I get very depressed every time I need to do my quarterly check-up. It's just a case of being reminded of the "illness" I have. I am lucky that my M-spike is low and that I don't have any other symptoms. I guess what make me a tad more interesting is that I am young for MGUS averages and I have IgM MGUS.
Just wondering how others deal with the anxiety that comes with the quarterly check ups.
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Aussie - Name: Assue
- Who do you know with myeloma?: Nil
- When were you/they diagnosed?: 2015
- Age at diagnosis: 37
Re: Anxiety, depression, and regular blood tests
Hi Aussie,
I am from the Southern Highlands in New South Wales, Australia, and a decade older than you and totally understand where you are coming from.
I have been on this merry go round since May last year, and I have just told my haematologist that I am going to take 6 months off from tests, etc., as it is too all consuming when being tested every 2 to 3 months – especially as I have been unwell with a couple of other now resolved illnesses which also required a lot of intervention.
I think it is best to keep to as normal a life as possible and to focus on personal relationships and devoting time to exercise each day. Nothing too strenuous, but preferably some time in the fresh air.
I personally find prayer a comfort too.
I wish you all the best on your journey.
Take care
Ann-Marie
I am from the Southern Highlands in New South Wales, Australia, and a decade older than you and totally understand where you are coming from.
I have been on this merry go round since May last year, and I have just told my haematologist that I am going to take 6 months off from tests, etc., as it is too all consuming when being tested every 2 to 3 months – especially as I have been unwell with a couple of other now resolved illnesses which also required a lot of intervention.
I think it is best to keep to as normal a life as possible and to focus on personal relationships and devoting time to exercise each day. Nothing too strenuous, but preferably some time in the fresh air.
I personally find prayer a comfort too.
I wish you all the best on your journey.
Take care
Ann-Marie
Re: Anxiety, depression, and regular blood tests
Thanks Annie. I take some comfort that I have this group which I can turn to.
I just found this entire thing snowed ball.
1. Got MGUS
2. Got depressed
3. Placed on anti-depression meds,
4. Now have to list depression as pre-existing condition
5. Can no longer make changes to my life insurance
6. Get more depressed
7. Try to donate blood
8. Told I can no longer donate blood.
9. Get more depressed
It just goes on.
I have a great doctor who I can trust. Just find him sometimes too honest. For example, he told me that because of my age, eventually, I will have to be treated.
I tend to try and keep me calm by telling myself that it's only 1.5% chance per year of progressing, but now as the years pass, this mantra is causing more anxiety.
Honestly trying to look at the positives. We caught it early, but how is this positive? To date I am always looking at the facts and the two that keep me going are:
1. I don't have anything serious as yet.
2. Although stats are not on my side, it may never develop into anything serious
Are there more facts that I can add to my mantra?
I just found this entire thing snowed ball.
1. Got MGUS
2. Got depressed
3. Placed on anti-depression meds,
4. Now have to list depression as pre-existing condition
5. Can no longer make changes to my life insurance
6. Get more depressed
7. Try to donate blood
8. Told I can no longer donate blood.
9. Get more depressed
It just goes on.
I have a great doctor who I can trust. Just find him sometimes too honest. For example, he told me that because of my age, eventually, I will have to be treated.
I tend to try and keep me calm by telling myself that it's only 1.5% chance per year of progressing, but now as the years pass, this mantra is causing more anxiety.
Honestly trying to look at the positives. We caught it early, but how is this positive? To date I am always looking at the facts and the two that keep me going are:
1. I don't have anything serious as yet.
2. Although stats are not on my side, it may never develop into anything serious
Are there more facts that I can add to my mantra?
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Aussie - Name: Assue
- Who do you know with myeloma?: Nil
- When were you/they diagnosed?: 2015
- Age at diagnosis: 37
Re: Anxiety, depression, and regular blood tests
Aussie,
I'm sorry you had to join us here, but I know you find friendly ears and answers to your questions on this forum.
I certainly understand where your anxiety comes from. I'm guessing most of us have gone through that and continue to go through it. I wish I could say it goes away, but in reality I think we just learn to manage it.
I think something you can add to your mantra is that the research and treatment options for MGUS and multiple myeloma have increased at an amazing rate in recent years, and we have very good reasons to be hopeful these conditions can be managed for many, many years.
Good luck.
I'm sorry you had to join us here, but I know you find friendly ears and answers to your questions on this forum.
I certainly understand where your anxiety comes from. I'm guessing most of us have gone through that and continue to go through it. I wish I could say it goes away, but in reality I think we just learn to manage it.
I think something you can add to your mantra is that the research and treatment options for MGUS and multiple myeloma have increased at an amazing rate in recent years, and we have very good reasons to be hopeful these conditions can be managed for many, many years.
Good luck.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Anxiety, depression, and regular blood tests
Hi Aussie,
I know what you mean about life insurance and donating blood. I feel like a pariah now. I have the universal blood group and can't use it to help anyone anymore.
I find it interesting that as far as insurance goes we are no longer really insurable because of our risk, and yet most of the doctors seem to think it is totally benign and you are worrying for nothing. Ha. Seems you can't win.
At the risk of sounding trite, when I start to feel it gets too much, I take the Scarlett O Hara approach.
I tell myself that I won't worry about it today, I will think about it tomorrow. Keep doing that and focus on other things as much as possible until the wave passes. It is what I tell my son who is suffering from anxiety since I became unwell and the walls came tumbling down. Dr Phil says you kinda fake it till you make it.
I don't know where you are in this beautiful country, but tomorrow we are meant to replace cold wet windy weather with sunshine and I for one plan to make the most of it.
I hope you can too.
Ann-Marie
I know what you mean about life insurance and donating blood. I feel like a pariah now. I have the universal blood group and can't use it to help anyone anymore.
I find it interesting that as far as insurance goes we are no longer really insurable because of our risk, and yet most of the doctors seem to think it is totally benign and you are worrying for nothing. Ha. Seems you can't win.
At the risk of sounding trite, when I start to feel it gets too much, I take the Scarlett O Hara approach.
I tell myself that I won't worry about it today, I will think about it tomorrow. Keep doing that and focus on other things as much as possible until the wave passes. It is what I tell my son who is suffering from anxiety since I became unwell and the walls came tumbling down. Dr Phil says you kinda fake it till you make it.
I don't know where you are in this beautiful country, but tomorrow we are meant to replace cold wet windy weather with sunshine and I for one plan to make the most of it.
I hope you can too.
Ann-Marie
Re: Anxiety, depression, and regular blood tests
Hello,
I know what you mean. I was just diagnosed with MGUS about a month ago, i also have small fiber neuropathy (led to MGUS diagnosis) and I also have either Lyme or multiple sclerosis, as I have lesions on my brain and one on my cervical spine. All of this has been hard to handle and I'm struggling with my mood as well. I have a 7 year old daughter and my brother died 2 years ago at 36. So I really feel for my parents as I'm their only living child. Lets try to keep our chins up and just enjoy each day we're given!
I know what you mean. I was just diagnosed with MGUS about a month ago, i also have small fiber neuropathy (led to MGUS diagnosis) and I also have either Lyme or multiple sclerosis, as I have lesions on my brain and one on my cervical spine. All of this has been hard to handle and I'm struggling with my mood as well. I have a 7 year old daughter and my brother died 2 years ago at 36. So I really feel for my parents as I'm their only living child. Lets try to keep our chins up and just enjoy each day we're given!
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countrygirl - Name: Countrygirl
- Who do you know with myeloma?: IgG MGUS
- When were you/they diagnosed?: September 2016
- Age at diagnosis: 35
Re: Anxiety, depression, and regular blood tests
Dear Aussie.
My advice to you, is don't worry about what hasn't happened.
Take stock of what you haven't had happen to you. It just might not eventuate.
If your bloods do come up with a not so good result. It's not the end of the world. It just means a different way of life for a while.
Many have said on the forum how sometimes a diagnosis can be a strangely positive thing. We humans for the most part take our lives for granted until we are faced with our own mortality.
When I was diagnosed with multiple myeloma, It took me a good two months to comprehend what was happening. I concluded that, that two months was a kind of mourning for myself. Eventually I got over the process of dying and started focusing on the concept of living. Albeit with a new found normal. How was that positive you may ask? well the sky is bluer the grass greener. My moments in time more special and precious. I no longer sweat the small stuff. Like blood test. (lol) Because what for. It doesn't change anything. It just is.
You can either focus on all the negatives that are going to happen (or might not) or you can focus on the positives that are in your present. Take stock of your life and work out what is important to you and make that your focus.
When we have a glimpse of our futures, whilst we may not be able to change our course. We have the opportunity to best use our time. Because we come to realize we are not on this planet forever. So therefore we cannot take time for granted.
There is no doubt this is a scary disease. Especially all the unknowns. Somehow you have to rise above it. Otherwise you will end up in a place you can not get out of.
The sun came up again this morning. As it does. And so must you.
She'll be right mate!
Yours Vicki
My advice to you, is don't worry about what hasn't happened.
Take stock of what you haven't had happen to you. It just might not eventuate.
If your bloods do come up with a not so good result. It's not the end of the world. It just means a different way of life for a while.
Many have said on the forum how sometimes a diagnosis can be a strangely positive thing. We humans for the most part take our lives for granted until we are faced with our own mortality.
When I was diagnosed with multiple myeloma, It took me a good two months to comprehend what was happening. I concluded that, that two months was a kind of mourning for myself. Eventually I got over the process of dying and started focusing on the concept of living. Albeit with a new found normal. How was that positive you may ask? well the sky is bluer the grass greener. My moments in time more special and precious. I no longer sweat the small stuff. Like blood test. (lol) Because what for. It doesn't change anything. It just is.
You can either focus on all the negatives that are going to happen (or might not) or you can focus on the positives that are in your present. Take stock of your life and work out what is important to you and make that your focus.
When we have a glimpse of our futures, whilst we may not be able to change our course. We have the opportunity to best use our time. Because we come to realize we are not on this planet forever. So therefore we cannot take time for granted.
There is no doubt this is a scary disease. Especially all the unknowns. Somehow you have to rise above it. Otherwise you will end up in a place you can not get out of.
The sun came up again this morning. As it does. And so must you.
She'll be right mate!
Yours Vicki
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Anxiety, depression, and regular blood tests
Thanks for all your comments. Noted in my book of things to think of when I am feeling down.
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Aussie - Name: Assue
- Who do you know with myeloma?: Nil
- When were you/they diagnosed?: 2015
- Age at diagnosis: 37
8 posts
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