• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. Nightingale

    Aust DSP living with partner query (pls help! :D)

    Hello everyone :) My girlfriend and I are moving in together. We live in Australia. I am on the disability support pension and she works full time, earning about 52,000 per year. I have not been able to find any information on how my partner's income affects my payment when we live together, or...
  2. Nightingale

    The benefits of the Paleo diet and tips

    I've been feeling pretty blue lately, so I thought I'd write about something that makes me happy - the paleo diet. It makes me happy because changing my diet has changed a lot of things in my symptoms and my life, not just one area like a medication would. I urge all of you to watch this...
  3. Nightingale

    Need help trying to find my limits and daily routine

    Hello lovely forum people! I have recently been using activity logs and record keeping to try and plan my days better, find my limits and find when my peak energy levels are. I have had ME for four years, but it has been a long while since I tried any sort of record keeping. I'm also using...
  4. Nightingale

    What do you do all day?

    I'm in bed like over 6 hours a day. What do you do all day? I'm so bored. I've been sick for so long. I've watched all the good t.v. I've tried writing, painting, crocheting, listening to podcasts, reading, singing, learning a different language. I've reached my peak. I'm really, horribly bored...
  5. Nightingale

    Driving and eating and heat make it worse...for real?

    @Float Hello and welcome! Just wanted to quickly put forward an idea about your eating. I used to feel really really tired after eating as well. It turned out I had gluten intolerance. If you wanted, you could try just for a couple days avoiding gluten (so bread, pasta, biscuits, anything that...
  6. Nightingale

    My tips for dealing with the heat

    It's summer where I live, and worse yet, we're in the middle of a heat wave. It's been over 30 degrees Celsius for a few days, which is 86 Fahrenheit, and I don't have air con, sadly. I've only just started to figure out the best ways for me to keep cool and I thought I'd share. - Start the day...
  7. Nightingale

    Shouting into the void

    Frustration. I've been uncomfortable and in pain ever since I got CFS, but this past week has been awful. It seems like every day my whole body is covered in flu-like aches and pains. Every muscle and joint cries out for attention. No amount of bed rest, pillow rearranging, hot baths or...
  8. Nightingale

    How do you rest?

    Hey guys! We all know rest is important, but I was interested in how you guys rest. Feel free to answer any or all of the questions below.:thumbsup: -Do you rest with your eyes closed, or do you rest while watching tv? -Do you rest while listening to music or a podcast? -Do you rest lying...
  9. Nightingale

    What is your lifestyle like?

    Hey guys, here's my list: - Able to go out 3-4 times a week for 1-2 hours. Grocery store, coffee shop, library -Have muscle aches, fatigue and brain fog as my biggest symptoms. -Take 2-3 rests with eyes closed per day (listening to podcasts), a nap if I've had a really bad day. - I use...
  10. Nightingale

    Goth fashion helps with my depression, paradoxically.

    It's been a hard few months. On one hand, physically I've seen some really encouraging improvements. I've been able to do more. I've cut out gluten, which was making me very fatigued after meals. I feel hope about my physical condition moreso than ever. But there was a big setback. I'm an...
  11. Nightingale

    Howard Bloom talks about recovering from MECFS

    Hello! I found this article on increasing oxytocin through behaviours, and I thought some people may be interested. Enjoy! :) https://www.psychologytoday.com/au/blog/the-moral-molecule/201311/the-top-10-ways-boost-good-feelings
  12. Nightingale

    Am I getting better? Thoughts appreciated.

    Hello! No, no particular treatment. I have been better with my pacing and pre-resting since the beginning of the year. I had really started to fall back into bad habits of not pacing, so I had to teach myself how to pace all over again. I also do less resting laying down, more sitting up in an...
  13. Nightingale

    Am I getting better? Thoughts appreciated.

    It's actually winter here, but very mild winter. :)
  14. Nightingale

    Am I getting better? Thoughts appreciated.

    I didn't try any treatments, really, but I re-acquainted myself with pacing and pre-resting at the beginning of the year. I had been getting away from pacing and sliding back into "boom and bust". I also stopped resting lying down so much. I try to rest in an armchair with my legs elevated...
  15. Nightingale

    Am I getting better? Thoughts appreciated.

    Hello all, I've been ill for 2.5 years, with moderate to severe disability. But lately I have noticed a lot of improvements. It didn't happen all at once, but over the past few months things have been getting steadily better. I'll put it in list form to make it easier: - I used to have to have...
  16. Nightingale

    Married, feeling left out

    My husband started playing D&D. I'm glad. He's really enjoying it. He's my carer, so he needs friends and a life outside of me. I thought I was really happy for him. Then today, an unexpected feeling came over me. I'm getting ready to celebrate tomorrow the Autumn Equinox. I can't do much, but...
  17. Nightingale

    Friend date ideas?

    Thanks for the ideas! I looked it up and there's a place to feed the ducks in some gardens near me, so I think I'm going to go with that idea. :)
  18. Nightingale

    Friend date ideas?

    Hey guys! So I've made a friend online who is an able person. She's lovely, but she doesn't know I have CFS. I will tell her, I just haven't yet (I never know how to put it in a way that people take it seriously). Anyways, I want to meet up with her for a "friend date", but I'm not sure what...
  19. Nightingale

    Have you had to relocate due to your disability?

    Hi @ratmom I had to relocate too. I live in Australia. I was living in Melbourne and the weather really upset my condition. We had no air conditioning and it could be really super hot one day, then incredibly cold the next. I ended up moving to the Wollongong area, and the weather is much more...
  20. Nightingale

    Small lifestyle changes that have helped me :)

    Hello! After being sick for 2 years, I've made a few adjustments to my management this month and I've seen some real improvement. I'm not talking recovery, just improving my pacing and able to push my limits a bit more. I thought I'd share what I've changed and ask you all what little changes...
  21. Nightingale

    Comment by 'Nightingale' in 'A bit of venting.'

    Hey Hikaru, I just want to say that you're totally fine to feel down sometimes. It does suck to not have the life you used to, and it's fine to vent. I totally relate on the friends thing. It is really hard to maintain friendships when you don't have the energy and they aren't understanding...
  22. Nightingale

    GET experiences??

    Thank you for your responses! I've read a couple of the articles you suggested @Richard7 and I think I could try some anaerobic exercise, like gentle stretching to start with. It's a far cry from what I used to do when I was well (running and exercise bikes were my thing), but it's something at...
  23. Nightingale

    GET experiences??

    Hello everyone! Hope you've had a lovely holiday season and new years! I was just wondering what your collective experiences have been with Graded Exercise Therapy? I tried it for a few months about a year or more ago, and I got up to doing a 30 min walk every day. Then I relapsed pretty hard...
  24. Nightingale

    I don't want to die

    I'm writing this because it feels too painful to talk to my family members about it. Painful for them. I have MCAS and I feel like I've just started another flare of anaphylactic reactions. I had a reaction last night, none today, but I have so many symptoms that are mast cell related. I don't...
  25. Nightingale

    Travelling and feeling better - anyone feel the same?

    Thank you all so much for your input! I'm glad to know it's not just me! Also @JaimeS I do feel hot climates are worse for me as well. I have MCAS and I have recently had to move interstate as the extreme heat of where I used to live was awful for my ME and MCAS.
  26. Nightingale

    Travelling and feeling better - anyone feel the same?

    Hello Friends! I have just traveled domestically and I have had some unexpected events, I was wondering whether anyone else has experienced a similar thing. So, when I'm at home, I usually can do something small in the morning such as get groceries, bake, or concentrate on some writing. After...
  27. Nightingale

    Accommodation in Wollongong Au

    Hey everyone, I'm still looking and open to all suggestions! :)
  28. Nightingale

    Accommodation in Wollongong Au

    Thank you so much! :)
  29. Nightingale

    Accommodation in Wollongong Au

    Hello @CCC We are looking to rent. We would preferably like to be close to the hospital as I have pretty frequent IA, and close-ish to the beach if possible. Also, I cannot go up a flight of stairs.
  30. Nightingale

    Accommodation in Wollongong Au

    I'm not sure if this is the correct place to post this, sorry if it isn't. However my husband and I are moving to Wollongong very soon and were wondering if anyone knows anywhere to stay. We are looking for a small one bedroom apartment/unit or granny flat. We were just wondering if anyone might...