May Chat

Dot

A new month (well, yesterday was) and a new week in our weird and hilly journey through life.
Or should I say mountainous.

Well, I seem to be on a nice level bit so far today. Woke up feeling good! Such a sweet precious feeling, I hope I wasn't the only one.

Sending good wishes to everyone and hoping today has some nice things in it somewhere. Even little tiny nice things that are only here for as long as a Higgs Boson.

I'm hoping to make pumpkin soup.

Best wishes all

dee

Thank you @Dot !
Good to hear.
I'm feeling surprisingly ok after some big exertion activity on the weekend and leaning into the Rest part of the equation is helping a lot. It is nice to be here amongst other people who are also getting lots of rest.

Dot

Hello everyone,
Tuesday morning, the sun is out.

I got to the veggie shop right as it opened (thinking covid safety).
(Okay, 5 minutes after it it opened, but that is the CFS way )
I'm home now and drinking my coffee. Lovely

Rest next!

@dee Hooray for a less than expected crash.
I got that also after my big trip to Bendigo last week. Such an extraordinary feeling of gratefulness.

@Glimmer are you unlocked? Did you get the cat tray emptied?

I didn't get the pumpkin soup made. Maybe today.

Best wishes all

Glimmer

@Dot I’m in! Yes I finally got the cat tray cleaned but I was still in my pj’s at 3pm, but I finally found enough energy to put some clothes on. Had to decide whether it was a shower for me, or a clean loo for the cat. Guess the cat came first, and I was thankful and very appreciative of my shower this morning! ️
Hope you get to enjoy pumpkin soup.

Dot

Hello
A crisp, cold, clear morning here.
Wish I could say the same for my brain (except the cold bit )

Chaos day yesterday, but it did include home help (who even vacuumed behind the tv hooray!) which was wonderful. And catching up with my daughter.
Big day!

@Glimmer It is always good to know you are in!
And medals for cat tray cleaning.
Hooray for a lovely shower.

@artist55 How are you recovering? Sending good wishes.

I made the BEST pumpkin soup. Fabulous pumpkin and chili and lemon flavours. I wish I could give everyone a lovely hot bowl of it.
Ok, only those of you who actually like pumpkin soup. Fair enough. Haha.

Since I can't do that, I will send out best wishes for a really good day.

dee

Thanks for your daily greetings when you are able to do then Dot!

I am imagining that feeling of having a warm bowl of pumpkin soup ️

Sending encouragement to others who have been having a difficult time and have been quiet here.

I have had a drawn out PEM (still preferable to an acute reaction I think), hopefully starting to come out if it.

artist55

Hello everyone

Today my isolation ends and I’m allowed to re-enter society but I’m playing it safe and staying indoors instead I’m feeling much better and grateful that the Covid has exited stage left.

Thank you for the virtual soup, @Dot. Pumpkin soup is one of my favourites Hooray for a clean home and visits with the family!

Sending best wishes to you too, @dee and @Glimmer and anyone else who might be reading today. May your day be at least a tiny bit special

Glimmer

Hello @artist55. Very pleased to hear that you are feeling better. May it continue.

DramaticHuskie

Yay for anyone feeling better right now. I felt as though I had turned a corner with fatigue but it came back with full force today! Oh well - I am waiting for my script to be done for Midodrine which I've not had before and hopefully that will make a different.

Three weeks into the fatigue rehab and I have a new goal to have enough baseline energy by September to go to Adelaide for a month for some work. My partner is going to come with me and we have already told the people down there that I have to rest and not overdo things. I'm nervous but if I do all the right things before and during it, I should be okay. Any tips appreciated!

Hope all are well or managing out there and able to listen to the birds singing!

dee

@artist55 that's wonderful news and sounds like a good idea to stay in which hopefully will give more recovery rest too.

@DramaticHuskie good luck for the Sept goal! Glad to hear your partner is going too. Good idea to crowdsource tips. I'll let more experienced people offer tips first, I'm still a newbie.
I've been watching huskies videos thanks to you. they're so lovely and vocal and funny.

Dot

Good morning everyone,
Woke up early enough to go outside and see the planets in line.
What an amazing galaxy to live in!

Now listening to Homeward Bound * and drinking coffee.

Thanks @dee
Good wishes for easing out of that extended PEM. It is a tight rope to balance on.

@artist55 So good to hear you are passed the 7 day mark and hoping it is easy and restful until you are ready for school again.

@Glimmer I hope today is good.
(as in high standard and well behaved )

@DramaticHuskie Grr for that dreadful fatigue returning.
Wow, that is a big adventure you are planning. It sounds like you have already done the important things: planning, warning everyone of your limits.
We will be (softly) cheering you on.
I do hope the Midodrine makes a good difference.

Best wishes to everyone

*See Alphabet Song Thread

coco

Hey community.

I hope this is allowed. With the upcoming federal election looming, Does anyone know if any of the parties have any awareness/intentions re mecfs?

Daffy_Dave

@coco Conversations about this kind of thing are absolutely allowed (if ever unsure, have a look in https://community.emerge.org.au/category/20/forum-guidelines-and-community-values ) - but it's worth treading carefully when wading into the waters of political discussions. It's important for everyone involved to bear in mind that people on the forums are likely to have a range of views and values, and to remain friendly and respectful.

coco

@Daffy_Dave Thank you! Yes i think it would be VERY helpful to tread carefully and I would encourage any political discussion in response to my question to stay focused on MECFS related issues only

DramaticHuskie

Hey @coco , not sure a bout political parties and specifics towards MECFS. But I can speak from recent Research conversations between government regarding the Australian Research Council which handles the big university grants. Due to the recent pandemic, there is a push towards more understanding regarding health, including Covid but not limited to.
That includes research projects on Long Covid, which is broadening the conversation towards post viral illness and MECFS.
They also want new research to lead towards tangible solutions and possible commercialisation (meaning, something like a device or program that makes money) which is going to make humnaities based research a lot harder (my area!)

Not sure if there is anby specific money going towards treatment though, offered from either party. Lots of talk on NDIS, but for me personally I would love to see government policy not wait until disablement for some of us. Hope that helps.

coco

@DramaticHuskie Thank you.

I would love to find out more about the NDIS stuff and if that might impact the likes of us.

KatieAnn

@Dot what a lovely little chat area this is ️
It is so nice to see people checking in with each other, celebrating the wins of the day and providing a very relatable space ️
My week started with a colonoscopy, so much fun - NOT!! I will identify my win as not being as washed out as I was expecting
I see there is another cat person here and a pumpkin soup lover - you are my kind of people ️️️

artist55

@KatieAnn sympathies on the colonoscopy! One of the nasty ones

I’m a cat lover too. Mine is a Ragdoll called Holly. She is good company in the studio so I forgive all the stray hairs that end up on the artwork

Today I managed to wash the dogs’ bedding and empty the dishwasher so now my daughter and I are catching up on some episodes of Castle together - a rare treat indeed!

Wishing everyone else a lovely treat today too

Glimmer

Lots of cat people here @KatieAnn. They give us so much company, so we can forgive them when we have to clean up their mess, and meet their demands. And in @river’s case, rescuing them from balcony. I have a British Blue.

@artist55 good to hear you’re up and around.

Pokitren

@dee said in May Chat:

Thanks for your daily greetings when you are able to do then Dot!

I am imagining that feeling of having a warm bowl of pumpkin soup ️

Sending encouragement to others who have been having a difficult time and have been quiet here.

I have had a drawn out PEM (still preferable to an acute reaction I think), hopefully starting to come out if it.

Yes, an acute reaction is even worse. And I also love pumpkin soup How are you now? Is everything better now? Because there are some details I'd like to clarify.