People who don’t have lymphangioleiomyomatosis (LAM) probably don’t understand what it’s like living with a debilitating lung disease that limits everyday activities. Even the simplest tasks can take a lot out of us and we have to plan when and how we want to use our precious energy.
Kelly says…
I cannot have a life after work because I hit the wall at 6:00 pm. I get home from work and I don’t have the energy to make a phone call. I always exercised until the last few years when the fatigue got to be too limiting. I am so tired that I cannot keep up with my work responsibilities. The fatigue is limiting my life and opportunities.
Maria says…
My LAM disease is moderate. I only utilize oxygen at night. I do rest or lay down after a shower, after I blow dry my hair, etc. I find that I have to plan all of my activities. For example, if I want to have an evening out, I will rest most of the day. Even tying my shoes takes strategic planning. I can’t be outside at the park with my grandkids anymore. I don’t dance at all anymore. That’s what I miss the most. I don’t think I can finish dancing a whole song, anymore.
Meg says…
I now have to be on oxygen 24/7, and am challenged finding solutions that keep my oxygen and energy high enough to do even the most mundane of activities… activities I had once taken for granted. So I now need to change the pace and intensity at which I once lived my life. I can no longer play with my daughter and chase her around or pick her up. I can’t walk at a normal speed because of portable oxygen machine restrictions, so I find myself always slowing people down when we are out and about. I get tired after just a few hours of activity and often nap on the weekends.
Ine says…
My biggest problem with LAM is my extreme fatigue. That obstructs my daily life. I need oxygen every day for 12 to 16 hours to function reasonably well. I have very little energy so I have to think carefully what I do and what I do not. Going on holiday is something that has become more difficult because I often do not know when I feel good and when I feel slaughtered.
Kristy says…
I can’t bend my head lower than my waist, because the fluid in my lung causes excruciating pain and I nearly pass out. It sounds weird but play with a 4 year old and you’ll know!
Sina says…
I cannot walk quickly or upstairs and talk at the same time. (Me neither, Sina!)
Support women with LAM and help find a cure
Organizations that help women with LAM need your support! Click the links below to donate or learn more about the organizations that have helped the women who participated in this project.
WWLAM fundraising page for the The LAM Foundation (US)
LAM Selbsthilfe Deutschland e.V. (Germany)
Stichting LAM-Nederland (the Netherlands)
LAM Australia Research Alliance (Australia)
For information about all the global organizations that are a part of the Worldwide LAM Patient Coalition, click here.
