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    • K
      Kristy4Coffee @sapphire777 last edited by

      Hi @sapphire777, dammit, I'm so sorry, it's so frustrating, right?

      Pronouns: She/her. CFS since 2010. Still learning.

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

        Good morning,
        It is going to be warm today in Melbourne which is good, unless it gets too warm (I have a very narrow 'comfy range'). I also have some tiny seedlings that I had better shelter from the full sun. How are yours @sapphire777?

        @Glimmer that was beautiful!

        @Kristy4Coffee thankyou. Haha yes, first rule of ME/CFS: the one that suits us is the expensive one.
        I am glad to have a name to look out for.

        Sending good wishes to everyone who has woken up and thought, damn! today is not feeling good. Hard days ❤ I hope it might be surprisingly easier than expected. That happens sometimes 🤞

        I'm off to pour myself a jug of water to sit on the bench and remind myself to drink it. That is my proactive start to the day.

        Miso the cat is on my knee, purring.

        ciao

        1 Reply Last reply Reply Quote 3
        • S
          sapphire777 last edited by

          @Dot my kids have been very good this week. My seedlings area probably ok and will love this warm weather today.
          I've crashed a bit today, combination of doing a little too much yesterday and am interrupted sleep. It's hard to get balance right

          K 1 Reply Last reply Reply Quote 4
          • river
            river @Kristy4Coffee last edited by

            Thank you @Kristy4Coffee ooh do you have a favorite flavor? I am very sensitive to artificial flavors so that can be a struggle for me.

            These last few days I've been trying to apply for DSP and looking for accessible housing, both of which are such a challenge. I keep thinking I've found the perfect place only to discover it's up 3 flights of stairs 🤦 older buildings always have totally unnecessary steps to get inside and if it's an upper floor unit there won't be a lift. You would think that modern buildings would be built with accessibility in mind but alarmingly that isn't always the case. Also they never have the charm or the natural light that the older ones do, and cost more to boot. Sigh...

            Pronouns: they/them - ME/CFS since 2017

            K 1 Reply Last reply Reply Quote 2
            • K
              Kristy4Coffee @river last edited by

              Hey @river - oh wow I hear you. I swear, I never truly noticed how many stairs there are in the world until I started to have crash days. On a bad day, two flights of stairs may as well be the moon!

              For my protein, I really love the Salted Caramel flavour;
              However, I usually buy a bulk size of vanilla and add my own flavours (like cinnamon; coffee; almond butter; banana; frozen blueberries; or maple syrup) so that I don't get bored with one flavour.

              They also have an 'unflavoured' version called "Multi-Purpose Mix", which I haven't tried. It has zero flavour and doesn't have artificial sweeteners - because it's designed for baking etc, so you can add your own.

              Pronouns: She/her. CFS since 2010. Still learning.

              1 Reply Last reply Reply Quote 2
              • K
                Kristy4Coffee @sapphire777 last edited by

                Hey @sapphire777 - love the thought of your seedlings just cozying up to the sun today. I feel you on the 'doing too much' and interrupted sleep. I'm right there with you right now. I don't know how I am 'braining' enough to get these words typed but I feel cross-eyed. It's so hard to figure out a safe pace, right? Sending ohhhh.... computer hugs.

                And @Dot, thanks for the reminder to drink water. I was doing so well and then when I crashed recently I suddenly 'fell off the wagon' water wise.

                PS, can we patent the word "forswunked"? And possibly "besmackered"? Now we just need a word for that time when you're so darn tired but your body refuses to sleep. Anyone?

                Pronouns: She/her. CFS since 2010. Still learning.

                river gretch 2 Replies Last reply Reply Quote 2
                • river
                  river @Kristy4Coffee last edited by

                  @Kristy4Coffee it's not a made up word but I love the word "defatigable"!

                  Pronouns: they/them - ME/CFS since 2017

                  1 Reply Last reply Reply Quote 3
                  • gretch
                    gretch Community Moderator @Kristy4Coffee last edited by

                    @Kristy4Coffee said in October Chat:

                    Now we just need a word for that time when you're so darn tired but your body refuses to sleep. Anyone?

                    Hi @Kristy4Coffee I think it was actually @river who introduced me to the saying “tired but wired” I think of it every time I spend the night unsleeping.

                    She/her
                    Posts written on Kabi Kabi Country

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

                      Hello everyone,
                      Thursday already.
                      One of my 'feel like a grasshopper that's gone through the windscreen' mornings. I'm taking it slowly with lots of mugs of tea.

                      Thunderstorm Asthma warning for much of Victoria! Especially the west, but moderate for Melbourne so I will close up the house this afternoon and stay inside.

                      @sapphire777 Hello to the kidlets! And to the seedlings.
                      I've only got a few, and had them covered with jars that I've taken off so they catch this morning's rain, but I will re-cover them when the hard rain is due. (2 chili and 2 spaghetti squash sprouted from seed.)

                      Oh my heart goes out to you (and all of us) trying to get the balance right. Bad Sleep is like the disruptive character they throw into a reality show so that nothing gets settled.

                      @river, so right to avoid anywhere with steps! I can manage the two steps to my back door, but it is a rare day I can go up the flight of stairs to visit my neighbours on the top floor. I have to stand and yell "Keifa, are you there?" or whatever. 'No stairs' had to be one of my requirements (scared of being trapped if lifts broke down too). Luckily I'm downstairs in a Department of Housing spot purchase flat in a block of 8 1960's flats. I've been here 16 years now and so grateful. (not charming, but very practical).
                      Hoping you find a good one, the very next one you check out. 🤞

                      And more good wishes for getting through that DSP application. ✨

                      @Kristy4Coffee isn't it easy to 'fall off the wagon' water wise! I need constant vigilance.

                      'Tired but wired' is a great description of the times we are so darn tired and our body refuses to listen.
                      I call it the 'toddler tantrums' as I have way too much experience of trying to get toddlers to bed before they get overtired and it turns into a battle royal!
                      I get so passed it, it is easier to sit at the computer playing some stupid game than it is to get up and clean my teeth and get ready for bed. Part of my brain is prostrate on the floor saying "No No NO!" and not letting me even pick them up!

                      @river I think I have only ever used indefatigable. Defatigable is great.

                      Well, today will be a snail day for me, I'll try to leave a shimmery trail.
                      Cheers all

                      river 1 Reply Last reply Reply Quote 3
                      • C
                        coco last edited by

                        Crash time for me
                        Yay 🙄

                        Pushed too hard 24hrs ago…
                        Although Didnt think i pushed thaat hard at the time.

                        Anyone get ‘blessed’ with migraines on the way down?

                        Wish me luck fellow troopers…

                        Dot S 2 Replies Last reply Reply Quote 3
                        • Dot
                          Dot @coco last edited by

                          @coco Wishing you so much luck and ease 🦋 🐦 🐉 🌿 🐥

                          I often get 'nearly a migraine' and just a few actual migraines (they arrived after I got ME/CFS after me being the only person in my family that had not had migraines). But I do know it is very common for migraines to pair with crashes and some poor people struggle with constant migraines.

                          I do hope you are lucky this time and the migraine is fleeting. I hope you are able to be still and quiet until it is better. Best wishes. 🕊

                          1 Reply Last reply Reply Quote 2
                          • river
                            river @Dot last edited by

                            @Dot I use a variety of mobility aids including a wheelchair so steps are non negotiable for me. I can walk a little way and manage a couple of steps, but I can't climb stairs and I have to be able to get my wheelchair into the building! Starting to think I got really lucky with my last home that it was fully accessible.

                            Pronouns: they/them - ME/CFS since 2017

                            Dot 1 Reply Last reply Reply Quote 2
                            • Dot
                              Dot @river last edited by

                              @river Oops I should have remembered you use a wheelchair! Hope you find a wonderful place with lots of character and completely renovated to be completely accessible!

                              1 Reply Last reply Reply Quote 1
                              • S
                                sapphire777 @coco last edited by

                                @coco said in October Chat:

                                Crash time for me
                                Yay 🙄

                                Pushed too hard 24hrs ago…
                                Although Didnt think i pushed thaat hard at the time.

                                Anyone get ‘blessed’ with migraines on the way down?

                                Wish me luck fellow troopers…

                                yeah I have had a migraine for more than 24 hours that eases with pain killers for maybe 1 hour and then goes back up again. So a small reprieve every few hours which is something.

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

                                  Belated hello from me 👋Survival has been the main focus lately.

                                  Yesterday the hearse came to collect the dearly departed neighbour - 4 weeks after he passed. @Dot it turns out the ice van was where they’ve been keeping him during the wake/vigil. There has been a loud party every night for 4 weeks - last night it ended at 2 a.m.

                                  The whole family is exhausted. We even tried camping out in the family room at the back of the house but we could still hear the noise. The upside is that I’ve had some company in my fatigue symptoms 😂 Let’s hope it will end soon.

                                  Sending best wishes- glittery snail trails and all.

                                  1 Reply Last reply Reply Quote 3
                                  • Dot
                                    Dot last edited by Dot

                                    Good morning,
                                    it was a wild windy night here, 🌬
                                    I hope others in the path of it are okay, and still have the power on.
                                    Still wild! But not howling like it was a couple of hours ago.🌪

                                    @coco, @sapphire777 I do hope you have woken up this morning with your migraine gone. Do you get that sort of brain shadow that lingers afterwards?
                                    I really hope today is easier 🌸

                                    @artist, I almost suggested a couple of times that maybe the departed relative's body might be in the ice van, but decided it was inappropriate and maybe too macabre. But no!
                                    Ah well, there is likely to be some peace and quiet now, and I do hope you and Mr Artist can rest and recover in that beautiful silence.

                                    Yes 🥇 focussing on survival is the most important thing until the end of the year. Everything else goes on hold.
                                    I wish you got our Melbourne cup long weekend! It is a 4 day one. Maybe just don't go in on Monday and Tuesday?

                                    And some more gold medals to everyone for getting through another ME/CFS day 🎖 🎖 🎖 🎖 🎖 🎖 🎖

                                    I got through yesterday surprisingly well. I morphed from a snail into a gardener and swept up leaves, planted spaghetti squash seeds for my sister, and spread some compost. I even had enough energy to get the dishwasher full and on before bed! That is extraordinarily rare. 💃
                                    But ooh, today will be slower. 🐢

                                    I've started with a good breakfast (always a bonus if I get a serve of veggies with my breakfast as I aim for 7 serves a day) and now I am off to get another coffee and I will come back and see if anyone else is sitting here with a coffee too. ☕ ☕ ☕ ☕ ☕ ☕

                                    S C 2 Replies Last reply Reply Quote 2
                                    • S
                                      sapphire777 last edited by

                                      Well the panadeine forte got rid of the migraine plus with the vertigo meds I feel some sort of normal. I feel depressed though today. I can't do anything around the house and it's driving me mad. I'm just having one of those days

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                                      • S
                                        sapphire777 @Dot last edited by

                                        @Dot said in October Chat:

                                        Good morning,
                                        it was a wild windy night here, 🌬
                                        I hope others in the path of it are okay, and still have the power on.
                                        Still wild! But not howling like it was a couple of hours ago.🌪

                                        @coco, @sapphire777 I do hope you have woken up this morning with your migraine gone. Do you get that sort of brain shadow that lingers afterwards?
                                        I really hope today is easier 🌸

                                        @artist, I almost suggested a couple of times that maybe the departed relative's body might be in the ice van, but decided it was inappropriate and maybe too macabre. But no!
                                        Ah well, there is likely to be some peace and quiet now, and I do hope you and Mr Artist can rest and recover in that beautiful silence.

                                        Yes 🥇 focussing on survival is the most important thing until the end of the year. Everything else goes on hold.
                                        I wish you got our Melbourne cup long weekend! It is a 4 day one. Maybe just don't go in on Monday and Tuesday?

                                        And some more gold medals to everyone for getting through another ME/CFS day 🎖 🎖 🎖 🎖 🎖 🎖 🎖

                                        I got through yesterday surprisingly well. I morphed from a snail into a gardener and swept up leaves, planted spaghetti squash seeds for my sister, and spread some compost. I even had enough energy to get the dishwasher full and on before bed! That is extraordinarily rare. 💃
                                        But ooh, today will be slower. 🐢

                                        I've started with a good breakfast (always a bonus if I get a serve of veggies with my breakfast as I aim for 7 serves a day) and now I am off to get another coffee and I will come back and see if anyone else is sitting here with a coffee too. ☕ ☕ ☕ ☕ ☕ ☕

                                        that's great Dot, amazing work

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

                                          Congratulations on achieving so many things @Dot . But now I need to use my teacher voice and say, “Sit down please, young Dot and don’t move from your seat again!” 😂👩🏻‍🏫

                                          Happily we got a decent night’s sleep last night as it was all quiet in the neighbourhood. 💙 Lots of cars arrived so not sure tonight will be as quiet…

                                          Also, I managed to almost finish the portrait- only a few finishing touches to go. So joining you in a virtual coffee to celebrate 🎉

                                          I hope everyone is able to collect a few beautiful moments today for the memory bank 🥰

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

                                            Good morning everyone,

                                            Thanks @artist55 My own teacher voice was also counselling me and I did have an easy day (and no extra energy for anything so this morning I have a kitchen to clean up!).
                                            But this morning I got myself dressed and walked maskless through the sweet sun to the big op shop round the corner. (Masked and QR'd) I was first in! The bowls I wanted were still there from pre lockdown, plus I scored 3 light tshirts (2 linen and one cotton), and two other tops, and a jug to replace one I broke. Then back home through the sun. I'm a happy Dot!

                                            I'm having a cuppa at the computer and then I will lie down!

                                            Did you manage to get another peaceful night?
                                            Hooray for being able to work on the portrait. What a treat.

                                            Sending best wishes to everyone that today holds some precious times 🌙 🌿 🦉 🐇 🐓 🐖

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