Survivor – ME/CFS, FM & Immune Deficiency Edition

by | Mar 22, 2016 | Clinical Care, Fibromyalgia, ME/CFS, Patient Education, Patient Voice


‘Ginger’ writes about her journey through sickness, sadness, laughter and joy.  She describes herself as an optimistic, stubborn, pretty determined “ginger” battling the ails of getting sick as a little kid with ME/CFS, Fibromyalgia & Immune Deficiency. “I’ve accomplished full remission once, so I know it is possible.” In this blog, she writes about all she’s learned about surviving her many trips to the hospital. This is Survivor, Hospital Version.Survivor_MECFS_FM_ID

It originally appeared on and is reprinted on BHC Patient Voice with the author’s permission.


As I type this, the hospital band around my wrist is flapping against the keyboard, that’s how fresh my latest hospital release is.  For most people battling an illness, a trip to the E.R. is nothing that really needs to be “navigated” or “survived”.  If you have ME/CFS, or really any chronically misunderstood illness, ending up in the E.R. can be a scary thing.  You just never know how Doctors will treat you, or – how they will treat you.  These are a few small things I’ve learned can make a big difference.

What to Wear to the E.R.:

You’re probably thinking: “who cares?!”  This isn’t a fashion show.  I used to think that too.  But what you wear can make the experience a lot easier.

  • Socks:  E.R.’s keep the temperature low to help kill off existing germs and keep new ones from breeding.  As a germ-a-phobe, with a not-so-great immune system, I love this policy.  As a person battling a chronic illness, (whose feet and hands become painfully chilled when she’s sick or especially run down) this constant ice box becomes slow torture.  Add in a nice cold bag of IV fluids dripping through your veins and I promise, that chill will become painful.
    If you’re thinking you’ll just ask for a blanket when you get there, think again.  For some reason, these scratchy, paper thin, imitation blankets are hard to come by (I’ve gotten a morphine shot easier than an E.R. blanket).  Even if you are lucky enough to be honored with the presence of one of these faux blankets, I guarantee it will do little to warm you.
  • Slip on shoes:  if you have slip on sneakers/shoes, I highly recommend wearing them.  1) It’s a lot less exhausting to be able to slide your shoes on and off without having to unlace them.  2) You’ll quickly realize how gross it is to walk across the dirty hospital room floor and then slide back into bed wearing those same socks.  Slip on shoes can act as a perfect slipper whether you’re shuffling around in the ER or are admitted to stay.
  • Sweatshirts:  I never head to an E.R. without at least three.  I usually end up wearing one like a second skin I never take off (note: make sure it’s big on you so you can slide it up enough for the I.V. they will put in your arm).  I put a second sweatshirt over my shoulders (since they need access to your limbs for I.V’s and blood pressure cuffs, 2 sweatshirts will be too thick for them to get a reading).  That third sweatshirt? A perfect pillow if you spend a long time in the waiting room or a little blanket to keep your legs warm.
  • Long sweat pants:  No matter what your ailment is they will make you put a gown on but they almost always let you keep your pants on.  If you’re going to spend 6hrs in a waiting room or be admitted, you’ll be glad you put on warm comfy sweats or yoga pants rather than jeans.
  • Sunglasses:  Lie on your back and stare up at the brightest light you have in your home.  Now imagine 10 of those lights all blaring down at you in the hospital E.R.
  • Hair Tie/Clip:  Don’t forget to grab a hair tie, pulling your hair back will be key.  I prefer a seamless hair scarf/headband.  They’re easy to clean, can be worn about 20 different ways, hide a multitude of hair sins and best of all, they are comfy to wear while lying in bed.  Walmart sells them for $2.80 or they have whole sets of them on Amazon.
  • Sports Bra:  If you show up with symptoms that could in any way be an infection, even if you don’t have any lung symptoms, they will insist you get a chest xray.  This is no big deal if they’ve already made you get in the gown but for some reason, they usually do this process backwards.  You get semi-undressed to do the xray, then redressed, then they bring you back to a room (a mere 3hrs later) to put on a gown. *%&$?! So, consider ditching your bra for a sports bra with no wire to save the step of having to completely change twice.
  • Comfort item:  if you feel there is a good chance you’ll be admitted, think of grabbing something comforting – whatever that might be.  It doesn’t matter how old you are, hospital stays are always unnerving.  That third sweatshirt I mentioned, is also my comfort item.  A dear friend literally gave me the lucky sweatshirt off her back, how do you not feeling better wearing something like that?!

What to pack:

You just never know when you might hear the dreaded words: “So, – we’re going to keep you”.  It never hurts to throw a few things in a bag just in case the trip to the E.R., turns into a stay in the hospital.

  • ear plugs (once you hear the decibel with which they set the I.V. alarms, you won’t trade these for gold!)
  • toothbrush, toothpaste, a brush (a little welcome pack should be waiting in your bathroom when you arrive, after all they are charging you $100 for that $0.10 bag of saline but nope, you get nadda and waiting for family or friends to make it back to the house to get you stuff… well, that’s a crap shoot at best).
  • clean socks & underwear can give you a new outlook on life!
  • your phone and phone charger! The charger is key and what I always hear everyone searching for in the E.R. or hospital. Don’t forget the plug end, just having the USB cable won’t do you much good.
  • your meds.  This will seem odd but this saved me my last trip to the E.R.  It took me 5hrs to be seen by a Doctor.  Yes, 5! While curled up in a ball in the waiting room I began to have seriously bad pain, the kind that makes you thrash & moan (picture a Terms of Endearment moment). Thankfully I had grabbed my meds as I headed out the door and was able to take them to get me through the wait.  The other benefit is: when you feel that sick, basic info they ask you can instantly disappear out of your head, having the pills on you can make that easier.
    note: I no longer have to grab files as I race out the door, I have my crucial drug reactions, med list, etc linked online to my phone so it’s always at my fingertips but if you don’t, grab anything you might need.
  • your insurance card, I.D. & a little money (hey, it’s easy to forget the crucial stuff in an emergency!)
  • a drink (E.R’s are really cold but also really dry during the wait!)
  • This tip comes from my sister and while patients might not use it, anyone going with you might:  if you have the time/energy, consider downloading your favorite movie so you or your family have something to watch.  Wifi is usually pretty bad in an E.R. and if you end up stuck in a bed in the E.R. hallway like we did, (no room, no tv, no wifi), your only attempt at sanity might be that you downloaded The Big Lebowski ahead of time!

How to Survive Hospital Doctors:

I really do mean “survive”.  I can’t tell you how many mistakes Drs have made that could have had dire consequences if we hadn’t caught them…

  • When the new doc walks in, don’t give your entire medical story, they won’t listen and it won’t help you.  Give a few sentences that capture the overall picture.
  • Stick to the current issue, focus on that, try to tie whatever they ask about your past, to the current symptoms so you ensure they focus on fixing that and not reinventing the wheel.
  • Double and triple check everything! EVERY THING! Everything they say, they do, they don’t do.  When in doubt, ask the Nurse, even if she/he gets pissy you’re asking, ask anyway.
  • If you get admitted: ask for copies of all medical tests that have been done on you, preferably every day
  • (Most hospitals won’t give them to you.  Yup, that’s right, you can’t get a print out of the blood test they are staring at on the computer screen.  Am I the only one that thinks that’s crazy?  You can get them, they just don’t make it easy (shocking, I know).
  • You will probably have to have someone go down to “records” and pay $1 a page to get a copy of your test results.  I highly recommend sending someone down every afternoon to get the previous day’s test results. I have had Docs tell me time & again my tests were “fine”, “everything’s good”, only to find large red flags once I had access to them!
  • Speak up, speak up again, then speak up louder.
  • Don’t walk out of the hospital without everything you need (this will be tough because they will discharge you suddenly & without warning.  They will instantly make you feel like you are trespassing in the room that was previously yours for 5 days).  Don’t leave, don’t budge, don’t move until you get every single test script, drug script, printed copy of your records, referral or anything else you might need.
  • When they hand them to you, review them (yes, I know this feels rude because they will be there staring at you).  I hesitated before doing this last time but did it anyway.  I then had to spend the next 2hrs hijacking the room after being discharged because I kept catching major mistakes and I refused to leave without what I needed!) Once you walk out the doors, getting someone on the phone to give you what they already think they did for you? The battle is endless.

Hopefully, you’ll never need any of these tips but if you do end up in the hospital, I hope you have at least one person like this in your life…

gingerail_sisterA sister that misreads the precautions posted on your door and spends 25 minutes putting on every glove, face mask, bootie and gown that is on the hazmat cart because she thought she had to “suit up” before entering, so as not to bring in a single germ that could hurt you!  (What made her think she had to wear the gloves only used for surgery, I’ll just never know!)


Agingerail_pompoms Mom who decides your I.V. pole is just too boring and in her quest to make the 3wk hospital stay as fun as possible, decorate it with miniature pom poms.


A Dad who just laughs at the chaos your sister & mom create, as he is googling every one of your “out of range” blood tests (all while wrapped in an E.R blanket freezing his butt off because he didn’t take your advice to dress warmly!)


Or even just a friend who sends you the lucky sweatshirt off her back!

Sure, I may occasionally end up in the hospital but it’s all in the quest to true health, (which I believe is happening) and at the end of the day, I’m far luckier than most too.


Do you have a story to tell: a blog, a piece of artwork, a poem or song that highlights the strength, joy, humor and beauty that can be found in a life changed by ME/CFS and Fibromyalgia? We want to hear from you.

Learn more about how to submit your entry to the Patient Voice HERE.

Send your entry to [email protected]