Emerge Australia logo

    Emerge Australia ME/CFS Community Forum

    • Register
    • Login
    • Search
    • Categories
    • Unread
    • Recent
    • Tags
    • Popular

    A thread for having a good 'ole vent :)

    Community Room
    24
    266
    2964
    Loading More Posts
    • Oldest to Newest
    • Newest to Oldest
    • Most Votes
    Reply
    • Reply as topic
    Log in to reply
    This topic has been deleted. Only users with topic management privileges can see it.
    • Daffy_Dave
      Daffy_Dave Community Moderator last edited by

      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 ๐Ÿ™‚

      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 ๐Ÿž, 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

      gretch T 2 Replies Last reply Reply Quote 5
      • gretch
        gretch Community Moderator @Daffy_Dave last edited by

        @Daffy_Dave fellow bread enthusiast here. It's no fun when your comfort food turns on you.

        She/her
        Kabi Kabi Country

        1 Reply Last reply Reply Quote 2
        • Coggles77
          Coggles77 last edited by

          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.

          1 Reply Last reply Reply Quote 5
          • river
            river last edited by

            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!

            Pronouns: they/them - ME/CFS since 2017

            1 Reply Last reply Reply Quote 1
            • T
              Tess @Daffy_Dave last edited by

              @Daffy_Dave

              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 Iโ€™m struggling to read and take in info....which is frustrating as there is lots I would love to look into more and Iโ€™d also really love to help others as well and I feel dam useless really!!!!โ˜น๏ธ

              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... whatโ€™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 Iโ€™ve been doing that for sooooo long now ๐Ÿ™ƒ๐Ÿ˜‚ 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 ๐Ÿค—๐Ÿ€๐Ÿฆ‹

              Tess ๐Ÿค—

              Daffy_Dave C 2 Replies Last reply Reply Quote 6
              • Daffy_Dave
                Daffy_Dave Community Moderator @Tess last edited by

                @Tess Much sympathy and empathy Tess - take care, and well vented ๐Ÿ™‚

                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

                T 1 Reply Last reply Reply Quote 3
                • T
                  Tess @Daffy_Dave last edited by

                  @Daffy_Dave said in A thread for having a good 'ole vent ๐Ÿ™‚:

                  @Tess Much sympathy and empathy Tess - take care, and well vented ๐Ÿ™‚

                  Thank you and you too ๐Ÿ˜€

                  Tess ๐Ÿค—

                  1 Reply Last reply Reply Quote 2
                  • C
                    crashdummy @Tess last edited by

                    @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 ๐Ÿค“

                    1 Reply Last reply Reply Quote 4
                    • river
                      river last edited by

                      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

                      G Daffy_Dave 2 Replies Last reply Reply Quote 2
                      • G
                        Glimmer @river last edited by

                        @river sorry you are back into the dreaded PEM. Itโ€™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. ๐Ÿค—. Both on line if Iโ€™ve confused you.

                        1 Reply Last reply Reply Quote 3
                        • Daffy_Dave
                          Daffy_Dave Community Moderator @river last edited by

                          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!

                          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

                          1 Reply Last reply Reply Quote 1
                          • artist55
                            artist55 last edited by

                            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 havenโ€™t heard from him since.

                            Today was a bad day health-wise but I had to go to work so hubby phoned the doctorโ€™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 didnโ€™t include my test results.

                            So instead of being 4 weeks closer to an answer we are back at square one. Iโ€™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!

                            Daffy_Dave 1 Reply Last reply Reply Quote 2
                            • Daffy_Dave
                              Daffy_Dave Community Moderator @artist55 last edited by

                              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

                              artist55 1 Reply Last reply Reply Quote 1
                              • artist55
                                artist55 @Daffy_Dave last edited by

                                @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 Iโ€™ve had practise waiting patiently ๐Ÿ˜‚

                                Daffy_Dave 1 Reply Last reply Reply Quote 4
                                • Daffy_Dave
                                  Daffy_Dave Community Moderator @artist55 last edited by

                                  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!

                                  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

                                  1 Reply Last reply Reply Quote 3
                                  • gretch
                                    gretch Community Moderator last edited by gretch

                                    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 โ€œStop being lazy challengeโ€ above a picture of someone lying in bed. ๐Ÿ˜ฎ Obviously changed my settings so I donโ€™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. โ˜บ

                                    She/her
                                    Kabi Kabi Country

                                    Dot artist55 2 Replies Last reply Reply Quote 5
                                    • Dot
                                      Dot @gretch last edited by

                                      @gretch Aaaagh! ๐Ÿ˜ต As if we haven't got enough real life saying stupid, offensive things.
                                      Hooray for changing the settings (and for 'Gruen').

                                      Wurundjeri Country

                                      1 Reply Last reply Reply Quote 2
                                      • artist55
                                        artist55 @gretch last edited by

                                        @gretch Iโ€™m so sorry you were upset by hurtful tag lines. Itโ€™s plain ignorance on the part of the advertiser. They clearly put their desire for profits ahead of compassion ๐Ÿ˜”

                                        Here are some virtual flowers from someone who understands๐Ÿ’ ๐ŸŒผ๐ŸŒป๐ŸŒท๐ŸŒบ

                                        gretch 1 Reply Last reply Reply Quote 3
                                        • gretch
                                          gretch Community Moderator @artist55 last edited by

                                          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. โ˜บ

                                          She/her
                                          Kabi Kabi Country

                                          artist55 1 Reply Last reply Reply Quote 3
                                          • artist55
                                            artist55 @gretch last edited by

                                            @gretch no worries! I had forgotten that I sent them ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚ I hope you are feeling better today ๐Ÿฅฐ

                                            1 Reply Last reply Reply Quote 2
                                            • First post
                                              Last post