brain fog |

Victories. Auto-immune disorder, brain fog, and getting my life and art back.

Colleen Doran — Fri, 19 May 2017 02:33:33 +0000

Since late last year, I’ve been getting treatment for an auto-immune disorder, a disease which effects my endocrine system. I’ve seen a major difference in my struggles with brain fog and fatigue. After I first got my diagnosis and had a few weeks of treatment, I felt even worse. I wrote a number of posts on life hacks I’ve used with varying degrees of success in my art career, assuming the twilight awareness I experienced would be the way I would have to live forever. However, I’ve had little difficulty with brain fog over the last 60-90 days. With few exceptions, my brain is clear. I can now recall strings of numbers, dates and other important information in a way I have not been able to for almost twelve years. I don’t have to repeatedly check my plane ticket when I travel, I don’t forget where I put things. I can remember storylines and professional obligations. I don’t get upset like I used to. Almost all of my anxiety issues have completely disappeared. Nerves which kept me on edge nearly every day and made working on my art almost impossible have completely evaporated. Except for normal issues with “Holy cow, look at my work load,” I am chill again. Edema is way down. Facial swelling was particularly annoying and disfiguring. I’m back down to size 6 clothing, almost a size 4. Energy is up and down. Some days I feel as if I was never ill, and other days I feel completely wiped out. I still get dizziness and vertigo on occasion. I understand this is a normal rollercoaster event while the doc tries to figure out optimum levels for my medication. This could take another six months, and I’ll require semi-annual tweaks forever, unless someone finds a cure. Interesting how people tried to pathologize the way I was feeling, living in almost constant pain, when all I needed was a $10 a month thyroid supplement. Thanks to those assholes who declared that I was “neurotic”. Yes, Heidi, I mean you. My migraines are still with me, but not as severe. I’ve only had two major migraines this year. I used to get them weekly. I still get migraines about 3 times a month, but they are nothing like the ones I used to experience: one Maxalt knocks them right out. I might not feel well for a couple of days and need some rest, but otherwise, I just push on. I feel like I am being let out of jail. I am grateful for the many wonderful people who have discussed their issues with me. It is nice to know I am not alone, and also to know what I can expect in future. The brain fog has been bad, but the personality changes haven’t been fun, either. My family commented on how mellow I seem now. It was nice to hear. Over the years, I’ve become accustomed to taking everything slowly. While I still have to be mindful, I need to adjust my lifestyle, get used to a faster pace again, and challenge myself more. I’ve been so down for so long, I forgot what it felt like to feel up. For now I have to concentrate on getting a bunch of very late assignments back on track. I feel pretty lucky, and hope anyone out there who is experiencing the same symptoms I did will talk to their doctor about possible endocrine dysfunction. Graves Disease, Hashimoto’s Disease, etc. If your thyroid reading is normal but in the upper half of the normal range, you could be sick and feel terrible and your doctor won’t do a thing. My doctor made no effort to look further even when my thyroid reading was less than 1/2 % below danger zone. Until it suddenly went sky high, no effort was made to investigate further. I’m sure most people have absolutely no idea what their readings are or what to look for when they see them. I sure didn’t. I don’t think my doctor is a bad person, but when you’ve got a disease none of their other patients are likely to have, they simply may not know what to look for. I look forward to drawing all day again. To travel. To exercise. To reading books and remembering what I read. To getting back to my French lessons. Thank you to everyone for your support and patience. For all of you out there also experiencing chronic illness, most sincere hopes for a full and happy recovery. In other totally unrelated good news our weird rural internet, which has been costing me HUNDREDS of dollars per month (yes, I mean up to $350 a month for internet) has finally been upgraded, and we now get double the bandwidth. We used to get unlimited bandwidth after midnight, and that had me staying up until 2 AM most days trying to upload work or watch a video. I shouldn’t have to do that anymore, and I am thrilled at the prospect of saving up to $250 a month on ridiculous overage charges. That’ll help me pay these medical bills, for sure. Oh, and I’ll just plug my Patreon here. It’s pretty dandy, if I do say so myself.

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Brain Fog

Colleen Doran — Fri, 07 Feb 2014 22:47:30 +0000

You used to be able to do long division in your head. Now you can’t do simple math on paper. You always knew what time it was, never needed a watch, and had the entire television schedule memorized. No one bought a TV Guide because they had you. Now you can’t keep up with your favorite shows because you can’t remember the storylines. Or when they were on. You never had to study because one pass over a book and you had it down. Now you can barely remember what you’ve read a half hour after you put the book away. You write for a living, but you stumble over spelling words like “who”. Brain Fog or Cloudy Consciousness is a cognitive disorder caused by…something. …inattention, thought process abnormalities, comprehension abnormalities, and language abnormalities…reduces quality of life by impairing work activities, social interactions, and driving, but it does not effect basic daily life activities such as dressing, personal hygiene, eating, shopping, answering the phone, or taking public transportation…may even exhibit normal cognitive performances, but overall productivity may suffer from inattentiveness and fatigue secondary to attention abnormalities…(Doctors) have a tendency to “psychologize” it and misdiagnose it as depression or apathy. So, I’ve been struggling with this for over a decade, and did not get a diagnosis or adequate treatment until 2012 (UPDATE: diagnosed in part, but underlying cause not addressed until 2016 – auto-immune disease. Bummer.) It got bad enough that for years there, I was pretty much disabled, producing only a few pages of work a month. I was so out of it that I had trouble remembering things like my middle name. Every day was one long comedy of errors – variations of not being able to find my keys. By 2006, I thought I was pretty much done and would not be able to work in publishing anymore. A close relative also had the same symptoms, and, as I did, later developed severe migraines. (For those of you who have never had a migraine, chronic migraines are debilitating. Mine include migraine aura, temporary blindness, and vomiting. Hit with migraines up to 21 days every month, as a writer and artist, I was simply unable to perform.) He was diagnosed with ADHD and given drugs that made his problems even worse. Only after years of bad reactions to the medication did a doctor finally figure out the real problem behind his brain fog was chronic Lyme Disease. My issue was an even more obvious and common problem – an endocrine imbalance (EDIT: alas, caused by that auto-immune disease that went undiagnosed for years. Can you say bummer, twice? I knew you could.) Once that was addressed, most of my brain fog symptoms disappeared (They can go into remission as the disease does, and come back whether you’re getting treatment or not. I got gobsmacked Fall 2016, but feel better several months later. Hope springs eternal.) After years of unproductivity, I’ve published a number of books over just the last couple of years. Brain fog isn’t just forgetfulness: it’s living in a bizarre twilight world where you are half in and half out of consciousness. Everything seems grey, and you don’t feel the passage of time. ( I could not remember the month, day or year it was.) You float through life, but it’s not a good feeling. You have an almost complete lack of awareness. You’re there, but you do not process what you’re experiencing. What memories you do manage to internalize seem as if they happened to someone else. If you’re a high energy person like me, you feel as if you’ve had a personality transplant – not a good one. You are listless, apathetic, and you don’t have the energy to fight to get better. What’s worse is it may seem like depression or ennui to others, when what you really have is a medical problem no one has caught yet. So you’ve got people telling you to snap out of it as if you have magical powers over your thyroid or your progesterone levels, as if you can talk yourself out of Lyme Disease, Celiac’s Disease, or Lupus. After a few years of dealing with all this, you do get depressed about it in the end. Back in the 1980’s I had chronic fatigue syndrome (they call it myalgic encephalomyelitis now, I’m told,) and when I began having brain fog problems, I was terrified that the viral infection had returned. I’d been symptom free for over 10 years. However, unlike chronic fatigue, my brain fog had no accompanying flu-like symptoms or fever (EDIT: not at first. Later came joint and muscle pain, but I no longer run a mild fever, which I always did when I was first hit with encephalomyelitis. I ran a fever almost constantly for years. Researchers believe that encephalomyelitis, which is an auto-immune disorder, may go hand in hand with the Hashimoto’s disease, with about 20% of patients having both diseases. Hashimoto’s also runs in my family. ) I wondered if a series of personal problems hadn’t plunged me into a depressive state. Everyone feels sad when people die or when someone embezzles your money. Most of us move on. I moved on, but didn’t feel better. Whatever, I felt lousy and couldn’t get stuff done. I was able to get some relief from my symptoms with over the counter energy supplements and herbal remedies supposed to increase pep and attentiveness, like Black Cohosh and green tea. Back in 2010, I blogged about “losing my mojo” and gradually getting back in the game. Even so, I was only working at about half the rate I used to. Now I feel pretty darned good and am working at about 80% of my prior work capacity. I expect that will improve in the coming months. But I wish my doctor had found out what was really going on, oh, about ten years sooner. Because I lost a heck of a lot of quality of life in there. There are many medical problems that can cause brain fog. It’s hard to deal with because you feel so listless and out of it that you have trouble finding the motivation and energy to find out what’s wrong. You may have something that affects a lot of people such as low testosterone or peri-menopause, or a thyroid problem. Or you may have a disease no one thought to look for. If you are unproductive, people tend to dismiss that as a character flaw. At first, I wasn’t very kind to myself when this was going on. I kept thinking if I exercised regularly, or ate the right foods, or stayed motivated, I’d snap out of it. I thought I’d gotten lazy. I’m sure lots of people thought so. People would joke about my absentmindedness, and when I was at shows, I’d be embarrassed by my inability to add up a total on a purchase, or remember things I’d worked on. Clients didn’t appreciate my spacey attitude. Friends who used to chatter on the phone with me wondered why that stopped. People I met at conventions were offended that I couldn’t remember them. I’d screw up orders and commissions. I’d forget entire assignments. Now that I know I have an medical problem, it’s easier to take. But I have a lot of catching up to do. My income plummeted for a long time, my medical bills skyrocketed, and I’ve lost years of prime productivity. When I first mentioned my spaciness, dizzy spells, headaches and other problems more than a decade ago on my old (now down) blog, several of you figured it out immediately, long before my doctor did! But a couple of you blogged that I must be a drug addict or drunk. That was sweet. I forgot a lot of things during all this, but I remember you. Several readers who also struggle with brain fog ask me to blog about how I deal with the problem. Sometimes, not so well. Sometimes like a champ. These days I’m much better, because hey, we know what’s causing this and the fix is pretty easy. But it’s a question of maintenance and I still have brain hiccups. For whatever reason you’ve got your brain fog, your working memory is completely screwed. You have to reduce stress and replace working memory with organization. Get organized, stay organized, and keep notes and records on everything. You will not be able to remember things other people take for granted. Think like an engineer, and back up, back up, back up. Redundancy is your friend. This is why I beg people to follow up with me, and to never make requests of me at conventions or other events. I simply won’t remember them, and then I have to deal with these people being pissed off later. Keep a blog or private journal, save every email, take notes on everything, and keep them in an organized format to which you can easily refer. Don’t try to reinvent the wheel with list-making: keep to a simple, easy to follow routine. Let the people who need to know realize that they must follow-up with you. You don’t have to give clients your sob story: few people appreciate it when they feel guilted into treating you differently. Everybody has problems and some are much worse than yours. Just send a friendly note once in awhile to let your associates know to follow up with you. OK, I’ll blog more about this later. I promise to remember. Acephalous made Work Bird. Work Bird made Acephalous write a dissertation.

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