Six months since my auto transplant, had a few problems, IVIG twice for low platelets, now off all treatment except 50 mg dex each day. As they think it is the thalidomide that may be causing my low platelets.
18 Months ago I had a fall and had to have rods inserted in my spine for fractures. It was not until 6 months later that I was diagnosed with myeloma.
I have now lost 5 inches in height, spoken to the doctors, but they will not operate to do any more repair work as they say it is too dangerous.
Before my accident had no symptoms, and was very physically active with my work, gym, etc.
Now I just can't get motivated! Just before my auto transplant, I was carrying home some shopping and cracked another vertebrae, so I have a great fear of doing anything active.
When I am up at night with all the dex and can't sleep, I make plans to start doing things, but in the morning the motivation is gone again.
Just feel like my life is passing by. I gave up smoking for 4 months after my auto transplant, and have even taken that back up as much as I hate to admit it.
I don't appear to be depressed, every one around me says how well I am coping. Family and friends always comment, you handle it all so well. When I do go out with them I am always dressed, makeup, wig, but now I don't even want to see them as I feel like I can't be bothered even getting dressed.
I have a great partner who supports me all the way with everything, but I feel I have nothing to talk about when he gets home. I do keep up to date on all the current affairs etc, but it's not the same for me as having a fulfilling job and being around people on a daily basis.
I just feel so lost, like my life has stopped. Physically I am not well enough to go back to work, even if I could find employment, so that's out! Have booked in for Pilates, hydrotherapy, etc, but I just can't get the motivation to go.
Any suggestions would be appreciated.
Forums
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Tori - Name: Victoria
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 56
Re: Motivation to get on with life - how to get it back?
It's difficult to accept the new you with many limitations. Added to that, you have financial pressures due to the disease impacting employment. For me, I accepted these limitations and moved on when I realized I was wasting my few remaining days by sitting around feeling sorry for myself. I focused on what I could still do and accepted what I could or should not do.
It's hard to move on, I know what you are going through.
Have you contacted a cancer counselor? Typically all the oncologist have a contact who specializes in cancer patients. I was required to meet with them during my transplant and found them full of good advice.
Believe me, many of us have gone through this, you are not alone. Jerry
It's hard to move on, I know what you are going through.
Have you contacted a cancer counselor? Typically all the oncologist have a contact who specializes in cancer patients. I was required to meet with them during my transplant and found them full of good advice.
Believe me, many of us have gone through this, you are not alone. Jerry
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Motivation to get on with life - how to get it back?
Tori
As Jerry said, you need to adapt to the new you. People live with sickness/ disease in some cases all their lives.
Like you I had to stop work due to my sickness. I led an active life until my diagnosis at age 47 in 2009. It was awfully hard to detach myself from my job, as I had worked at the same company for over 3 decades.
We need to move on and accept that our lives have changed and we need to realize that there are certain things we can no longer do.
I can't run anymore, but I can walk, My garden has never looked as good as it does now. I have time to read the books that been sitting on the shelf.
Life is beautiful - Live it.
As Jerry said, you need to adapt to the new you. People live with sickness/ disease in some cases all their lives.
Like you I had to stop work due to my sickness. I led an active life until my diagnosis at age 47 in 2009. It was awfully hard to detach myself from my job, as I had worked at the same company for over 3 decades.
We need to move on and accept that our lives have changed and we need to realize that there are certain things we can no longer do.
I can't run anymore, but I can walk, My garden has never looked as good as it does now. I have time to read the books that been sitting on the shelf.
Life is beautiful - Live it.
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SamM - Name: Sam
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 47
Re: Motivation to get on with life - how to get it back?
Thanks Sam and Jerry for your thoughts, will speak to the oncologist at my next appointment about arranging to see a cancer counselor.
Some good news today, I applied several weeks ago to become a member of the Cancer Foundation Board and have been accepted! My first general meeting is tomorrow night so I am really looking forward to that. Also checked out the yoga classes around town and starting next week.
Really trying hard to get myself motivated, have given it all a lot of thought after my post and your replies and I realise that no one can do it for me. I have to start getting back into the world.
Some good news today, I applied several weeks ago to become a member of the Cancer Foundation Board and have been accepted! My first general meeting is tomorrow night so I am really looking forward to that. Also checked out the yoga classes around town and starting next week.
Really trying hard to get myself motivated, have given it all a lot of thought after my post and your replies and I realise that no one can do it for me. I have to start getting back into the world.
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Tori - Name: Victoria
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 56
Re: Motivation to get on with life - how to get it back?
Hi Tori,
One of the hardest things to deal with in life is change, especially if it wasn't initiated by ourselves. Getting angry, depressed, spitting the dummy, doing nothing (at all), feeling worthless, can be reactions to change. Sometimes we focus on the things that we can't do instead of focusing on the things we can do.
If you are in a funk, I believe one of the important hurdles to get over it is realising that you have to motivate yourself. In that case you have already started and are in the race again.
All the best.
One of the hardest things to deal with in life is change, especially if it wasn't initiated by ourselves. Getting angry, depressed, spitting the dummy, doing nothing (at all), feeling worthless, can be reactions to change. Sometimes we focus on the things that we can't do instead of focusing on the things we can do.
If you are in a funk, I believe one of the important hurdles to get over it is realising that you have to motivate yourself. In that case you have already started and are in the race again.
All the best.
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Motivation to get on with life - how to get it back?
Hi Tori,
Congratulations on being appointed to the Cancer Foundation Board! That's excellent, and that's an example of what Sam, Jerry, and Libby have said - focusing on what you can do, not on what you can't do. Best of luck to you in that new position. Same thing for the yoga that you mentioned.
One question about your first post in this thread though - if I read it right, you said that you are taking 50 mg of dex daily. Is that correct? If so, that seems like an extremely large dose!
Another way of saying what the other folks have said - look ahead, not back. Sometimes easier said than done, I know. But something to strive for ...
Good luck,
Mike
Congratulations on being appointed to the Cancer Foundation Board! That's excellent, and that's an example of what Sam, Jerry, and Libby have said - focusing on what you can do, not on what you can't do. Best of luck to you in that new position. Same thing for the yoga that you mentioned.
One question about your first post in this thread though - if I read it right, you said that you are taking 50 mg of dex daily. Is that correct? If so, that seems like an extremely large dose!
Another way of saying what the other folks have said - look ahead, not back. Sometimes easier said than done, I know. But something to strive for ...
Good luck,
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Motivation to get on with life - how to get it back?
Hi Mike, in answer to your question, that's correct, take 50 mg every morning. Have been taking for the last 3 months.
The oncologists is going to start reducing it down from next week, they are going to see if my platelet count is improving now I'm not taking the thalidomide. Hope it's not the reason because if it was, won't be able to go back on it or try Velcade.
My problem is a bit different from most, my body is producing platelets after the auto transplant, but for some reason then they being destroyed. Next step after that - spleen out! And still then only a 60% chance of that working.
Went for a walk today, made me feel part of the world again. Can't believe how quickly the body starts to deteriorate, muscle tone, etc, when you don't make use of it!
I just would like to mention that I live on the Gold Coast in Queensland Australia, if there is anyone who lives near me and would like to catch up sometimes for a coffee or a chat, would love to make contact. No sad stories from me - just a laugh and a good friend.
The oncologists is going to start reducing it down from next week, they are going to see if my platelet count is improving now I'm not taking the thalidomide. Hope it's not the reason because if it was, won't be able to go back on it or try Velcade.
My problem is a bit different from most, my body is producing platelets after the auto transplant, but for some reason then they being destroyed. Next step after that - spleen out! And still then only a 60% chance of that working.
Went for a walk today, made me feel part of the world again. Can't believe how quickly the body starts to deteriorate, muscle tone, etc, when you don't make use of it!
I just would like to mention that I live on the Gold Coast in Queensland Australia, if there is anyone who lives near me and would like to catch up sometimes for a coffee or a chat, would love to make contact. No sad stories from me - just a laugh and a good friend.
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Tori - Name: Victoria
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 56
Re: Motivation to get on with life - how to get it back?
Hi Tori,
First, you are brave and smart to reach out to your fellow multiple myeloma travelers for help. I did the same.
It took me more than a year to get back on my feet. At six months I was pretty weak. Most important, get out of your house or apartment every day and walk if you are able in the outside air. There is nothing more freeing.
As for depression, from my own experience, this whole process is a tiring, painful, psychologically challenging fight every step of the way. And that will cause depression in many, it certainly did me.
People around you, friends, family, are not going to notice if you become depressed. They're not trained to spot it for one and more significant, if you're like most of us, you get yourself 'up' when around others, you're 'on' when you see them. Then you crash when you get home, alone at last, exhausted from the effort of hiding your state of mind.
I got tired of the gray curtain blocking the sun from my life and found a therapist who helped me adjust to my new reality. He's taught me mindfulness, a perspective that allows me to deal with multiple myeloma and move on to enjoy the people I treasure, places I like to visit and the pursuit of interests like writing, reading and trying my hand at painting, cooking or growing flowers.
I would regret the days I wasted suffering with depression, but that does not fit the plan which looks forward only. You may want to give it a shot.
Best to you, Tori
First, you are brave and smart to reach out to your fellow multiple myeloma travelers for help. I did the same.
It took me more than a year to get back on my feet. At six months I was pretty weak. Most important, get out of your house or apartment every day and walk if you are able in the outside air. There is nothing more freeing.
As for depression, from my own experience, this whole process is a tiring, painful, psychologically challenging fight every step of the way. And that will cause depression in many, it certainly did me.
People around you, friends, family, are not going to notice if you become depressed. They're not trained to spot it for one and more significant, if you're like most of us, you get yourself 'up' when around others, you're 'on' when you see them. Then you crash when you get home, alone at last, exhausted from the effort of hiding your state of mind.
I got tired of the gray curtain blocking the sun from my life and found a therapist who helped me adjust to my new reality. He's taught me mindfulness, a perspective that allows me to deal with multiple myeloma and move on to enjoy the people I treasure, places I like to visit and the pursuit of interests like writing, reading and trying my hand at painting, cooking or growing flowers.
I would regret the days I wasted suffering with depression, but that does not fit the plan which looks forward only. You may want to give it a shot.
Best to you, Tori
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stephengreene
Re: Motivation to get on with life - how to get it back?
Hi Tori,
I'm a bit too far from the Gold Coast for a cuppa but don't mind having a chat.
I'm a bit too far from the Gold Coast for a cuppa but don't mind having a chat.
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Motivation to get on with life - how to get it back?
Hi Tori,
Thanks for the answer about the dex dosage. I hope things work out ok with your platelets.
And congratulations on your walk! Just keep doing that! I went for a walk this morning with my dogs, and we all enjoyed the early morning here in New Jersey, USA.
I visited Sydney and Melbourne many years ago (for work) and loved them. I'm hoping to get back to Australia one of these days and see a lot more of it.
Thanks for the answer about the dex dosage. I hope things work out ok with your platelets.
And congratulations on your walk! Just keep doing that! I went for a walk this morning with my dogs, and we all enjoyed the early morning here in New Jersey, USA.
I visited Sydney and Melbourne many years ago (for work) and loved them. I'm hoping to get back to Australia one of these days and see a lot more of it.
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
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