A thread for having a good 'ole vent :)
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Having ME/CFS can be all sorts of challenging - both the illness itself, and the prejudice people with the illness get from many in the medical profession and others, and it can sometimes be good to have a good 'ole vent - this thread is for that (everyone's very welcome to create specific threads for things as well, but I thought it might be nice to have a place to get things off our chest).
Please keep in mind it's a public forum - so don't identify anyone (either directly, or by describing them in such a way as it's clear who they area), or make attacks on particular groups. It can be for letting off steam about that social occasion that you were too unwell too attend, or reacting to a food you enjoy, or anything really that's consistent with the forum guidelines
I'll kick off by saying I used to really like good bread - fluffy, but still crisp, and super-tasty. Soooo nice - while gluten-free bread has come a long way in the last 20 years (and it has come such a long way!), it's still nowhere near the real thing. And ever since ME/CFS, gluten and me don't agree, so while I can still appreciate the smell of a good loaf of bread
, I can't eat the stuff, grrrrr....If you want to find out how to set up a signature and a profile picture, see: https://community.emerge.org.au/topic/76/how-to-setup-a-signature-and-profile-picture
For some tips on using the forum: https://community.emerge.org.au/topic/90/forum-tips-and-tricks
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@Daffy_Dave fellow bread enthusiast here. It's no fun when your comfort food turns on you.
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I am really over being sick at the moment. I want a holiday from my life! Just a week away, without symptoms, where I could do a few normal things and not worry about the physical fall out. Is that really too much to ask?!
And I miss soft, white fluffy bread too. And doughnuts...and all the really good, but bad foods.
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I barely slept last night, no particular reason, nervous system just wasn't cooperating. Feel horrible today, all the symptoms flaring. I've been doing better overall but there's nothing like a night of sleep disruption to set me back. Bleh!
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Hi all....Ya know...?Those times when you really want to connect with fellow ME/CFS people ...except the last couple of weeks have been extra extra...bad for me, so I’m struggling to read and take in info....which is frustrating as there is lots I would love to look into more and I’d also really love to help others as well and I feel dam useless really!!!!
️Plus when your docs doing tests and is sure that some more answers will show up so we can get somewhere and yet again no answers and no solutions for the day today..... as you would all probably understand the situation, as we certainly do not want blood results coming back horrid!!
Meanwhile there are things that do say hey... what’s going on with the bod...in some of my tests eg low white cell count ...massively too high thyroid antibodies ect ect ...
I will go and try and find something to get into on Netflix and take a leaf out of my own book and tell myself to take the pressure off and give myself the day off!!!
Even Though I’ve been doing that for sooooo long now
must laugh as we have to get through this.....Thanks for listening. I hope today is a good day for you all.
Hugs from me
Tess 🤗
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@Tess Much sympathy and empathy Tess - take care, and well vented
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@Daffy_Dave said in A thread for having a good 'ole vent
:@Tess Much sympathy and empathy Tess - take care, and well vented
Thank you and you too
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@Tess Hey Tess, was wondering where you've been. Totally understand the bad run you are having on top of the usual bad ... hope you feel better soon and are able to get your head around things. Your desire and compassion towards helping others, has always shone through, throughout this forum. I thankfully appreciate your presence and when one of us becomes absent for a few days or longer, I assume that the worst has kicked in. Glad you vented this in your post. Happy thoughts to you
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Today's vent: suddenly struck down by really bad PEM after quite a long run of doing relatively well. It was cognitive/social exertion that got me in the end. Struggling with the horrible combination of boredom and knowing anything I try to do for entertainment will make me worse and delay my recovery. Bleh.
Pronouns: they/them - ME/CFS since 2017
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@river sorry you are back into the dreaded PEM. It’s hard to find that balance between boredom and just being able to do something. I find windowswap a great distraction without being too taxing. It can sometimes be quite soothing and helps me get to sleep. Also citywalks is also good. I was walking along a pier in Naples yesterday listening to the surf. I could almost pretend I was there.
. Both on line if I’ve confused you. -
Much sympathy @river , always frustrating. I very much hope you can rest through it relatively quickly, but understand it's not something that can be rushed. Vent very appropriate!
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Four weeks ago after yet another clear batch of tests my doctor said it was time for him to refer me to another physician. He said he would be in touch but I haven’t heard from him since.
Today was a bad day health-wise but I had to go to work so hubby phoned the doctor’s rooms to see if there was any news on the referral and managed to get a referral number but when I called them during my recess break they told me that my referral had been cancelled because the doctor didn’t include my test results.
So instead of being 4 weeks closer to an answer we are back at square one. I’m pretty disappointed. Just wondering if anyone else has had something similar happen to them? Is this normal? What should I do next? Any advice would be welcome!
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I'm very sorry to hear that @artist55 - that sounds like pretty poor form by someone. Maybe it's worth contacting your doctor and letting them know what happened, and if they can forward the test results as well? I think it's well worth venting about though!
If you want to find out how to set up a signature and a profile picture, see: https://community.emerge.org.au/topic/76/how-to-setup-a-signature-and-profile-picture
For some tips on using the forum: https://community.emerge.org.au/topic/90/forum-tips-and-tricks
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@Daffy_Dave Thank you. I followed your advice and the doctor said he would redo the application but it could be a 3 month wait before I get an appointment. Luckily I’ve had practise waiting patiently
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There's nothing like ME/CFS for learning patience, eh @artist55 ? I'm glad they were able to get you another appointment, but I'm sorry it's so far off!
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Kind of a small issue given the scale of possible issues to deal with but I needed to vent to an understanding audience about an ad I got for a personal growth app while scrolling through twitter. The tag line for the ad is “Stop being lazy challenge” above a picture of someone lying in bed.
Obviously changed my settings so I don’t see it again but so much mental gymnastics and reconditioning goes into accepting a mostly horizontal life that something as simple as an ad can really hit you where it hurts. On the plus side, my vast advertising knowledge gained from watching the 'Gruen' tv show tells me this style of advertising is unlikely to be successful. 
She/her
Kabi Kabi Country -
@gretch Aaaagh!
As if we haven't got enough real life saying stupid, offensive things.
Hooray for changing the settings (and for 'Gruen'). -
@gretch I’m so sorry you were upset by hurtful tag lines. It’s plain ignorance on the part of the advertiser. They clearly put their desire for profits ahead of compassion
Here are some virtual flowers from someone who understands
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Oops! I just realised I was so busy appreciating my flowers I didn't actually say thank you @artist55. My brain was probably in one teeny tiny thought at a time mode.
She/her
Kabi Kabi Country -
@gretch no worries! I had forgotten that I sent them
I hope you are feeling better today 🥰
