Fatigue. It's beginning to impact my life.
I asked my oncologist what I could do about it, and he just smiled and said "rest when you're tired." I DO that, but I don't WANT to lay down every day! My 7-year-old grandson slept over Friday night and my plan was to have my granddaughter join us to do something fun after her swim-meet Saturday. But by the time my son came to drop her off, I had to ask him to take them both home because I was just dead tired. I don't want to be like this!!
Today I pushed myself, and after going to my grandson's basketball game, I took both kids to Friendly's for a late lunch and then to the movies to see Avatar. That's pretty sedentary activities, and yet I am POOPED now.
I've been told to expect to be in chemo most of the rest of my life, with short remissions if I get lucky, but chemo is going to be a part of my life long-term. I know some of you have been in treatment for years. Will I fight fatigue the rest of my life? Do most of you just push through it and fight it? I still work about 30 hours a week at my business, and I want to have the energy left to make memories for my grandkids and to LIVE full-on the time I have left. How do you balance trying to live with gusto, with the reality of not being as strong as you were?
Comments
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Fatigue
Linda...
How's your hemaglobin? When my red count goes down, so does my energy level. I am still on the Carboplatin and Taxol, so I don't know which drug is responsible for zapping my hemaglobin. When my red count gets to 8, they send me across the street to the hospital for a couple of units of blood. It really perks me up!
Carlene0 -
Adjusting
Dearest Linda,
Oh how I know this balancing act well and have no real answer. I sometimes push through it and other times just give in. I do take iron twice a day to help make sure my hemoglobin isn't below 9 and funny how your body does get use those numbers.
I however took disability retirement from my job. Randy asked me if I wanted to put my energy into work or living. That was quite a jarring question and the answer is different for each of us. I chose to retire and am glad I did. I do miss the people but cant imagine how I would have run the accounting unit with the fatigue and chemo brain. :-)
My life has changed some in the things I do for enjoyment also, use to ski and snowshoe in the winter, now only occasionally; last year I never got out riding but did do a lot of fishing. So we adjust and live life to the fullest inspite of all the fatigue and other issues cancer hands us. I wish I could give you more positive information.. like it gets better... but for me on chemo for seven years it has whiddled little bits of what I could do away but amongst it all I am still here.
Hugs ♥ Prayers Bonnie0 -
Hi Linda
Wow just reading about all of the things you manage to pack into your life has exhaused me. You are amazing. The taxol completely wipes me out and all I can do (I have no other choice my body is speaking for me) is to be horizontal. I am not not working either because my cancer originated by me having lots of plueral effusions and I couldn't breathe. So I am home resting most days. Someone on this forum did give me some advice. The days/weeks you feel tired/ill take it as it is and pamper yourself. Don't feel guilty just listen to your body - you have earned that right. As soon as you are feeling stronger then you can tackle the jobs or enjoyable outings with your family then. I have struggled with the guilt of "just doing nothing" whilst my husband and son cook dinner do the housework etc. But not only do I not have a choice (I am too tired)its their turn to do something for you (fact is they will probably feel good cos they are actually doing something to help you)
In fact it is 1.10pm and I am sat in the lounge with the gas fire on chatting online. I am not dressed (but am planning on having a lovely bubble bath later) I am now going to have a lovely lunch (cheese sandwiches mmm) I do feel very lazy but I have just gotton over a week from hell with chemo after-effects. So I feel it is just part of my life now.
I am sorry to hear that this is your life now, me too. My cancer is not curable but can be managed with chemo so that is why my attitude is the way it is.
Hope you soon get your mojo back, much love Tina xxxxx0 -
working
As a Mom to two young kids I decided to give up my job. I would rest while they were in school. Now that I am on Doxil indefinately I may soon be facing the same issues as you. I don't know what the balance will be and hopefully I will be able to push through it. What's the alternative? Are the 30 hours a week at work for financial reasons or just to keep your mind busy? When I was diagnosed I decided my energy was going toward taking care of my two young kids. I do miss work though, I won't lie.0 -
Choices
Yes, fatigue is my problem too. I have to make choices daily. I choose to lay down and rest and read and sometimes sleep two hours every afternoon. That gives me the energy to cook supper. Going out or doing something like the movies or church requires rest time before. I just plan ahean. I am retired so that helps. I did get some Energizing Iron (at health food store) and I do think that helps with the RBC's and energy but my oncologist keeps warning me to not take too much. Won't give me a reason. I take it anyway. Grocery shopping is the most tiring thing I do.
Play time with grandchildren as young as yours could be shortened. I am thinking quality rather than quanity. Maybe only one activity rather than a whole day of it.
I never took any chemo every week.... my low dose Taxol was every 3 weeks. I know you must be tired!
Saundra0 -
I am trying to 'transition' my business to my sons & staff.saundra said:Choices
Yes, fatigue is my problem too. I have to make choices daily. I choose to lay down and rest and read and sometimes sleep two hours every afternoon. That gives me the energy to cook supper. Going out or doing something like the movies or church requires rest time before. I just plan ahean. I am retired so that helps. I did get some Energizing Iron (at health food store) and I do think that helps with the RBC's and energy but my oncologist keeps warning me to not take too much. Won't give me a reason. I take it anyway. Grocery shopping is the most tiring thing I do.
Play time with grandchildren as young as yours could be shortened. I am thinking quality rather than quanity. Maybe only one activity rather than a whole day of it.
I never took any chemo every week.... my low dose Taxol was every 3 weeks. I know you must be tired!
Saundra
Prior to my cancer diagnosis, I worked 60 hours a week and went to the gym 6 days a week and saw my grandkids every day, so in reality I have really cut back on everything. I have my own business (www.procopiofundraising.com) and a lot of contractural responsibilities and responsibilities to my 8 employees and 22 clients, and I really have made a lot of efforts to promote and train people so that I have someone else who knows how to do everything I once did. I want my successful little business to survive my cancer and be an income-generator for my family after I am gone, so I can know that they will never have financial worries. All of the transition paperwork and TRAINING people is actually much harder for me than doing the work myself. But I do have a plan to ease out of formal control as head of the company by January 1, 2011. I agree that WORKING shouldn't be a high priority right now, but I don't want to throw away the business I worked so hard to build if there is any way it can outlive me.
The thing is, statistically, and I know that I am not a statistic, but statistically after a recurrance of my rare UPSC cancer, the tables predict that I have 15 months. 15 months, and 2 of those precious 15 have already passed. I believe I will greatly exceed those stats and live much longer; I'm counting on it.
But still, somehow I need to also have the energy to make memories for my beautiful grandchildren and get each of my loved ones in a strong emotional place with a support system that replaces any dependencies they currently have in me. It is so hard to balance the RESPONSIBILITIES with the 'BUCKET LIST' things that really matter,... and this fatigue keeps butting into my plans and hopes by eating up precious hours I don't want to spent lying down.
My iron levels have been good. They do regular nutrition-type testing of my blood to see what is truly affecting my RBC & platelets. My RBC, WBC, & platelets are always low, but acceptable to get chemo, as long as I get the 3 Nuepogens each time afterwards, and I always ask about taking iron and am told not to yet that my iron is good. I had 3 blood transfusions during my initial carbo/taxol protocol in 2008/2009, but none so far since my recurrance. I never minded resting during my initial treatment protocol because I was "going for the cure" then and rest was a part of the Battle Plan.
Now I'm 'managing my cancer' and they are no longer holding out the hope of a cure. I guess I want what I can't have. I want to be strong like I have always been and able to do it all and have it all. I have been so blessed always, all of my life, never ever sick until now. I guess I have to learn not to be so greedy and open my heart to acceptance and compromise. That's hard. I honestly thought that I had made my peace with this, that I was handling this with grace. Maybe I have some growing to do yet. Thanks, everyone.0 -
You are amazinglindaprocopio said:I am trying to 'transition' my business to my sons & staff.
Prior to my cancer diagnosis, I worked 60 hours a week and went to the gym 6 days a week and saw my grandkids every day, so in reality I have really cut back on everything. I have my own business (www.procopiofundraising.com) and a lot of contractural responsibilities and responsibilities to my 8 employees and 22 clients, and I really have made a lot of efforts to promote and train people so that I have someone else who knows how to do everything I once did. I want my successful little business to survive my cancer and be an income-generator for my family after I am gone, so I can know that they will never have financial worries. All of the transition paperwork and TRAINING people is actually much harder for me than doing the work myself. But I do have a plan to ease out of formal control as head of the company by January 1, 2011. I agree that WORKING shouldn't be a high priority right now, but I don't want to throw away the business I worked so hard to build if there is any way it can outlive me.
The thing is, statistically, and I know that I am not a statistic, but statistically after a recurrance of my rare UPSC cancer, the tables predict that I have 15 months. 15 months, and 2 of those precious 15 have already passed. I believe I will greatly exceed those stats and live much longer; I'm counting on it.
But still, somehow I need to also have the energy to make memories for my beautiful grandchildren and get each of my loved ones in a strong emotional place with a support system that replaces any dependencies they currently have in me. It is so hard to balance the RESPONSIBILITIES with the 'BUCKET LIST' things that really matter,... and this fatigue keeps butting into my plans and hopes by eating up precious hours I don't want to spent lying down.
My iron levels have been good. They do regular nutrition-type testing of my blood to see what is truly affecting my RBC & platelets. My RBC, WBC, & platelets are always low, but acceptable to get chemo, as long as I get the 3 Nuepogens each time afterwards, and I always ask about taking iron and am told not to yet that my iron is good. I had 3 blood transfusions during my initial carbo/taxol protocol in 2008/2009, but none so far since my recurrance. I never minded resting during my initial treatment protocol because I was "going for the cure" then and rest was a part of the Battle Plan.
Now I'm 'managing my cancer' and they are no longer holding out the hope of a cure. I guess I want what I can't have. I want to be strong like I have always been and able to do it all and have it all. I have been so blessed always, all of my life, never ever sick until now. I guess I have to learn not to be so greedy and open my heart to acceptance and compromise. That's hard. I honestly thought that I had made my peace with this, that I was handling this with grace. Maybe I have some growing to do yet. Thanks, everyone.
Hi Linda you seem such a strong and courageous woman. I really admire your attitude towards the future you are carving out for your family - you are truely amazing. You are entitled to feel angry and frustrated but you have done so much already with your family that those memories will always be there.
Hang in there and I'm sure you'll far exceed those 15 months - your gusty attitude will get you through.
Much love Tina xxx0 -
fatigue
Linda, Linda, Linda,
It is so hard to make adjustments isn't it? I too have been a very active person. I resigned my position in January 2008 the month of my surgery. I was our church's administrator and was very very busy and that can spill into the home life. It did for me. I still volunteer but that is at my convenience. ☺
Plus four adult children with two married and at that time 2 grandchildren and now two more.
After my first chemo round and then remission (short that is was) I signed up for church softball 2009 and played the first game. Needless to say I pulled something in my side and did not play anymore last year! LOL
I was able to go on the bike trail and walk and even jog some, but this time around - another story. I too am tired and have taken naps in the day if I do not sleep well at night. This is all without working. And remember, the more chemo the harder on the body. I don't know how long it takes for our bodies to go back to "normal" if they ever do. But in our case, we definitely have not had time to even get close to our bodies healing from the first bout.
My onc too said I am chronic and will be on some form of chemo the rest of my life. But I take man's word in stride and continue to ask for a complete healing of my body.
Another funny thing....I bought two workout tapes last month thinking I needed to work out some since even if I felt like going on the bike trail it is way too cold for me!! LOL I bought Dancing with the Stars CD's and I got tired just watching them!!
I will be 54 this month and my mind is still 25 (even with Chemo brain)! I love life always have and always will. That is me, takes a lot to get me down. My strength does come from the Lord and from all the prayer warriors lifting me before my Lord.
Don't know if this helped, as I read back over I may be rambling!!!! But I did have chemo yesterday. My cisplatin was changed to carboplatin as I am now allergic to cis. I did not get sick this time PTL!!
Living for Him,
Libby0 -
Dear Linda
I am also an Energizer Bunny type, but I find the fatique from the carbo/taxol totally knocks me out. I think you have to give in to that fatique at times so you can have the energy to do the really important things. Prioritizing what is most important to us and finding a balance seems to be another whole challenge.
(((HUGS))) Maria0 -
Thank youlindaprocopio said:I am trying to 'transition' my business to my sons & staff.
Prior to my cancer diagnosis, I worked 60 hours a week and went to the gym 6 days a week and saw my grandkids every day, so in reality I have really cut back on everything. I have my own business (www.procopiofundraising.com) and a lot of contractural responsibilities and responsibilities to my 8 employees and 22 clients, and I really have made a lot of efforts to promote and train people so that I have someone else who knows how to do everything I once did. I want my successful little business to survive my cancer and be an income-generator for my family after I am gone, so I can know that they will never have financial worries. All of the transition paperwork and TRAINING people is actually much harder for me than doing the work myself. But I do have a plan to ease out of formal control as head of the company by January 1, 2011. I agree that WORKING shouldn't be a high priority right now, but I don't want to throw away the business I worked so hard to build if there is any way it can outlive me.
The thing is, statistically, and I know that I am not a statistic, but statistically after a recurrance of my rare UPSC cancer, the tables predict that I have 15 months. 15 months, and 2 of those precious 15 have already passed. I believe I will greatly exceed those stats and live much longer; I'm counting on it.
But still, somehow I need to also have the energy to make memories for my beautiful grandchildren and get each of my loved ones in a strong emotional place with a support system that replaces any dependencies they currently have in me. It is so hard to balance the RESPONSIBILITIES with the 'BUCKET LIST' things that really matter,... and this fatigue keeps butting into my plans and hopes by eating up precious hours I don't want to spent lying down.
My iron levels have been good. They do regular nutrition-type testing of my blood to see what is truly affecting my RBC & platelets. My RBC, WBC, & platelets are always low, but acceptable to get chemo, as long as I get the 3 Nuepogens each time afterwards, and I always ask about taking iron and am told not to yet that my iron is good. I had 3 blood transfusions during my initial carbo/taxol protocol in 2008/2009, but none so far since my recurrance. I never minded resting during my initial treatment protocol because I was "going for the cure" then and rest was a part of the Battle Plan.
Now I'm 'managing my cancer' and they are no longer holding out the hope of a cure. I guess I want what I can't have. I want to be strong like I have always been and able to do it all and have it all. I have been so blessed always, all of my life, never ever sick until now. I guess I have to learn not to be so greedy and open my heart to acceptance and compromise. That's hard. I honestly thought that I had made my peace with this, that I was handling this with grace. Maybe I have some growing to do yet. Thanks, everyone.
Hi Linda,
First, love your wig! You look like you feel great!
I want to thank you for an extremely honest and vulnerable post. I think you said what most of us or many of us feel at least sometimes. I know I do. This isn't fun, this isn't easy, this isn't what we want. But we're all trying the best we can. We haven't done it before, and we'll all make mistakes.
That's why I thank you for your honesty and thank all the women here who fight this disease daily. We can hold each other up, pray for each other, and be vulnerable with each other. Now that's a blessing!
Marty0 -
Processinglindaprocopio said:I am trying to 'transition' my business to my sons & staff.
Prior to my cancer diagnosis, I worked 60 hours a week and went to the gym 6 days a week and saw my grandkids every day, so in reality I have really cut back on everything. I have my own business (www.procopiofundraising.com) and a lot of contractural responsibilities and responsibilities to my 8 employees and 22 clients, and I really have made a lot of efforts to promote and train people so that I have someone else who knows how to do everything I once did. I want my successful little business to survive my cancer and be an income-generator for my family after I am gone, so I can know that they will never have financial worries. All of the transition paperwork and TRAINING people is actually much harder for me than doing the work myself. But I do have a plan to ease out of formal control as head of the company by January 1, 2011. I agree that WORKING shouldn't be a high priority right now, but I don't want to throw away the business I worked so hard to build if there is any way it can outlive me.
The thing is, statistically, and I know that I am not a statistic, but statistically after a recurrance of my rare UPSC cancer, the tables predict that I have 15 months. 15 months, and 2 of those precious 15 have already passed. I believe I will greatly exceed those stats and live much longer; I'm counting on it.
But still, somehow I need to also have the energy to make memories for my beautiful grandchildren and get each of my loved ones in a strong emotional place with a support system that replaces any dependencies they currently have in me. It is so hard to balance the RESPONSIBILITIES with the 'BUCKET LIST' things that really matter,... and this fatigue keeps butting into my plans and hopes by eating up precious hours I don't want to spent lying down.
My iron levels have been good. They do regular nutrition-type testing of my blood to see what is truly affecting my RBC & platelets. My RBC, WBC, & platelets are always low, but acceptable to get chemo, as long as I get the 3 Nuepogens each time afterwards, and I always ask about taking iron and am told not to yet that my iron is good. I had 3 blood transfusions during my initial carbo/taxol protocol in 2008/2009, but none so far since my recurrance. I never minded resting during my initial treatment protocol because I was "going for the cure" then and rest was a part of the Battle Plan.
Now I'm 'managing my cancer' and they are no longer holding out the hope of a cure. I guess I want what I can't have. I want to be strong like I have always been and able to do it all and have it all. I have been so blessed always, all of my life, never ever sick until now. I guess I have to learn not to be so greedy and open my heart to acceptance and compromise. That's hard. I honestly thought that I had made my peace with this, that I was handling this with grace. Maybe I have some growing to do yet. Thanks, everyone.
Llinda, so sorry you are fatigued! My goodness you do a lot, though for a fatigued woman!!!! I can feel your strength and energy and also hear you doing some processing while you write. I love your spirit and know that you will beat all those statistics.
Take care of yourself and take it one day at a time.
hugs,
kathleen:)0 -
Dear Libby & LindaLPack said:fatigue
Linda, Linda, Linda,
It is so hard to make adjustments isn't it? I too have been a very active person. I resigned my position in January 2008 the month of my surgery. I was our church's administrator and was very very busy and that can spill into the home life. It did for me. I still volunteer but that is at my convenience. ☺
Plus four adult children with two married and at that time 2 grandchildren and now two more.
After my first chemo round and then remission (short that is was) I signed up for church softball 2009 and played the first game. Needless to say I pulled something in my side and did not play anymore last year! LOL
I was able to go on the bike trail and walk and even jog some, but this time around - another story. I too am tired and have taken naps in the day if I do not sleep well at night. This is all without working. And remember, the more chemo the harder on the body. I don't know how long it takes for our bodies to go back to "normal" if they ever do. But in our case, we definitely have not had time to even get close to our bodies healing from the first bout.
My onc too said I am chronic and will be on some form of chemo the rest of my life. But I take man's word in stride and continue to ask for a complete healing of my body.
Another funny thing....I bought two workout tapes last month thinking I needed to work out some since even if I felt like going on the bike trail it is way too cold for me!! LOL I bought Dancing with the Stars CD's and I got tired just watching them!!
I will be 54 this month and my mind is still 25 (even with Chemo brain)! I love life always have and always will. That is me, takes a lot to get me down. My strength does come from the Lord and from all the prayer warriors lifting me before my Lord.
Don't know if this helped, as I read back over I may be rambling!!!! But I did have chemo yesterday. My cisplatin was changed to carboplatin as I am now allergic to cis. I did not get sick this time PTL!!
Living for Him,
Libby
Libby you are another courageous lady who I admired greatly. I am just at the start of my journey and both yours and Linda's story humble me as last week I was feeling a little tired and sorry for myself.
I think that when we have cancer it becomes us. It is so much a part of us that everything in your life has to change and adapt. That is where I am at the moment - resloving myself to changes that I don't particulary want.I am not working because of the nature of my treatment and fatique. My hobby has virtually ceased - I am/was a runner and do not have the fitness or energy at the moment to go on.
When your live changes so dramatically it takes some time to come to terms with that on top of the fact you have this life treatening disease. Wow it really does test you as a person and I would imagine once you have undergone this transformation you are forever changed.
I am sending you both as many positive vibes as I can and I hope you keep well
Tina xx0 -
And here's the other thing that ties into this...Mwee said:Dear Linda
I am also an Energizer Bunny type, but I find the fatique from the carbo/taxol totally knocks me out. I think you have to give in to that fatique at times so you can have the energy to do the really important things. Prioritizing what is most important to us and finding a balance seems to be another whole challenge.
(((HUGS))) Maria
The other thing is that I know my HUSBAND deeply misses the 'old Linda'. He never says it; he's been wonderfully supportive, but I notice that every time we see my chemo oncologist he is asking to step up my treatments to a more aggressive chemo cocktail because he desparately wants me in remission again. During my last remission this past fall we travelled to Europe and I was strong again and able to hike up to monestaries and acropolysis's and be the energetic fun companion he fell in love with. I feel I am currently a diminished version of the old me. He took this recurrance much harder than I did, and I know he is depressed and weary of going to the clinic 4 days a week for weekly chemo & the 3 weekly Nuepogen shots. He never says anything, but I think, what will this be like for HIM, if I am lucky enough to live on for 10 years? Ahh,...this is a dark fear for me, that somehow my limping along, on and on, never really well, never really ME, will keep him from having the good life he deserves.
wow. I can't believe I actually 'said it out loud'. He's been my rock. I guess I think he deserves better than this.
Time to leave for my Nuepogen shot. Dump my load and go! sorry.
(EDIT: Now I'm back from my Nuepogen shot & editing this post: I;m so sorry for the whine; I MUST be tired to be this melodramatic. I intended to come right back and EDIT out most of this post, but I will let it stand as it does complete my whole thought process on this 'rest'- or - 'fight through the fatigue' question. Today I am fighting the fatigue and going out to lunch with my husband and his sister, then coming back to work on a playground grant proposal with an 'endangered species bat' complication of an environmental review. Today I am going to try and be ME. And if it's too exhausting to be ME, then I'll go lay down. I apologize again for all the whining. I'll knock it off now; pity party over.)
Be happy, ladies! JOY! Reach for the JOY!0 -
Its ok to feel sulkylindaprocopio said:And here's the other thing that ties into this...
The other thing is that I know my HUSBAND deeply misses the 'old Linda'. He never says it; he's been wonderfully supportive, but I notice that every time we see my chemo oncologist he is asking to step up my treatments to a more aggressive chemo cocktail because he desparately wants me in remission again. During my last remission this past fall we travelled to Europe and I was strong again and able to hike up to monestaries and acropolysis's and be the energetic fun companion he fell in love with. I feel I am currently a diminished version of the old me. He took this recurrance much harder than I did, and I know he is depressed and weary of going to the clinic 4 days a week for weekly chemo & the 3 weekly Nuepogen shots. He never says anything, but I think, what will this be like for HIM, if I am lucky enough to live on for 10 years? Ahh,...this is a dark fear for me, that somehow my limping along, on and on, never really well, never really ME, will keep him from having the good life he deserves.
wow. I can't believe I actually 'said it out loud'. He's been my rock. I guess I think he deserves better than this.
Time to leave for my Nuepogen shot. Dump my load and go! sorry.
(EDIT: Now I'm back from my Nuepogen shot & editing this post: I;m so sorry for the whine; I MUST be tired to be this melodramatic. I intended to come right back and EDIT out most of this post, but I will let it stand as it does complete my whole thought process on this 'rest'- or - 'fight through the fatigue' question. Today I am fighting the fatigue and going out to lunch with my husband and his sister, then coming back to work on a playground grant proposal with an 'endangered species bat' complication of an environmental review. Today I am going to try and be ME. And if it's too exhausting to be ME, then I'll go lay down. I apologize again for all the whining. I'll knock it off now; pity party over.)
Be happy, ladies! JOY! Reach for the JOY!
I've been feeling sorry for myself lately too and feel I have nobody to talk to. How can we unload our feelings on our friends who are going on with their lives, living without disease. Im too feel like a shadow of my former self. I look in the mirror and see an imposter staring back at me.0 -
For what it's worth.....nancy591 said:Its ok to feel sulky
I've been feeling sorry for myself lately too and feel I have nobody to talk to. How can we unload our feelings on our friends who are going on with their lives, living without disease. Im too feel like a shadow of my former self. I look in the mirror and see an imposter staring back at me.
Linda.......
You need to de-stress and REST. Many people, including some physicians, believe that stress and/or fatigue have a negative impact on your treatment.
You do not have to prove how strong you are. The fact that you are living with a recurrance of OVC is proof of that.0 -
Don't apologize!lindaprocopio said:And here's the other thing that ties into this...
The other thing is that I know my HUSBAND deeply misses the 'old Linda'. He never says it; he's been wonderfully supportive, but I notice that every time we see my chemo oncologist he is asking to step up my treatments to a more aggressive chemo cocktail because he desparately wants me in remission again. During my last remission this past fall we travelled to Europe and I was strong again and able to hike up to monestaries and acropolysis's and be the energetic fun companion he fell in love with. I feel I am currently a diminished version of the old me. He took this recurrance much harder than I did, and I know he is depressed and weary of going to the clinic 4 days a week for weekly chemo & the 3 weekly Nuepogen shots. He never says anything, but I think, what will this be like for HIM, if I am lucky enough to live on for 10 years? Ahh,...this is a dark fear for me, that somehow my limping along, on and on, never really well, never really ME, will keep him from having the good life he deserves.
wow. I can't believe I actually 'said it out loud'. He's been my rock. I guess I think he deserves better than this.
Time to leave for my Nuepogen shot. Dump my load and go! sorry.
(EDIT: Now I'm back from my Nuepogen shot & editing this post: I;m so sorry for the whine; I MUST be tired to be this melodramatic. I intended to come right back and EDIT out most of this post, but I will let it stand as it does complete my whole thought process on this 'rest'- or - 'fight through the fatigue' question. Today I am fighting the fatigue and going out to lunch with my husband and his sister, then coming back to work on a playground grant proposal with an 'endangered species bat' complication of an environmental review. Today I am going to try and be ME. And if it's too exhausting to be ME, then I'll go lay down. I apologize again for all the whining. I'll knock it off now; pity party over.)
Be happy, ladies! JOY! Reach for the JOY!
Dearest Linda,
Please don't ever apologize for whining. Sometimes we have to whine and we have the right to whine! This board is one of the few places where people understand.
Sometimes I get so tired of hearing, "You have to think positive." I guess I admire those who can always be positive about this disease, but I really think they are in la-la land sometimes! LOL
Your posts are so heartfelt and beautifully crafted and convey what many of us have thought. I think one of the hardest things to do is to let go of who we once were. I had to have serious bowel reconstruction in November and it took forever to feel halfway normal despite what my mind wanted to do. I couldn't even do Christmas at all, but had to deal.
I am better, but not perfect. My husband said, "It's nice to have my wife back again." This disease is a marriage tester!
I can certainly relate to your feelings. I now appreciate the little things, being able to do laundry and clean up the kitchen. Who would have thought it? LOL
Thank so much for sharing, you're the best.
Luv, Froggy0
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