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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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PracticingAcceptance
- Author PracticingAcceptance
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...or to undertake an activity or to rest instead, etc.
This is, according to guidance of my CFS clinic, something that happens before treatment begins.
I think the idea is that I'm meant to plan my activity levels in advance and just stick to it.
I haven't got my head around this yet. I had...
I have been drinking 12-15 pints of water a day for as long as I have had ME/CFS.
The CFS specialist nurse recently said that it's NOT an ME symptom and I need to get it checked out.
I don't have diabetes - checked for that within this year.
I am due a blood test on my liver.
In the last few...
The past week I replaced my daily long black coffee with decaf long black.
I've been doing increasingly better with doing 5-10 mins yoga in the morning and the eve.
I've been doing a little more meditation.
I've been trying to get my body clock to change - to wake up earlier. This was in...
Sept 2016 when I first got ill
- Treated it as flu. Stayed in bed, ate soup and oranges, went to local cafe when I could (perhaps every 2-3 days).
- By Nov, attempting to go to the odd work meeting.
- Psychotherapy - since 2015, ongoing, weekly.
- Using the Daylio app to track my happiness and...
(Might just be true for me)
- Anger gives me a lot of energy. On day 3 I get bad PEM.
- I'm so thirsty - wanting more water than I ever have. I wake up almost every night to get more water (and to pee). I sometimes think it's neurological and I don't actually need water. However if I ignore my...
I went to my first specialist appointment yesterday, and got my diagnosis confirmed. It was at Sutton Hospital, which is one of the few CFS clinics in the UK.
It's about an hour's journey from my house by public transport, which I had to break up with rests. I heard that people have to travel...
I'm doubting myself. Am I keeping myself ill on purpose?
Am I doing enough to try to make myself better? Am I doing the right things?
The Lighting Process has made all of the difference to people that I have met offline, and yet it's so ridiculed here. I don't know what to think. It's so...
I REALLY don't want to have people look after me. I don't want my life to be invaded. I want to act according to how I feel, not according to how other people want me to act. Even if they think it's for my own good. What's best for me is acting according to how I feel - this is how I can feel...
At the end of some days, I think about what is in store for the next day. I plan. I think, ooh, I have no meetings tomorrow, so I could go over to that lovely sunshiney cafe and have a tasty coffee. I could bring my pens and do some drawing. I could bring a book and read, or my magazine. I could...
I write this kind of thing in my sketchbook a lot, but sometimes I feel like typing it and sharing it with other people, because I hope that others will relate :)
Affirmations
Today I feel more optimistic about the future. I am empowered because I am taking action to change my circumstances. I...