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Sadness, Frustration, and Depression

By Mary Schweitzer, copyright 1997
To all my friends online:
Winston Churchill used to talk about depression as the little black dog that followed him, sometimes far away, sometimes getting closer.

I think all PWCs (people with CFIDS/CFS/M.E) know that little black dog. I do. The irrationality of thoughts of suicide. The feeling that there are no windows, there are no doors.

We who are PWCs struggle with three emotions: sadness, frustration, and depression -- they are not the same, and the answer to them is not the same. But when we talk about them, doctors and friends seem to think they are the same.

Secondary depression is common in this disease, not merely because it is depressING, but also because the disease affects seratonin levels. So many of us take an SSRI or other medication to help keep the levels from being depleted.

There is also a vicious circle with sleep. Sleep disruption, the experience of unrefreshed sleep, is one of the main hallmarks of this disease (along with significant cognitive dysfunction and enormous fatigue). Studies have shown that alpha waves intrude inappropriately when we try to sleep; we never reach the levels of deep sleep.

It is in deep sleep that seratonin is replenished. So there again, a reason for low levels. But SSRI's tend to worsen the sleep disruption -- so many PWC's also take small doses of anti-depressants such as Doxepin or Klonopin -- doses so small that in some cases you need the liquid form and an eyedropper. It helps with the sleep.

However, since most of us also have problems with neurally mediated hypotension (NMH), we have to be careful about anything that lowers our blood pressure. So you can't take just anything at night, and you have to take the smallest dose that works. Hence beginning with the eyedropper.

NMH can lead to what feels like panic attacks -- but they are not. People with NMH cannot stand still for any length of time -- their blood pressure drops and they'll pass out. Standing in line, particularly in the heat; taking a shower -- these can trigger the NMH reaction and the patient feels a sudden, overwhelming need to SIT DOWN RIGHT NOW. Which feels like panic. It is a sense of panic -- your body knows if you don't do something you will fall. SSRI's won't help that type of panic; only treatment for, and adjustments for, the NMH can do any good.

We can be afraid of places like shopping malls -- but not because of depression or some other psychological reason. Rather, our balance is very bad (a quick test for CFIDS involves trying to stand with your eyes closed and one foot in front of the other, arms outstretched; PWC's can't hold it for a second). We are capable of lurching into things and people. Bright eyes hurt our eyes; loud noises are also painful. And if you get confused easily, you can get lost. Then, in shopping centers, you find yourself having to stand in a long line, still. It is all indescribably unpleasant; again, that feeling of panic, have to get out of here -- but it is not irrational in any way. It is a direct response to the symptoms of the illness. (One solution is to use a cane; a better solution is a wheelchair.)

Exercise helps depression -- but if you are very ill with this disease, you cannot exercise. We shift from resting to anaerobic metablism in two minutes. Exercise brings on a terrible relapse the next day, sometimes for a week. If it is primary depression, exercise will make you better. If it is CFIDS, exercise makes you very much worse. [Ironic that many of the PWCs I knew, such as myself, were physically active -- aerobics, nautilus, downhill skiing. Any of that would make me feel better. How I wish I COULD!]

I am being treated for, and have made adjustments for, NMH, so I don't have those panics any more. And I take take medication to prevent depression caused by low seratonin; I take medication to help me sleep. I don't have the irrational, unspeakable, CHEMICAL depression that I experienced at first with the disease.

But I still get sad. And that is natural. Of course I am sad. I am sad when my husband is on a business trip to a resort in Florida and normally I would have gone with him, but I was too sick to go. I am sad that when I do go with him, I am not the energetic, stylish person that was ME.

I am sad when someone asks if I have finished a research paper I started three years ago, and I have to say no -- I have not been able to work on any research in three years. I am sad when I go to a Villanova game and see the students there, and realize that there aren't very many left who would have known me, and in another year or so, there won't be any at all.

I am sad when I hear about an inaugaral conference in institutional economics at Washington University in St. Louis. I would have gone. I probably would have given a paper. But I can't even go. It is out of the question. I see it slipping away from me.

I am sad when there is a job opening I had my eye on for a long time, and I cannot apply.

I am sad because another ski season came and went, and I couldn't go. And because I didn't go, neither did the rest of the family, which also makes me sad.

I'm sad because the sun is finally out again and there's a mild wind blowing and my Irish setter is bouncing off the wall she's so bored, and I'd love to take her for a walk to the park and throw the ball with her. No can do.

I am sad when I hear all the stories of those who are suffering with this disease, and do not have the resources I am fortunate to have -- a family, a husband with a paying job, health insurance, long-term disability. I am sad when I read of yet another PWC who has lost the battle, committed suicide.

And I'm frustrated. There's so much I WANT to do, so little I CAN do. I want to be well! I get used to it, accept it, make the best of my life here on Internet -- and then something happens, and I want to SCREAM that I want to be well. I want to WALK. I want to DRIVE. I want to DANCE. I want to feel normal, just for one day.

And the PAIN days. I am lucky not to have too many of those. The constant ache gets to me, but it is the days with the pain, when you have to close the curtains and turn out the lights and just lie there, listening to a movie and imagining the picture. Just surviving through that day to the next. You spit at the wind and scream I don't want this any more!

And I'm frustrated when I have to constantly face my disability, constantly describe what it is I can't do, constantly worry about missing a form or a phone call, to keep getting the 3/5 of my former income from a disability plan I paid into, along with my employer, for a decade. I'm frustrated when I see on tv some thoughtless young announcer chirping that aerobic dancing can cure chronic fatigue syndrome. My God, child, don't you understand how badly I want to exercise?

I'm frustrated when I go to a ballgame and they've sold the handicapped seats to highrollers and an usher yells at me for just sitting in the nearest empty seat. I'm frustrated that I had to miss events at the Olympics because the accomodations for wheelchairs were not good, and some distances were just too far for me.

I'm frustrated that I have to ask family members to do things I used to do for myself. That I have to depend on others to go anywhere because I can't drive. That I'm 45 years old and less independent than my 75-year-old mother.

It is okay to be sad, and it is okay to be frustrated.

But if I dwell on the sadness and the frustration; if I think too much about "what if" I never get any better; what if I get worse -- well, SSRI's are not going to fix that. If I worry too much over some of the situations I know about, some of the people I care about -- it's too much, too overwhelming.

Being on-line, on discussion lists for people with this disease, really helps. Being able to SAY it outloud, to other people who understand, really helps. Really helps.

And there's something about internet -- I see all my friends out there on the 'net, so compassionante and kind, so interesting and varied -- all of you -- I would never have known you. I enjoy YOUR company, and then I don't hate myself so much for having CFIDS. Because you have it, and I like you. If I can like you, then I can still like me.

And then I can accept that this is me for a while. I don't know how long, and it's not my job to worry about that. This is where I am, and it's not such a bad place; I have never had such good friends in all of my life.

It helps greatly to know that if I hit a really dark place -- and you do -- it just GETS to you sometimes -- maybe the bad chemical days and then the frustrationn/sadness days slam into each other, or you do take a peek behind that curtain marked "future" and are frightened by what you see -- but I know, I trust, that you guys can kick me out of that mood. You can rein me in. Pull me away from the edge. As we used to say MANY years ago, "talk me down".

Downright depression needs therapy: medicine, and talking out. You guys are better therapists than anybody I know. (Lisa once said that she quit going to therapists when she figured out she was spending $100 an hour to explain CFIDS to a psychologist -- HA!)

If you feel suicidal IN ANY WAY -- CALL somebody. Or write someone on Internet. Join a discussion list and make friends you trust, who you can count on when it hits you at 3 in the morning. If you have CFIDS or FMS or post-poliio syndrome or GWS, join us on Sasy. That's why we started it. Because we lost Joan Irvine -- the little black dog caught up with her, and we lost her. We named it for her on-line handle, Sasyfras. We do not want to lose anyone else to this damned disease.

As for sadness -- I think it's okay to be a little sad. In fact, it's normal. A lot of what I do -- like this, or watch movies, or be with my family -- distracts me from the sadness, but I think the sadness will always be with me. On good days I trade it in for inner peace instead.

Hard for a very active person to accept quiet, but I'm learning.

But the frustration -- well, the best medicine for the frustration is Internet. For me at least. Sasyfras [a discussion list that is now defunct] and the old organization WECAN [June 1996 to June 1998]. Moving that mountain one bucket at a time.

I was going to write about the specific people I have met here on Internet in the past two and a half years, and what they mean to me, but I can't do it. Too many, too much.

I guess I can try: Phyllis, Sue, Lisa, Kay, Julie, Michael, Paula, Deborah, Margaret, Suellen, jpChris, Doc Elaine, DocAudio, Karajaal, Anita (from the old days), Bonnie, Johnobf, Rona, Kara, Kathy, Cyndi, Gayle, JudithW, JudyRN, Frank, Cindy, Gary, Gerry, Wanda, JimmyS -- so many of you -- and this is only the PWCs, and I know I have not remembered all.

This is what keeps the little black dog away: my family -- my husband Bob, watching my children Eric and Carolyn, our furry family members Maggie and Kelly and Skidmore --
And my Internet family, all of you.

I can be sad, I can be frustrated, and I can be depressed. But as long as you are there, I will be here. Count on it.

Thank you.


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