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blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Here it is Jan 1st of a brand new year and I found myself, nearing midnight last night and this morning, wondering how to make this year different for me - physically. Because of the many side effects I have, after my bone marrow transplant, I feel very stuck in it all, from time to time. 18 years of stuck. I fully acknowledge the miracle of this long of a survivorship and am grateful for it indeed, but the unpredictability of my condition on a daily basis some days becomes tedious and hard to bear. I am a type A personality and want to find a way to 'fix' everything, including myself, and have had little success doing that to any great extent with my condition being ongoing. I opened another post awhile back that talked about being overwhelmed but it isn't that this time, it's just the nagging conditions that don't go away and leave me stuck. How to make it better? I pray for a miracle that would vastly improve my medical situation but so far, not so much. I will keep praying. Any suggestions out there on how to get 'unstuck'? Isolation due to these sudden onset conditions is a big problem but again, how to make that situation better as well? Am I whining? - don't mean to, it just gets to me sometimes, especially when the year is new and you see that full calendar of days in front of you and wish you could change it all. Will this be as good as it gets? Hmmm. Thanks for listening.

zahalene's picture
zahalene
Posts: 680
Joined: Nov 2005

I feel stuck sometimes. Not in the extreme health issues anymore, but in other ways. I have been caregiver to my parents for almost 13 years and so 'tied' to my situation as long as they need me. (We lost Mom 4 years ago, but still caring for Dad.) And it is not that I long to do something specific, it's just the awareness that I couldn't if I DID want to that grates sometimes.
So I make relatively small changes in my life when I can that help me to feel in control to some degree.
A few months ago I had Dad's house remodeled and moved in with him. It was either that or put him in a rest home. In some ways that ties me even closer to the situation, but I was able to fix up a part of the house just for 'me', which helped to make me feel as if I have my own space and place in life. I am a nest builder by nature so enjoyed the process of choosing for and arranging my area.
Now I am looking for something different to do in the new year that will belong to just 'me'. It's hard when we have these restrictions. I pray that you can find some enjoyable way to do something different this year that will make you say, 'This is MINE'. God bless.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I guess any kind of situation, whether it be physical or emotional, can confine you - make you feel stuck. I think you did a brilliant thing by moving and creating your own space even if you were in someone else's. I see how you would be restricted as well but sounds like you have your health - for the most part so at least your scope of things you can do is wider. I guess it's true that there are always some worse off then ourselves and we do need to work with what we are given and have. Are you into hobbies of any kind? Sometimes doing that or starting a new hobby - something you might even sell in time - and can do from home might be an idea for you? I am not much of a hobby type myself but maybe I should look into that idea. I like the internet and have thought about building a site but that doesnt get me out as much as I would like to. But then back to square one and unpredictability of health and so it goes. Thanks for the encouragement though Zah, hope 2009 is good to you and your Dad. He is lucky to have you. Blessings.

Eil4186's picture
Eil4186
Posts: 967
Joined: Dec 2007

Hi Blue, I'm sorry to read that you feel stuck and that you have to endure health problems on a regular basis. I know that not feeling well can really take its toll emotionally. It can tire you and drag you down. Sometimes I feel trapped by the daily restraints of work, chores, bills, and such. But I find that indulging myself with some small things that I enjoy helps.
I might sit by the fireplace and read a good book, allow a break in my diet and have a rich dessert, have a nice nap in the afternoon(I love napping). Maybe this sounds lame as a suggestion, but I guess sometimes I feel like I have many constraints on my life/time, and I want to just stop and take time.

From your post it sounds Blue like you have long-term effects from the bone marrow transplant. Have you tried consulting with a different doc. about possible treatment for the effects? Or perhaps you've already tried that. What about holistic remedies? I just think that any idea would be worth while in the hopes that it could help you feel happier.
God luck, and keep us posted on any progress, ok? Eil

Pnktopaz10
Posts: 56
Joined: Oct 2008

Hi Blueroses
I am beginning to feel as if I know you. I do understand your feeling of being stuck~and sometimes it is difficult to get beyond it. Prior to getting cancer I have had Crohn's disease for the past 30+ years and experienced the "stuck" feeling more times then I can remember. I did little things~just for me~ as Eil4186 did and once I discovered walking I listened to books on tape and walked around my basement and outside when the weather was good. Sometimes very slowly but it did help.

Do something for yourself~just for today and know that there are others who feel the same way and you are NOT ALONE! One thing that I have found is that you give of yourself on the discussion boards every day and what you are doing for the rest of us cannot be measured.
You have wisdom and humor two things that I admire in people and I do admire you! Peace and Hugs Pnktopaz10

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Thank you so much Pink for the lovely and generous words. I do find comfort in giving to the board, as we all do, and am glad to have the reciprocating relationship we all have with each other, very validating and very comforting. Validation is sometimes hard to find from those who are close to us and our doctors, not from lack of sensitivity always - just because they themselves haven't experienced what we have, personally. I do try and do little things for myself especially when it comes to napping, I used to get so down on myself for not getting much done each day but now I just take the time to sleep and when I get up I do what I need to if I am feeling alright and it can wait if I don't. Funny how laundry is still there waiting for you the next day too if you can't get to it today. Very reliable that way, laundry is, lol.

I feel as if I know you too Pink and we are so lucky to have you on our site. Big Cyber Hugs to you too Boo Boo, lol.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Thanks for the suggestions. Yes the main physical issues I have that keep me down are long term effects from the transplant, chronic fatigue big time and a damaged heart from chemo. I have good cardiologists but all that can be done at this point is to load me up with meds (that of course have side effects too - like tiredness, lol) and between the meds and my pacemaker keep the arythmias under control as much as possible. Unfortunately the arythmias will get worse over time but possible new developements in controlling them will come along before they get more debilitating than they already are - I can get very faint with them and can't stand which means cancelling my day out. Holistic is usually pretty pricey but I try and integrate as many natural foods etc as I can. The next step is surgery for the arythmia but of course it has risk so they are waiting to do that til I have no choice. I have other side effects as well but after 20 years of treatments and medications it makes sense you would have side effects. Like all of us we have our up and down times, when the year begins again it is easy to get swallowed up in the daunting number of days ahead and what they will bring. I like to think - glass half full but I can't lie that there are days when I just feel stuck. I am on many medications that I will have to take for the rest of my life and I am sure alot of my fatigue and issues come from side effects of them but what can you do. I will survive. Thanks for the helpful words. Yup I will keep you posted, thanks.

Eil4186's picture
Eil4186
Posts: 967
Joined: Dec 2007

Blue, I have been keeping up with your thread and my heart goes out to you. You are going through so much due to your cancer treatment. It is frustrating that the very treatments that can fight the cancer can in turn cause so much damage and discomfort.

I can imagine how you feel. Constant pain is so draining and it can get you really down. Keep trying to enjoy the individual moments each day. Of course your cat is a source of joy!! Time goes by so fast. Even as we say that it is hard to really comprehend how quickly the years pass...I know its hard and you have a lot to contend with, but I wish for you joy in each day. You are in my prayers that God will grant you strength, and for new treatments/cures for your heart. Peace and hugs, Eil

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Thanks for your kind words Eil and encouragement. I have felt 'stuck' before and will again, and so on and so on and so on, but I do get tremendous validation and understanding from these boards, what more can one ask for? I try and do something everyday, even if it's small when I am really bummed or unwell, and that seems to help to some degree. Your comments are appreciated. Hugs, Blueroses.

terato's picture
terato
Posts: 384
Joined: Apr 2002

Blue,

When you watch the news or read the paper, you learn about the people losing their homes, jobs, pensions, savings, and hope in general. It seems that the rest of the world is beginning to know what living on the brink of disaster is all about. At 57, I often feel that my best days are in my distant past and all I can do now is "maintain". I suppose I am luckier than many, I still have a job with health benefits, the house is paid for, and my 11-year-old car still runs (as it damn well should after I just put nearly a thousand dollars of repairs into it!). My digestive system frequently gives me trouble, but I have my couch and toilet for comfort. And, there is this computer which enables me to keep in touch with people, along with free TV for entertainment (love my DTV converters!).

Two weeks ago, I brought my slow-cooker up front the basement, chopped up some veggies I had in the frig, added instant rice, bullion cubes, and spices, and made soup. It took a long time for it to simmer, but the results were well-worth the wait, and will last for at least three days. "Joy" comes from appreciating the little things.

Love, Courage, and a Healthier, Happier, New Year, for us and the rest of America!

Rick

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Oh that's the truth Rick, appreciating the little things is what makes me keep on keeping on for sure. Your use of the word 'maintain' is very interesting, have never thought of that word for how I feel about how I am now but that's exactly it - maintain. But being a Type A personality 'maintain' is far below what I normally strive for but then again, normality is a faint memory, lol. Oh heck, normality is probably overrated. That's what I am going to tell myself anyways. Thanks for your encouraging words Rick, hope 2009 will prove to be one of your 'best years' in one way or another.

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

Hi Blue. Each morning I wake up and try to figure out what the drug of the day will be. As my neck degeneration crushes nerves its either pain, anti inflamatory or a muscle relaxer. On bad days all 3. But the one constant thing in my life is my dog that drives me crazy as he wants his morning walk. Be it -20 degrees and 3 feet of fresh snow he does not care. And as he is a beagle he has to put his nose in every fresh deer track as I stand and freeze. Even worse is that fact that he thinks he deserves a treat when he brings me back from freezing. So this year I will get even and give him half a treat. I am sure he will think I am shorting him. But this goofy dog gets me off my butt and outside even on my worse days. And its a reminder that there is life outside my house. One of my daughters just called me from Japan as she is on vacation there. Imagine being able to plan your life beyond 10 minutes. In 10 minutes I can have a smashing migraine that will last for days. We have all given up so much and its hard not to get down at times. I just live for those few times that I am painless. But then I do some sort of work and go right back to square one. I won't quit trying though. Today I shoveled snow despite the yelling from my wife. I needed an oxycondone when I got done but I accomplished something and that was much better than the feeling of doing nothing. Sometimes the accomplishment is worth the pain. Slickwilly

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Hey Slick, Thanks for your words of wisdom, they make alot of sense and I have been where you are at times, over and over - as you are too. Funny you talk about your dog and how he keeps you going, as I was trying to read your posting to my thread here, I had to keep moving my cat's head out of the way as she vied for my attention. lol. Pets are a driving force for many of us for sure, in many different ways. I have often watched people walking down the street or driving in their cars from my apt (why do we always assume their lives are better?) and wonder at their normality, like being able to plan 10 minutes ahead or I can't even imagin it now, a year ahead? Wow. Those days are faint memories. I have a heart problem, damage from chemo drugs, and in a minute or so I can be calling an ambulance so I know what you mean big time. I hear you about waiting for a painless moment and then overdoing it, I do that too and I won't stop either, it's worth it to know that I accomplished something - no matter how small to someone else with a healthier bod. I totally agree with that - it's worth it. It's just that this routine of being unwell for so long, then a moment of relief, then overdoing it, then paying for it, over and over, day in and day out is just tedious sometimes. I used to use oxycodone but couldn't tolerate it so now I am on daily morphine - long acting for my back issues and it helps with other pain associated with treatment in days of yore. Thanks for the post, validation is gold isn't it? Happy New Year kiddo.

Pnktopaz10
Posts: 56
Joined: Oct 2008

I have been reading everything that everyone wrote on this thread and I am in awe of each and every one of you! It is amazing to me the strength you show and the ability to get beyond your pain. Kudos my friends. I am learning so much about people~and how good they are~supportive, honest, caring. I am so thankful that I discovered this board and have met such nice people. Blue, you have made my journey easier and your thoughts and comments help me to stay grounded. I appreciate that. Slick, you are amazing and I admire you so very much. Peace, Pnktopaz10

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

We all belong to a mutual admiration society in these discussion boards, all helping each other. Thanks for the nice comments, back atcha. Blueroses.

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