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, October 22, 2013

Taking Risks In Life: Harder with ME/CFS

First, this is the longest I've gone between blog posts, but I've always promised myself that I would not blog just to blog -- that I would only blog when I had something I felt needed to be said.

August and September were by far my best months since getting ME/CFS.  They both averaged at least 3 percentage points higher on my daily health rating chart than my next highest month. That may not sound like much, but it is quite significant.

I'm sure the improvement would have continued into October if it weren't for cold & flu season.  Each Fall that I've been ill (this is only my third), a little bit of a "funk" sets in as I realize that I will be battling a continuous string of bugs for the next 5 months.  Maybe you've heard of the term "chain smoker" for people who light their next cigarette with the smoldering butt of the last, and so forth. Well, with my weak immune system, I'm basically a "chain sicker" throughout fall and winter.  The next sickness rises right out of the ashes of the last.  It can be a quite frustrating when that first cold of the season sets in and I know I'm in for a long battle ahead.

For many patients, ME/CFS puts their dreams unequivocally out of reach.  Bedridden or housebound patients have no choice to but completely reset their goals and expectations.  Their lives are profoundly and irrevocably thrown into chaos.  To them, I'm sure my problems must seem like a joke.  For those of us lucky enough (or early enough) to be only "moderately" affected, ME/CFS works differently.  It casts a cloud of uncertainty over nearly ever significant life decision.  Every decision that involves future events of any kind, from meeting a friend for lunch, to moving residences, becomes a leap of faith. Contingency plans must be built into everything.  Flakiness becomes a part of who we are (and this kills those of us who, prior to ME/CFS, abhorred flakiness.)

My wife and I recently decided to buy a new home.  We are in escrow now.  The new home is near to our current home, but with a little more room for our recently expanded family.  A tad more charm.  A little more character.

This was one of the toughest decisions I have had to make, and all because of the unpredictability that ME/CFS presents.  Without that hitch, it would have been a "no-brainer."

The new home will, of course, come with a larger mortgage payment.  This payment would probably not be affordable on mine or my wife's salary alone.  Our combined salaries are necessary.

I know from conversations with veteran patients that many would caution me against taking this risk. Taking this risk assumes that I will be able to continue working at my job, and potentially adds some of that worst-of-all triggers: stress.  Undoubtedly, the safe decision would be to stay in the current home, especially since many patients don't experience their first major downturn until around the 3 year mark (and I'm not there yet.)  And for a while, this was the plan: to play it safe and stay in the current house until I got a better sense of where my disease progression was headed.

Then the economists began saying that interest rates would likely spike in 2014, and may never be this low again.  Suddenly there was a "now or never" urgency, and I weighed the risks again.  Looking at it with fresh perspective, I figured the worst that could happen is that I am forced to quit work and we have to move back to a more affordable house.  (We are keeping the old house as a rental, so it would be logical to kick the renters out and move back).  So, there is a potential fallback plan.

What ultimately changed my mind was when I considered that there is risk in both acting and not acting on a dream.  Before, I was only considering the risk of moving and then later regretting it.  But when I considered the risk of not moving, only to discover that my health would hold steady or improve just as interest rates climbed, I realized that both options seemed equally risky.  So I might as well go for the one that gives me at least a chance at one of my dreams.

If things go wrong and we are forced to downgrade, I will accept that.

Our move date is currently set for late November, assuming escrow goes smoothly.  Now the challenge is to accomplish this move without a major crash.  I have corresponded with several patients for whom moving was a trigger for relapse.  I have already "pushed it" too hard this past weekend, even though I only packed a handful of boxes.  I am paying the price now, with a major return of flank pain and PEM. Yet it goes against every instinct I have to pay people to do things that I could do myself (like packing).  It may come to that anyway...

Thank you, as always, for reading.  If you have any moving advice, I would love to hear it.


  1. Sounds like you did a good job of weighing the opportunity cost in both directions. Well done.

  2. Great to hear that the past 2 months have been better for you. Even incremental improvement makes a huge difference. The saline IV's and now taking celebrex (anti inflammatory) have allowed me to improve slightly as well. I find that the day is not as much of a grind with this treatment, and can be managed easier. I too have wrestled with many decisions about life given the uncertainly of this condition. I have found that living in fear of the unknown gets me nowhere but aprehensive, thus taking my attention away from the event at hand. Like you, I have to combine my income with my wifes in order to stay in our home here in MN. When we bought this, health issues didn't factor into the decision at all, only a rough estimate on future earnings. At 50 years old, I now start to think about how long I can work FT with this combined with the effects of aging. Working until I am 65 seems very unlikely, even with my slight improvement as of late. All of a sudden the 401K balance becomes one of interest now to see where things will be in a few years. One thing I have learned is that as humans we tend to project the worst case scenario for future events. Rarely has that vision come to fruition, and I have been able to manage through most situations like holiday trips, vacations, business trips. For me I feel robbed of the ability to be carefree when making plans, and focusing on the pure enjoyment of those times versus always having to make a contingency plan if the health falters. Happy Halloween Patrick!

    1. I'm having technical problems with my own blog! Ha. I just lost a long response that I typed out. Anyway, the gist was that I can closely relate to all those concerns you expressed with "big picture" life planning. If my condition holds steady at its current level of functioning, can I really make it all the way to retirement age like this? Some weeks feel like a major accomplishment just to get through to Friday without missing any time. Can I really keep going like that all the way until normal retirement age? It is a concern, no doubt. One thing that gives me hope is that we are making medical advancements re ME/CFS at a faster rate now than ever. There is a decent chance that we will have more options available to us to keep us going before we reach retirement age.

      Glad to hear the saline IVs and (now) celebrex are working for you. Remind me, do you have POTS issues? I've heard that saline IV's are especially helpful to people with POTS, but I'm not clear on whether they help people who don't have POTS as much.

    2. And Happy Halloween to you too, Bret!

  3. In regard to POTS, I am at the grey line of the normal range. I decided to switch docs about 5 weeks ago, just felt like I needed to have a fresh pair of eyes on my situation. He looked at all my past records (which read like War and Peace now....) and noticed some things to look at again. First, my tilt table test 18 months ago was borderline. My BP is always around 105. My MRI shows some narrowing in the neck area with some degenerative issues, probably stemming from a whiplash concussion I had back in 2000. My new doc was very intrigued to hear that a steriod treatment I had 10 months ago gave me almost 3 weeks of feeling as normal as I have felt since this hit me. So.....he wants me to have saline IV's 2xweek to increase blood volume, and celebrex to lessen the inflammation in my neck area, thus allowing more flow of blood/spinal fluid to/from the brain. I really like how this guy plays detective, and looks at anything suspicious. The past 2 weeks with this have given me a boost in the right direction. If I can hold like this, then maybe working to 60 is realistic for me. Like you, there were weeks in the past where I thought that I would be lucky to get to 55 working FT. I have my fingers crosses that maybe, just maybe, this treatment will stick. But, I have been fooled before. I really hope you get through this winter w/o much illness Patrick!

    1. That all sounds like pretty promising news, Bret. You've got me thinking that maybe I should get a fresh perspective too, since I've sort of gone as far as I can with my current doctors. It's just hard to find referrals to good doctors who "get it" and won't act like a deer in the headlights when they hear ME/CFS. You wouldn't think it would be too difficult living in the second largest metropolitan area in the Untied States...but you'd be wrong. haha.

      Next time we talk, I'll be interested to hear how this IV & celebrex experiment works...whether it continued to help.

      By the way, are you still using Vyvanse? I have been having success with very occasional use of Adderall to help on bad brain fog days. It's a good tool to have in my toolbag.

  4. I was interested in what Bret had to say since I definitely have dysautonomia symptoms and had a terrible time on the tilt table test- but but terrible enough for them to diagnose me. I also have a very bad neck from whiplash years ago- it is always inflamed and in pain, but I'm allergic to NSAIDS. I've been trying to convince my GP to at least let me try one saline infusion now I'll look into Celebrex (although, so far, I've had to avoid almost all drugs).

    I'm still thinking of somehow getting myself to your area, Patrick, to see Dr. Chia. There is NO ONE in the Pacific NW that has clue about this disease. How is that possible??

    Anyway, congrats on the move- very exciting. We were just discussing how/when to move from our house into something much crappier and cheaper. I was by far the main bread winner and my husband is older than I am with his own health issues. Can't believe it's come to this!

    But I'm so happy that you've had some good months! Thinking of you!

    1. Elizabeth, as always it is nice to hear from you.

      Re Dr. Chia, I had another patient ask me if he does telephone or Skype appointments. I had to admit that I don't know, but I have another appointment in December. I will ask him at that time. Something makes me think he does, but after the first consult. I will confirm that though.

      And YES, I completely relate to your amazement at the dearth of doctors who know *anything* about this disease. Even in large cities, you might be lucky to find one...and even then it's a question of how much of a real "expert" are they, and how much are they just trying to carve out a notch for themselves in the medical community.

      Sorry to hear you have to move too, but, I feel like whenever one of us has to move, there's always the *chance* that we could be escaping environmental toxins (like mycotoxins) that contributed to our onset. It's hard to know how much of a role these mycotoxins might play. Obviously, some people think it's the whole ball game. Anyway, there's always that hope! Fingers crossed for you.

      These days I constantly find myself stunned at how much effort and logistics go into moving residences. It can seem quite overwhelming unless you take it one task at a time. Best of luck, Elizabeth!


    2. Hey Elizabeth, good to meet you. Couple of things to add. Patrick-yes, I am still taking Vyvanse but only 20 mg daily versus the 40mg I was taking before the saline IV's. That is one metric I use to determine how I am getting through the day. The fact I am taking less Vyvanse but feeling as good or perhaps a bit better tells me something has changed. I would think that any doctor would be willing to try saline, it is harmless and has benefited others. I printed off the study Dr. Bell did using this on his patients, and the benefits it had on them. Maybe this would help. Also, have you had an MRI done on your neck given the whiplash you had? WIth POTS it could just be some sort of narrowing that is causing symptoms. But, unless you have an open minded doctor, all this can be moot. My current doc is not a CFS expert per se, but has a very open mind and a detective mentality. I see a psychologist on occasion, and she recommended him to me. I also know you need someone who looks at the supposed normal ranges on tests, and digs into those more. I have had previous docs who see anything in the range as normal, when the range from low to high is huge. Anyway, Saline/Vyvanse/Celebrex is my combo for now.

  5. I have given you a "shout out" on my blog - my version of a Liebster award because I can't afford to expend the energy writing or answering questions. If you want to pay it forward, please highlight 10 bloggers on your blog. If you'd like to participate even further, you can come up with 10 questions for them to answer and/or answer the questions posed by Jess or Marie (linked on my blog: Mostly, I wanted to say thank you for your brilliant, informative blog.

  6. Patrick, if I can give you advice, there are two things. Don't hesitate to pay for other people to pack if you can afford it. Also, pack the things you'll need for the first week in boxes marked "urgent." (Or something like that) I had a two month relapse when we bought our apartment, but out other moves were only a few weeks. Remember, I'm sicker than you.
    Also, remember "Rome wasn't unpacked in a day."
    I understand the autumn slump. I had a great month of August and now I'm sliding back. I guess that's four things, not two.
    Bravo for the pro/con analysis. In France, we have to pay huge taxes when we buy or sell,