So once you’ve gotten bad enough and have given into the Dark Side, admitted defeat, or were just plain taken to the hospital against your own will..what happens afterward? Getting back to normal can be just as hard as the exacerbation which got you there. In some ways you have to not be stupid and in other ways you just need to be a little smart. Here are some things I’ve figured out the easy way and hard way.
Stay on top of your meds. Even though you most likely feel craptastic after getting out of the slammer (aka the hospital) you’re most likely feeling somewhat better because of all those intravenous steroids they pumped into you. This past Monday I had 350mg of steroids along with an IV magnesium sulfate drip and was hobbling on sunshine for about 12hrs. They instructed me to nebulize duoneb no fewer than 4x/day and take extra albuterol if needed. I thought I was doing alright, I even nebbed some albuterol in the lobby while waiting for a ride home to get a jumpstart on things. Twelve hours later though I was gasping for air, sitting on my bed, and attempting to get some medicine into my airways with Liz threatening to call 911. Don’t worry, it all ended well, you just gotta stay on top of things.
Use the buddy system. I just mentioned Liz threatening to call 911. In a way, it’s her two-edged sword of seeing just how bad I am while also being prepared to get me some help. I have a major aversion to ambulance rides so this kind of threat will perk up my responsiveness especially if her cell phone is in hand. Seriously though, make sure someone is checking up on you and that you can readily get a hold of someone if you need to. If you’re breathing is bad enough, you might not be able to tell a 911 operator what you need and cell phones don’t always easily tell emergency medical services where to find you.
Keep yourself busy. This may sound easier than it really is, and mental health is a must. Sometimes I’m awake for days with no end in sight, or just by myself for hours and hours at a time. Find a hobby, write a blog, watch movies, read books, knit scarves, build models, repair a toaster, or add HBO to your TV line-up and watch all their original series. Whatever it is that interests you, make sure you have something to do.
Stay active. Take this one with a grain of salt, but my point is to not become too lethargic and lose what cardiovascular fitness you had before all this started. I’ve had weeks where I’ve only gotten out of bed for bathroom breaks and showers before. I understand when you’re pretty limited in your activity. No matter how bad I am though, I try to make sure I push myself a little every day. Sometimes that means walking to the mailbox to send those Netflix DVDs back or just sitting on the couch instead of lying in bed. Sometimes that means cooking a meal and doing my laundry, and some days all I can really accomplish is going to the doctor and then back home. Just be sure to not lie around all day every day, and have some attainable goals in mind for getting back to the usual stuff.
Find a community. With any chronic illness, it can be hard to relate to your healthy friends, and it can be hard for your friends to relate to you. You need to find some friends to complain to, commiserate with, attain advice from, and share your experiences with. You might check with your doctor’s office, local hospital, or American Lung Association for any support groups. You might find a group on your social media of choice, or you might even have a group of friends already with whom you can talk.
Don’t be afraid to call your doctor. I hate going to the hospital and being in the hospital, but it’s even worse if I have to go back. Similarly to staying on top of your meds, keep an eye on my peakflow numbers, oxygen saturation, when and what medication you’re taking, your general symptoms, and your gut feeling. Worst case scenario is you’ll call your doctor’s office or the answering service and be told it sounds like you’re ok for now. The real worst case is you not doing anything and ending up back in the hospital, or lying on the ground in your house trying to crawl to wherever you left one of the 5 inhalers and 3 nebulizers.
What tips do you have? What has worked for you? I’m always looking for more tips and tricks to getting back to normal as quickly as possible.