Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tuesday, June 19, 2012

Measuring improvement proves tricky

For nearly eight months now, since the beginning of November when I first started treating my ME/CFS, I've been steadily "improving."  At least that's what I tell myself.  And that's what I tell others when they ask me how I'm doing.

But in the back of my mind, I keep wondering, if I've really been improving since November, shouldn't I be healthy by now?  Or at least noticeably closer to healthy than I was in November?  When I look back at my daily health log from November and December, I don't see a drastic difference.  I see the about the number of crash days versus non-crash days.

So I am starting to wonder if my sense of improvement might be illusory.  After all, I've always been an optimist, so it wouldn't be out of character for me to unconsciously confuse hope with actual improvement.  I notice I tend to make excuses for my crashes.  "Oh, this one's just a cold virus," I say, or "this one's just a start-up reaction to my new treatment."  At some point, I'm going to run out of excuses.

On the other hand, it's possible that I am improving but that the progress is so slow as to be almost imperceptible - like the process of aging, only in reverse.  I suppose I'll just have to wait longer to find out.  I just wish I could see a year or two into the future.  At least that way I could prepare myself for what's to come - good or bad - and plan accordingly.  But I guess that's part of life with ME/CFS: getting comfortable with uncertainty.


  1. There's also always the question of how much have you & your body learned to compensate for what's going on. You may be doing things, even subconsciously, that help your body get thru the day.

    Have you had the god-awful tilt-table test? They told me (as they were trying very hard to get me to pass out) that the body learns ways to compensate for the low blood volume & falling bp, such as rocking while standing, muscle contractions, etc. I had my own bizarre cheerleader (the famous Dr Rowe of Hopkin's PA) telling me to "stop fighting it, just let go..."

    Anyway, I think it's the same with ME/CFS. We habitually sit instead of stand around the table to chat, or at least lean our weight against something; we subconsciously find ways to conserve precious drops of energy. We adapt. So, are you truly improving, or wishful thinking? I hope you are improving.

    (Please don't take this as a lecture, but as a concerned friend looking back at her mistakes and not wanting you to make them, too...)

    To be bluntly honest, Patrick, I'm concerned that you're still working. One thing we know now that we didn't know when I got sick is that the patients who push the hardest, the ones who keep working in the early years instead of forcing themselves to rest & relax, are the ones with a lower chance of recovery.

    I know you are very invested in your job - I was in mine, too, as I had a wildly successful online retail business that I was able to operate from home, and work around doctor appointments and kids, good days and bad days. I had it for 10 years before I had to just shutter it while still flourishing, while undergoing Lyme treatment. I should have sold it & quit years before instead of pushing on, and maybe I wouldn't be where I am today.

    You are in that crucial 5 year period after onset, where the chance of a true recovery is highest. There is no easy answer, as you are well aware, as to how to improve your odds, but I truly want to see you be one of the ones who beats this crap.

    Hoping for you,

    1. Ash,

      As always, I truly appreciate your insightful comments and advice. And you raise a point that's been on my mind a lot over the last year, and which, by coincidence, I was planning a blog post on later this week.

      You are one of many who has told me that I should stop working if I hope to give myself the best chance to recover. Including the comments section here and on message boards, I've probably been advised at least a dozen times. Sometimes I feel like the clueless victim in a suspense movie, to whom the audience shouts warnings as he bypasses sign after ominous sign. "Don't go in that house!"

      It's just so incredibly difficult to imagine quitting work, as I'm sure you remember. Financial realities aside, I don't know what I would do if I didn't get up each morning with something to accomplish. And I feel like I couldn't possibly let my family down in this way. But, if all those who have warned me are correct, I also hate the thought that I could be piddling away my best chance to recover. After all, that would be the best end result for me and my family alike.

      I think what I need to do is really research this and make an informed decision. I wonder about a few things, such as

      1. How do who worked and didn't recover know that their continued sickness is attributable to work? Maybe they would have continued to decline anyway. Are there statistics on this somehere?

      2. Did they work physically demanding jobs? Stressful jobs? Mine is basically sitting at a desk all day, and I usually don't get stressed.

      3. If I stayed home, would I really expend less energy? I'm worried I wouldn't be able to help doing house work and running errands. In which case, I should be getting income for my efforts.

      4. One often reads about the supposed "mind/body connection" in health. I'm worried that if I don't wake up each day with a purpose, that I could somehow slide into a self-perpetuating state of malaise. In other words, I'm worried that I start thinking of myself as permanently sick, that my body could somehow obey that mental state. I'm not sure if that makes any sense, or if there's any basis in science. It sounds a little too Wessley-ian, but I still can't help wondering.

      5. I already worry enough about the money I have to spend on supplements and other treatment. If I wasn't working, I might have to cut back, which could jeopardize my chances of recovery.

      6. On crash days, I wouldn't feel guilty about staying home. However, unlike many PWME's, I still have occasional days when I feel as good as 90% of my former, healthy self. I would feel incredibly guilty if I staying home on these days.

      Ash, I'm not second guessing your wisdom or experience, which I continue to value. I really appreciate your input. I guess I just have to go through my usual decision making process in the only way I know how, which includes taking input from wise advisers like yourself, but also testing that input.

      Thank you again for your cogent and caring thoughts,


    2. Patrick, I think every case is different, which makes the decision making even harder. I know you are a lawyer, and if you enjoy your work, and don't find it stressful *at all*, if you aren't a trial attorney, and if you don't find you have to *push* yourself to get to work everyday, then maybe working is best for you.

      Having financial security is very important, because I think stress is deeply related to this, as it impacts the adrenal glands. My own illness, at least, I can look back & trace to events that strained my adrenals, either physically or emotionally. And of course, you are very correct in that these supplements are very expensive but often very necessary. I, like many, have malabsorption, irritable bowel, leaky gut, etc, and absolutely need the supplements, but wow do they cost a lot!

      Having a personal sense of accomplishment is also important, and something we struggle with. If you work, you have that. But if you don't, I am sure you can take up a hobby or find something to occupy your time that will give you that. Me, I have taught myself to carve & work stones & fossil ivory (mammoth ivory) as energy allows - 5 or 10 minutes here and there. It adds up, and I see I have created beauty.

      You are also incredibly intelligent & articulate, and could "work" in patient advocacy & education while away from your job. No one is saying you should lay in bed all day for 2 years (I don't think - muscle atrophy).

      What options would there be for part time work, or work from home? Or, can you see if your employer will let you adapt your environment? I worked out of an overstuffed lazy boy, with a laptop on a movable desk in front of me. That helped my body by supporting it, thereby saving energy, and eased pain.

      Get your doctor to fill in the form for a handicap tag, and use it. Yes, believe me, I know how that feels. But every step you save yourself from walking is a step on the road to better health.

      Perhaps it doesn't have to be black & white - work or don't work. Perhaps it can be work with accomodations, work part-time, etc, and see how you do.

      Hoping so much for you to do well - and of course, feel free to quote whatever you like, I'm honored.


    3. Ash, of course you are absolutely right, it doesn't have to be an all or nothing deal. All of your points are excellent.

      I feel like this is one of those decisions that I could see myself putting off until I'm forced to make a decision -- which could be too late. So I'm glad this came up because it will hopefully motivate me to do what I need to do to make a decision one way or the other.

      Thanks again!


  2. Jettison the Wesslsy mind body trash and just stop work and rest if you can afford it. To hell with having a purpose and psycology, even on days when you are 90% well. I wish so much that I had stopped school instead of going full time and then part time. I was like you - had days where I was 80% well but was stupid enough to waste it. There was no internet when I got ill and I didn't have anyone to tell me. The doctors were all about "no deconditioning" trash. Well now I am really deconditioned and aimless and severely ill. I wouldn't even go the halfway stage if I were in your shoes..

    1. Thanks for sharing your thoughts and experiences on this subject. Do you believe that continuing with school made you worse and/or prevented you from recovering? How do you know?

      I've been looking for studies on this topic but haven't found any yet.

  3. I guess the thing to look at is your record of good days vs bad and the length of time for a recovery after a crash. Several of us use these as markers for improvement/worsening. You might also start finding triggers for each crash. You have to keep really detailed logs of everything to figure this out though since a crash can be delayed a day or two from the trigger.

    Another thing to realize is that your really good days are probably an adrenaline rush. If it is due to this, the next day will be a crash day. It is VERY important to not over do things on the very good days because they are really a result of the CFS making your system go bonkers rather than a true improvement in the CFS itself. In order to increase your chances of recovery you have to get out of the push/crash cycle. You should be able to stabilize to a steady state of sorts, where you are accommodating enough to keep your energy levels somewhat predictable.

    If you are truly improving then your work load might be okay. If you are just coasting along, then maybe you can do a trial of backing off on hours, or using more accommodations for several months and see if there is an improvement. Getting out of the push/crash cycle is very VERY important for recovery.

  4. Patrick-Just found your blog, great to read!! I am 21 months into ME, and sound a lot like you...was very active, professional career, family. I did cut back from 45 hours to 32 hours to give me a break from the hectic pace I tried to keep up despite ME. It has helped me, but I cannot imagine not working at all. Mentally I like how work takes me mind off ME, and gives me a purpose each day. I do enjoy my job and the firm I work for, and have friends there. I have seen others have to quit work because of disabilities, and that is a huge change to grapple with. Keep up the great work!!

    1. Hi Bret, It's always good to hear from other people who are dealing with the same issues. I'm currently thinking about finding a middle ground, like you did, where I cut back on my work hours. Has it worked for you? Have you seen any improvement in your 21 months of ME?

    2. I think it has helped me Patrick, but how much I don't know. I would say I have improved from 60% of my former healthy self to about 70% now. I noticed my improvement the most 4 months ago, coinciding with my reduced hours, but also taking D ribose/DHEA/Protein mix/taurine on a regular basis. Mine all started like yours...a simple bout with the flu. I live in MN, and have a wife and 10 year old so I really can't imagine not being in the flow of life so to speak. I take wednesday mornings and friday afternoons off each week. Those days I try not to be tempted to do housework if I feel good. I simply rest. I would consider something like this if you can to see if it should know in 3-4 months if it helps or not. I do know that pushing myself the way I was before this adjustment was not letting me recover. I did order ImmunoStim this week due to your suggesting!

    3. Thanks for the reply Bret. I hadn't considered that I could possibly break up the extra time off into two half days, like you do. That actually sounds like a perfect way to break up the week into more manageable chunks - with Wednesday mornings and Friday afternoons off. I might copy that exactly. I'm glad to hear it's working out for you.

      I hope the ImmunoStim helps you. I noticed that I stopped getting sore throats almost immediately after I started it.

      Good luck.

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