How to cope with depression

[Data]

Does anyone have suggestions for coping with depression other than going to a therapist or taking drugs? I just have no faith in therapist and don't want to have any more doctor's appointments than I already do. I don't believe in god. I think what depresses me the most is the uncertainty of MDS. I have always been able to have some control over my life and it just seems like I have lost it.

[Neil Cuadra]

Data,

Clinical-level depression is a medical condition that deserves as much attention as any other medical condition.

On the other hand, feeling down and discouraged some of the time is not only common but perfectly understandable, especially when your life has an ongoing challenge like this.

The distinction may be in whether or not you can carry on with what you need to do and what you like to do, from day to day. If you have debilitating depression, you likely need help that a few suggestions can't provide, even if you aren't eager to seek that help.

If you're just hoping to find ways to stay in a better mood, perhaps a few suggestions would help. I'm not an expert, but I suspect that to keep the uncertainty of MDS from dominating your attention it would help to concentrate on what you CAN control, and trying to make those aspects of your life the way you want them. That includes not only good diet, regular exercise, enough rest, and staying involved in a variety of activities, but being an involved/active/informed patient who partners with the doctor. This is all easier said than done, of course, but I think it's a good place to direct your efforts.

I also think it helps a lot to be with other people. A mixture of personalities can balance out the mood, give everyone somebody to talk to and listen to, and keep your mind on other people, not just yourself. That's kind of how these forums operate.

At the same time, we all need to give ourselves permission for a little melancholy now and then. Anyone with human emotions will have ups and downs. Nobody can be upbeat all the time, and we shouldn't expect it of ourselves.

[Data]

Originally Posted by Neil Cuadra

Data,

Clinical-level depression is a medical condition that deserves as much attention as any other medical condition.

On the other hand, feeling down and discouraged some of the time is not only common but perfectly understandable, especially when your life has an ongoing challenge like this.

The distinction may be in whether or not you can carry on with what you need to do and what you like to do, from day to day. If you have debilitating depression, you likely need help that a few suggestions can't provide, even if you aren't eager to seek that help.

If you're just hoping to find ways to stay in a better mood, perhaps a few suggestions would help. I'm not an expert, but I suspect that to keep the uncertainty of MDS from dominating your attention it would help to concentrate on what you CAN control, and trying to make those aspects of your life the way you want them. That includes not only good diet, regular exercise, enough rest, and staying involved in a variety of activities, but being an involved/active/informed patient who partners with the doctor. This is all easier said than done, of course, but I think it's a good place to direct your efforts.

I also think it helps a lot to be with other people. A mixture of personalities can balance out the mood, give everyone somebody to talk to and listen to, and keep your mind on other people, not just yourself. That's kind of how these forums operate.

At the same time, we all need to give ourselves permission for a little melancholy now and then. Anyone with human emotions will have ups and downs. Nobody can be upbeat all the time, and we shouldn't expect it of ourselves.

Neil,
Thanks. I think your distinction as to whether I can carry on my daily activities is a good one. So far I am doing that. I did recently purchase a bike and that helps me with my depression - strange but it does. Riding just seems to help me get away from it all.

Thanks!!!!!


Data

[DanL]

Data,

Neil listed several great suggestions in his response. For me, it is making sure that I have a sense of accomplishment at the end of each day, no matter how ridiculously small it is compared to what my prior expectations of myself were. I want to be sure that at the end of the day that I lived a day instead of letting it pass. That means that I have some incredible periods of 15 minutes each day that I can look back on and say that I did it.

I have to feel like I contributed something each day, to my family, to a friend, to the world, to an anonymous person. I also look forward to each day being better than the previous day. That can be a 50/50 or worse proposition at times, but sometimes I get a 10 or 15 day hitting streak going and ride that for as long as it runs.

The motto of every day - enjoy what there is to enjoy, endure what there is to endure. Since developing MDS, I have actually learned to laugh out loud, to cry a little at stupid movie moments, and to let go of things that are out of my control, while managing the ones that I can as best I can.

I have also been a big sceptic on therapists and counselors, etc. I have found that I occasionally make that phone call just to check in to be sure that I am not sinking. Do it on your schedule, your need, and sometimes more frequently just to be sure.

Ironically, it is slowing down and appreciating all that I failed to appreciate previously that has helped me through for the past five years. I still have uncertainty every time that I go in for a blood count, a chemistry panel, every time that I sneeze. My blood pressure shoots up 20 points just by walking in the door, but drops as I am talking to the doctor, regardless of the news. Exercise has helped me push out negativity, cleaning the house, making a good meal, learning to make something new, laughing when I screw it up.

I know this response is getting long, but I also like to believe that every moment is a new moment and that I have an impact on that moment by making a choice - I can be angry, irrational, fearful, closed, sullen, etc.....or I can work on changing it right now to be happy(ier), ready to go, active, optimistic, appreciative, strong. This usually pushes me to do something, to get out of the chair (or into it if I am writing something), and activity seems to get me through.

These forums also seem to help and have been an odd place for me to find solace and perspective. We have Neil to thank for that.

[Chirley]

Now, if only you were female.......yesterday I bought three new after five dresses, five new blouses, three new pairs of slacks and two new pairs of shoes....feel so much better. Oh, forgot to mention the silk scarf, the woollen shawl and loads of make up.

I'm still sick, still have a limited future, still have lots of medical nonsense to endure but I feel a bit more able to handle it after yesterday's retail therapy.

[JordanN]

Hi, Data and DanL,

I wish I could give you some wonderful piece of wisdom that makes it all better, but, unfortunately, I don't really have one. I have always been the caregiver, not the patient who is the one who actually has to deal with all the treatments and the scary ramifications of this diagnosis and somehow find a way to be at peace with it all. I can tell you that my mom and my aunt and uncle did eventually get to a place where they could peacefully handle it all, and they all did it in different ways that matched their personalities. My dad is still working on it but tends to approach things in a very analytical, logical manner.

I just wanted you both to know that you have made a big impact on and have been a huge source of inspiration to complete strangers with your support of members on this forum, and if you have made such a difference to us, imagine all the people you've dealt with your entire life that have better lives because you touched them in a special way! When you are feeling down, just remember how much you mean to some many people and know that everyone is wishing you all the best!

Neil - Thank you so much for making these forums with your wife, Ruth! You are both fountains of knowledge, incredible cheerleaders, and fantastic sources of support and comfort when things don't go well. You have been through (and continue to go through) all the mountains this disease throws at people, and you took all that hardship and made a place where everyone can come together! You are both wonderful!

Chirley - Thank you so much for making smile! Your story is absolutely amazing, and I am so impressed with anyone who can keep a sense of humor even in the face of so many medical hurdles. I do so hope that you are able to go on the cruise, and that it gives you the break you need to make the decisions you are struggling with now. I've no doubt you will be the favorite passenger on board (as well as the most fashionable one)! Retail therapy is sometimes the best therapy there is!!

Sending hugs and well wishes to you all!

[Data]

Originally Posted by Chirley

Now, if only you were female.......yesterday I bought three new after five dresses, five new blouses, three new pairs of slacks and two new pairs of shoes....feel so much better. Oh, forgot to mention the silk scarf, the woollen shawl and loads of make up.

I'm still sick, still have a limited future, still have lots of medical nonsense to endure but I feel a bit more able to handle it after yesterday's retail therapy.

Chirley,
Well I didn't buy any dresses but I did buy a bike. When I retired I figured I would not be riding anymore so I sold my Goldwing. Never should have done that. I just recently got another bike - not a Goldwing but something to ride and take my mind off things. It helps some.

Thanks

Data

PS Have you heard anything from Julie?? I am worried about her.

[Data]

Jordan and Dan,
Thanks to both of you. I think "talking to" folks on this forum is very helpful and it doesn't cost $100 an hour or what ever the going rate is for therapist. Feeling like you have accomplished something is a little harder when you are retired. When I was working I felt like I was doing some good. Now I am not so sure. I will keep your advice in mind though!

Thanks

Data

[Chirley]

No we haven't heard from Julie but sadly there was some news from elsewhere that can't be verified that she passed away 12/2/2015. I so hope this isn't true. When I heard this news I couldn't help but shed tears for all those people on hear that we stop getting posts from.

I wish with every cell in my body that the news I heard was wrong.

[Data]

Originally Posted by Chirley

No we haven't heard from Julie but sadly there was some news from elsewhere that can't be verified that she passed away 12/2/2015. I so hope this isn't true. When I heard this news I couldn't help but shed tears for all those people on hear that we stop getting posts from.

I wish with every cell in my body that the news I heard was wrong.

Chirley,
Thanks! I too hope you are wrong but my reality side is telling me you are probably correct. It just wasn't like her to all of the sudden quit posting for so long. I felt so bad for her being so young!!

Data

[Cheryl C]

Data - have you heard of St John's Wort? It's a natural anti-depressive medication. You could do some research yourself. I don't suffer from depression but sometimes have a busy mind which I find hard to turn off at sleep time. St. John's Wort (SJW) is good for that too. You could do your own research on this - a good start might be http://www.blackdoginstitute.org.au/...tJohnswort.pdf

Note: If you are interested to try SJW I recommend you seek the advice of a naturopath or someone who knows about interactions with any other drugs you might be taking.

Re Julianna - I have been thinking along the same lines. Very sad if she has passed away, and particularly sad that it took so long for her to get the help she needed.

Chirley - I so admire your irrepressible spirit!

[PaulS]

Thanks Data for starting this thread and for all the thoughtful and helpful replies. I find the gradual loss of my ability to do things I love - strenuous hiking, running biking - and the uncertainty of what lies ahead in the future to be difficult and depressing. I wish I had the answer - However the voices on this board are almost always inspiring.
I try to combat the uncertainty with hope - maybe a drug will work, maybe a BMT will provide a cure, maybe new treatments will be developed. If hope doesn't work, there is acceptance - we are all going to die, its the way we live with what we have that is important - enjoy time with friends and family, travel if you can, engage in actives you love and find other thing to do. The do something positive every day is great advice. I used to plan a lot - business plans, vacation plans etc - now planning is difficult - will I need a transfusion next week? How will I feel in six months -etc - as a consequence, I find it important to seize those days when i feel relatively good - don't waste them - and appreciate the watch wait and worry time - try not to worry too much - there will be ample time for more serious worrying.
Good luck
p

[bailie]

Very good comments. Paul you are right about the acceptance. There are phases to this process.

Paul, how did you handle the prednisone? I was put on 160 mg/day to combat a dry cough and it worked immediately and I am in the middle of the taper (down to 60 mg/day). My only reaction was glucose levels going up immediately (300-500 range).

[PaulS]

Wow - 160 mg Prednisone seems like a lot - I take prednisone for skin nodules that can be itchy and painful and are somehow related to the MDS - originally i started with a package designed to taper in a week starting at 60 mgs - worked great but after tapering the nodules came back. I've been taking 10mg a day for a couple of years - sometimes more and don't really notice it much. If I take a higher dose I get irritable - when I try and taper or get off I get tired and the nodules return. I'm told higher than 10 mg puts one at risk for certain infections - I think a short term course to address a specific problem isn't much to worry about and it can really work wonders. It doesn't seem to do anything to my blood counts. Tapering after long term use seems very difficult
We're hoping that Vidaza eliminate the nodules as well as restore my blood to close to normal - but so far after three cycles counts are all down and nodules are still there. How long did it take for Vidaza to work for you? I fear a SCT lies somewhere down the road - part of the uncertainty and acceptance.

[bailie]

The Vidaza worked for me after the second cycle. Not unusual for it to take longer in most people. The Vidaza got my numbers into great shape for my SCT. I felt very good going into the SCT and I think that made a huge difference. I am at Day +196 now and have have no problems except for that cough (knock on wood).

I think you are correct about the prednisone creating infection problems and that is why they are trying to taper (down to 60mg now) as fast as reasonable. The increase in my glucose from the prednisone does zap my energy by evening. I did golf 18 holes yesterday, but I did use a cart. It was my first time out. I could quickly tell that my strength is not what it was prior to SCT. The doctors have told me that the prednisone will zap my muscle strength so I hope it gets better when I get off.

[PaulS]

Sounds like you are generally doing well - and are on the right path in getting off prednisone. Is that your first golf game post SCT or post prednisone? I'd imagine the SCT would take quite a while to recover fully from. Its great you keep active and playing. I used to like walking on the golf course until I realized that driving the golf cart was the best part of my game.

[bailie]

That was my first round of golf. I use it as a barometer for measuring my strength and endurance. I have golfed most of my life so I know my baseline in comparison to how I now feel. And, in response to Data's comments, this is good "therapy" for me.

Naturally, the SCT is different for everyone. For me, if I could live for a few years at the level I was at Day +100 until now, I would be extremely happy. But, we know there can always be problems at any time. When I was diagnosed the doctor was talking "7 months and think about getting your affairs in order", unless having a SCT with the possibility of a much longer life. If things turn out badly from here, I have zero regrets for having the SCT.

[DanL]

@bailie - you are one tough person.... 160mg prednisone is one heck of a dose. The highest dose I ever hit was 100mg back when i was being treated for ITP (I was 215 pounds at the time). At 60mg, I want to rip through buildings like king kong with unforeseen moments of irrational anger, and I have the energy to do it. Two hours of sleep? way too much!

@PaulS - energy levels seem to come and go after stem cell transplant. There are days where I feel pretty darned good on the scale of things, and others where getting up the 10 steps from the basement to the main floor is a challenge. 3months out of transplant I was able to walk 4 or 5 miles a day, and recently getting a quarter mile in was a challenge. I am back to where a couple of miles a day is reasonable. Ups and downs both physically and mentally are just part of what we work with each day. I also have to say that I really agree with the hope and acceptance pieces that you brought up here. Hope is powerful, and acceptance is motivating.

[PaulS]

Baile an DanL - you both provide hope for those of us who may be looking at a SCT in the future. Doesn't sound easy - but seems like there is possibly light at the end of the tunnel - As long as you can keep playing golf or keep walking - or doing whatever it is that makes life good and "normal" there is hope and rather than depression. Meanwhile I'm still hoping the Vidaza works.

[SASSI07855]

DANL said "enjoy what there is to enjoy, endure what there is to endure. Since developing MDS, I have actually learned to laugh out loud, to cry a little at stupid movie moments, and to let go of things that are out of my control, while managing the ones that I can as best I can"

DANL this is some really great advise. Thanks for sharing.

Data said Feeling like you have accomplished something is a little harder when you are retired. When I was working I felt like I was doing some good. Now I am not so sure. I will keep your advice in mind though!
Data I have experienced this same thing. I have been retired now for almost 11 years. I have managed to find things to keep me busy and involved, even if in some cases the things I do may not make much sense to others.

For instance I spent the last 6 months, among other things, researching and evaluating a new truck I was interested in. My family tells me that I should go around to some dealers and pick out one that I like. There was a time when that is what I would have done. I found that doing it this way was much more interesting. I learned stuff that I never ever had thought about.

BTW my "new" truck, that I had specially ordered just for me, is now at a GM rail yard in Atlanta, and should be delivered to my front door by the end of next week. The truck is coming from a dealer in metro Atlanta, some three hours driving time north of me. The sales consultant's mother lives about five miles from me. He is going to personally deliver my truck early one morning so he can spend an afternoon (on company time) visiting his mother who he has not seen since Christmas.

Data you just have to find things to keep you physically and mentally involved, and challenged, even if those things do not make much sense to your loved ones.

[vickij]

I too have had a problem with depression. I did some volunteer work at the hospital when I was able. Small things like delivering mail & stuffing envelopes. The staff was really glad for the help. Maybe do some work for a charity. That is if you feel up to it. That is what always made me feel better & more appreciation than my paying job.

[Bob Macfarlane]

When first diagnosed and given 29-48 months, I just made my mind up to live until I die. Do everything I wanted to and the disease would allow me to. Never give up and never dwell on the disease. Get the finest healthcare you can, I am treated at the VA and it is very much fine.

The doctors cannot tell you your expiration date but you can control it be deciding to lay down and die. Even with at time debilitating shortness of breath at fatigue, I still manage to hunt feral hogs nine months out of the year. How? That is the reason God created ATVs.

That "Being" you don't believe in is the only "One" controlling you expiration date. You might want to try speaking with Him sometime.

By the way, that 29-48 months was about 11 years ago now. Attitude has a great deal to do with that

[lurker69]

Something to check is your lipids/cholesterol.

MDS has a known link to low lipids/cholesterol, and low lipids/cholesterol has a known link to depression.

In my case, I have eaten a lot of eggs, shrimp, crab legs, cream, etc. and taken 5 1200mg fish capsules per day. My lipids have risen from total of 95 to a total of 120, and my memory and mental health have been much improved, I believe, as a result.

Originally Posted by Data

Does anyone have suggestions for coping with depression other than going to a therapist or taking drugs? I just have no faith in therapist and don't want to have any more doctor's appointments than I already do. I don't believe in god. I think what depresses me the most is the uncertainty of MDS. I have always been able to have some control over my life and it just seems like I have lost it.

[bailie]

That is interesting. My doctors immediately took me off my four a day 1000 mg Omega-3 fish oil pills as soon as I was diagnosed with MDS.

[maggiemag]

Bailie, may I ask why they took you off? Did they give you a scientific reason? I take 2 Fish Oil caps every night and no one has ever questioned that related to my MDS.
Thanks, Mags