This entry was posted in Occupying and tagged anaerobic, bed rest, bedridden, coping, CPET, exercise, GET, IV fluids, living with, occupy, orthostatic intolerance, pacing, pain, patience, post-exertional malaise, Raggedy Ann, stress, suffering. Bookmark the permalink.
Ironic that you used the phrase rag doll – in the early days of the outbreak in Incline Village at north Lake Tahoe, that's what the patients called the disease.
I'm very glad that a number of different initiatives are zeroing in on post-exertional relapse (my own preferred version over malaise or fatigue) as THE cardinal symptom of this disease. It is something we really need outsiders to understand – that we may save up energy to go to something we REALLY want to go to, and look perhaps subdued but like a real person (even if in a wheelchair) – then pay for it for weeks.
I used to want to have a business card to hand out – if you can see me, then I'm outside of the house; if I'm outside of the house, I am doing unusually well; so if you can see me, you don't know what this disease is normally like for me.
I always thought one of the reasons I responded so well to Ampligen was that my husband insisted that i recuperate – ironically, I find it's the athletic community that understands the need to recuperate from an injury, and disease is injury. But since losing Ampligen from my Philadelphia site in February, 2008, I've had to push myself to get it back. I had to live by myself, 2500 miles from the person who makes me want to wake up in the morning, relatively helpLESS, to get the drug back from March 2010-April 2011. The I came home.
Now I consider myself lucky that it's just an 11-hour day by train and city bus to get to NYC twice a week for my Ampligen infusions, and then I'm back home. But the problem is, I have to walk at least 30 minutes just getting from train to train and train to bus and bus to office, and back. I'm not at a stage in recovery where I would normally be walking 30 minutes in a day – perhaps 6 or 8. So I have to push myself to get the drug, and it's making for a slower recovery. I don't know how long it will take for me to get back to where I was when I lost it in 2008. Dratted FDA.
Thanks for writing about this. Excellent description. Should be printed out and handed around.
Thanks, Mary! I don't think anyone except those closest to us really understand what a struggle it can be to just get out of the house, and that most days it's not possible. I think that if the doubters paid the slightest bit of attention, they would see that ME/CFS patients are some of the strongest sick people around – unshakeable determination to do as much as we can.
It is a great description of a crash, but I'm very sorry you're going through it. I also hope the tests reveal some useful info for you.
Happy wedding anniversary – I hope you manage to do something lovely despite everything.
Sorry to hear that you are down..Prayers for a recovery soon and Happy Anniversary. I just found a wonderful Christian man who married me despite my CFS. We met on a Christian dating site a year ago and we married last October. I am blessed.
Brenda, the testing was done by an exercise physiologist. It was biking on a stationary bicycle until I couldn't go any further, which ended up being about 12 minutes, two days in a row. I had neuropsych testing many years ago, and there was no exercise test – just a variety of brain twisters! I hope that helps!
Thanks for reporting about both the exercise test and the horrible crash you are having to suffer through now. We could see it coming, but that doesn't make it more bearable. Take care!