Daily Chat

Glimmer

@artist55 I read your comment about the psych laughing at what you said and it reminded me of when I went to see a General Surgeon pre surgery. He asked me for my medical history so I told him I had CFS. He thought I was joking and had a great laugh. I was dumbfounded so I didn’t say anything. I so often think if only I could give some people my symptoms even for 5 minutes so that they get the idea …

Daffy_Dave

That's atrocious treatment you both got @Glimmer and @artist55 - in both cases, there's really no excuse for that behaviour. Much sympathy and understanding. That being said, it's important to be 'steeled' for those kind of responses. Best of luck with your continued search today @artist55.

artist55

@Glimmer I’m so sorry There are no words. It’s not a joke to the people involved. Maybe if this condition had a different name, people would find it less amusing? Good job we’re a resilient bunch!!

artist55

@Daffy_Dave Look on the bright side: We have already learned patience, resilience, compassion - and now we get to work on Unsusceptibility too. The gifts just keep a-comin

Daffy_Dave

@artist55 That's an excellent attitude - there's no question that ME/CFS is 'character building'

artist55

@Daffy_Dave I think I learned it from my son. He has Tourette Syndrome and thanks to movies and media he has had his share of tasteless jokes and sniggers too. He has a lovely, sunny nature in spite of it though.

crashdummy

@artist55 , @Glimmer Shame on those who believe they have the right to laugh at a patient trying to communicate their illness. I'm having a Zena warrior moment with this, wanting to lead the charge on fixing this consistent barrier to being heard with respect, equality and fairness. Why my cat was treated better when he presented with lethargy and anxiety after moving house! I was told that just because you may not see an obvious cause, it is very real and debilitating: we must treat it immediately! .... rightfully so .... Why the same attitude and courtesy isn't automatically extended to humans when it comes to anyone suffering from ME/CFS or any of the debilitating symptoms, is beyond belief. Sadly these attitudes do exist and many of us have experienced it ... so sorry you experienced such appalling behaviour ... I'm sending you both a cake emoji to cheer you up

Glimmer

@crashdummy Very well said. Thank you. Also for the cake emoji! Yes if it happens again I feel like I’m stronger to handle the situation differently. We learn as we go along. Hope you have a good day.

artist55

@crashdummy thank you for the cake and your heartfelt support I feel blessed to be a small part of this caring community!

Dot

Hello everyone,
I am just about recovered from granddaughter and visitors and appt with Exercise Physiologist. Sheesh!
I have also got my computer glasses back. Hooray!

Hi Daffy Dave, wishing you a gentle day today.

And everyone else too!

Hello @artist55, congratulations being one step further along the road of your diagnosis. How awful to have such a terrible trial trying to book. Exhausting and not helpful to be laughed at. How frustrating to have to wait until November to see your next specialist, especially if it will only take a few minutes once you get there.
It can take days to recover from that sort of ringing around. Sending best wishes.
Won't you be glad to get off the merry-go-round.
Hooray that you are feeling community here. It is lovely for us too.

@crashdummy Ha yes, do make it your avatar! Dyeing your hair green would take a bit of extra bleaching-first work, I understand, so beautiful brown is a wonderful option.
Omg you had a nasty merry-go-round ride with ME. Nasty dodgem cars too.

Oh dear @Glimmer, that General Surgeon. (My lung surgeon is similar, thank goodness he sticks to his lung surgery job).

Well I am happy to feel well enough to post again. Little things are so precious.

No need to mention the Victorian lockdown? I've been locked down for years!
But if it is causing you hardship, here or in NSW, sending lots of good wishes.

Cheers friends.

PS Should I start a new daily chat thread since this one is getting so long?
A new one each week, or each month?
What do you think?

Glimmer

@Dot Nice to have you back. . It’s interesting isn’t it comparing the lockdowns to our own. We’re old hands at it.

Dot

Good morning,
It is the weekend (quite understandable if you didn't realise )

Hi @Glimmer,
Yes ME/CFSers, we are lockdown experts. (Not by choice.)

Well today I am planning to do all the best things: drink lots of water, do my stretches, potter around, eat good food, that sort of thing.

Hoping you all have a reasonable day with some useful pottering around and don't eat too much rubbish

I don't think I am going to see any sun today, but I will try to poke my nose out when it isn't raining.

Best wishes to everyone

Glimmer

@Dot Your day sounds the same as mine! We have blue sky and sunshine here, but it’s a bit breezy so I won’t go outside. Cool wind gives me earaches and affects my balance. .

artist55

@Dot Glad you are up and about and that you got your glasses back! I hope the rain stays away long enough for you to get out a bit.

@Glimmer Its not too windy here, just rainy, but I don’t mind it️

This weekend is for resting before schools reopen on Monday. I hope you all have a restful weekend too

Dot

Hi @Glimmer @artist55 and Everyone Else,

How is your Sunday?

I've sent too much of the morning sitting at the computer playing my favourite computer game (Wizard101).
Not good for me. I'm best with a gentle mix of sitting, lying down and pottering around. Not too long at any of them.
Never too late to start doing the good things. I'm off to slowly, one step at a time, make a good pot of chicken and vegetable soup. Just what I need.

@artist55 I do hope you have been able to restore yourself a little, ready for school tomorrow. Sending good wishes.

@Glimmer the littlest wind or cold just seems to find its way in, doesn't it. But extra scary that it effects your balance. I hope today is a snug day.

PS I did do the waterworks dungeon in Wizard101 and made a doubledecker garden. Some sort of triumph

Hoping you all get some sort of triumph today!

Dot

@artist55 I came back to say, I hope you can get a doctor's certificate for more days rest, if you are not well enough for school tomorrow.

artist55

@Dot Thank you I have done very little today but rest, so hopefully tomorrow will be okay. Luckily there are no children until Wednesday so that will make it much easier to take a break when needed. I hope everyone has a great week

Dot

Good morning.
Cold and grey in my part of Melbourne. Cautiously optimistic about Victoria's covid numbers. Fingers crossed for NSW too.

Thinking of you @artist55 traipsing off to the Art Room. Hoping you have a bean bag, a pillow and a thermos set up in that dark corner of the storeroom and a sign saying 'Back in an hour' to hang on the Art Room door.

Sending good wishes to everyone. A medal for getting up and checking the forums. A medal even for checking them before you get up!

My word to describe my health today
groggyish

What is yours?

Glimmer

@Dot Hovering. My body is still deciding.

crashdummy

Hi everyone,
I managed to get a few life admin tasks out the way but I've only just finished and I started at 9am. Its now about 4:30pm!! Slow as a snail today. That groggy feeling is just yuk @Dot ...hope it buggers off for you. I feel for you @artist55: hope your day hasn't been too exhausting. @Glimmer hovering: sounds very familiar... hope your hovering had an upswing and not a downslide! Enjoy your evening everyone...: nerd_face: