• 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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  1. Victoria

    August 8th, 2018: Understanding and Remembrance Day for Severe ME

    Great article, Jody. You're so lucky to have a supportive husband and family.
  2. Victoria

    Phoenix Rising Snapshots: From Grassroots to Metropolis

    The humour back in 2009 & 10 was hilarious GcMAF. I had collected some 300 jokes and funny stories through the early years of email at my workplace and although many were too risqué to upload, the other jokes kept up going for months.
  3. Victoria

    Phoenix Rising Snapshots: From Grassroots to Metropolis

    I remember 2009 well, Jody. It was the worst (and best) time of my long chronic ill health story. The best because I found genuine friends. like you, who understood where I was coming from and worst, because it was the last year of working full-time. Now in early retirement and living...
  4. Victoria

    Never Ask Us if We're Hungry -- The Answer's Always No

    I suspect some of the lack of appetite is purely that many ME/CFS/FM sufferers are too tired or lacking the energy to shop/prepare/cook food. I know that when I was still working full time, I would finally get in the front door and sit in a heap, (often in the dark with my coat on in winter)...
  5. Victoria

    Things of Beauty? Joy Forever -- Even with ME/CFS

    I'm the same as 'beaker'. peggy-sue's attachment just takes me to the front page of the site.
  6. Victoria

    Naturopathy: Happy Anniversary to Me and Dr. Upcott

    One of my favourite quotes (and mentioned on my PhotoBlog) is...........Those who say it cannot be done should not criticize those who are doing it! Most patients with ME/CFS and/or FM have differing symptoms, as well as various degrees of severity with their symptoms. Genes, age, physical...
  7. Victoria

    The Naive Patient

    As you know, Jody, I have been lucky enough to have 'normal' everyday health conditions which show up on tests, so I have faired far better than most people with chronic pain, fatigue & other miscellaneous debilitating symptoms. But one thing that hasn't been resolved is my lack of deep...
  8. Victoria

    Comment by 'Victoria' in 'I am The Doctor'

    I suspect you need an ultrasound (not an X-ray). .........and you need an ultrasound done by a person skilled in reading & understanding inflammation. I've had several ultrasounds done by a very highly skilled technician who has remarked on specific areas of tendonitis & bursitis (ie...
  9. Victoria

    Comment by 'Victoria' in 'health insurance changes putting life at risk'

    Tania, in Victoria it only costs $75 per annum for a single Ambulance Victoria membership. This makes all ambulance rides free. I would assume you have a similar thing in South Australia? I was thinking of cancelling my top Private Health Insurance when the premiums increased on April 1st, but...
  10. Victoria

    (SCD) Specific Carbohydrate Diet anyone?

    I just had a quick look at the main internet sites of SCD (because I hadn't heard of it before) and it looks very similar to the Paleo diet (except for the Curd cheese). I was 100% well for 3 months on the Paleo diet in late 2005 (except for my prolapsed discs & soft tissies injuries which are...
  11. Victoria

    Am I invisible ?

    No SaveMe, they never really found the cause. I had (another) Dobutomine Stress Echo about 3 weeks ago, then saw the Cardiologist about 10 days ago. The consultation proved very unsatisfactory & I felt I wasn't being assessed properly, so complained to my GP & he has referred me back to my old...
  12. Victoria

    Am I invisible ?

    Don't be scared SaveMe, Be educated. By that, I mean spend as much time as you are able, reading & researching ME/CFS so that you understand the history/symptoms/ages/genetic pre disposition, triggers & so on. Being forewarned is being forearmed in the sense that you understand there is...
  13. Victoria

    Boris a 6yr old talks about having ME?

    Very sad to see one so young get ME. I guess the only consolation is that the condition has been recognised & Boris is not labelled as lazy & can be treated with sensitivity & compassion.
  14. Victoria

    Comment by 'Victoria' in 'From My Commonplace Book - 14 - a little more about solitude'

    I agree with you on the solitude advice for ME/CFS/FM patients who are isolated. I am lucky to have some family, a good neighbour & interaction with people when I go out. I guess I am lucky in that. But a fair bit of solitude gives me the time to rest & recharge, I find that phone conversations...
  15. Victoria

    Am I invisible ?

    For what it's worth, I think females figure higher in the research & statistics because females are more likely to report their health symptoms. Females have always been able to discuss their issues with friends, family & doctors. Generally, and I believe it still happens today, men tend to...
  16. Victoria

    Am I invisible ?

    I'm really sorry to hear your anger & frustration, Saveme. It takes time to get over this phase & many sufferers never get over their anger & despair, especially if they're as young as you. I urge you to rest & approach your illness with a little more calm. Stress takes a big chunk out of...
  17. Victoria

    Comment by 'Victoria' in 'From My Commonplace Book - 14 - a little more about solitude'

    Solitude is my best friend. I do my best thinking in it's presence. I feel a certain sadness in it's absence. Henry David Thoreau wrote a nice piece about Solitude which I printed off the internet one day. It's in a pile of paper including many other interesting pieces - I can see I'll...
  18. Victoria

    Comment by 'Victoria' in 'OUR Tina Tidmore on the RADIO! ME/CFS Info Spread out Further!!!!'

    It's easy to suggest that Doctors MUST deal with ME/CFS/FM patients, but most lose interest quickly when confronted with dozens of symptoms which may, or may not, improve with known drugs and/or other treatments. I believe that while there are many caring, sensitive & committed Doctors who...
  19. Victoria

    Article: In the Dragon's Jaws: How To Be Sick - A Buddhist Guide to CFS by Toni Bernhardt #1

    Life is not about the Destination, Life is about the Journey. My advice is to Stop looking for the Past, the Past has gone. It can never be recaptured, so stop clinging to it. Stop wishing for what you once had. Just be grateful for what you have now. Look not to the Future, for the...
  20. Victoria

    I'm freaking out! Juat a little anxiety.....

    Kimberly, It's always hard waiting for an appointment/case hearing (or test results). The clock seems to be on 'go slow'. You know that saying A watched kettle never boils........well, a watched clock never seems to tick (either). Do your best to find some do-able activities to fill...
  21. Victoria

    Comment by 'Victoria' in 'Trying'

    What a great idea Nico. At least with volunteer work, you do what you can (& don't feel obligated or committed as with paid work). If your vision continues to be blurry, you might need to have your eyes tested & checked. Otherwise, try to take it a bit slower. You might be able to read for 10...
  22. Victoria

    Comment by 'Victoria' in 'my computer has a virus...'

    I had a division of my internet service provider 'clean out my computer' last year for a set fee of $99 & they installed free Microsoft security on it to constantly monitor my computer on a daily basis. They also installed Malwarebytes so that I could run that as well (every month, or more...
  23. Victoria

    Comment by 'Victoria' in 'I KNOW i need to change doctors'

    Sorry to hear your Boyfriend & Dr are being difficult. I guess many Dr's don't want patients who have multiple problems & hard to treat conditions. I ALWAYS take a short list of things /questions I want to address to the Dr. But I never give the list to the Dr, I just refer to my brief notes...
  24. Victoria

    Comment by 'Victoria' in 'PEM from HOME SUPPORT'

    I am sorry to hear that the workers had no idea of how to respond to your needs. It's vital you communicate to the relevant supervisor or manager that workers must not wear any perfumes or use any strong cleaners or room sprays. This is one problem that I share with you. Fortunately this...
  25. Victoria

    Comment by 'Victoria' in 'back on the forums...'

    Very glad to see you back... Hope you will start feeling a lot better soon. Stress also has the opposite effect. It makes us all stronger & wiser for the experience (although it may not seem so while we are going through it). Hope each new day brings a greater sense of calm & peace in...
  26. Victoria

    Comment by 'Victoria' in 'Writer, Artist & Editor Terri Windling Blogs on the 'Murky Territory' of Illness'

    Thanks for the link, PictureofHealth. Terry Windling has a way with words, to be sure, and she's a gifted illustrator. I love the Carl Larsson illustrations she's included in her blog. I came across his illustrations many years ago & I enjoyed seeing the ones Terry has reproduced. Since...
  27. Victoria

    Elevated liver enzymes

    I have a catheter inserted due to nerve paralysis after lower back surgery so I feel sure the Dr in Charge of the Neurosurgical Rehab unit knew what he was doing. Your caution would be good advice for any lay person attempting to do this themselves, though.
  28. Victoria

    Elevated liver enzymes

    Kday, My liver tests have been higher than normal for about 6+ years & recently, are getting even worse. One of the few tests outside normal these days. And to me a sign that something's wrong. But as to your urine...... You should be drinking enough water so that your urine runs clear...
  29. Victoria

    Comment by 'Victoria' in 'Things That Have Helped Me'

    Further to your comments on microwaves..............I've never liked microwaved food. I find some of it tastes 'metallic' (to me). I read somewhere once, that all food (cooked or raw) has a life force which is visible under a microscope and that all food cooked in a microwave is 'dead' (ie no...
  30. Victoria

    Comment by 'Victoria' in 'Small Stresses that Seem Big'

    I'll ditto what Mary Tyler Moore said (in Kelvin's comment). You can't be brave if you've only had wonderful things happen to you." And it's not just illness that this quote applies to. I sometimes feel that the Best Person of Anything is the person who's had a hard time (in getting where...