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

My body feels brittle these days

Knock on wood, I still look very fit.  I am a lean 160 and at 48 my stomach muscles are still reasonably prominent (although to say I have the same body as when I was 25 would be fooling myself 🙂 ).   But sheesh I am sore,and outside of the weight room I feel weak and my body feels whiny when it has to do anything.  Shoveling dirt last night was hard, and my joints and muscles feel brittle, like they are going to shatter like crystal, they hurt so much.  But, l need to look at the bright side — although I feel brittle, it is nice to look fit on the outside.  In fact, it is probably preferable for a vain person like me, since people leave me alone (versus saying, “You don’t look so great” like when I was in the throes of lung disease).  

My body feels brittle these days

Arm is acting wonky today

From time to time (beginning two years ago) my right arm will start acting wonky: it will twitch, the fingers will start closing on their own, etc.  When it first happened I called the doctor and he wanted to see me right away but was full so referred me to a peer.  She examined me at length and it was determined it was related to my C4 vert, which has spurs, probably related to my Ankylosing Spondylitis. Sometimes the arm is fine, but today it is twitching pretty badly, my fingers in particular.  It is impacting my typing speed, since I am typing random keys when I type so must make a lot of corrections. 🙂

Arm is acting wonky today

Ankylosing Spondylitis or Fibro is making it excruciating to tie my shoelace and lift a laptop today :)

Despite my health ailments, I try very hard to stay fit (I can’t take too much credit for it, it is just wired in me to want to move my body like some people are wired to climb mountains or paint pictures or collect stamps).  And currently at 5’11” I weigh 157 pounds dripping wet and can do 4 or 5 slow/easy/disciplined reps of 185 pounds bench pressing, 125 pounds bicep curling, 285 pounds leg pressing and 200 pounds lat pull downs, which isn’t too shabby all things considered and for a guy who doesn’t care too much about being strong or muscular (I just want to stay fit).

Yet today my Ankylosing Spondylitis and/or Fibro is especially active, and I could barely lift my laptop out of my laptop bag, and it was just excruciatingly painful to bend over (from a sitting positon) to tie my shoelace. How fascinating the body and health and illness are, where you can lift more than your bodyweight without straining or breaking a sweat,  yet lifting a laptop feels like trying to lift a truck, and trying to tie my shoelace feels like I was hit by that same truck.  Go figure.

Wife M wants me to see the Doc to make sure all is well.  I scheduled something on Monday morning.  I’m sure everything is fine – just another day in the life of chronic illness 🙂 

Ankylosing Spondylitis or Fibro is making it excruciating to tie my shoelace and lift a laptop today :)

Walking and more walking keeps me off the couch, but doesn’t seem to clear my head

For the past year or two I have been walking a lot.  I’ve have gone from 2 miles a day to 5 to 7 miles per day, and I walk every chance I have.  I think it has helped me physically in that it has increased my energy  a little bit (I am spending less time napping on the couch), but has not cleared my head.  In other words, I am a more mobile brain fog zombie 🙂  I definitely am tired all the time, with a bad day or two a week, and still have a lot of pain, but not hopelessly exhausted like I was two years ago.  

Walking and more walking keeps me off the couch, but doesn’t seem to clear my head

It has been 1208 days since I was told I’d survive – and I grateful for each one of them.

December 14, 2011 my pulmonologist was almost beaming with the news – my lungs were improving.  “It was 50-50 you’d improve,” he said.  There were some very difficult times in the months ahead – the post-prednisone exhaustion, post illness shock, medical bills, the realization I also had autoimmund disease, and the adjusting to the new less energetic me, but I am sooooo grateful, and I remember that every day.  Yesterday, walking in the warm sunny morning to work, I was really struck — for the millionth time — by how lucky I feel, and broke out into a happy silly grin while all about me people wondered if they were passing a mad man 🙂 

It has been 1208 days since I was told I’d survive – and I grateful for each one of them.

Life with Fibro and AS is a life of learning to live with – and accept — all kinds of strange pains.

You’d never ever guess in a million years that I was fighting lung disease.  And that I have fibromyalgia and Ankylosing Spondylitis.  That every single step radiates pain through my body, that my core fells like it has been pummeled by Ali in his prime, that every time I left my arms it feels like I’m trying to lift a MAC truck.  You’d think that I look a little stiff, but also that I looked fit and healthy.  I like that – it allows me to lead a fairly normal appearing life and allows me to “fool” clients and employers enough so that I can continue to work!

It’s funny the kinds of pains there are.  Sometimes every single bone in my feet and hands hurt.  Sometimes, it hurts in my ribs just from breathing. Turning my neck can take every ounce of being, and I didn’t know that the backs of my elbows could hurt so badly just from lifting a box of dish detergent.  Sleeping at night sometimes feels fine, and sometimes the mattress feels like a slab of rock where no matter what it simply hurts just to lay down.  Lifting myself from the car seat is agony, and sometimes it is almost physically impossible — it doesn’t hurt, it is just my legs (which can still press 300 pounds fairly easily in the gym) won’t lift the weight of my body.  How is it a person can out press much bigger and buffer people, but then can’t lift my 160 pound frame out of a chair?  Or that I can fairly easily do 125 pound bicep curls on the machines, but can’t lift a box of detergent with one arm.  Go figutre…  On the plus side, I’ll never be tempted to join a bar fight (not that I would anyway), since if I can’t lift a box of detergent how in the heck am I going to push around a human being 🙂

The first minute of walking or moving is usually the worst, and the frequent shooting pain when I lie still eventually passes, so I do all that I can do – I ignore it best I can and just keep moving until the pain becomes a charlie horse instead of a broken bone.  I’m feeling proud because after nearly 5 years I’ve been off my pain medications for nearly 5 days.  I hurt like heck, but I am making it, and it is good to know that I am sparing my kidneys, which are strained by these meds.  I feel very happy that I’m able to keep functioning despite my pain, and I feel very lucky because I truly believe it is a matter of luck – I’ve been wired to keep going despite the pain, and many people aren’t so lucky, or they are wired to fight the pain but honestly the pain with AS/Fibro is odd because there are times when slow movement and the inability to move is actually involuntary (i.e. making it a matter of mind of mind over matter to walk through the pain is a little bit like thinking the person can will themselves to hold their breath for 30 minutes – no matter how much will there is, it just isn’t physically possible 🙂 ).  So, again, I truly do feel very lucky (and I’m not just saying that)!  My annual trip to the lung doctor and rheumatologist is a reminder of just how lucky I am – there are truly some heartbreaking cases in the waiting area every time I visit.  

Life with Fibro and AS is a life of learning to live with – and accept — all kinds of strange pains.