Filling the Well

[hepcandme]

Hi fellow Heppers

I was looking for some previous posts that explained how people deal with their fatigue and ongoing pain and all other lovely gifts that Hep C has brought along with it

I feel like I do 2 things that stress me out - 1) I try to do too much in a single day and 2) When I then crash and want to sleep all day, it makes me frustrated and makes me feel like I am lazy (who sleeps all day long?) and then I feel sad that I can no longer be the energetic person who can work 12 hour days because the work is good and meaningful and rewarding

I know that everyone feels the effects of Hep C, cirrhosis and treatment differently but I remember someone explaining that rather than trying to do Everything they once did, they look at it as having a well of energy that is filled and then when it gets used up, one has to rest and refill that well

And that it is better to choose 1 or 2 things that one can accomplish and still meet one's own expectations of a a job done brilliantly rather than 20 projects that are sorta done but more likely in a state of needing more time to deliver

Any advice from all of you would be much appreciated

Tired of Being Tired

[hepcandme]

Susan, I thought you would appreciate that sometimes there is an item on my list that says:

Eat food

hehe

Going to the gym everyday? You're a rock star!

But I get so excited when I hear people feeling much better and more energetic. Something to Really look forward to

Lynn is our test bunny rabbit. So Lynn, feel better and full of energy already!!!

[patra_]

Yes!!  Energy does return!  I couldn't believe it.  Of course, it took a few weeks after EOT - first had to build the HMb back up from the Riba anemia.  I'm still getting used to it and worrying that this is just a fluke.  I swept and mopped my floors last night!  I have not done that in YEARS!  Thought it needed doing, got the broom & mop and did it, all without thinking long and hard about it or forcing myself.

Something to look forward to, Ladies!  

I still have two weeks til EOT24.  Labs will be 2 days later and Dr visit 6-8.  Praying the news is still UND.  SVR24, what a beautiful thing!

Hang in there, Linda - won't be too long, now.

Susan, I know it is in your future, when you are ready to treat again!

On to SVR and having energy again!

Blessings and virtual hugs!

Pat

[susan400]

I don't want to sound negative, so if I do, I apologize in advance.  Since, I've never been able to clear long enough to be SVR, it's really hard for me to say that I've gotten that 'surge' of energy.  With that said, I am grateful to still be non-cirrhotic and still be here after dealing with this Hep C thing for over 30 years and 12 treatments.  But, I've had to cut back alot on social extracurricular activities.  I have 1 major social event of the day and that is going to the gym to try and stay healthy as long as I can w/living with Hep C.  But, that's all I can handle because once I'm done with my work-out, get any necessary groceries, etc., I'm literally done for the rest of the day.  Basically, sit, get up fix food, sit, rest, get up run a vacuum, sit, sit, get up stretch legs, sit, wash clothes, sit, food supper, sit, go to bed.  I know it sounds depressing, but it's basically all I can handle. If I know I have to go out to meet up with someone for like a dinner out, I have to either skip gym, or have alot more down time prior to going out.  I think thouse who have cleared and gotten SVR, may have a different more positive energy.  I'm thinking if you get SVR, your energy will improve once the meds clear out of your system.  Susan400

[hepcandme]

I know, thanks for the reminder, LL

There is a sadness/hopelessness side effect from Riba that is difficult for one to gauge when you're going through it and prevents you from saying

It's the med! I'm feeling down and really cra*** cuz of this nasty drug I'm taking!

I am feeling much better today.

Brunch with friends and then a hike in a beautiful park with a creek running though it, we saw 2 baby Horned Owls and the Mom too - some 100 feet high in a Eucalyptus tree. It was so cool! Like, the fuzzy little teddy bears of the bird kingdom

Tuesday is 1/2 way for me!!!!!!!!

So, yeah, relatively speaking, short-lived

[Livelife777]

Hi Linda.  It's that Riba talking to you.
Kinda gives you episodes of self-doubt.  
Thankfully it's taken briefly.

Listen to your body.......Get that needed rest.

[hepcandme]

Wow, great comments and advice all!

As I too limply pump fist! Yes!

Great line, Odin. And thanks for allowing the elephant a comfy seat in the room.

"Then the relapse doubt creeps in. It's pale crooked finger reaches out for the great big fatigue history stack. What if I go back to the usual really tired all the time after treatment? Then you feel more vulnerable during the on-treatment struggles"

I know, I know, be positive but it is hard at times - especially when you are feely lousy and I also think that it adds another burden on people going through treatment. People will relapse. A small percentage will relapse. So, let's not add to the burden by saying "you weren't positive enough or you didn't do this right" Or, as my son and I joke, my epitaph will read:

She Should Have Done More Yoga!

Everyone who has gone through treatment or is currently going through treatment is a hero in my book and the thoughtful comments here were just what I needed since sometimes I think that I am just being too whiny or too sensitive or too, whatever

Good night my friends - got 3 Important things on my to do list tomorrow and 2 of them are just about having fun with friends!

[keepingOnkeepingOn]

I write lists of the most minute thing that needs to get done. I pace myself so I'm not down on my back for a couple days. If I can't complete everything on the list in one day I give it a span of a week like a weekly to do list. I don't sweat it if something doesn't get done. I pick my priorities on good days and pick the easy things on not so good days. This helps me to stay functional everyday. I got tired of getting burned out and need to keep active to help my liver heal if only a little. Pacing myself helps me build up my strength too.

[OdinLovesLife]

I hesitated to respond to this. It's a raw nerve. It would be so easy to slide into negativity on this topic. I didn't want to do that. At first I thought I would say, "wells are deep". Somehow, even when it's really tough, we manage to get through to the next day and beyond.

As the years have progressed, much that I previously did with ease has fallen aside. I can't keep up with everything, yet I am still doing valuable things, living life. If when I was 20, my strength and energy levels had suddenly dropped to the level I had just before I started treatment, I would have been really upset! Now I would be really pleased to get pre-treatment levels back. All so relative.

Riba. Ugh. I am counting the days until I can stop taking it. The crux of the matter for me, is "temporary". The new treatments are so so so much easier to tolerate than IFN/RBV+[various]. But if Riba is there, it still whacks you around. I have been treating the fatigue like I would on a long distance ride or hike. I have been trying to operate within my limits and slow right down the second I feel myself enter the red zone. Or, in this case, grey zone might be better! If I feel even slightly dizzy or tight in the chest, I just stop moving or slow to a crawl. It's too easy to forget to keep the pace slow, or to think that you have more in the tank than you really do. Then it sure does take days to get over the ensuing crash.

I am working from home more, I don't have to battle with transport to get to work when I do go there, but by the end of the week I am still a complete wreck. Have to spend almost the whole weekend lying down. Into the 8th week I am feeling like the weekend isn't enough rest to refill the tank.

Back to temporary... I can easily do haemolytic anaemia for 12 weeks! Right! Limply pump fist...! Yes. Yes! Then the relapse doubt creeps in. It's pale crooked finger reaches out for the great big fatigue history stack. What if I go back to the usual really tired all the time after treatment? Then you feel more vulnerable during the on-treatment struggles.

I hope I can soon be encouraging people here to have strength because most really will get better. Treatment, even with Riba, is do-able. If your eyes are open to it, there is always some little thing, even when you hit rock bottom that can bring a smile to your face. A kindness offered or observed in your moment of weakness. It's life.

[flyinlynn]

Hi

I am kinda dumb like that I just go till I can't no more then crash and burn for a day or two then start again. I always am driving myself but what works for me doesn't work for everyone to be sure.

My spouse says why do you have all this energy when you want to but then sleep forever on other days, thinks I am making a choice to sleep 16 hours. More of a necessity

[patra_]

Hi, Linda:  I love the 'well' comcept!  That is how I operated for many many years, during the 'normal' fatigue of hepc anf the worse fatigue on tx (24 weeks Sol/Riba).

I read what all said before I started tx and thought I was prepared as I had been suffering fatigue for years.  Then one day, about 3 wks into tx, I was doing my 3d or 4 th errand of the day - grocery shopping - when the wave of 'empty well' hit me!  I thought I was going to collapse in the floor.  I managed to get my last 2 items, check out, but had someome come out to the car to load my groceries.  I 'pushed' the cart because I was hanging on for dear life!  I made it i to the house to my chair - about 16 steps and literally collapsed into the chair!  

Needless to say, I rethought what I thought I knew from the Forum and rested the rest of that day and all the next!  After that, my priorities definitely changed.  I chose 1 thing that I believed I HAD to do, and let the rest wait.  

Even then, I overdid in week 5 and spent 6 days in bed!  Tht finally convinced me  that this was a part of what I was going to have to live with for a while, and rested all the time, keeping in mind that people on th Forum were already talking about how much energy they were having in the months post tx!  

I KNOW it is frustrating!  However,  KEEP YOUR EYE ON THE GOAL!! You truly WILL feel so much better, and have energy, when you complete your treatment and are RID of this beast!!

Remember also, that, as well as having a finite amount of - for want of a better word - 'living waters' to draw against every day and that well empties faster than it would under normal circumstances, so plan your withdrawals, cut yourself some slack, rest, listen to your favorite music, read cartoon books and watch comedies on TV -- you get the idea.

When you have a little extra energy, store it in your energy bank, like drawing water from the well, and putting the water in a water container in the refrigerator to keep it fresh until you need it.  save the water on some days so that, when you MUST do something, you have a little extra something to use, but, when the time comes, don't use it all up, just because you have it.

You are about 6 or 7 weeks through your tx, if I calculate correctly.  keep on keping on, my dear, it won't be long now!   I see SVR in your future - and normal energy!

Sending you huge virtual hugs, and Blessings!

Pat