Setting Limits and Pushing Boundaries
By Debbie Ajini
CF has evolved over the years on so many levels. Back in the day, kids with CF were encouraged to sit down and watch. They were told to “take it easy”. I remember getting out of many gym classes due to my CF. The funny part is my lung function was probably the best then and I was encouraged not to do too much. Now we know starting exercise at an early age is one of the best things someone with CF can do.
I guess as with any culture or group, you evolve. We have learned so much about CF in the past 30-40 years that things are approached very differently today than they were when I was a kid. Now I enjoy pushing the boundaries of what someone with CF should or shouldn’t do. And as my lung function has declined, I have learned to set limits for certain things.
One aspect of setting limits that I am struggling with is travel. I have written in a few columns about traveling. My husband and I enjoy it. We haven’t been to that many places in the world, but anywhere with a beach is a good start. As my lung function has declined, so have our travel plans. As I am sure others will share, it takes some effort to plan for a trip for someone with CF. Planning takes more work for me now that I use O2. As I wrote in the Spring 2006 and Autumn 2007 issues, I have really worked on figuring out the logistics as far as setting up O2 delivery, what to pack etc. Then if you throw in O2 and things like the Bi-pap or tube feedings it adds to the planning.
Not to mention the actual work of being on vacation! I know that, to healthy people, sounds silly. But to those with CF, we know it does take a toll. Traveling wears down even the healthiest person. I certainly do not need a new bug to fight. Coincidentally, the major crisis for me began the day before I left for Mexico. I took an oral antibiotic with me. I felt OK but did spike a few fevers. Over the next two months things progressed from orals, to IVs, to the hospital, to the ER. I still wonder if that vacation made whatever was starting worse. Yet, if it did, I don’t regret going.
Our last vacation was over a year ago. On the cruise I did not use a wheelchair. I walked all day. A lot of the time my husband carried my O2 but I walked. And I felt great. So, I know I could probably push my boundaries more. Part of me really wants to go somewhere. I think a warm, sunny place would be a good boost for me. I know my husband could use the break too. But I just don’t know. I feel better just doing trips here in Michigan and being close to my home base.
We have dreamed of going to Fiji for many years. Do we not go because of the lack of healthcare and knowledge of CF, or do we plan as much as we can and go? Do I travel at all? Then, if so, how far from home am I willing to go? Or, more specifically, how far from a CF center do I go? I worry that I am limiting myself unnecessarily. The mountains in Colorado will be just as breathtaking this week as in 10 years from now. The ocean in Fiji will be just as blue. But I am scared. Scared to get out of my safe zone. As I get closer to the process of transplant, I do not want to mess anything up.
I just found out I am going to Pittsburgh in July for a transplant evaluation. Once I cross that hurdle, part of me feels like we should travel then. I have a hard time with the phrase “After transplant…” On the one hand (see, I need more hands!) I understand that right now there are things I simply cannot do that I will be able to do “After transplant…”. But then there are things like having a big party, redecorating a room in our house, or traveling that I really could do right now. It would just take more time to plan and eventually execute. So I wonder is it worth it for my mind to do these things now or to wait? What is the balance between me setting my limits and pushing the boundaries?
I do know it is not healthy, mentally or physically, to sit back and not participate in life. The challenge for me now is how much should I do, how much can I really do and how will I feel after I do it? I may have many more limits that I set on things, but I also know there are still a few boundaries I can push!
Debbie is a Director of USACFA. She and her husband, Louie, live in Michigan. Her email is: dajini@usacfa.org.
