I have not yet started treatment, but all I have to do is think about my hair falling out and I tear up.
I'm curious as to what side effects you are experiencing. How long are you on the tx and what kind of drugs are you taking, (what genotype?)
I knew going into tx I could become sick, although I was not prepared for the toll tx would take on me. The first few months I had a rough time mentally with tx. Around 10 weeks in I just accepted the fact I would not feel good for a while. Once I changed my frame of mind into the sickness mode it did become easier mentally. I stopped fighting it, feeling sorry for myself and accepted the sides as they came.
Somehow you will learn to adapt and accept life is going to change, and you can't do the things you use too. You will learn to pace yourself and rest when you need too. You may do a lot of resting.
Your humor will be a huge help during your journey. If you can laugh and make jokes of it that will help you through.
Throughout your tx keep in mind this is just a temporary situation and when your done your life will return to normal.
I finished 6 weeks ago and I am pretty much back to normal. It was a long hard road but well worth it to be UND.
You muddle on through, just taking one day at a time. Enjoy your good days, be kind to yourself on the bad days. Day by day by day until one day it is over.... And post on this forum A LOT!
You can ask the doctor for additional prescription drugs to help you through it. I'm on Xanax and a prescription pain killer for headaches. Many take antidepressants, too. If it's itching, there's a couple routes you can take for that, prescription wise. Do what you have to do to make it as bearable as possible. For me, if it meant being a drug induced zombie, so be it. Xanax is the only thing that has made the past few months tolerable, and actually it makes me feel normal, well more normal. Normal, what is that??? lol!
It does take a while to make peace with the side effects of treatment. Using humor is certainly a great way. I had to continue working full time when I was on treatment so I just started moving on automatic pilot and got through each day and tried not to think of "being on treatment" while I was at work. As soon as I got home from work each day I collapsed into bed or a spot on the couch and rested until the next morning for work.
Brain fog was an issue for me in the beginning but it seemed to lift. I hope yours lifts too.
I did not take an anti-depressant but I did take an occasional Xanax...probably less than 6 a month.
I lost more hair than most people do and I had to resort to wearing a wig to work. I'd rather have my own hair but, I have to say, that putting a wig on each morning (and they do look very real) was much easier than fussing with my own hair. Hair will grow back.
Hang in there!!
I love your phrase "Making peace with treatment". I made peace early because I knew I was going to do it no matter what because my biopsy was so bad. I just slogged through no matter what and if I had side effects that needed to be addressed, I reported them and did whatever the treatment team recommended. It does become easier to keep going without feeling too sorry for yourself once you get that first PCR report saying 0 (UD).
Still a fuzzy-headed at 9 wks. post-TX but I know it will pass just like all the rest of the SX did.
"Making peace with treatment"
My conclusion is,
Treatment is like the Tx Gods put Tx Demon’s names in a hat and draw for which one you get. You may get a strong one; you may get a weak one.
Humor is your strongest defense. I got a strong one (Demon) and Humor is where I drew my strength.
We will be here for you, R. Glass
I have to admit that my sense of humor totally helped. Looking back (i'm 6 weeks post 48 wk tx) I am realizing that my sx were probably worse than I thought. But, heck....I talked myself out of it most of the time. I think I actually talked myself into some sx as well when I thought I was on Telaprevir. Things like anemia, neutropenia and itchy rashes(been there, done that) are what they are and you will feel krappy a lot of the time, but even then humor helps. There are good days.
I'm really hardheaded, so even when riba/peg was kicking me, I either wouldn't admit it or was in total denial...but it worked for me. My mantra was "one day closer" and that was all I was asking for.
I choose to believe that the lessons I learned from tx are better than the worst of the sx I had on tx. I love the post tx me....I totally embraced the Riba rage and am working it well even now.
Keep in mind tho, that I feel my sx were lighter than many here. Wasn't a walk in the park....but totally doable. I am in a Vertex trial and believe I was on placebo. I was at the upper limits of weight for 1000mg riba and that may have lessened the severity of my sx. I only lost about 20% of my hair for example...and lost no weight, only muscle tone.
My advice is to listen to your body. Drink lots of water. Get (very light) excercise even though it's the last thing you want to do. Be aware of sx and when the hit....hit them back. Get the best of them before they get the best of you. If it itches...don't scratch it. Baby yourself, embrace the down time with new comfy pj's and a snuggly dog/cat/spouse/kid. Don't shower or bathe too often and wash hair only every 3-4 days..
And, yes....post here often and at length (as I have just done ;) ) This place is a life saver through tx and venting helps.
Wishing ya the best,
It helps a lot if you have a healthy sense of the absurd. When I was feeling my worst it always helped to be able to laugh. This forum was my refuge, and I hope it will be the same for you. Best of luck.
"all I have to do is think about my hair falling out and I tear up. "
Geeze, most gals worry more about the pusy sores, public flatulence and the coarse facial hair. Count your lucky stars that those aren't things that bother you.
What helped me was remembering that the symptoms would pass.
When I felt really down, it didn't last. When I hurt, it went away.
Hair grows back.
That's what I tell myself every time a new hairdresser butchers my hair!
Surround yourself with things you enjoy, music you like,good movies, humor,etc.
I kept a little book by the bed with quotes that pick me up.
And exercise when you can. Walk, its good for the body and mind.
Yes the hair grows back very fast and you might be one of the people who hardly lose any at all! I wasn't so lucky and lost about 75-80% so then I went out and bought a bunch of wigs different colors with different streaks and lengths and made it fun and would match them to my outfits for the day. It made it kind of fun honestly.
Believe me I treated for 72 weeks and was one of the unlucky's who got drastic sides. But you cannot focus on that. You have to remember that you aren't doing this for fun you are doing this to save your life. You have to remember that the day will come when treatment WILL end. It has an end date - it's not going to continue forever. And every day you just gotta get up and say all I have to do it make it through today and then do it come hell or highwater.
I found that working every day really helped me a lot (I had no choice) because I got up and showered and dressed and madeup and came in and saw people and got my mind off the treatment for a while. If I had just laid in bed it would have made it SO much harder.
You just have to keep it all in perspective and hang on. That is the secret you just gotta have faith in yourself and don't let go of it!
My hair took about 6 months until it was normal again.
Two and a half years later my hair is a third of the way down my back. Maybe a bit more.
6 weeks post tx and I still have to mow my eyebrows. Maybe they were always this way and I just never noticed.