a realistic level of activity??

Discussion in 'Fibromyalgia Main Forum' started by Perrier, Dec 23, 2008.

  1. Perrier

    Perrier New Member

    Greetings to all the wonderful folks on this board:

    My adult daughter has this challenging illness and I am wondering what folks think is a safe and realistic level of activity for someone who was functioning at about 6.5---8/10.

    You see, she had a relapse in Oct and is still not out of it.

    She became ill in May 2002 following infection after surgery; she was bedridden for months and years and then by March 2006 functioned at around 6.5-7/10 and went to work part=time as a junior attorney.

    She crashed after working for 9 months in Nov. of 2006 and had this first relapse until the end of the summer of 2007, at which point she was improved again. We concluded that this work arrangement was the culprit.

    Fine, so when she got better, we decided a more restrained lifestyle would be better.

    She registered for a graduate degree and was taking it half-time, which meant one course per semester; students met only once a week and the rest of the time she was at home reading and doing the research from home. She loved the work and our plan was to prevent a relapse.

    Bang, on Oct. 5th 2008, some 14 months after what was a relatively normal life, she had a major relapse.

    We remain bewildered. She was not on a job; she could lie-in if needed; she could postpone research if needed; she had the one commitment to the class and if that wasn't feasible she could follow it on the internet. Housework was not an issue.

    She went to a 2 and a half day seminar--a one time event and crashed after it. She had gone to one day conferences before with no nefarious effect.

    So, my question is how in the heck does one prevent a horric relapse. What level of activity is dangerous? She is utterly devastated by this. And has starting worrying that life must be circumscribed to just sitting in the house like a cat and not doing much.

    Please recall, her level was prior to Oct 2008 around 7.5-8/10 with some moments of what she called 'normal' feeling, for the first time since becoming ill.

    The crash gave no warning whatsoever that it was coming; no warning, just Bang, adrenal collapse, and severe.

    She just felt that something went 'pop' inside of her, as she put it.

    The physician is wondering if she doesn't have lyme or neurotoxins now, but there was no bite and the question is: why would she get to such a good functioning level if there was lyme and neurotoxins.

    If anyone out there has any advice, speculations or observations, I will be eager to hear.
    For instance, what kind of exercise is acceptable: riding a bike? swimming? are these dangerous? light weight lifting?

    You see, the botton line is: even after getting better, is it possible to resume anything resembling even a partial normal life.

    Thanks for reading this. Time is our most precious possession after good health.
  2. gapsych

    gapsych New Member

    It is wonderful to hear that you are concerned about your daughter's illness. This will greatly help her mentally.

    Sometimes the crashes with this DD seem to come out of nowhere.

    Our DD, I have FM/CFS/ME is cyclical but the cycles vary.

    It is very frustrating to try to figure out what causes and when a crash will occur.

    I have tried keeping a journal and have found certain triggers can cause a crash. However, as I said above, sometimes they are unpredictable.

    If I know I have something coming up such as holiday plans I try to rest up as much as possible before. This is not a guarantee that you will not crash. Friends and family need to know that there will be sometimes your daughter may be unable to do things but that does not mean she is not trying. Our bodies are telling us to rest.

    When I was doing warm water therapy, when I could make it, I would expect some kind of crash or extra tiredness the next day but at least I felt I was keeping my muscles conditioned. At that time I would also try to rest the day before. My New Years resolution is to start the warm water therapy again.

    This is what helps me but as you know we are all different how we react to things.

    Do you have a doctor who is knowledgeable about FM/ME? I know that has helped me tremendously.

    Good luck and hopefully others will have some suggestions.

    Happy Holidays.
  3. Juloo

    Juloo Member

    The problem is, I'm not sure there is any one answer. I would say I'm fairly high-functioning, and I have days, perhaps even weeks when I sail along on my conservative energy output. But then there are the relapses, some I could perhaps have avoided entirely, and some which are a big mystery. For me it's not so much a 'pop' inside as I feel like a screw with its threads stripped. No matter how much I'm pushed, that's just IT. There is no more....I can try and 'will' and 'push' all I like, but I go nowhere. That's it. Over. Done. At that point there's nothing for it but to stop everything and go into hibernation mode.

    From my own experience, I think exploring Lyme or other toxins (mercury, lead, etc.) would be a good idea. I don't remember having a tick bite either, but I was positive (and positive for high lead). My husband was bitten and had the bulls-eye -- I think I got Lyme from him. But one way or the other, only about 50% of those diagnosed with Lyme actually remember a tick bite and rash. After over a years of antibiotics, supplements, etc., etc., my average days are better than my pre-treatment average days.

    One naturopath told me (about pacing) to take a look at one's hand -- open the palm and spread the fingers. Between each finger, there's a space. This should remind us to rest after each moderate expenditure of energy (the fingers are the activities, the spaces are the rests). Unfortunately, exercise is very individual. There are articles on this web site which discuss the fact that there has been *proven* degradation of energy after stress tests for PWCs vs. controls -- so any of us could do a stress test, but our bodies just do not recover the same as a 'normal' with aerobic exercise.

    I have had CFS for 10 years now (and can barely believe I am saying that), and at my worst, I might have been about a 3. Last year (before work slowed), I was working 5 days a week at 5 to 6 hours a day and spending the rest of my time as a busy wife and mom. I have had peaks and valleys, but my main idea is to continue investigating ALL the things which can be contributing to this CFS and chip away at them a little at a time. I still make stupid mistakes and take calculated risks (I spent two days in a cleaning frenzy for my mother-in-law's arrival, then a couple of hours walking in the tourist district nearby, now I can hardy walk!).

    I wish both you and your daughter well. I'm sure you are as frustrated for her as she is frustrated with herself. I spent a lot of time on my education in a mostly-male profession, and at my worst, I had to write the state board and ask to have my licensure put on inactive status because I could not function well enough cognitively to complete continuing education. That was a very low point for me. (I am once again practicing.)

    Basically I've had to accept the fact that I may have to deal with this stuff the rest of my life. Do I have a life? Yes. Is it the same life that I would have had with no CFS? No. But it's still MY life. When I have energy, I want to go, Go, GO! The boundaries continue to flex...never in the same place twice. But they have expanded.