail??? Why do I always get sick or injured and have to take time off so I never make progress? What can I actually do that will work? 

[Everstorm]

What would have caused the inflammation?

[Harriet]

5 hours ago, Everstorm said:

What would have caused the inflammation?

 

I injured my neck and back in the gym (trapezius, I think). They're still recovering--feels like a normal small muscle tear. But the chest pain started the day after. I may have also pushed or pulled on the ribs too hard???? Unsure. And my brother passed on a bit of a cough while I was away so maybe my whole body is ANGRY? I DONT KNOWWWW. It seems to have cleared up now, though.

[Harriet]

Gym Garnet: 2
Sauna Star Sapphire: 3

Paint Pearl: 3
Mindfulness Moonbar: 10

***** Diamond: 6

I did a tiny home workout and a short meditation, so those count towards gym garnet and mindfulness moonbar.

 

I'm stuck on social media again. I need a way forward. I'm thinking a routine that gradually crowds out device use. But it has to be doable even for me. Maybe that means picking something easy and pleasant to start with. Or having two options for each stage of the routine, one for crash days and one for good days. 

What should I do from 7-9am? Maybe bujo, meditation, and reading a book? Plus breakfast and getting dressed, of course. 

I also need to rethink my workouts. If I keep taking time off, maybe it's too ambitious. Maybe tiny exercises I can do at home--like the single set of lunges I just did--is the way to go. I keep thinking I'm the same as I was 7 years ago when I started lifting and went to the gym pretty consistently for a couple of years. But apparently, I'm not. Difficult to accept that my baseline has gone done even from that low level. Or maybe just my emotional ability and willingness to push through fatigue. Either way, I have to devise a plan that works right now.

[Harriet]

Oh and I spent another few hours on the candidates. Mr Harriet and I are largely aligned on who is the most interesting, but his co-director has other ideas. But she was too busy to read their publications, so she is judging by the research proposals. Mr Harriet insists on paying for my editing and other work. So now I can buy LEGGINGS! Which is what an exhausted villain needs. Leggings with pockets. That's what I want.