How to Survive Winter with Cystic Fibrosis

Posted by: 
Erin Evans

After almost 31 years of New England winters I feel like it's safe to say I've learned a thing or two about how to make it through the cold months in (mostly) one piece.  Having Cystic Fibrosis means being susceptible to getting every cold/cough/flu/etc. that comes within arms reach, and living in a place that has a very long, cold winter it can often be hard to not get sick at some point.  The last few weeks in Vermont the weather has been brutal, to say the least.  And even after all the years of equally brutal winters I'm still never really ready for it.  These are just some suggestions of things I've found to be helpful while I try to stay warm, happy, and out of the hospital.

 

Get out

I find that the easiest way to fight the cold is to never go out into it.  I've also had to learn the hard way the meaning of phrases like "cabin fever" and "stir crazy".  These are very real things that occur when you don't leave your house for days at a time. The bottom line is don’t be a shut-in.  Get out of your house, even if it's just to run errands or simply go for a walk or drive (weather permitting).  It's also easy to convince yourself that you're safer inside because every public door knob and shopping cart is covered with germs that are just waiting to land you in the hospital.  If you think too much about germs and their potential harm, you're never going to be able to go anywhere or enjoy anything.  Being a shut-in because you're afraid of germs is only going to back fire.  Google "cabin fever" if you don't believe me.  I try to always wash my hands after I'm in public places, like the gym or grocery store, not only does it eliminate germs, but it's also an excuse to thaw my hands out under warm water.

 

Get (and stay) warm

Invest in really, really warm clothing.  This may seem like a really obvious one, but for years I thought layering with heavy shirts and sweaters and a vest or lined jacket was enough.  It was only in the last few years that I bought a really warm, hooded, down jacket, and it's made a HUGE difference.  A good coat and a warm pair of boots are key in not ending up sick.  For me, when my feet are warm I know I am okay.  Once my feet get cold I know I'm not going to be able to warm up on my own, because it usually means my core is also cold, and once that's cold there's no turning back.  At that point I know my only hope is to take a long, hot bath, which also helps relieve tension and clear congestion.

 

Get moving

Find a way to exercise everyday.  Even if it's doing plank pose and burpees while you watch TV, do something that gets your temperature up and you breathing hard.  This is the first time I've ever had a gym membership and it's the best decision I've ever made.  My boyfriend Scott and I now go five days a week together.  I also found my new favorite sport: Racquetball.  I honestly have no idea how I've gone my whole life without ever playing this incredible sport.  We play a few games then go ride bikes or run on the treadmills, then we, as I like to call it "pump some iron."  There's something fun about being the awkward, out of place girl trying to figure out the nautilus equipment while some guy with a neck the size of your waist looks on.  Yeah, we laugh and sweat a lot.  It's a win win.  

Don't have money for a gym membership?  Apply for one of our grants (if you have CF)!

 

 

Get with the program

Do your treatments as often as possible.  This may sound so simple, but it's amazing how much an extra treatment or two a day makes me feel.  I am lucky enough to be working from home for the time being and have found ways to plan my day around getting in three or sometimes four treatments (Vest, Hypertonic saline, Pulmozyme, Cayston).  I can easily get work done from my computer while I sit with my Vest, so it's not like it's taking me away from my work.  

 

Get after it

Tackle colds right away.  A week and a half ago I felt that familiar ache in my lungs, followed by the shortness of breath and deep painful cough.  We all have our tell tale signs when we know we are getting sick.  In the winter especially I have found that if I don't tackle colds right away they will only get worse.  At the first sign that my "cold" wasn't going to go away on it's own, and was in fact getting worse, I let my doctor know and she prescribed an oral antibiotic.  I'm just about done the second week of it and I'm feeling almost 100% again.  And if you do get to that point where you know you can't get better on your own, be ready to accept the idea of being admitted into the hospital.  No one likes going into the hospital, but telling yourself for weeks or months that you can get rid of it on your own, when you can feel it slowly taking over, is only going to make it worse in the long run.  Work hard to stay healthy, but also listen to what your body needs.

 

Get eating

I always find that it helps to eat a little bit more in the winter.  I always end up putting on some weight during the cold months, I think my body senses that it needs a little extra insulation.  There's nothing like eating warm macaroni and cheese after a long cold day.  It's called "comfort food" for a reason after all.  In the winter I don't always remember to eat fruits and vegetables.  Eating a cold apple or carrot just doesn't appeal to me when it's cold out, as opposed to in the summer when it's warm.  Scott and I bought ourselves a Vitamix a month or so ago and have been making smoothies like crazy.  Our favorite is one that contains two cups of spinach, and it's SO tasty.  

 

Get outside

Find things you like to do outside, especially when its sunny.  The lack of vitamin D we get in the winter can cause Seasonal Affective Disorder, which I think 99.9999% of people who live in Vermont probably have had at some point in their life.  I'm not a skiier or snowboarder, despite my Vermont upbringing, however, little known fact, there are other (less expensive ways) to enjoy snow in the winter.  Snow shoeing, cross country skiing, sledding, even just going for a short walk helps you feel a little less like a caged animal.  And the fresh air is always good.

 

Get away

Plan a trip some place warm and start saving, even if it will take you a few years to save up enough money to go some place warm, it will be something to look forward to and will make the -18 degree days seem somewhat bearable.  I should add that I'm guilty of not doing this one enough.  Out of my 31 years of Vermont (or Maine) winters I have only spent two, yes two, weeks away in a place that was warm.  And both times I went away (for a week each time) I said to myself, "Why don't I do this every year?"  Coming back to the cold weather with a tan also keeps your body and soul warm for at least a month, which seems well worth it to me.

 

Get hydrated

Drink fluids all the time.  In the winter in Vermont things get very dry and it's easy to get dehydrated.  When it's so cold out I don't want to drink cold things and therefore just forget to drink anything.  I have learned to love herbal tea though and drink it pretty much all day long.  I almost always have a warm beverage next to me while I work, or even when I leave the house I will take a travel mug full of hot tea to keep me somewhat warm while I'm out.  

 

Get rested

Sleep has a huge impact on how well we can face a day, not getting sleep means the negative wind chill is going to ruin your day the second it hits your face.  People with CF especially need that extra rest so their bodies can rejuvenate and be ready for all that it demands of them the next day.  The other thing I love about sleeping in the winter is I get to be warm for 8 hours.  Getting out of bed in the morning and back into the cold air is the hard part.  

 

Get relaxed

Being trapped inside, and worrying about getting sick, and how to stay warm, and feeling depressed from not having seen the sun in days, can become really stressful.  Stress is only going to wreak havoc on your immune system, so find ways that work for you to unwind and decompress.  If you have a job like mine, it's easy to just work, work, work.  There's something inside me that says "You might not feel good tomorrow so you may as well get as much work done today as you possibly can".  I feel lucky that I'm healthy enough to be able to be working full time, but I have to remember not to overdo it.  Find ways to balance your work and you non-work life.  When it's as cold as it has been been lately I also find that my shoulders get really tense, but the end of the day my back is sore and my shoulders are practically touching my ears.  I have to remember to relax and let go.  If nothing else, just think about how great summer is going to be when it finally comes around again.

 

 

Erin Evans has been the program coordinator for the Cystic Fibrosis Lifestyle Foundation for the last 7 years.  She is 31 years old and and lives in Central Vermont where she is currently trying to stay warm.  She can be contacted at: erin@cflf.org

 

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