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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Friday, February 22, 2013

Friday Tidbits: Dealing with Flares


Pathetically, the crash is written all over my face (in Budapest). I just wanted my bed.

I was recently asked if I could write a piece on what to do when we fibro's - as well as those who have CFIDS/ME/CFS - have the misfortune of having a "crash" or a flare.  I found it a bit of an amusing question since I think I may be one of those patients with CFIDS and/or fibromyalgia whose life can be described as "you can't teach an old dog new tricks"!  However, after scratching my head a bit, I managed to figure out a few "tips" which are such a part of "my norm" that neither I nor my family notice any longer!  On the other side of the spectrum, there are tips which may help some, though not all, due to the severity of the illnesses. I so wish that Fibromyalgia and CFIDS/ME/CFS had degrees as to severity of illness, as is the case with cancer and other illnesses.  Heck, I'd even love it if we could finally get a great "name" for our ME description, but that's asking for miracles at this point, I'm afraid.  We're so insignificant to the world that we STILL can't all agree on a legitimate name.

But first, what is a flare?  Basically, it's when you have a situation where you get sicker for a relatively short period of time, usually caused by overdoing it, being under too much stress for far too long, the man on the moon down in the dumps about something, the fish in the sea upset about "global warming" and any other random factors. Any one or any number of the fibro and/or CFIDS symptoms often experienced by an individual can worsen. When this flare continues unabated, however, and you get no better, then it's no longer a flare but most often a worsening of the condition of your general (fibro and/or CFIDS) health.

The best way of remedying a flare, of course, is not to get yourself into a situation that will risk putting you in jeopardy of having a relapse or flare in the first place.  If you've  been a reader of this blog for a while now, you'll know that I've done some pretty silly and foolish things which my body is absolutely outraged about, as well it should be.  

Does anyone remember the Academy (Oscar) winning movie "Network'?   It was especially famous for a particular line, "I'm mad as hell and I'm not going to take this anymore!"  Well, sometimes you're really sick and tired of being sick and tired.  You have to be "normal" even for a short time to maintain your sanity. For example, what sane person flies through twelve time zones to see her son get married?   Not a completely sane one, I'm afraid.  However, desperate times and all that!  Of course, that's the sort of reasoning that gets me into Trouble, with the capitol "T" intended.

But "silly behavior" is also things like going out and drinking.  If you have fibro and/or CFIDS/CFS/ME, for heaven's sake, then you are almost allergic to alcohol.  Alcohol in and of itself worsens your overall health.  It's a rather long and painful sort of self-harm.  So stop it!  DEAL WITH IT!  Grow up!  Period.  Fini.

Other acts of foolishness are also destructive to your health.  We all know about the horrors that any sort of stress can cause.  There is, for example, actual literature describing that long-haul flights are also a circumstance which those with fibro and CFIDS should avoid - and here I speak of literature for doctors, not just any old blog or random book.  

One example would be the case of Alastair Lynch, the famous and legendary Australian Rules Football player who came down with CFS/ME in 1995.  After much "running" around to various doctors, Lynch found himself in California with Dr. Jay Goldstein (whom I cite in one of the introductory pages at the top of this blog).  Dr. Goldstein advised Lynch to stay away from long flights, among other things.  I read Lynch's book while in Australia visiting my son - who was in school there - and thought to myself: "well, now we know why I was bedridden for two years after each of my first two trips to Oz!"  (Of course, the next thing I thought was, "NOW how do I get home???)  At any rate, Lynch didn't quite believe the good doctor and became so sick that he had to be wheeled off the plane once he arrived in one of the farther cities from Brisbane. (As if ANY major city is close to any other in Oz!)  After this, he was allowed to fly only to games which were less than a two-hour flight away.  Any longer and he went into flares which started on the plane, freaked out the plane crew and continued until he got home and rested, thus defeating the purpose of flying to the game in the first place. 

Note: This is all from memory and since we all know that my memory is not one of my stronger suits, we'll have to agree that I may be off on some of the details.  One day I'll find that book in this "disorganized" house - when I have the energy to actually hunt for said book - and will write a post on it all.  In the meanwhile, you get my drift.

But getting back to recovering from a flare...

First of all, before we go any further, I'd like to suggest that you have a list in place of what helps you get through flares BEFORE you even go into your next one!  This is because once you're in a flare, it's hard to remember what works. I have to admit that I'm awful in this aspect but I've been spoiled.  Hubs and my kids are pro's at what helps me.  Me: I'm such a lost cause that I don't even have a list of the meds I take and rely way too much on hubs and daughter.  This may be a good way to keep a family together, but not a recommended way of doing things.  But then we've long ago established that I'm a bit of a hypocrite!  But more of that later in this post.

Keeping a list also helps one feel a bit more in control of what's going on - for the most part.  I think I'm the odd duck who thinks that preparing for a flare by writing a list means that I really AM sick and thus I'll need to accept the truth about my health - or lack of it.  So I just stay away from it all.  Weird, I know!

But on to help with flares.  Let's simply say that you probably also have this not very helpful type of personality, which under extreme circumstances decides it has to do certain things as life comes along, no matter the price to be paid later on.  (I can just see all of you nodding your heads out there!  You KNOW who you are, don't you, and you know what I mean!)  Here are a few things that may help you deal with the dreaded flare, hopefully helping you shorten the time it takes to get over the awful hump. (Why do I feel as if I'm contributing to the delinquency of a minor?)


  • Give yourself time to rest up for any trip or affairs (get that mind of your's out of the gutter if you please) beforehand in order to have your mind and body at their optimum.  My rheumy likes the "basic" formula of two day of building up "health credits" and then at the very least two days recovery time after getting home, with complete and total rest. If you're like me and don't listen, you run the very real risk of slowly killing off your body, as I did with the pneumonia, sudden hypothyroidism and then that cherry on top: the gall bladder surgery.  This is NOT a good way to go, folks!
  • Taking baths with salts which contain magnesium (e.g. Epsom salts) are a life-saver.  Magnesium helps pain in general (post coming up!) and speeds recovery.  Do a magnesium salt bath often! 
  • Get as much sleep as you possibly can because that's when your body resupplies your HGH and other goodies. Sleep is not just for beauty.  It also helps your body repair whatever damage has occurred the previous day.
  • Drink plenty of fluids, especially water, to get rid of the toxins in your body.
  • Stay as far away as possible from toxic people.  You know who they are! 
  • In a perfect world, get an IV nutritional (e.g., Myer's cocktail).
  • Stay as far away from food triggers as possible.  Hopefully, you should know what does and what doesn't work for your body.  Sugar is basically poison to me and my body can't seem to survive at all without animal protein, and a LOT of it at that. (And since I DO know my body so well, I'm not about to jump on the latest "fad" train: it causes ME too much harm to do so!)
  • Find distractions such as watching a few DVR'd TV shows or favorite movies (funny if possible, for the endorphins that are released).  Keep a supply from the library on hand or buy them and keep them for those times when you really need them.
  • Try to stay as positive as you can.  Keep in mind that "this too shall pass."  Personally, I hate this point because to me it's like telling a person with depression to get over it and then smack them in the face, but it works for some.  
  • And you know what?  Don't believe half the crap that's written out there and that includes books written by some so-called fibro and CFIDS experts.  I personally think that it sets us all up for failure.  There: I've said it!


    We've come to a huge bugaboo of mine. If a person has Type 1 diabetes (the original one you're born with, not developed from years of overeating) you don't tell that person to shut his or her mouth and also stop the insulin.  That kind of thinking is insane, cruel, devastating and eventually fatal!  So try yoga, try meditation, try food diets, try exercise.  But half the books out there are nothing but BS.  Yes, I know I sound harsh but I'm also fed up with the propaganda that's out there.  It is NOT in our heads.  Yes, attitude helps.  Yes, being as positive as you can be helps.  But it is NOT a character flaw to be ill with CFIDS/CFS/ME nor fibromyalgia. Moreover, we all have differing degrees of fibro and/or CFIDS!  Some are able to work, if they modify their activity level.  Others are bedridden and can barely see to their personal needs.  

    Furthermore, I hear "ask people for help."  Guess what?  Help only helps but for so long.  Can anyone honestly expect people from my church or the kids' schools to help me out for three plus decades?  Get a grip on reality! (Geez!!!)

    Anyway, that's my political incorrectness for the day.  Again: Deal with it.  Try the best you can but don't beat yourself up.  Our governments, our politicians and our medical establishments need to step up and help us. Period.  Full stop.  So what if our countries can't afford to subsidize our disability?  We paid our taxes when we were productive members of our societies and it's about time that these institutions step up to the plate. In return, we need to step up to the plate and stop foolish behavior - which, I know, is rich, coming from me.  

    At any rate, as always, I hope everyone's doing their best, only better.  Ciao and paka!  And stay away from those flares! ;)


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    2 comments:

    1. Hi,

      I have a quick question about your blog, would you mind emailing me when you get a chance?

      Thanks,

      Cameron

      cameronvsj(at)gmail.com

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      Replies
      1. Check your mail, Cameron. Hope this brain of mine got that right! xx

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