I am a member of a wonderful discussion group that focus’ on COPD and Emphysema. This group has about 15 – 20 very active members, and at least that many more in less and less active roles. As a member of this group you are free to offer any topic up for discussion or advice. Some topics are quite specific and others quite general. One of the current topics up for discussion is travelling with your respiratory illness.
One of the members of the discussion group offered up this quote “busy dying, instead of busy living,” as an example of how many folks live their lives once they find out they have a serious or terminal illness, and as you can imagine the quote applies beyond COPD. And this really applies to travelling, or even just getting out of the house. The Group uses phrases such as: getting out of their safety zone, fear of catching something, environment, handicap accessibility, equipment malfunctioning, and their car breaking down, as potential reasons for not travelling to the extent possible. And travelling for many of these people include: going out to lunch, or to the movies, and places where they can be back home by that evening. To many (non-ill) folks these may seem like sought after excuses by folks who are just afraid. Well, the truth be told these are very real reasons to not travel. Some of us barely have the strength to walk to our mailboxes, but we do, some of us have issues beyond our respiratory problems, which make day to day activities almost impossible, but many of us find the way to accomplish these tasks. When you take these day to day issues for many of us, and expect us to travel it becomes major endeavor.
When one has an illness such as COPD the act of getting ready to travel, is in fact a major stage production. I feel I am one of the lucky ones. I can still travel, and I have gone solo on several trips. Over the past 2.5 years I have put almost 15,000 miles on my vehicle traveling between Tampa FL and Louisville KY. Also there have been other overnight trips in FL and Alexandria VA. That’s about 25 nights in hotels and motels. Speaking only for myself, with cloths and toiletries a given, here are some of the other things I must consider and pack before the 1st bag goes into the car. And I have to do this for every trip, be it 1 night and 100 miles or a week and two thousand miles. For me to have any sense of well being, I must consider and pack everything on this list of items. Plus the items I am sure I forgot to write.
- My medicines at least twice as much as I will need, always in a bag that my hand grabs.
- A complete list of medicines I take which includes; the doctor prescribing the med, dosage, when I take it (am or pm), prescription number, and pharmacy number
- An 800# (24 hour a day) number for my respiratory equipment provider
- Local number and address for respiratory equipment provider (at destination)
- My 24/7 continuous flow concentrator
- Extra tubing for my concentrator (in 25 foot sections plus connectors)
- Extra Cannula’s
- My Nebulizer
- Extra mask for my nebulizer
- My Cpap
- Extra mask for Cpap
- An assortment of odd’s and in’s parts
- Extension cords to plug this extra equipment into a hotel room
I am sure there are a couple more things I do in preparation to travel that have skipped my mind, and this folks is by car. I don’t fly for a lot of reasons, but my medical needs would be at the very top of any list. The airlines claim they allow portable oxygen machines, but they are extreme picky about when and which machines they allow. And don’t even get me started about lost or destroyed luggage. Not to mention delays not only in the terminal but also on the tarmac. I can see me sitting in row 35 with my portable oxygen machine beeping because of low battery. Talk about gasping for breath. Well let’s just say that’s a picture we don’t want to look at.
Travelling with a serious illness is an endeavor, a stage production getting ready, and takes courage. My discussion group is full of very courageous people. I have learned a lot in the few short weeks I have been part of the group, the most important being never give up or in to this disease. Travelling is just one more thing for us to overcome and enjoy. Thanks for listening.