Learning how to “better” manage brain fog

For me, there are many crummy things about chronic illness, but the second worst of them all — after fatigue — is brain fog, i.e. the much harder challenge of keeping a clear thought.

Time was before my illness that my brain would whir to life and I could quickly motor off anything I needed to.  Ask me the strategy to something, and I’d leap up on the whiteboard and starting jotting ideas down.  But now, keeping clear thoughts is difficult. Answering any question that requires me to go into the memory bank is a challenge, and anything with some uncertainty or complexity is a challenge unless I have time to process.  Spelling?  I used to be great, because I would literally picture the word in my head and recite what I saw, but now I don’t see the word and am kind of stabbing in the dark.

Needless to say, this has made my job as an analytical sales person in a cutthroat industry hell.  But I think I’ve developed a list over the past few years that has helped. I’m not 100%, or even 90%, but I’m getting better and I’v adapted.

Checklist in OneNote.  OneNote is good because it’s free and I can access it from my computer, iPad or iPhone.  What I do is make a checklist of each item at the office I have to get down, then I break it down to how much time to spend on it.  For example: Answer emails – respond during morning coffee.  Send out follow up reports from yesterday – 30 minutes.  Send out status check note to 500 customers – 20 customers a day…  I’ve noticed this is important – I’ll lose paper lists, or I start moving things around until it gets messy (I can cut and paste); also, I can keep a template that I copy and paste into a new Tab every day so every day I am starting with a fresh checklist.  Plus, my razor sharp memory no where I was on a task has evaporated, so now I can search in OneNote to find out what I’ve done on something.

Stick with the Checklist.  It is tempting that if I come to complexity in my checklist to pass it off until later.  For example, if “Respond to email” includes an email that involves research, my temptation is to push it aside until later the day.  But I’ve learned I need to take a short break, grab another cup of coffee, return and take the steps needed to complete that email.  If I push it off, I start to get overwhelmed and fight the urge to shut down.  So even it means taking a pause while I gather my energy, I do nothing else until complete that next task.

One Thing At A Time.  My days of answering email while on a conference call, or making a phone call while waiting for my computer to re-boot, are over.  So I have to focus on one thing at a time.

Take Breaks.  The days of crazy 12 hour days are over.  I have to take several breaks during the day to make sure I maintain the energy needed to keep brain fog at bay.

Accept the Inevitable.  I will never be as crisp, sharp and productive as I once was.  I can’t compare myself to the old me, which thankfully was 200% of most people (honestly).  Instead, I have to focus on doing the best I can with what I have now.  I this were a five-card poker me, the old me had six cards to choose from, the new me has 4 cards to work with (versus everyone else’s 5).  I can’t worry that I used to have 6 or that some have 5, I just have to do the best I can with 4 and realize that I won’t win as much as I used to. That takes some pressure off.

Lots and lots of coffee.  There is no way of getting around the fact that coffee is the new normal for me at the workplace.  If there are side effects so be it, but I have to have the energy needed to keep my job and pay my bills.  On the days where I need an extra burst of energy, I take a caffeine pill and pray for a “good” day.

My two cents.  Since life gave me lemons, I’m doing the best i can to make a decent lemonade.  (I’ve had to relearn how to do my to do list – I used to do it mostly by memory and prioritization, but that’s not possible anymore, and too long of a checklist is overwhelming 🙂 ).

 

 

Learning how to “better” manage brain fog

Managing Chronic Illness is a full-time job at times – I am in the midst of that time…

Every 6-12 months I have to go through a cycle of tests to make sure everything is stable.  They found some inflammation in my lungs, lymph nodes and muscles so I am in the midst of an endless number of tests and doctors visits right now to make sure all is okay and to determine the best course of treatment.  Tomorrow is another half day at the doctor, while squeezing in work before and after that…  It is exhausting trying to work full-time but also spending 10-20 hours a week in doctor’s offices.  On the other hand, it is nice to have healthcare available to me to manage chronic illness – most people in the world aren’t that lucky and would love to have my problem!

Managing Chronic Illness is a full-time job at times – I am in the midst of that time…

Had a great weekend last weekend in Arizona

Mom and dad flew Wife M and I down to Arizona last weekend to visit with them in there new place.  It has been wet and windy in Seattle so it felt great to get into warmth and sun for a few days, and mom and dad really spoiled us at the same time (took us to dinner, breakfast, etc.).  It was a nice weekend away and a much needed break, although I’ve been pretty tired this week (although wife M is telling me I’ve been really tired for awhlie now; hopefully it unrelated to the new spot in my lung :)).  

Speaking of lungs, I see my lung doctor next week, and am hoping the new spot they found in my lung last spring has resolved itself.  Have been truly drenching my PJs and sheets at night the past few weeks (have gone from waking up damp to waking up pretty wet) and again am hoping it is unrelated.

Had a great weekend last weekend in Arizona

Have to suppress the memory of feeling alone during my lung disease following the post-election outrage

It has been a little challenging to be around friends and family this week, as everyone is up in arms about Donald Trump being elected. Emotions are running very high, and people are posting all kinds of stuff and going to the protests and professing strong emotions/crying.  We are a funny breed – people are in near hysterics about our President, but with a few exceptions I heard little more than chitchat when I went through my serious lung disease five years ago (i.e. some family was there (especially my sister), my wife and kids were there of course, and a few friends reached out, but I definitely didn’t see an outcry 🙂 ).  Again, we are a funny breed – someone we know goes through a serious illness and we send a few “let me know if I can do anything” notes, but Donald Trump is elected and there is an outpouring of emotion.  It is hard not to feel something about that, in essence that my life is less important to most people than the presidential election. Kind of strange to think about, and again gives me a sense of perspective as to how much to invest of myself in those people around me.  And that I have to be my own best ally and best friend, and can’t invest my sense of self-worth in the emotions or care of the broader base of people in my life.

From my perspective, Donald Trump is less real and less scary to me as a person than the disease that lurks in my lungs and which can erupt at any time.  Donald Trump might be crazy, but he is far less likely to kill or maim me than the lung.  Thus, I feel a little less emotionally invested than the devestated people around me.  

Have to suppress the memory of feeling alone during my lung disease following the post-election outrage

Feeling physically miserable these past few days

My arms and legs feel soooo heavy and weak,my entire body is stiff and hurts, my vision is blurry, and I just don’t feel right.  It has gotten worse these past few days.  I don’t know what is going on with my body but I am feeling absolutely miserable.  I am glad that I am in the middle of some tests and in the midst of seeing doctors — timing is right by chance.

Feeling physically miserable these past few days

I’d be lying if I didn’t admit that the spectre of the new ground glass opacity in my lung wasn’t weighing on me a little bit, but then again… 

“There is a new ground glass opacity in the apex of the right lung.”  I would be lying if I said I wasn’t thinking of those words a lot this week.  After living 4 years with stable lung disease, I start taking for granted that the chance of relapse is there, but like the thought of dying it is such a distant thought it doesn’t weigh on me day to day.  But a new opacity changes things a little bit – a reminder that the woods will always be there, and that there is always a chance that I’ll have to venture in them again.  But, I had two other “scares” in 2012 and 2015 that turned out okay, so am knocking on wood for a third time.  It is not death that is so scary right now — it is prednisone and recovery from prednisone, which took two years of my life to recover from.  🙂  In the meanwhile, I’ll just enjoy each moment that the GGO is just that — a spot, a potentially harmless spot, and nothing more.  

I’d be lying if I didn’t admit that the spectre of the new ground glass opacity in my lung wasn’t weighing on me a little bit, but then again… 

Just read my chart from March, I have a new speck in my lungs they want to monitor

I was able to log into my health records for the first time yesterday and noticed some things.  First, in my last scan with contrast (April 2016) they noticed “Lungs: There is a new groundglass opacity in the right apex – they suggested a follow up scan in 3 months to see whether it had grown, was stable or had resolved itself.  Second, my pulmonologist was concerned that my “LDL levels (bad cholesterol) are high.”  He wanted to know if I was being treated for hyperlipidemia and asked for a follow up appointment (which I scheduled for NOvember).  

I feel like my health had been on a pretty good run for a couple of years where I didn’t have to worry, so to speak.  Was I in pain and exhausted and have odd things like soaking night sweats?  Of course.  But my health didn’t seem in imminent danger.  The new spot on my lung plus high cholesterol are a stark reminder that I can’t take things for granted 🙂

If I am honest with myself, I am a little worried, but only relatively speaking.  I’m not super worried, it is just on my mind.  But my therapist’s advice last year when I started back up with the night sweats and some of the coughing/chest pain again so was worried about relapse (which hasn’t happened, knock on wood), I can’t start worrying about things that haven’t happened yet. That was wonderful advice and I’ve learned to put those worries out of my mind until (and if) I am ever told by my doctor that he has concerns.

My GP wants me to see my rheumotologist again, but he was booked out for two months so I am going to a different one who has a stellar reputation. I’m looking forward to that and her thoughts.  I also love that she is female and non-white – I find that inspiring and more diversity is always good until such time as humans don’t see race/color/creed 🙂

Just read my chart from March, I have a new speck in my lungs they want to monitor