The past few months have been frustrating for me due to the freezing cold weather and the insane amount of snow that Connecticut has gotten over the course of a month (it’s only been a month!?). Because of FOP’s progression the past couple of years, it has become more difficult for me to remain active during the winter months (usually late November – early March) for several reasons.
1) My immune system isn’t as strong as a “healthy” person’s, so I am extremely susceptible to bacterial and viral infections. It’s my personal choice to avoid large crowds during this time and lessen my chances of getting sick. Also, I like to be able to say that I’m hibernating.
2) Somehow, no matter how warm and cozy the house is, my body seems to know when it’s winter. I often experience a moderate to intense amount of pain that lasts several days to a week. This pain combination (my neck, chest bone, and tailbone) has unfortunately become nearly second nature to me. I believe the pain is due to my severe scoliosis (from FOP, not able to be fixed) and the way my neck is abnormally tilted (shrug your left shoulder – that’s basically how mine is permanently). The hardest part about experiencing this intensity of pain is that normal pain medication (Tylenol, Ibuprofen, and even stronger medication like Tramadol) doesn’t dull it at all. *
3) My muscles and joints often feel stiff from the cold weather, so it’s physically taxing for me to travel in the winter (especially during exceedingly cold temperatures or bad weather). My energy is spent much quicker.
The solution to Reason #1 (listed above) doesn’t necessarily mean that Staying Inside to Avoid Getting Sick would work 100% of the time. I seem to catch infections easily, since I recently experienced a really awful case of the stomach flu last weekend. I haven’t been out of the house in about a month, so I’m not quite sure how I got it.
But anyway, having the flu is not something that anyone ever wants, let alone someone with medical complications. I wasn’t able to keep any food or liquids (besides sips of water) down for two days, making me progressively weaker by the hour. The motion and severity of this occurrence took its toll on me. I later developed a minor flareup on my chest bone (which is already quite affected from FOP, it’s somewhat pronounced with extra bone growth), but I’m not sure if it caused any progression. If so, it’s not noticeable to me anymore and hasn’t affected my daily life. By the third day, I was on the mend and survived the remaining 48 hours on saltine crackers, homemade chicken noodle soup (thank you, mom!!), rainbow sherbet, & other light meals. (And now I have a deeper appreciation for food.)
Throughout all of the sickness and pain that I’m dealt, I always try to keep in mind that there will be better days again. A positive attitude is one of the most important things to maintain, especially when you’re going through a tough time. I find a lot of comfort and strength in God, my family (including our fluffy Maine Coon cat, Prancer), music, and, of course, writing.
* Every single individual with FOP is affected by the condition differently, so they may have contrasting viewpoints or experiences. We all choose which methods of painkillers work for us (if any) and we find ways to cope.