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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
- Create date
- Updated
First posted in summer 2021
Updated spring 2023
I recently put data about treatments I've tried into Stuff That Works to help build their database. They're hoping to identify treatments that work for subgroups. I thought it might be helpful to share my big old list here.
I've split it up into...
Introduction to me
- ME/CFS since 2016. Mostly housebound. Varied btwn moderate to severe to moderate-severe.
- Designer, entrepreneur, management consultant, professional events. Do-gooder, thinker & doer, visionary (LOL can hardly believe that was me). Haven't been able to work since 2017...
I've just had an unusually low moment. It's December and my second job to looking after my health is making christmas gifts. Nothing extravagant, just bath salts. My social calendar is full, with one modest social occasion a week (think a quick mocktail with my cousin in a bar up my street, or...
My liver AST (I think it's called) was 74 last month, now it's 88. It should be under 40. I don't really know what that means or if it's a serious problem, but it's rising so I'm having more blood tests next week.
I brought all my supplements, and the doctor looked through all of them. He...
So I've just had my last physiotherapy appointment. I've had 6 appointments over the last 9 months (which is a pace that worked).
I started physio because I wanted to make sure I was doing all I could to prevent any deconditioning from happening, and also because I had back pains from weak...
How, where, when
- Dr Bansal is working at St Anthony's hospital in Surrey. It's private. You have to ring up Spires Healthcare for an appointment
- I found Spires Healthcare a bit difficult to get through to, it took about 4 phone calls over 3 weeks to get someone on the phone who could answer...
Being moderately-severely ill with ME/CFS, I can leave the house once or twice a week, and see a friend once every couple of weeks, without worsening my symptoms long term. I have worsened symptoms in the short term.
There are weeks when it takes a couple of days to recover from an outing to...
1. Go to a gig (end Feb 2019). I think the last time I went to a gig was July 2017. It was a huge gig in a stadium - not talking about a small pub gig. Though I can't remember having been at a small pub gig since 2017 either :)
2. Walk at a normal speed. This is thanks to my rollator. It was...
1. I went into a shop I've been to many times before - and took my rollator for the first time. I spoke to a shop assistant about a product. Once we'd finished talking and I paused to manoeuvre the rollator, he asked if I knew where the till was. Of all the times I've been in this shop, I've...
Some days, you will deal with things badly. You are exhausted, tearful, in pain, anxious. You can barely make it down the stairs, and you can barely make a sentence make sense. So, you will mess up. You will say the wrong thing. You will inadvertently hurt someone's feelings. (If you realise you...
"Is this stuff for you?"
"Yes, it's for me."
"But there's nothing wrong with you. You look fine."
"That's why it's called invisible illness. I feel ill every day, I can't leave the house much, I'm weak, I struggle to walk..."
"You look perfect."
"Thank you, but I'm very ill."
A delivery man for...
I realise that I am used to staying at home now. I don't desire so much to leave the house. I've adjusted to not going out every day. My expectations have changed, so I don't get upset about this as easily as I used to.
Not going out of the house for two days seemed awful, a couple of years...
Written from the perspective of me now, to me 18 months ago
There are sports bottles with straws which mean you don't have to put up with spilling water on your face when you drink in bed. Check out One Green Bottle for pretty ones.
That discomfort you feel all the time - discomfort is low...
Planning further ahead and freezing food.
To notice when my body says no.
To know the difference between a warning 'no you will pay for this' and moan 'no I don't want to'. e.g. my body is stiff in the morning and moans it doesn't want to bend, but carrying on flexing is helpful. Concentrating...
One of the effects of being mostly homebound is that I have fewer adventures. Adventures were a big part of my life. I miss them.
So I'm compiling a list of adventures to have when you're stuck at home. I invite you to tell me your ideas, and I will add them to this list. Please comment on this...
Just been having a look online to see what other people have in their freezer to get ideas, but I can't find anything. (Probably not looking hard enough!) Anyway here's what I've got in my freezer. I have upped my freezer game A LOT. Before having ME/CFS I barely thought about freezer food. Now...
Getting past my fear of resting
Earlier on in my illness, I felt a fear of resting, and of falling asleep. I was afraid that if I rested, or fell asleep during the day, I wouldn't be able to wake up or get going again.
I was afraid based on experience. Whenever I rested, it made me more...
From @Learner1 's markers
Total hours of sleep in 24 hours - 9
Number/hours of naps per day - 2.5-5hrs non-sleep meditative rests. Occasionally 20 min sleeps up to twice a day. Rarely sleep more in the day, 1hr if it happens.
Ability to sleep through the night with quality sleep - rarely sleep...
I tried to Skype with my team during a session they were having, and I couldn't really contribute, and now I feel not useful, and I really miss working.
They were all together in a really cool-looking working environment. They were being productive and having fresh ideas... they tried to tell...
- no AV after dinner
- phase out drinking as much water - half a cup less to start with - drinking too much water may be habitual.
- though my liver test result is out of the recommended limit, it's not that bad.
- my kidneys are very good
- vit D, vit B12, magnesium (been on those for a while...