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.

Jujuan

Indeed - very well said Ally.

Sue

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!

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.

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.

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?

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.

alice

Hey there~!!

I just read and re-read your amazing post.......UNREAL!

You have been just a tower of strength. To put it mildly - you are my HERO!

I don't know how you managed to do everything you did with ANY sense of normalcy.......

You should write a book - I'm serious. It would be so inspirational!

You are a truly amazing woman....

Love,
Erin

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!

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?

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

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.
Love
Rach