Thank you for your thoughts and prayers!
May God bless you as you continue to bless others,
Morning Glory
I do remember you're untreated and that's why I mentioned that even post TX I am not keeping to together very well. (I was the same pre-TX).
I hope your daughter gets better, for all of your sakes. I have only a tiny idea of what you are going through. One of my daughters came to us when she was 15 (we adopted her when she was 19) because her mother was unable to keep it together. But the energy for a seven year old is another thing altogether.
I understand your strugge.I believe God understands our feelings and wants us to take care of ourselves, so don't feel guilty when you feel "selfish." You're just being human.
I'll keep you all in my prayers.
May the peace of Christ be with you.
Reminder - I'm not doing any and have not done any treatment(s) for my Hep C...
Without God I would be a total mess, for sure!!!
I didn't "volunteer" to take our granddaughter, because of how tired I was all the time. But everyone said it "was the right thing to do" for her sake. I know she is better off with us... but I'm not. I don't mean to sound selfish. I struggle with my feelings on this often.
So... I continue to trust God and his plan, and pray for my daughter to get it together.
Wow, my hat's off to you.
I have two daughters away in college and I couldn't even deal with them while I was on TX. I was so depressed and mean and furious and out of control that I finally had to get them my husband to deal with them on problems. I would just blast them away with no concern for realilty. I was a total "Bia" as the kids use to say.
Post TX I'm no so horribly mean and out of control, but I KNOW I don't have what it takes for a young one. But we do what we have to do, don't we? Your grandaughter is blessed to have you there for her. What a wonderful thing you are doing,
Be strong and may God be with you on this walk.
THANK YOU, so very much for all the comments/responses... it means so much to me. I know you all understand when others don't or can't.
I have read these posts almost DAILY and don't feel so alone in this whole Hep C fatigue. Besides with the "Foggy Brain" - I tend to forget what you all have said.
I really miss the ability to "enjoy" all the things I use to. It helps to know I'm not alone in this.
On top of it all, I have a 7 year old granddaughter living with us - so my energy is used up so much faster. I love her, but it is hard to "raise" another child at my age and to deal with the Hep C fatigue, too.
Love and blessing to all!
I could not have explained it any better..."exhausted to the bone" is exactly what I feel like when I don't get the enormous amount of rest my body requires. It is extremely hard to describe this kind of fatigue to your family. When I feel depressed I feel overwhelmed and feel like crying and feeling so negative about how my life has changed which is exhausting more in an emotional way. It is a different type of fatigue. I feel we all fight 2 types of fatigue with this virus whether you have treated or not. As all my docotrs have said the fatigue causes depression. I am thankful for each day and I have to continue to have faith that the mental fatigue won't steal the energy I do have. I am thankful that this forum enables us to share with others who really know what we go through.
Blessings to all!
proud48
Morning Glory --- Depression and Fatigue --- Difference?
I think they might be very hard to tell apart..
Depression is MELANCHOLY - SAD - Feeling sorry for everything - looking at everything bleakly --- which causes you to feel fatigued and heavy. Or just a total disinterest in the world - a separation..
Fatigue on the other hand makes you freaking unable to do anything no matter how much you want to.. Which can lead to depression..
But it doesn't necessarily mean it will --- it just can ---- because it is very sad to not have the ability to do things that you want to.
Now - depression is a frame of mind that can affect your physical world... And Fatigue is a physical issue which can affect your mental world
Hugs
Fatigue
If I get to fatigued it can lead to an emotional breakdown. It is hard to tell what comes first sometimes, esp. with the fog. When I have hit a bad depression, crying a lot, it seems to correlate with my low blood counts. I scared my Husband when I started crying at the bank because he wanted to wait to open a new account for our girls. I just felt I needed to lay down and had to get out of those bright fluorescent lights. He was afraid to take me anywhere for a while.
I also get depressed because I can't do the things I used to. Like run or go out in the sun. I am one of the unfortunate ones that gained 25 #'s on TX. Add to that the riba rash, parched dry mouth, I feel uncomfortable in my own skin. I stayed home from work for about a week and I have been OK'd for SDI for 1yr. but I went back to work because I didn't like hanging out with myself. To much time to itch & scratch and layer myself with so much lotion that it looks like I am glazed and confused.
I am practicing for my Zombie outfit for Halloween. It's not to hard to get into character.
I just switched from Paxil to Prozac because of the bloated Zombie effect that I was clearly being typecast for. Anyone have a favorite AD?? I feel so crummy its hard to tell if they are working.
Take good care of yourself,
Connie.
I have not started the treatment either I have had the dragon over 10 yrs I have my check up and the doc says that I can decide if I want to or not she thinks that I would be a good candidate no signs of cirroses and little scarring even though I'm stage 2 so I'll stay away from the treatment unless things change and she recommends that I treat.
to Trinity 4
I hope and pray that you kick the dragon in the "you no what" please keep posting so that I and the rest know how your doing and we can cheer you on and encourage you.
As portann mentioned, I am not & haven't been on any treatments.
I will answer your questions though:
> do you have dull aches on your right side - yes, and sometimes it seems I notice them when I'm stressing, or change positions from lying down to sitting up or visa-versa... or for no reason at all. It isn't constant, though. It just makes me wonder if things are "getting worst".
> do you have trouble sleeping - yes, I've been told it is my age, 51 (post-menopause)
> do you find that you suffer from stiffness after sitting along period of time - sometimes, age, again?
It is hard to know if it is age-related or Hep c. Some people blame age and some Hep c.
For stress - I do take a 1/4 - 1/2 tab (.25 - .50 mg) of Ativan once in a while, when things are really getting to me. Maybe two or three times a month. Otherwise I try to deal with it for the most part.
Thank you for sharing about your grand baby, it give me some reassurance. I know I will tell them, just waiting for the right time, I guess (ha-ha).
I don't know how I would handle the dating part - probably much like you... not worth the "stress" of rejection.
I have extreme fatigue also but I can tell the difference between an emotional drop to the basement and a physical one. I do become irritable the more tired I am but if my body allows me to sleep (any sleep) I don't wake up feeling desperate or helpless. I still feel exhaused to the bone but functional. Perhaps having to work has forced me to deal with tx this way. First twelve weeks were horrible, then, either my body became accustomed to the drugs or I accepted my emotional status for the next 36 wks. When I found out I had to treat 72 wks, yeah, I was angry and depressed but I knew I couldn't keep that frame of mind for the duration of tx so again, acceptance or just too tired to work myself up into a state of dispair. I do try very hard to keep my emotions balanced.
Hi Sad,
Morning Glory is not on interferon/ribavirin treatment, as she mentioned but I assumed you are.
In what week of treatment are you in currently and is it SOC or a trial? Side effects can vary so much among people treating and also for each person at different phases. I had so much fatigue - though fatifue is hardly the word for it - at one stage, I simply didn't have the energy to get depressed if I'd had to.
sorry for all the questions but I have to ask while it is on my mind or brain fog will set in...
I also have a grandbaby (18 months) and my daughter and her husband have no problem bringing her around, because of the fatique and I still work I don't spend as much time as I would like and I have yet to keep her all night. Being single for the last 10 years has not been easy for me but when I decide maybe this is the right one and tell him the situation then it seems as though they distance themselves so instead of going thru the hurt of not being accepted I just don't date. Tell your children what is going on with you, trust me they will understand and be there for you. My daughter and I don't talk about it often but I feel we have become closer (sometimes I think she thinks she is the mother)
question; do you have dull aches on your right side, do you have trouble sleeping, and do you find that you suffer from stiffnes after sitting along period of time.
I reread your comments from yesterday's post - BRAIN FOG, oh my gosh, that is so frustrating! I was so afraid I was at the beginning of dementia, as well... until I found out that is a part of Hep C, through reading stuff on MedHelp. In the past I may not have been the "brightest bulb in the box", but at least I was a bulb... now I sometimes feel like a night light (ha-ha).
Grocery shopping *****, too. Even though I make a list, I find myself "wandering" around and have to remind myself to stay focused. It takes me longer to shop and to make decisions! Do you experience this?
Do you attend a large or small church? Was your husband "embarrassed"?
I have other questions - which I'll ask when I can remember them...
I reread your post from yesterday and wanted to comment on it. I agree with "everybody does not understand so you have to keep this to yourself". I have only told two friends, my brother, sister and my counselor. I have been seriously considering telling my 4 grown children - mostly because of the fatigue, which keeps me from doing the things I used to have the energy for. I am afraid they will "worry" too much... besides I have a grand baby and I don't want to cause them any concern.
I can't imagine being single and having to think about that, too! My husband understands to a point.
Thanks for your comments you have lifted me up mentally and spirtually and as this day goes along I will tell myself this is a GOOD DAY while thinking about the morning glorys that I used to see as child .....SMILE
Your responses are so helpful. It is comforting know I'm not imagining my fatigue, depressed or being "lazy". It is hard to except the lack of energy though. I have tried to figure out how to work with the fatigue, mainly by taking a nap each day. This has helped some, along with pacing myself throughout the day.
I don't have anyone, with hep c, to talk specifically about what I'm going through. So I appreciate your taking the time to answer my question...
sad714 - I'm married.
goosenbee - I remember them as a child too, growing along our fence. I loved seeing them and was so fascinated.
Speaking of brain fog, I got mised up and attributed sad714's comment about a secret to morning glory. Sorry, but that it completely typical of what I do all the time!
PS -- Morning glory, I love your user name. When I was a child we had beautiful morning glory vines growing all around and over our carport. It also has a lovely spiritual note to it...
I'm so sorry you are having to deal with this. You have a right to feel sorry for yourself, and sadness is surely part of adjusting to an altered life and the limitations of chronic illness.
The saddest part of your story, to me, is that is feels like a secret. That is so tragic and reminds me of some friends I lost to AIDS many years ago. Maybe that experience influenced me, but from early on, I decided not to hide my illness. I wanted everyone to know what was going on -- why I was functioning so poorly, why I left my job, almost disappeared from life for 48 weeks, etc. I wrote a letter to my colleagues, students, my church (my husband is a pastor), my family, etc, and gave them some basic info to help them understand the illness and how remote is the possibility that they could catch it from me. I decided that how I contracted the disease was noone's business. If anyone has shunned me because of it, then we both were probably better off without each other. So far, if anyone has cut me out I haven't noticed or cared! And I have found many people (some of the most unlikely ones) have supported and comforted me on the journey.
We all deal with this in our own way, and my way certainly isn't for everyone. I wish you wisdom and courage as you move forward. Keep talking, reach out to as many people as you can, take very good care of yourself, cut yourself a lot of slack, rest and renew whenever you can.
Peace be with you, morning glory.
we have been given a difficult situation to deal with there is no none cure for this thing and everybody does not understand so you have to keep this to yourself ( besides your family and a few close friends) so for me its like having a big secret. I get depressed when I think about my future and I how I've been deat these cards then I start feeling sorry for myself I will just start crying.
when I'm fatiqued my body starts to ache, can't think straight thats when I know its time to rest.
Are either of you single if so how do you deal with it.
Depression has other symptoms beyond fatigue such as sleep problems, changes in appetite and feelings of melancholy.
I hear what you're saying. It can be hard sometimes to tell the difference. Here's my tatke: When I am depressed, I am always fatigued. When I am fatigued, I may or may not be depressed. I've had bouts of clinical depression all my life and have been (and may always be) on "prophylactic" meds . Fatigue has always been part of it.
But for several years before I was diagnosed with HCV the fatigue got profound -- I slept and slept and became unable to perform my job (college professor). I also just couldn't think straight. I was afraid I had early dementia. I attributed it to depression and worked with my doc to add meds to improve my alertness, etc. (Adderall and others). They helped, but I still was wiped out and confused all the time. After the HCV diagnosis, it was almost a relief to know that at least some it was from virus fighting and not depression.
Like you, my liver was apparently in good shape (functions very slightly elevated) after more than 30 years, but I wanted to get rid of the monster that was slowly draining me. I knew that treatment would be tougher because of depression and it was. I was sick as a dog, completely brain fogged, slept tons during the 48 weeks and had no energy. But about half way through the "real" depression kicked in and I could tell the difference.
To me, depression is despair -- a profound loss of hope -- hope that anything will ever be better than it is, hope that life can have meaning, hope for peace instead of anxiety. I began to cry a lot, get freaked out when I was alone, the whole works. My shrink increased my antidepressant, my nurse prac lowered my ribavirin and Interferon dose slightly, my husband, family, friends rallied round, and I slowly climbed back up.
I am 10-months post TX now. At 12 weeks post, the virus had returned. I was crushed, but I have to accept that 50-50 is exactly that, and I was just in the wrong 50, I feel better now, but the fatigue is about the same as pre-TX and I still get depressed. And yes, it is still hard to tell which is which. But if I can sleep a lot of still be moderately function when I'm awake, I consider that fatigue. When I am not functional when awake, that's depression.
I went on medical leave before TX and then on permanent disability during it. So, I lost my beloved career, much of my energy, etc. But I don't hurt, I have disability payments and a loving support group. I am a very lucky woman.
Best wishes to you,
goosenbee