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Thank you for your reply. We need to keep each other going. I am Irish from Dublin but moved to London in 1989! I am still Irish!
I look back at photos from 4/5 years ago and it is depressing. People comment on how thin I look - this does not help. I was not put on treatment again last week they need to check for antibiotic resistance. I am not sure if I want to go on treatment again. If I have a good sleep I am fine but no 2 days are the same. The weather impacts how I feel too.
Pity about the deodorant.
When I go out walking I always think will I ever get back to my old self again - I think not. Anyway onwards and upwards. We need to battle on. It is ok to feel down and say that we don't feel good. Bright, sunny days are the best and eating chocolate gives me a boost. Look after yourself.
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Hi namd,
It's been six months since we spoke last sorry for the delay.
You said at one time how you felt sad, fatigued, dont look the same and how you feel about yourself.
Noone i feel will ever know what we have gone through.
This is our journey for what ever reason. Maybe we can help someone in the future some how from our experiences?
I now do Not let words effect me Anymore from others. It's taken me untill know and alot of soul searching these past years of being sick to learn to relax. This is my life right now.
I had a vedio apt last week with my infectious Disease Doctor...
After over three years of being soo sick. So Many labs, Infusions, ecg's, sputums, ect.
I No Longer Have Mac!!!
I stop all three meds on January 5th 2026 and no more labs, ecg's ect.
Thank God 😇..
I now think how will I be when i stop the meds? How long will it take for my body and mind to heal?
I have been moisturizing my face and body that's had a hard time during all this.
It helps.
Most of all, I'm sooo happy!! I can look forward finally instead of feeling i can't do all this anymore and I am stuck..
It is totally ok to feel your illness. It changes soo much in your body that no one else can ever understand..
I listened to Buddhist messages on YouTube. Breathing techniques, calming vedios, inspiration ect.
It taught me to take care of me. Feel healthier. So I felt it.
That phone call from my I.D doc was one of two things would happen on that visit my third lung biospy or get off meds.
I feel that stuff helped me to slow down my illness in my mind.
There's hope for you too