Living with ME/CFS

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  Daily Chat
  daily community • • Dot  

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  Tuesday morning and chilly in my part of Melbourne. How is life for you today? @Glimmer, so glad you got to enjoy that soup. Microwave ovens can make things so easy! But awful to have a migraine effecting your sight so badly. What a good kitty cat to be so patient. I hope the washing got hung without making things worse and that you got your rest. @Daffy_Dave yes, I think I paced ok for Sunday, but I have been a bit quieter since. Hooray for Friday's soup and a generally reasonable weekend. What a good way of putting it: it is SUCH a boon to be able to do things without cutting corners. I am hoping I have that sort of day today. Hello to everyone reading. I hope you can make today fit your symptoms "Think what you can do and halve it Think how long it will take and double it." Best wishes all
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  Differences in PEM from different kinds of exertion: physical, cognitive, emotional
  • river  

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  @Dot your sympathetic nervous system will definitely ramp up the longer you're upright. My heart rate rises steadily and I start sweating and overheating. It's good cause it keeps you from passing out, but your body can only sustain that for so long
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  What is the best tool you have in your CFS Management Toolkit?
  short answer • • Dot  

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  I would have to say keeping a medical diary of my symptoms and current medications. It helps me a lot during my medical appointments to keep track and remember and also makes it easier to record on centrelink papers my symptoms and what I have tried as I have my diary as a reference.
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  Breathing and CFS
  breathing • • Dot  

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  @iris Thankyou ! That was an interesting read and I have bookmarked it to share with the exercise physiologist.
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  Brain Fog Bloopers
  • crashdummy  

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  @crashdummy lucky indeed
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  Differentiating between PEM and an actual infection
  • river  

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  So tricky! A runny nose was/is the main thing that tells me it is a cold or flu, rather than PEM. I don't sneeze with PEM either. I got to a point where I made life so small I had only slight symptoms, then I can look back a day or two and see when I have over exerted myself, that is the likely cause for PEM symptoms. PS A year ago I had a bad run with mucous running down the back of my throat and a tickly cough that got worse and worse. Not covid. Turned out to be dust mite allergy.
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  A thread for having a good 'ole vent :)
  • Daffy_Dave  

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  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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  Animal helpers
  • iris  

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  What to do about the To - Do list
  to do list • • gretch  

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  @Dot Love it! Soooo....funny ...
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  Brrr it is cold here this morning. What is the weather like where you are? And how does that effect you?
  short answer weather • • Dot  

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  @pemdelapem So glad you are able to live in a place that suits your needs. Brr, too cold for me, but I am very similar with humidity. Hooray for merino underwear!
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  A low-intensity thread for generally chatting
  • Daffy_Dave  

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  @Bee Oh dear - that's a bit of a rough night and quite the adventure! I hope your dog is better behaved tonight, and you're able to recover over the next few days! Take care, and best of luck for the rest of your Monday Totally understand the use of "trot" etc - I'll still use all sorts of phrases that would get me in a lot of hot water legally if they were considered advertising (ie, wildly false advertising!)
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  Best wishes mums
  • Dot  

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  Aye, a great post Dot - ME/CFS is tough enough without kids to look after. I hope you all had as nice a day as possible yesterday
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  A thread for being grateful for things :)
  • Daffy_Dave  

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  Thanks @coco It is a lot bigger than my last freezer space (three drawers!). They can fill up quickly but that is my trigger to eat the freezer out before I forget what everything is
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  Is it just me, or are emotions overlooked these days?
  • Coggles77  

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  @Coggles77 What you speak of, I believe, is one of the greatest crises of our times.
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  How to stay connected to the outside world as a result from being bedbound and or housebound?
  • donnamarie  

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  @river Thanks for sharing, River! I can relate to going to the supermarket, doctors etc. It is about the only time I interact too face to face! Like you I rely heavily on the internet. Thanks, again.
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  Fear of doctors
  • Siren  

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  @Daffy_Dave said in Fear of doctors: https://www.emerge.org.au/health-professionals I wish this could go out to ALL GPs Aus wide!
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  Playing musical instruments
  • Caitlyn  

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  @river Thanks. Sorry to hear that you have so much amazing musical ability inside you and cannot give it full flow as you would love, I'm sure. However we are adaptable creatures and it sounds like you have at least some way of having music in your life. I also appreciate the idea of a keyboard. It may be something I can look into. I have never played keyboard before but did play some African Marimba for quite some years which I loved. That would give me some idea of how it all works!
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  What is a good tip someone gave you, that has helped with managing CFS?
  short answer • • Dot  

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  @Ember I'm glad you are inspired.
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  The unmet needs of people living with Myalgic Encephalomyelitis: The case of British Columbia, Canada.
  • Elizabeth S  

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  @Elizabeth-S Thanks for posting this, it is interesting and helpful for explaining the effects MECFS has on isolation and why. I have allied health visitors coming over the next couple of weeks and I'm over explaining ME101. I can print, highlight and they can read and ask for a copy. I find if I take a doc away the person nearly always wants a copy. It could educate more people.
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  What did you do with your TPD payment?
  • Gigi McQueen  

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