If you’ve ever seen the movie Groundhog Day, that’s probably the best example I can give about my experience with PBC. I know each and every day what my day will be like. Waking up is tedious due to the joints just aching because of no movement during the night. Feeling totally “unrested” even with 6 to 7 hours of sleep. Slowly making my way down the steps each morning to start my day knowing that my day is going to be mind over matter getting through.
I’m a more upbeat person with the attitude I’m here to live, not just survive. I truly enjoy life and the people I have in it, so no matter how I feel, I’m going to enjoy my day and hopefully hide as much of the “exhaustion and pain” I have from the people I’m around. Although I still work, I’m fortunate to mostly do it from home. But I take the day on as though I will be out and about by shaving, showering, and getting dressed for work and go in my home office and get on the phone and computer to start my work day.
Usually late mornings I need to take a break and catch a bit of a nap in my lounge chair, although my work is not physical, it still seems to wear me down. It’s not uncommon for these naps during both day and late afternoon, the fatigue and pain throughout my body is a daily occurrence I just can’t seem to overcome. After work, we usually have a game to attend for one of the grandkids, which although really tough to motivate my body and mind to do, it’s the bright spot of my day watching them and having them know I’m there for them. Then off to home for dinner, a little TV, and off to bed by 10 p.m.
I need you to know one thing though, as bad as I think I have it, I’m blessed. I have a phenomenal support team: from my family, my Facebook support group, the PBC Foundation, and most recently the Global Liver Institute. As rare as this disease is, we have people fighting for us daily and I’m forever grateful for that. I also realize that with my daily struggles, we have medicine that slows this progression down that allows me to live the best daily life I can. Don’t misunderstand me, it’s hard on a daily basis, real hard especially knowing this is now my life. But reaching out for support and education and advocating for myself with my doctors allows me to do and be the best I can in my control.
PBC/AIH patient of 9 years