alex3619
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http://forums.phoenixrising.me/index.php?entries/masks.680/A million times yes! I was raised with that Protestant work ethic: just work harder.
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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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http://forums.phoenixrising.me/index.php?entries/masks.680/A million times yes! I was raised with that Protestant work ethic: just work harder.
I thought it was implied by the context. I meant slow on the uptake (directly), with an suggestion of slow in it's old, possibly only British meaning, of slightly retarded (in that i don't see the bleedin obvious).Slow, or determined?
It took me a long time to realize I cannot control or beat this by myself. I was determined to keep trying, until I had that realization.
I just wasn't psychologically prepared to consider that I may become so much worse
I wish someone had warned me that reading all you can, researching, having hope and fundraising to see a specialist who knows about M.E and trying to follow their advice could make you a lot more ill.
Every intervention, drug and Dr I have seen has left me worse off than before as I e believed in the notion that you 'must fight it' ' must never give up' and ' must always strive to get better'.
I wish I'd spent the money instead on restaurant meals while I could still eat them, an off road wheelchair while I could still enjoy going out, and traveling to see my kids and friends instead of my Dr, which was always too much and has meant I only saw my granddaughter once in a year.
I wish someone had warned me that reading all you can, researching, having hope and fundraising to see a specialist who knows about M.E and trying to follow their advice could make you a lot more ill.
Every intervention, drug and Dr I have seen has left me worse off than before as I e believed in the notion that you 'must fight it' ' must never give up' and ' must always strive to get better'.
I wish I'd spent the money instead on restaurant meals while I could still eat them, an off road wheelchair while I could still enjoy going out, and traveling to see my kids and friends instead of my Dr, which was always too much and has meant I only saw my granddaughter once in a year.
I wished that someone had told me that I could become worse after being sick for 20 years or so.
While we can get worse in the long run, we can also improve. Years of a downturn can lead to years of an upturn. Patience is a necessary thing if you have ME.
Be selfish. Focus on what you need and what you want. Mix it up a bit.
Best thing for us, not easy advice to take.
ETA: 15 minutes still makes a memory. I'm not talking about half a day or even an hour out in a kayak or motorised mountain-bike, test drives are great in that they are free or cheap and not too long
I know nothing about Holtorf other than his model attached here.That's interesting, because several other people found Holtorf to be a waste of time and money.
You can do a search on Holtorf, see what people have said.I know nothing about Holtorf other than his model attached here.
It struck me as a good model to work with as my doctors have identified and are treating significant problems in every single one of the boxes in his diagram and I am improving.
I don't know how Holtorf treats the boxes, but my doctors seem to know what to do...
- comprehensive hormone protocol
- comprehensive nutrient protocol
- mitochondrial membrane support and mito nutrient cocktail
- immunomodulators, IVIG, antivirals and antibiotics
- heparin
- detox and liver support
- intestinal support
It's a lot to manage, but I've made a lot of headway.
I don't really care what people say about him. This isn't about gossip.You can do a search on Holtorf, see what people have said.
People post their experiences. Sharing experiences is one of the purposes of this site. Like asking around for a good car mechanic.I don't really care what people say about him. This isn't about gossip.
I care about getting better. I have excellent doctors who are helping me do so. I was overwhelmed by the cascade of abnormal lab results and feeling like everything was broken, all at the same time. Holtorf's model allowed me to have some context to understand and carry out my treatment plan that my doctors have devised for me.