YOU ARE NOT ALONE - A companion online community discussion board for The Mental Illness Happy Hour podcast with Paul Gilmartin

I listener emailed me about the mental stress of living with this, so I thought creating a thread about it and other stresses might be a good idea. My heart goes out to those of you who have to deal with it. I know what it's like to have my energy zapped on a less severe level and it's maddening.

Paul

Thank you very much Paul. I do appreciate it.

I write this in the hope that somebody reads my story or even identifies with it. Any part of it, that is. Therefore I shall do my best to convey the message well. Chronic Fatigue Syndrome is a condition that riddles the patient not only by its severity, but also by the utter impossibility to describe what this illness really is like. Every case is a story of its own.

Chronic Fatigue Syndrome (or CFS or M.E.) is a set of conditions which debilitate the sufferer physically, by perpetual fatigue, typically with a sudden onset. Other symptoms are many: speaking from my experience, unrefreshing sleep, fever-like episodes, night sweats, increased sensitivity to light, respiratory and digestive issues. The mix is so broad, the definition or diagnosis of the condition - which may rather deserve the term 'set of conditions' or even more broadly 'set of symptoms' - is not something one can easily grasp, nor would I expect anybody to relate a hundred percent. The word fatigue itself does not do it justice.

Physical fatigue is something everyone battles from time to time. However, for me at least, this is not the issue. Mental exhaustion is what cripples one's mind. It is constant, omni-present and stronger than anything. Also, it is the part which gets difficult explaining. The blurriness. The term brain fog is the closest I've ever gotten to describing it, having used the term fog myself, long before I've discovered this formulation on the Internet.

I should mention that I'm currently 17 years old, male, and this condition has affected since approximately 4 or 5 years ago. Although the amount of time I can't give specifically, because it's subject to the very lousy memory I've had ever since the beginning of this.

Imagine you've just woken up in the middle of the night and went to the bathroom, with the awareness that you still have some good 5 or 6 hours of sleep ahead of you. You get up from the bed, walk to the bathroom, do your thing, flush, wash your hands and then return to your bed, shutting the door behind you and tucking yourself in comfortable under the blanket. All this you do with the intention to return to sleep immediately. You are not truly awake, and you know it. You need not to be. You are only that far from the unconscious to stay there for a minute and then turn off again.

Imagine, one day your alarm clock rings, but you never wake up from that state. You're conscious, but not really. The blur, the filter, the fog never goes away. It is there 24 hours a day. 7 days a week. Sleep paralysis of the brain, as I think of it, might give you some idea.

Eventhough you walk, you talk, you smile, you do your work at school or job, because you simply cannot afford not to, it is not it anymore. You're living in the constant fog, the moments fly away, as if past you, as if you were not part of the world anymore. It is even as if you were dreaming. Well, aren't you?

This is no hallucination. No, you know this is the real thing. But the feeling I can equate to being stuck in a cage. I can say I do not feel, and shrug at how cliché that might come across, but deep down, I know some part of it is already true. I don't know when I'll get my ability back, to live through life fully.

All the pieces of confidence or certainty you had formerly, all self-esteem, all motivation are now kaputt. From time to time, the motivation to get better lingers, and that is where CFS gets dangerous.

There is something wrong with you, but nobody can truly see it. You cannot put your finger on it. Your family, your friends, the doctor - nobody really believes. Your slow transition to a blundering idiot is now complete. No matter what you were before, what you aspired to become or what your convictions for learning, meeting new people and caring for your own good were. Just watch them flow past you, never to be fully recovered until this beast, that Chronic Fatigue Syndrome is, recedes. You can only hope that it does. Frankly, what else can you do.

If anyone relates, just let me know please.

Means a lot to me.

e.

E-

You are NOT alone. I was diagnosed with CFS when I was in med school. I thought that I just couldn't hack it and between the school, working 20 hours/week, and sleeping whenever I wasn't doing one of the above things (oh, and trying to be a good auntie/sister/daughter in my "free time"), I was flat out suicidal. But I was stymied because I knew that committing suicide was something I could never do, now that my sisters' kids were old enough to remember me. I couldn't do that to them.

I used to volunteer a lot to distract myself from the shitty feelings, the lack of money and the exhaustion, but finally I had to go to the doctor. They ran some tests and discovered that, in addition to a low vitamin D level, I had Epstein-Barr virus, one of the causes of Chronic Fatigue Syndrome and also mono. So, that very first "real" boyfriend I had in high school who gave me mono also left me with a lifelong version of it. At least I didn't get anything else from him. I just have CFS episodes that are similar to getting laid out by mono, and it usually happens when I am at my most stressed, because that is when my immune system is most susceptible.

One of the good things about what I do as a naturopathic doctor, is that I get to go beyond the pills and learn about alternative treatments for conditions. For my CFS, the protocol we use includes B vitamins, amino acids, and some other supplements and for me and a lot of my patients, it works really well to minimize the severity and lenght of these episodes. I would strongly suggest you look up a naturopathic doctor in your area and see if they can help.

I wish you a lot of luck with this and I want to reiterate that you are not alone, that there are things you can do to feel better, and that there are people out there to help you.
Best,
Dr. Katie

Hi there!

I was diagnosed with CFS as a child and just accepted that it was totally normally to feel so awful. Fast forward a bunch of years. In my early 20s I lost my job at the height of the recession. Knowing it was unlikely i'd fall into another job so quickly, I made a point to hit the gym everyday for as long as I could until I just couldn't anymore. At first, it started out really slow, 10 minutes max on a low intensity elliptical. After about a month, I was able to last for an hour at high intensity without slowing down. I felt pretty amazing. After hitting the gym for a couple months and seeing no results in regards to weight loss or toning, I headed to a doctor to have my thyroid tested. Honestly, I should've done this forever ago. Turns out, my thyroid levels were off the charts terrible. I ended up in the hospital receiving IV hormones along with a bunch of other things. All the symptoms you describe are indicative of something bigger. I am a firm believer that a CFS diagnosis is an end of the road answer when they don't really know what is causing your awful feelings. Don't give up. After my hypothyroidism diagnosis, a lot of people in my office began coming to me to tell me of their experience with hypothyroidism... and then I realized it is far more common than people think. If you can, go to the doctor and request that your thyroid levels be tested. Something one of my doctors pointed out that is a good way to decide if you have a problem is to grab your upper arm. If you're able to pinch the skin together, hypothyroidism might not be the problem. But if you can't pinch a small part of your skin, but a big chunk, or if your fingers slide over your skin, you might have hypothyroidism. It causes a lot of fluid retention when left untreated...so sometimes what people think is "fat" is actually fluid retention treated by medication. Fatigue is super common, as are things like hair loss, depression, inability to regulate body temperature.... definitely worth looking into!

Good luck!

Hey, eshkol.

I don't have this specific problem, but I can relate a little bit. I started experiencing severe insomnia my sophomore year in high school, and I spent about a month in a complete haze before I finally got on a sleeping pill that worked. The physical exhaustion made my whole body ache; the mental exhaustion blurred the world around me. I couldn't focus or really think about anything other than the need for real sleep. Everything made me tired: moving, speaking, even eating. I remember being so exhausted at times that lifting a fork to my mouth seemed like a Herculean effort. Fortunately, I was able to pull out of it. I don't know if medication is a possibility for you, but I do hope you can find something to help alleviate your symptoms. Checking your thyroid is a good idea. Several people in my family have thyroid issues, and treatment has really turned their lives around.

Best of luck. Hang in.

Greetings, Eshkol-

When I was first diagnosed with CFS when I was 25, I was in so much pain with so many different varying symptoms I didn't think it was possible to ever feel normal again. I went from being an avid single-track mountain biker, active bass player, and wood worker to major depressive who could do nothing more than stay in my bed wondering what was happening to me and wondering where all the doom coming from. It happened overnight. It was terrifying.

The first drug I was on for 'depression' was Zoloft. I was on it for about 5 yrs or so (if I'm remembering right). I had a brain fog all the time. I couldn't articulate my thoughts, nor could I really pay attention to active conversations without drifting off somewhere in my head. What made this equally terrifying was that it triggered my PTSD and I couldn't tell if I was disassociating or just caught in the fog. I mentioned Zoloft because it intensified the fogginess, leg cramps/restless legs (so did Prozac), light sensitivity (especially fluorescent) and I suffered from IBS. After I came off the Zoloft, the fog lifted a bit, but not for long.

The doctors were now telling me that I had Fibromyalgia. They used to call if Chronic Fatigue, they said, but this is the new label. At this point, I didn't care what they called it, I just wanted relief. I had just labored and muddled through 4 yrs of college, not remembering most of it. My brain fog wouldn't allow me to keep all these facts and notations and what have yous as memories. All that was lost. I still can only remember very vague bits of what I learned. It is extremely frustrating.

Now, at 43, I have been on Zoloft, Wellbutrin, Effexor, Paxil, Prozac, a couple different Tricyclics, Lexapro, and Xanax over the last 18 years (I may have left a couple out). Due to my adverse reactions to most all pharmaceuticals, I went off of them for good. I'm now taking supplements, seeing a chiropractor and a counselor, and feel better than I have in years. I still have a hard time with speech articulation, but the SAM-e supplement I am taking is starting to help. There are days I can find almost every word and I feel very present. We all still have our bad days, unfortunately, but c'est le vie, eh?

I want you to know that I really feel your frustration. Frustration for wanting to feel good, but not having a solid answer of how. Frustration for doctors who make you feel like your a liar (boy do I know that one). Frustration in waking up and feeling like you didn't wake up and you're literally drifting through your day. Frustration in general.

One thing I can say to you with total confidence, Eshkol, is this: You are an extremely articulate writer. You really let us know about how you're feeling in ever sense. Even if someone had no idea about CFS, after your post, they would be well educated about its effects. You are obviously very intelligent and I have ever confidence that you will pull through this. By this, I mean the horrible depression that accompanies our pain like a best friend. I don't want to be cliche and say, "You're young". But you are. Take every day one breath, then one step at a time. You'll find every one here at MIHH rooting for you and you'll also find us to be honest and compassionate friends who you can vent to and never feel judged or unsafe.

I'm really glad you wrote to Paul otherwise I wouldn't have the pleasure of knowing you.

I do relate, as do many of us. Be well, friend. Big, big hugs!!!
serious_oregon

I wasn't expecting such a heart-warming wave of response.

Thank you guys, so so much. You gave me a major kick to keep looking, and for hoping. I needed that so much right now.

Dr. Katie - mononucleosis, low level of vit. D, in addition to what I believe is called cytomegalovirus; that's a binding element between many of the cases, I believe, so in that respect, I have the same record. I've many appointments with a traditional Chinese medicine practitioner and a homeopathist to little result, but I will certainly research naturopathy and try to find someone in that field. One has to try a lot of different approaches.

I do hope you are feeling good now. I wish you the best in coping with your CFS episodes.

You mentioned that your suicidal intentions were averted by the fact that your 'sister's kids were old enough' to remember you. You wanted to be a good aunt. I found that beautiful. That alone is proof to me that you are a morally conscious, caring person. Yes, we all should care for our relatives' well-being, but the fact you were aware of what the implication of you taking your life would be, eventhough they were not your children... makes me just want to compliment you, in this somewhat fucked up manner. Thank you so much for your suggestions!

UrbanDweller - I have a vague feeling that I've first heard the word hypothyroidism on an episode of House and since then, never managed to spell it. I have read a bit into it now. Although, according to the symptoms, this condition is nothing of a complete 'match' for me, I will ask my doctor about it - after all, if it turns out to be a hypochondriacal assumption, this will be nothing new to her. That procedure of pinching a small part of your skin would suggest against this being my case, but I believe the suggestion is super-useful for anybody who's struggling with CFS-like symptoms. Thanks for that contribution.

I agree with you on that vagueness of the CFS diagnosis itself. I have always been hesitant to 'settle' with it. But after a few years of trying to find a name to label my condition, with some other conditions (the names of which I also find difficult to spell) ruled out, it seems for me to be the only thing which applies to me with very little inconsistency. I hope I will be able to find any other underlying issues which are there to be found.

I hope you're doing better now, and thank you for that post.

mouse - thanks for that. It gives me hope to read these concrete suggestions; I haven't gotten many of them in the past year, so I appreciate having that path to try out. The fact that you relate to that kind of blurriness which mental exhaustion brings, that alone feels somehow soothing. I keep reminding myself that these cases do exist, that this is not a creation of the mind. It is a real problem that we have.

Bless you, I believe you're feeling good with the medication now?

serious_oregon --
-- Your message brought me to tears. Thank you so much for this.

About the loss of memories, the mental exhaustion, the inability to concentrate, cognitive issues, the light sensitivity, the frustration: it feels so fucking good to be able to say that I understand. I don't have the means of checking whether your mental and physical state, your 'thing', is the same as mine. I've always tended to be somewhat skeptical in terms of making that judgement. But upon reading those words, I'm positive that it is. I have read testimonies with which I identified sixty, seventy, eighty percent, but never have I had the impression I have had from your post. This is it!

Many people would render the condition invalid just because you were able to go through 4 years of university with this. They do suggest that to me: I attend high school regularly, try to join my friends when possible out of school and engage in some kind of sport time to time. I guess what I'm trying to say, it works so tragically against our interest to try functioning healthily. We can hardly expect to be recognised as having a battle to fight, an actual disturbance in our body and our mind. It is a very particular, yet hardly describable handicap that comes in waves and is ungraspable. There is that subconscious feeling of not being 'objectively ill'. You helped me, right now, to kill that dark voice in me. As to the voices around me, I have to stop giving a shit about those.

Although I have resisted using any treatment for depression so far, everything about your condition, all the symptoms, are valid for me. PTSD has also been suggested in my case.

I am genuinely happy for you doing better now. It fills me with joy.

I feel this surge of impressions of mine may come across as comical or bloated or incoherent or momentary, but you've given me a whole lot of hope, and I don't know how to thank you enough! You may have given me the kick that I needed so fucking bad.

Big hug!

Thank you from the bottom of my heart.

e.

Eshkol-

Now I'm the one crying. Firstly, the fact that I gave you hope fills me with so much joy. I am so glad I could give that to you just through written word.

There is validation in knowing there is someone else out there who is experiencing these symptoms that I sometimes feel I have fictionalized. Simply because the symptoms have gone on for so long. I start to wonder if the symptoms are imagined, psychosomatic, or created through self-doubt. Am I just over-dramatic? You know as well as I do that the pain/feelings/emotions are all real. And it is really trying to live day to day when the people we are supposed to go to for answers make us feel like liars, hypochondriacs, or, worst of all, not worth their time.

In return, I want to thank you for giving me back some self worth that I thought was gone for good. I'm having trouble putting into words what I'd like to say because there is so much.

Please feel free to PM me ANYTIME if you'd like to talk. I think we could really use each other as a support, confidant, friend. If you have any questions, I'm an open book. This community is such a gift to us. Let's help each other to feel even better.

Thanks again for the kind words. Here's some more hugs----> HUG HUG HUG HUG.
serious_oregon

serious_oregon,

it's more than wonderful to hear you're feeling good about this. Validation is important... so much.

I'm eager to contact you; I'm so grateful this opportunity has come about, we should value the fact that we're not alone in this. I can't wait to share some of the struggles we have in common... to ease that burden, hopefully for us both!

My account right now doesn't allow me to send PMs for some reason; I've sent an e-mail to mentalpod@gmail.com to see if there's any way to resolve that.

As soon as I figure out a way to solve that problem, I'll let you know.

Looking forward!!!

A BIG HUG and best regards!

e.

Things're getting worse now. And perhaps they wouldn't be if I was clear about what is happening. But I'm not.

I haven't got a chance to get to know myself. I have no clear picture of myself and what kind of a person I am. Because it's been half a decade of a very bad dream.