Depression
 

Ally (Bluesky) and Susan (DessertFlower) were brave enough to bring this up in my Remission post, so I thought it would be a good thing to talk about. I am sorry you guys are feeling so down. You are both so sweet, so there has to be something about your spirits that is better than this damn disease; that can beat that depression.

It seems that only people with a disease want to talk about what it is to live with it or the depression that often goes with it. So many times, all others want to know is the trite "I'm okay" response. Well, I am not okay. And neither are a lot of other people. And I for one need to talk about that. It's not about pity or not having a good attitude. We all need to talk, to get things out, to feel better.

We can go to psychologists and psychiatrists. We can do "mood" drugs (aka antidepressants). Or mood foods like fish, caffeine and healthy (or not healthy foods like chocolate) foods. :pepsi: We can have mood supplements like vitamin B12 and others. We can put music on, do all the things we love (well, almost do those things) and try, try, try every day to feel okay about our lives. :sing: :Head-Spin: :Dancing-Chilli: Don't do all that the icons are doing or you'll pass out from lack of oxygen.

I am in one of those "moods" tonight where I sit here and look into my kitchen, thinking about how much I don't really want to eat. It's a version of anorexia but mainly due to depression and the fact that it is so hard to make dinner. By this time of day, I just want to sit. And "fast" or frozen food is out due to my inability to have gluten or sodium. I usually eat all whole foods, which means a lot of prep. So by this time of night, I end up eating "picnic" food, like an apple, pumpkin seeds and maybe cheese and crackers.

The one thing that usually keeps me going is the "unknown" or the "magical" moments life has to offer. Like the bluebirds we hardly see but when I do it makes my week. Or someone actually saying I look good (better to look good than to feel good). Or knowing that, after seven damn years, I can read my medical records and find out that I have in fact seropositive MG instead of seronegative (because the damn doctor kept it from me so his doctor pal wouldn't be sued for dismissing my concerns and keeping me from prompt diagnosis and treatment (allegedly).

I keep going back to the movie Castaway, where Tom Hank's character says that you never know what the tide will bring (it brought him a sail so that he could get off the deserted island he had been on for four years). So I cling to those "gems," those moments that make it all worthwhile, including the support I find here. I keep my eyes and mind aware so that I don't miss them. And I try to look for as much good as I can (staying the heck away from the news).

It's hard to live with a chronic illness but think of it as having an emotional and physical garage sale. Get rid of all that makes you feel bad and keep all that makes you feel good. And that you need. I don't really have a lot of words of wisdom since I struggle with depression - and the occasional suicidal thoughts - due to my physical and financial limitations. My mind is still my own though.

So if you guys need to vent or have any ideas on how to deal with all this, vent away. Or go eat this . . . :icecream: . . . that can sometimes help.

Annie

*hugs* I'm sorry some of you are going through this, I myself try not to be depressed, but sometimes I just cry for no reason. Lol.. Okok I think theres a reason why I cry, bUt i find it so hard to control sometimes. And sometimes I just feel like remaining uncontactable or not contact any one.. Lol..

I guess when we're dealing with quite a bit of things, sometimes we do feel suffocated. I find it useful to just let it out by ranting by writing or crying. After that, I'll remind myself of the things I still have to do, my clients, my goals in life and those are what keep me going on and on despite what I'm feelling.

Then the depressed feeling sorts of goes away once I get happy doing those things. It always helps when I do my best to still appreciate things that come my way, and believe that it will only get better. Also, I think of you guys. =D

Great post Annie,

I get mad more than depressed. Yes sometimes there are times I want no contact with other people but that is because I am mad and don't want to bring that around others. I know someone who uses her illness as a way to explain away her behavior, she says "Well we have an incurable illness so do whatever you want" She drinks and go crazy and I can't stand that kind of behavior.

I like to think we are unique in the way we are and we have a responsibility to show the world we are survivors and can help others.

Depression
 

Annie,
First off I wanted to make a suggestion for cooking and eating since by evening you are too wore out to cook. I use my crock pot or slow cooker ALOT!!! I am a vegetarian so I also have to prepare alot of my own food to make sure I am not using animal by products. I love to make soups in it. My favorite is vegetable but you can make just about any kind you like. I am also a big bean eater. I make navy or pinto beans alot. I soak them the day before I plan to eat them with the crock pot off and then turn it on low right before I go to bed. By the next evening they are ready to go. You can make black beans and add things to make it as spicy as you like. I put onion, garlic and cilantro in and eat them with corn tortillas or corn chips. What I have left I refrigerate and use them throughout the week to make taco salad or burritos. I also make casseroles and keep them in the refrigerator to eat on evenings when I don't feel like cooking.

As for the depression. I mentioned in another post that I struggle with that too. I have been on antidepressants since 2003 after my mom died. I was with her when she passed and was haunted by the things I saw her suffer through at the end. I have tried to come off them a couple of times but end up back on them. My Dr. told me a couple of years ago to plan to take them the rest of my life. I have lost 5 family members since 2001 so everytime I think I can manage without them I feel like I am blindsided again with another death in my family. My issue was more anxiety before my diagnosis with MG but now I tend to think it is more depression. My neuro asked me last week if they were helping. I told him yes for the most part. I think the hardest part of MG for me is never knowing how I will feel from one day to the next and worrying about how quickly this disease seems to be progressing. I have always been very outgoing and active and I am having a hard time adjusting to the way I feel and look from this. I know there is a grieving period with illness just like there is when you deal with death. Annie when you made the comment that it is more important to look good than feel good. I am with you on that! I am a Christian and believe that God has a purpose for everything in this world, even the things we don't understand. So I pray for peace and try to spend a few minutes each day doing something I love. Today in Mo it is gorgeous!!! It is 70* and sunny. Last week it was rainy and cold all week so I am sitting here with my door open enjoying the sunshine and warmth. I refuse to let this disease take away my spirit and joy of living. I just need to figure out how to accept that this is my new life and it can still be good just in a different way. :circlelove:
Kendra

I've been thinking about this post for most of the day... how do I reply to it?...

First, I think it is important to accept that depression is a medical condition. "the blues" aren't they're normal healthy emotional fluctuation... depression is. You will not fix depression with eating fish or B vitamins. Would you skip your Mestinon for MG if that's what you've got controlling it? The medications for depression re-balance your brain chemistry and need to be tuned in association with a physician (or psychiatrist). Depression is as much of a disease as MG is and I think if you are suffering from it, you should deal with it in the same manner as you deal with MG ... with Doctors' assistance.

I am dealing with mild depression. I went through a lot when MG hit me; I had finally got my career to the point that I was working for for a long time and suddenly got broad-sided by this horribly confusing condition; hospitalized and unable to do what I had been driving for. I was used to being able to take on as much overtime as my company was willing to give me to pay off our debts and save for special vacations, that was gone too. I suddenly couldn't even carry the damn groceries in from the car. I was experiencing lots of anger and self-pity needless to say. My wife came with me to speak with my doctor during one visit; my doctor immediately diagnosed depression and made it clear it was nothing unusual given what I was going through. With medication, it has been improved. I still occasionally have "blue" days, but I'm not dealing with depression crushing me anymore. It is being controlled as any medical condition should be, with the help of my medical team.

I hope any of you experiencing depression do not let it build in you... work with your medical team and get it under control. Medicated or non-medicated remission is possible with depression just like it is possible with MG.

Brennan, By no means was I saying that you can think or eat away depression, even though attitude and coping skills are key to beating it. If you read the beginning of my post, it was motivated due to how Susan and Ally are doing and how we should support them right now.

There are many journal articles, and books like the ones by Andrew Weil, that show very clearly how vitamins and supplements like Omega 3's are important to how we "feel;" how our mood is. By itself, a B vitamin complex will not take care of clinical depression. But to say that foods and supplements are not important is to ignore what our bodies do indeed need to feel good. I know what it's like not to have B12 in my body and I had dementia and angry mood swings. And if you are low, or high, on blood sugar, you can feel like crap.

I did in fact mention psychiatrists and psychologists and am myself seeing a very good one. I cannot do the antidepressants, just as a point of information. They are an important tool in fighting depression but so are many other things, like support of family and friends. The "prescription" for depression is different for everyone.

I'm glad antidepressants worked for you. They can be quite effective.

Kendra, You are very kind to make those suggestions. I am afraid that my diet is very limited due to allergies, salt restriction, etc. I am so sorry your Mom died and that you have a lot to deal with due to that. It was very hard seeing what my Dad went through for 16 months before he died too. I am thankful he is no longer suffering and is with his golfing and teaching friends now.

Joanmarie, I get angry too. I have had to really work hard at getting over my anger at certain doctors and their inability to get things right. It's been almost worse than my anger about being sick. It can really adversely affect your blood pressure, so be careful about getting too angry. ;) I believe in purpose too - I just wish I knew why so much you know what has hit the fan.

Connie, I'm glad you can still do things you love. I think a good cry is great for the body. When I need to cry, I just let it out. It feels good afterwards. You have lots going on and still have energy for others. I wish I had energy to volunteer my time again.

Any care you guys get for MG or depression or whatever else is between you and your doctors. I simply wanted to give some support.

Annie

Annie,
I just want to say "Thank You" for your post. I needed what you said in your posts here. I am also having some "times" right now and I do appreciate your support as well as others here on this forum. You have uplifted me tonight and I do thank you! God Bless you and others for sharing the "real world" of MG.
Hugs,
Simon

Yes Annie....I give you a big "at a girl" for that post....

I also actually watched a bird today, he walked up and down my bannister....I sat there and thought..."You know, birds don't have to worry, God takes care of them". So as the same (even more) with us.

When I get down, I try to always think of others who are going thru alot more than I am....for instance a child I know in my hometown who is 6 years old with Cancer....also others here in this forum who suffer alot more than I do.

Thank you for your gift of "encouragement and wisdom".......

Saying a prayer for all our forum folks tonight...:smileypray:

Hugs
JJ

Cool Annie :) I guess I'm guilty of seeing what I thought you were saying and not actually what you were... sorry about that.

I've been in a lot of arguments with co-workers lately who seem to think that "the cure" is in a particular diet. Citing things like aboriginal diets as cures for cancer :rolleyes: (seriously, did you know there is a group of aboriginals in the mountains somewhere where cancer is unknown? Of course the cited article neglects to mention their mean-age of death from natural causes) B-vitamins are widely cited as "happy vitamins" and I do take them in addition to my D and C vits, but they're no cure for depression. A lot of people not going through a disease or condition have quick-fix solutions and a lot of those quick fixes are snake-oil. I've gotten into the zone of calling out when someone says "take B complex, you'll be fine" "pull up your socks and get better, you'll be fine" etc. A little over defensive I guess :winky:

Cheers,

Brian.

Thanks Annie
 

Annie, thanks for thinking of us.

Thank you everyone for sharing parts of your life here.

As for me, I am not clinically depressed, but I definitely have some issues that cause me emotional problems. I have learned many methods to help keep me sane. Since the sources of my problems (at least the big ones that normal people do not have) are not within my reach and I cannot do anything to eliminate them, I have to learn to live with these things. Vitamin B definitely helps as well as sunlight (of course in small amounts), deep breathing (for the stress), meditation (to fall asleep), Mestinon (necessary!!!) and so many other things help me deel with this mountain of issues I carry around with me.

The biggest help is nature...to see a flower, sunsets, sunrises, birds, plants...to feel I am a part of it all helps me greatly (those Magical moments Annie mentioned). Music, writing, drawing, thinking and reading (I so much miss being able to read normally, but still I read) are all a part in feeling better about myself.

We all have to find what works best for each of us, we are all individual in our method of healing, I am still learning new ways to make life better (and it feels like with every step forward, something pulls me down 10 steps but I keep trying).

Like you Annie, I am not okay and it does help to accept this fact and to talk about it. Only then I believe can we begin to heal, to make what we can of what is left of our life. The thing I realize that is lacking from my life is other people...I have been isolating myself and now I feel locked in...I feel a great loneliness and a need to talk to more people (I love my kids and husband but it is not enough talking to them only).

The thing that makes me mad recently is the realization that possibly MG and definitely many other illnesses are caused by our culture and all of its pollution. I knew of the diseases caused by pollution before but only now have I became angry. I don't need something else to be mad at right now...

Thank you everyone.:grouphug:

Sorry This Is Too Long
 

Thanks Annie for your kind words and your support. Thanks for talking about this too (and thanks for everyone’s response). I think you’re right, struggling with depression and just struggling with emotions goes hand in handwith having this disease. For me it’s a feeling of being trapped, of feeling isolated, and the financial worries.

I’ve thought about this a lot because of what I’ve been through in the past ten years and what my emotional response was. This all started for me way back in 1999 when my husband, Mark,because sick with cancer. Even though he had a tumor the size of a foot ball it took a year to get a diagnosis and I was told when we finally got him in front of an oncologist that he had two weeks to live if we didn’t get the right chemo into him. As it turns out, I wish we had just skipped the chemo. He was given the worst chemo known to man and went through unspeakable agony – he lost the lining of his mouth throat and nose, the chemo destroyed his bladder and when they put a garden hose like tube in to irrigate it the hose landed on a spot that had been destroyed, I could go on and on but I won’t because every day it was something new and horrific. After all that the cancer came back anyway just a month after chemo ended. We were promised a peaceful death but he was in terrible pain and begging to die. We were told we needed a drug to put him basically into a coma until he died. The hospice doctor said there was none in the state, she wrote in Mark’s record that “wife is not ready for husband’s death”, then she just stopped returning our frantic calls. This went on for days. It turns out that she was afraid to give him the drug because Oregon had passed an assisted suicide law and the federal justice department at the time was threatening to convict any doctor who assisted a suicide. Even though this drug was used everywhere in hospice situations, our doctor was afraid that the death could be construed as being caused by dehydration because he would be unconscious. Finally, our hospice nurse went sobbing to the director who threatened to over ride the doctors orders. Turns out there was a drawer full of syringes of the stuff 20 feet down the hall from Mark’s room.

Three days later, my sister-in-law was flying out from Washington DC for the funeral which was to be the following day. Well three days later was Sept. 11th. Since she hadn’t wanted to bother me with the details I had no idea what flight she was on, no idea if her plane had crashed, if it was up in the air with an unreported hijacker. I remember watching the news with my best friend and shaking with fear. It’s the only time in my life when I literally forgot how to breathe.

Here’s the funny thing: after all that I wasn’t depressed. I was very angry, I missed my husband, I was heartbroken for my children who were just 4 and 6 and missed their daddy terribly. But I had a lot of hope for the future, I was excited about being a normal mom – I could read them Harry Potter! We could go to the zoo. I was excited about going back to school. So I think that, for me at least, depression has to do with a sense of hopelessness which I didn’t have and I sense of being trapped.

Three months later I was gobsmacked with this disease. I still wasn’t depressed though. I didn’t have the good sense to be, lol. I was still a very optimistic person. Those delusionary powers have gotten me through a lot. :)

I experience my first bout of depression after giving in to my doctor who insisted I was depressed. Of course I knew I was physically very ill but I was desperate for any kind of help and trust me, help wasn’t coming my way. Nobody believed me. I kept getting sicker and sicker and she just kept doubling the dose. I finally crawled my way to a psychiatrist who wrote a letter saying that I wasn’t depressed. I pulled of the antidepressants probably to quickly and became terribly, severely depressed. The every moment of existence is excruciating kind of depression. My heart goes out to every person who has to fight this in their life. It’s awful. I was lucky, mine eventually burned out over the course of a year but I can tell you it’s more painful than any physical pain I have ever experienced.

The time I was referring to in my post when I said I didn’t feel like living though was when I had a relapse in 2008. For several months I couldn’t even sit up for 15 minutes a day. So, I wonder about that. Is that really depression or just a terrible situation? Wouldn’t any perfectly normal person faced with devastating financial worries mixed with agonizing boredom mixed with physical suffering feel depressed? Is it really depression if you still want to be alive and active but you can’t? I don’t know and I guess it doesn’t matter because it feels awful either way. Although I suppose it does matter because most of us have this situational depression to some degree and in a perfect world we could fix some parts that make it bad – the financial worry, the isolation. I guess in a way that makes it a little more hopeful.

Now, I’ll admit it, I’m just plain depressed. Funny enough, I got that way after I finally received the diagnosis three weeks ago. I fought so hard to get that stupid diagnosis! I thought it would be my holy grail, my key to getting treatment and saving my house, getting a life back. But it didn’t work out that way and now I’m terrified I’ll never get treatment, I’m terrified I’ll have the diagnosis taken away too.

This disease is so tough. It seems like we share a lot of the same struggles. I read everyone’s posts and so much is so familiar. Like the isolation. I find myself becoming reclusive too, it’s just too hard physically to get out and it’s hard to be around people who don’t understand or don’t believe. Some of us have financial worries which are so wearing and causes so much fear. The randomness of the disease and the unending struggle to get through the simplest day, that’s wearing too. Annie, I you mentioned earlier that you thought not being able to work might be contributing to depression that you feel and I totally agree that losing that sense of accomplishment and self worth is so hard. Plus, there’s nothing to keep us busy. Finally, I too am embarrassed about my appearance. I worry about running in to people Iused to know. I gained 30 pounds when I got really sick in ’08 and sometimes the entire right side of my face falls down and I look like I’ve had a stroke. Equally difficult is when I look perfectly fine and people expect me to be fully functioning.

So ya, it’s hard sometimes.

Still, I have a wonderful life in a lot of ways. My children, my home, my friends, the forest around me. Oh, I could go on and on. It’s the prospect of losing when I have so much that can be heartbreaking, so I guess I should say that I’m really very forturnate. I just don’t want to have my children growing up while I’m lying on the couch, I don’t want to lose our home. But I do have so, so much that is good.

As for advice, the one thing that has really helped me is meditation. I know that sounds a little groovy, but it really has helped. During my last relapse in desperation I read a book called Full Catastrophe Living written by a person who teaches mindfulness meditation to patients with chronic pain and chronic disease. Even though it had been proven to help in studies, I was very skeptical. I mean, my life had been pretty rough! But it was almost miraculously helpful. Of course I stopped doing it a few months ago (why is it human nature to stop what is good for us? Lol). I need to start again.

That’s it for advice. :)

I hope this post hasn’t been too much about me. I guess I just wanted to explain what was going on with me in the hope that other people might feel less alone in this struggle with this stupid disease. The best part about all this by far is that we have each other to understand. I don’t know what I would do without this forum . . .

Ally

Well said Ally.....I wish we had an icon for a standing ovation.........

Thanks for sharing your heart with us.

:hug:Jujuan

Indeed - very well said Ally.

Sue

normal sadness is not depression
 

Ally,

over the last few years, I was "given" a myriad of psychiatric diagnoses,
to the extent that I thought of "volunteering" to participate in pshychiatric residency training, as they could actually see almost every possible psychiatric problem in one person! :Crowded:

or as one neuorlogist said to me, a while ago, almost apologetically- well, your illness did not fit any entity that we know, so the only possible explanation was that you have some emotional problems.

and I asked him then it means that your ignorance, means that I have emotional problems? obviously, he had no reasonable answer to that question. :Oops:

and it made more sense to you, that I subconciously "invented" an illness that would give me the amazing oppurtunity to "fall" into the arms of the head of my dept., have near intubation respiratory tests, find myself in the ICU, with a central line and emergent plasmapharsis, then to think that I may have some rare variant of MG, that does not exactly fit your book?

as you can imagine, he had no resonable answer to that question either. :confused:

I repeatedly refused to take antidepressants that were "offered" to me by caring physicians, colleagues/friends, who could not see me so sad.
and suggested that if it is so hard for them to see me like that, maybe they should take antidepressants instead.

I constantly explained to them, that it is completely normal to be sad, and concerned when you have an illness, that pretty much put an end to your blooming carreer, and I also tried to explain to them (without much success) that when you keep on telling a patient that they have emotional problems, then that in itself will eventually lead to depression, and their ability to trust themselves and their coping skills.

when one extremely "'smart" pulmonoloigst, told me that there is no way he can know if and when my shortness of breath, and feeling of suffocation is due to my illness or anxiety, I asked him how then does he know, when cutting an onion and tears start feeling his eyes, if it due to his grief on the fate of the poor onion or some physiological response to the juice of the onion?:Clever:

but, all the time I knew that I had no reason in the world to be depressed. I knew that my emotional responses were completely normal, and there was no doubt in my mind that my symptoms are not caused by stress or depression or ill defined emotional problems that conventional psychiatrists don't understand, or munchausen syndrome etc.
and I asked myself what would have happened if I did? how could I fight all this, if I did have reasons to be depressed, other then this illness and the way it was managed? what if I did not have my own clinical skills to trust?

Well, Ally, reading your post, was seeing someone who was able to do all this-you had very good reasons to be depressed, you did not have all the tools that I did, and still you were able to fight this, and not lose your trust in other people, not lose your love for your life and those that need you.
and you seem to be on the right track to recieve proper care.


you say- So, I wonder about that. Is that really depression or just a terrible situation? Wouldn’t any perfectly normal person faced with devastating financial worries mixed with agonizing boredom mixed with physical suffering feel depressed? Is it really depression if you still want to be alive and active but you can’t? I don’t know and I guess it doesn’t matter because it feels awful either way. Although I suppose it does matter because most of us have this situational depression to some degree and in a perfect world we could fix some parts that make it bad – the financial worry, the isolation. I guess in a way that makes it a little more hopeful.

I don't wonder at all. yes, every perfectly normal person would feel that way or even much worse, and yes, it does matter, because depression is a medical illness, like every other, and not being sad about the hardships of life. and just like you say-finding the way to fix some parts will definitely make it better.

all I can say is that you deserve the best possible help and support, and I do hope that your neurologist will eventually be able to see you as you really are, and be your true partner in this. :hug:

alice

Hi Ally!
 

Ally, I met a wonderful woman years ago who taught me meditation. When done well, you literally feel like your body is floating you are so "light." No one should put down meditation just because it sounds like some 60's fleeting fad. It is what Buddhist monks do all the time.

I am sorry you have been through so much. I can't imagine having a husband die and so cruelly. There are traumas in life that I'm not sure ever go away. We can lessen their impact but the mind is like a computer that only crashes after a stroke. That stuff is packed away in there and it only takes a dream or a photo or whatever to bring it out again. I'm glad you are able to come to terms with it though.

I agree with Alice about the "mood" thing. Too many people reach for drugs or alcohol or whatever else when they are in a bad mood. We all have moods. And it can be hard to tell what is a down day, a down month or something more serious that cannot be gotten over.

Depression is serious though. I have chosen not to do drugs, mainly because I can't/don't want the side effects. I eat good food, I sleep as well as I can, exercise to get those endorphins going, use as many coping skills as I can. But there are times when all that just doesn't cut it. And I get mad too, Ally. Especially when people don't see ME and only see my disease or react to my disease. Or when they try to "handle" me and tell me what I shouldn't be doing! :eek:

Susan, I am very much like you that way. Nature is my savior. I miss going on those road trips to clear my head. I'm lucky my backyard is so beautiful. And the toxins . . . I can't even deal with how people see them as so benign. I'm sorry you are having a rough time. You've been through more than most too and PTSD may be the hardest thing to get over. I sure haven't gotten over mine.

Brian, No problem! I wondered if that's what might be going on. No, you can't wave a magic wand and cure depression either. ;) But when you are depressed, using ALL the tools available to you is the best idea. Those aboringinal people probably don't have as many toxins and eat the "caveman" diet. ;) Don't discount diet though. There are good fats and bad fats. You can get too much B6, for example. Water can contain arsenic and other toxins. There are so many variables to food intake.

Thanks, Simon. It helps to say, at least for me, that "I'm not okay."

Erin, You are very busy supporting others, which is amazing. Now, how about us being able to support you for a change? :hug:

The problem with a chronic illness is that it is challenging on a daily basis. You can't "get over it;" it's your constant companion. And MG likes to get in the way of what we do every single day. Some days I literally scream because I can't take not being able to do what I want, or even need, to get done. I don't have kids but I do have a high maintenance dog with pancreatitis (not in a flare) who needs multiple feedings day (and night) of refrigerated food. It's exhausting.

This is not an easy issue. Get help, get as much help as you need and pull together as many resources to make yourself feel as good as possible.

Annie

Ally
 

I read your post yesterday and I haven't been able to respond as I felt any words I could use would not even remotely describe the admiration I feel for you right now.

You have been through a series of horrific events, which many people would not have coped with. How you keep going amazes me.

Thank you for sharing such a personal and painful story. I had tears running down my face as I read it.

Thank you for your courage in such adversity.

Thank you to everyone who has shared their story.:grouphug:
Love
Rach