15 replies to this topic

[idahobeavers]

anyone else out there that is ready to just give up? i am so tired all the time,i am so tired,i feel like i am worthless. there seems to be hardly anything i can do without being just so exhausted. some days all i want to do is just sleep. b4 my dx i did it all. never relied on anyone else. now i feel like why am i even here. hell somedays its all i can do to just get dressed. ok i know u all are saying she is just feeling sorry for her self and yep you all are right. my counts are so low and it seems like no one cares,my onc said your test looks good sprycel is working see you in 3 mos. well i guess she knows best. but then why do i feel so bad!!!! oh well i guess i wil keep kicking until he takes me home. but sometimes i just want to stay in bed ,cry and forget my life

[BY196]

Hi Sarah:

I have felt the same way many times. I spent about four months mostly in bed, only able to do the absolute minimum for my family. (I have three kids, including a toddler.) I was so lightheaded when up and around that I had to ration time doing things like taking a bath and be sure I could lie down afterward. I felt really worthless and useless. I used to say, only half joking, that I was praying for my sweet release.

It was hard, being so low-energy, but I decided that I needed to figure out if there was anything I could do to feel better. (This despite being told by many people that of course I would feel like this because I have cancer.) I found my way to an endocrinologist with experience treating patients on TKI therapy, and although lab work showed my thyroid hormones still in normal range (though at the low end) he prescribed Synthroid. I am feeling significantly better. It is not perfect, and I still have lower-energy times (like today!) Maybe there is something like this that can help you. I know you have low counts from your other posts so it's possible your body will start to rebuild on its own and that will help you feel better.

In the meantime, don't be hard on yourself. Like you, I did everything before dx. I had to learn to be OK with lying in bed and watching funny shows on Netflix. (This was really the only thing that saved me during the worst period.) I highly recommend a daily dose of laughter. I have watched every 30 Rock, Parks and Recreation, The Office and Larry Sanders many times over.

Hang in there!

Beth

[mariebow]

Sarah, I hate you feel that way,  I was very tired and drained before my dx, being used to go shopping with my daughters, and just on the go, and then all of a sudden, too tired to go anywhere.  And now I have been nursing a bruised rib for going on 8 weeks, because the muscles around them got enflamed, so after finally after three weeks and a strong burning shot, the inflammation finally lifted, but left the rib being so sore and tender, where I could not really clean up, or go out, went to church a couple of times, but when I got back home, so sore had to go to bed.  But I believe God will make a way for me.  And I do not want you to give up.  Hold on a little longer, do you have family members around you?

[jrsboo]

Dear Sarah,

You are NOT feeling sorry for yourself.  You are adjusting to an extremely strong drug regiment that has a laundry list of side effects, all of which affect each person differently.  The overwhelming fatigue is normal.  It is expected.  It SUCKS. 

I spent the first 6 months holding down my couch from floating up in the air (I spent a lot of time on the couch) watching wedding dress shows ad nauseum, because if I fell asleep or zoned out, when I woke up they were still trying on pretty white dresses.  And I was (am) an attorney with her own law practice.  Very very difficult to take that much time off.

Even now, I must budget my time and energy very very carefully.  I, too, was an energizer bunny person.  It is gut wrenching to feel so low all the time.  I can now only work about 1 hour a day. 

Eventually my body has stabilized somewhat.  I am extremely lucky that I have the onc that I do.  She is completely sympathetic and acknowledges that my body is have a rougher than normal reaction, that I am now made of spun sugar, and everything hurts me or has a bizarre side effect.

I found some comfort in looking up how to live with a chronic disease on this website: http://www.alpinegui...IC ILLNESS.html

Don't despair Sarah.  There is a faint but definite light at the end of the tunnel.  Please let us (me) know if there is any way we (I) can help.

Warm hugs,

Caroline

[idahobeavers]

thank you!!! nice to know some one cares ! yes i have a large group of friends and kids. but sometimes i feel like they forget moms sick .then other times i feel like they are smothering me. none of them really want to know how i truly am. they dont like to hear i am down,depresed or scared. i am also living with a sweet man. he does all he can ,cooks,cleans,etc. but i am the one who is suppose to be doing it!!! dang it . i know i cant but well thats how i was raised. b4 my husband of 36 years passed it was me or nothing got done. its just harder some days than others. and i appreciate the fact all of us on here  are in the same boat at one time or another.thank you for lending me a shoulder

[CallMeLucky]

Your counts are very low, I read your other post and it seems odd to me that the doctor would not see you again for 3 months with platelets in the 40's.  Your red count is low and likely why you are so tired, you are not complaining, you legitimately have an issue.  If it were me and the doctor was not willing to help, I would look at getting a second opinion.  Spyrcel is very powerful and you are on 100mg.  What was your last FISH and/or PCR?  It seems like you might be a candidate for lower dosage.

[Lynne D]

Sarah

I think most of us know how you are feeling. I'm sorry you feel so lousy but I can totally relate. I was on Gleevec for 4.5 years and it destroyed my quality of life. I went on Tasigna but it was not good either. Back to Tasigna and now I am on Sprycel. When I started Sprycel it was very rough. I fly out once a year to Dr. Druker and we discussed dosage. He was not at all afraid of playing with the dosage for me. I have never been PCRU but when I am on the meds my counts are steady. We lowered my Sprycel to 50mg and my PCR has never been lower. You can go to www.nationalcmlsociety.org and submit a question to the experts. The experts include Dr. Mauro from OHSU (helped develop Gleevec) Dr. Cortez from MD Anderson. These are the best of the best. I agree with Call Me Lucky that 3 months is too long to wait for another appointment. I spent a better part of my Gleevec years in bed and the beginning of Sprycel, but now at 50 I am doing so much better. Good luck and you are NOT alone and you are NOT feeling sorry for yourself. Here is a really great blog I came across and after 7 years made my family read it and it is a great metaphor. http://www.butyoudon...ne-miserandino/

Feel better,

Lynne

[Judy2]

Hi Lynne and Sarah,

Lynne, thanks for the link to "The Spoon Theory" beautifully said. Sarah, I hope this link helps you and I hope it helps to know you are not alone. That is one of the great things about this site, we know we have a place where people truly understand how we feel and somehow that makes things just a little easier.

Judy

[Aussiegirl]

Your not alone Sarah I to feel like packing it in and stopping the meds and let nature take its course but I think quickly what that would do to my kids and grandkids. I have literally spent the last 2 years in bed due to the fatigue, nausea muscle cramps etc. My life is TV and Facebook since I am to tired to leave the house. I try to keep a stiff upper lip and not let on how bad I feel. What keeps me going is my 8 year old granddaughter was laying next to me one night and she asked me grandma will you be alive in 14 years and I said I hope so why and she replied because I am getting married than and I want you to be there. That was when I decided I have no choice I have to take the poison as I commonly refer to it as I want to be there to. You have to look to the future and find that one thing to keep you going. Hang in there someone needs you.

[Happycat]

Sarah,

I'm concerned by what you are saying about how you feel. If you can't do self-care without feeling tired, that's a problem. If you don't have energy to get dressed, take a shower, style your hair, make yourself breakfast,etc., then you should see your doctor.

Have you had your iron checked, too?  You may need a transfusion. Others on here have dealt with that, so they can tell you more.  It's amazing what low iron can do to you. I had a woman at work just zonk out on me, almost like a seizure, just because of low iron. It can cause heart problems, too. 

Don't be shy about calling your onc and insisting on being seen if you are really feeling that bad. He (or she) is there to provide you with care.

My other suggestion is to take someone with you, preferably someone who has seen you often, knows what you could do before, and can tell doctor what is going on when you are just too wiped out to argue.  When we are feeling bad, we are not always our best advocate, so it can be useful to take someone with you who will speak up.  Just make sure you take someone good at it, my dh is pretty lousy at it.

Hope you are feeling better soon,

Traci

[wallystl]

Hi Sarah:

Interesting that only women have responded to your query.

From a mans perspective, if it matters.  I to have struggled with "sides" for almost 3 yrs since dx.  I've moved through all of the FDA approved TKI's & am on a trial drug now.  My most significant issues are extreme fatigue, leg pain.  Fatigue I'm told is caused in part by my disease in part by the Chemo.  Sadly until I got a clue about managing my day I had side effects from my side effects:  When I was over extended, tried to do to much and became overly exhausted, I would get angry, short, rude & down right hostile.  I've always been a type A guy.  Never complain, never explain.  This CML has turned my life upside down & like you sometimes I get so bummed out that I want to stop my meds & let nature run its course.

I've learned that I need to constantly monitor my energy level and simply have the good sense to get out of whatever I'm into when I begin to crash.  I can literally be sitting in the backyard of a friends house attending a BBQ & over a period of about 5 to 10 minutes completely crash.  I get nervous, almost in a panic. So, when I feel that crash coming I don't fool around, I leave.  Get home, get some sleep, usually 2 hours minimum.  Through this type of management I've gotten to where I can pretty much have 2 or 3 periods of 2 to 3 hours each day of "normal" activities.  I no longer run on a 24 hour clock,  I go when I can, sleep when I need to no matter the time of day or night. The key for me  is to get out early when I feel things heading south.

Keep on trying to get ahold of your life again.  I'm pulling for you!

Wally

[Susan61]

Hi Sarah:  I was not up on how your counts were running, but I saw Lucky's response to you.  If your doctor is not doing anything to help you, then I would seek out a second opinion.  I have been on Gleevec for 11 years, and its taken its toll on me in lots of ways.  I cannot do half of what I used to do.  I just had this conversation with my husband yesterday.  I go out to do some things, and I have to come home and rest.  I have come to accept this way of life by thinking that at least I still have a life to be with my family.

     I have gotten hit with so many other health issues, that are not even related to my CML.  I have friends and family who totally do not understand.  They think that because I have been on my TKI for 11 years, and been living with CML for almost 14 years that I should be just fine and be doing all sorts of things.  They do not understand how it works, and think I am out of the woods and should go on with life like before.

   Its an effort to keep up with my home like I always did.  I used to work a 40 hour work week, and come home and go out and cut my grass on my half acre of property.  Then go in the house and get dinner going, and even do the laundry before I went to bed.  Weekends I would do all my cleaning and shopping etc. etc.  That woman is gone now, and my husband Gary is great about everything.  He just tells me to do what I can, and if it does not get done then there is always tomorrow, and if tomorrow is not a good day then there is always the next day.

   Do yourself a favor, and just go see another doctor to be sure your getting the right treatment.  I hope your doing better since everyone has shared their experience with you, and know your not alone.

  There is always somebody here to listen and share with you.

Susan

[Katiedid]

Just wanted to let you know I hear ya!!!! My husband says I'm on the injured reserve list!! : ) 

[idahobeavers]

thank you all. i have been seen at ohsu and i have emailed dr.mauro my tests. i am hoping one day to hear from him. i try to do as you all do. if i need a nap i take one. i get up in a hour. in the morning sometimes i will go back to bed. i try to do as my body wants. its just some people still think i am not that sick and if i try to talk to them all i get is well the med is working ,you are fighting it,ok change subject. it is just so darn annoying. so you all are lucky i vent and cry to you. this board has been a saver for me. thank you all

[pamsouth]

Susan, Thanks for sharing your journey, I appreciate your post.  Thinking of you and sending hugs xoxo PamSouth

[lala]

Hi.....wow...I just read the spoon theory.  Everyone should read it.  It is so good.  I just had my husband read it....and I have had cml for 6 years!  Even though I am doing well, I still live this every day.  How will I use my spoons?  A big thank you for sharing this story.  Some in my extended family think I should still have all the parties....at least, take your turn, I have been told.  Now, I no longer take my turn.  I am not willing to use my spoons for that!!!!  Wow!  What a great way to think of it.  I just told my husband, when he pops in the car to go to McDonalds for coffee, I think, wow, that would be so nice to be able to do.....Again, don't want to use a spoon for that!!!!  Love this analogy...thank you! 

Sarah, I am sorry you feel so low.  I hope you rebound soon.  Your low counts must have a lot to do with it....I agree with the others....get some help from the docs.  YOU ARE WORTH IT!!!!! 

I appreciated everyone's postings.....we all need to hang in there!!!!!  . Thanks! 

~Lala