Motivation while constantly getting sick
I've been trying to gain some muscle mass, and made encouraging progress. I have a very small stature for a male at 5ft2 19 years with the bone density half of what is normal. A month and a half progress in I get a exacerbation. And I lose everything. All the work, effort and confidence I gained has gone within a week. Dieticians cant help since they've done everything they can and now its just 'eat more' , even though i'm eating 4-6 full meals a day excluding medical night feeds and drinks. My mental health is at an all time low.
What am I supposed to do?
Hi
, I can't even imagine how frustrated you must feel after putting in all of that effort to gain muscle and weight. It sounds like you're doing everything you can to gain more weight while following your care team's guidance. Have they ever suggested a g-tube? They can be really helpful for people who need to gain weight, in fact, we have an article about them if you're interested: https://cystic-fibrosis.com/clinical/g-tube.
I'm rooting for you and always here for support. I know you're going through a tough time so please don't hesitate to reach out. Sending so much love your way! - Sarah, Cystic-Fibrosis.com Team MemberI've had a g-tube since I was 12. It helps to maintain weight when I'm healthy but oral nourishment has always been the majority of my weight gain. Kaftrio has helped stabilize my weight so I'm really grateful for that, but I still get infections on a daily basis.
@abdurr, I am so sorry all your hard work is gone after each exacerbation. I know how frustrating and exhausting that cycle can be. Just a thought: have you been screen for CFRD lately? I really struggled with my weight (and had exacerbation after exacerbation) before I was diagnosed with CFRD. I was wasting away no matter what I did. I hope you can find a routine that helps you feel better. Sending a lot of positive thoughts and encouragement your way. Warmly, Janeil cystic-fibrosis.com Team Member
@abdurr, I'm glad your CFRD is well-controlled and that you have a G-tube to help you get those extra calories. Are you able to take a modulator at all? You will be in my thoughts! Hoping you can remain stable and really put that mass on like you wish! Warmly, Janeil cystic-fibrosis.com Team Member
Yes I do have access to a modulator. I'm on it on an off due to liver enzymes
I very sympathize with your situation, but try not to focus on weight and appearance, there may be some psychological problems
