Now-Daughter R has not left her room for six months. She lays in the darkness all day every day, only leaving to go to the doctor for hormones or to sell things on eBay so she can get spells to turn her into a true woman. She is extremely depressed and complains of being suicidal (we’ve been to ER). I know it’s at least partially the hormones and believe she is undiagnosed bipolar, but she won’t listen and she is 19 so the doctors she goes to can’t talk to us, and in the meeanwhile. she tries to monopolize our time with drama withouth taking any of our advice. I know from experience she would starve to death if we didnt keep the fridge stocked – since she was a baby neither rewards nor punishments have helped, which was always a source of many parent-teacher meetings (she wouldn’t listen in class, and didn’t respond to various strategies on working with her such aS a reward or a punishment). I feel like she needs serious psychiatric help — even inpatient stuff – but doctors and hospitals and psychiatrists ahve not been able to help. Aaarghhh. Tomorrow I am going to start from scratch – I will start calling psychiatrists to see if anyone can help us make a plan for our daughter. I wish there was a clinic we could take her to, something like the Mayo Clinic but for severely depressed young adults.
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 🙂 ).
The past week and a half I’ve been exhausted. I hate getting out of bed in the morning, and dread looking for work during the day. Why? I don’t know. I just am. It might be a cycle in my chronic health issues and fatigue, or it might not be – I just have to continue to fight through it, althought it is exhausting fighting through exhaustion 🙂
P was a kid from another neighborhood but who’d we bump into from time to time in sports. THere were a million such kids who were long ago forgotten but P was memorable because he was a plus-sized kid (had metabolic issues) who was a fantastic athlete. He scored every point on his basketball team because of a deadly shot and hit long home runs in little-league baseball. When we were adults we played softball with him; he was still plus-sized and still a great athlete – he was a great infielder and hit long towering home runs once or twice every game. Later, he helped lead another team to a state softball championship… He wasn’t a happy-go-lucky guy, but *was* easy going and pleasant to be around, and I never remember him being angry or frustrated, not once… Just learned he is battling cancer that is likely terminal. Bleh. And double bleh.
Before my lung-disease diagnosis, I could do 140-pound bicep curls. Six months later, after treatment for lung disease, I was so weak I had to literally use two hands to shave. Yesterday, after 5 years of self-physical-therapy and very slow progress, I did 140 pound bicep curls again (without straining). It felt great to return to my old gym strength (although my every-day strength is far weaker than 5 years ago. There is no chance of me getting into a street fight 🙂 ).
I also was able to do 5 *slow, easy* reps of 4 sets of 405 pound (the entire stack) of leg presses. For some reason, my legs – which have always been strong for my weight/size — are suddenly freakishly strong, and I’ve gone from sets of 4 300 pound to 5 400 pound presses (with no straining) in just a couple of months. Anyway, strength isn’t that important to me, but it is nice to reach my pre-illness strength and it is fun to watch the numbers climb a little. I do have to be careful though – I need to keep my heart rate at a reasonable level and not get too into the additional reps and heavier weights.
Current numbers for my future reference:
- Honest assessment of appearance: thin, fit or trim. Up from borderline gaunt/skinny 3 years ago.
- Age: 48
- Weight: 159 pounds
- Bicep Curl (4 reps): 140 pounds.
- Leg Presses (5 reps, but need to go down to 4 to keep my heart rate low): 405 pounds.
- Bench Press (2 reps): 200 pounds.
- Shoulder Pull Down (or whatever it is called) (4 reps) 200 pounds or 220 pounds (3 reps).
I had fairly mild cases of Shingles twice before, but this stronger bout of Shingles is teaching me a few things about Shingles:
- It can cover a lot of the chest and back (not just a spot or two, but quite a few spots).
- It can spread to the face.
- It hurts to wear clothes over the Shingles area – like wearing winter clothing on a severe sunburn.
- The infected areas feel like I pulled muscles in those areas, so in addition to having a sunburn it feels like I pulled something in my back, chest and arm.
- It hurts to style my hair (literally, running my hand through my hair hurts my head).
- There are random shooting pains (like someone is stabbing a knife) at random spots in my body that last for a few minutes or more, move to another spot, then return again. The worst of these is in my ear, which makes me wince involuntarily.
- I am sweating profusely. I literally had sweat dripping from my ear just from standing for 15 minutes.
- I want to sleep.
- After 8 days, it is still going strong (the blisters have stopped growing and spreading but otherwise 8 days in I still feel the same I did on Day 1).
On the plus side, I always have aches and pains and fatigue, so in some ways Shingles impacts me less that way than it otherwise would.
Had a fleeting memory of my days on prednisone, and how I took on too much then had to pay the price 🙂
I had no idea when I went on 50 MG of Prednisone that it would make me crazy. It also gave me a limitless amount of energy. In those first days, I was literally sleeping less than an hour a day, so they put me on Ambien, but this allowed me to sleep only an hour or two, so they put me on ultrastrong sleep medication that put me down 4.5 hours a night almost to the minute. Otherwise, I was almost nuts with energy. Some examples:
- I had the idea that I could write a novel on my iPhone. So while the family played games over Christmas, I sat nearby (I couldn’t focus on the game) and typed several chapters of a book on my iPhone.
- I decided to coach my son’s basketball team. The problem was, the neighborhood already had a team. So I worked with the rec league director to recruit and create a new team of 13 year olds. I read a book on how to coach, created a website, wrote about the games for the local newspaper, and kept a daily blog no one read about the goals and practice plans. 🙂
- I volunteered to do marketing for my company. I generated a newsletter, built a community forum, came up with an in-depth marketing plan and read books about marketing, all at night or on the weekends.
These are just some examples. The real problem was, when they started to taper off my meds, my energy went the complete opposite way – I had none. Suddenly, I had no energy and was sleeping 12 hours a day and exhausted all the time, but still had to maintain all the things I’d volunteered for. I gave up the novel, but was still coaching and writing for the paper and moonlighting as a marketing manager – it was hell. 🙂
Yesterday I ate a protein bar I didn’t really want. I had a second helping of bean soup that I didn’t really want. I added extra beans to my tortilla so that it was overflowing and messy. And I went to the store to get a tub of peanut butter when I really wanted to sit at home, then layered that peanut butter on my food when I didn’t really want the peanut butter on my food. This was on top of my normal 3-4 meals. I also went to the gym to lift weights when I am battling Shingles and just wanted to rest. All told, I ate an extra 1000 healthy calories on top of a high calorie day (I eat about 4000 healthy/boring calories a day) and spent 45 minutes lifting relatively heavy weights (200 pound bench press, 130 pound bicep press, 215 pound lat pull down, 350 leg press). Despite all the food I eat that I don’t want to eat, I am almost always hungry – I feel hungry almost every waking minute, even 30 minutes after eating a pizza. Despite all this, this morning I woke up, weighed myself, and weighted 1 pound *less* than yesterday — 155 pounds at 5’11. Ugh. And people always tell me how “lucky” I am, and occassionally will comment that I look too thin.
Having grown up with a parent and her family who battles weight the other way, I know how much work and blood/sweat/tears goes into losing weight. It is hard, and often thankless and endless and downright frustrating. I also know from my own experience it works both ways – keeping weight on for some people is hard and thankless and relentless and occassionally frustrating work. And because I like to stay healthy, it is not like I get to gorge on cookies and ice cream and sausage pizza – I watch my intake of those just like a weight watcher would. But no one — not even my wife, who lives with me and who encourages me to eat more calories but comments how lucky I am – gets that. It is a lonely thing, fighting weight the “other” way.
Anyway, that is my version 🙂
I’ve had Shingles twice before and never knew what the big fuss was about it. The first was a small patch that itched a lot but otherwise I seemed fine, and the second time was similar but with a little more fatigue/pain, although I am always tired and in pain so a little more of that isn’t a huge deal. But I’ve come down with Shingles a third time and I am startging to understand the fuss. I have a series of red patches along my right chest and back (including under the arm) that flat out hurt, like a burn, and I am really sore. I am not sure if it is related (I am sure it is) but I am itching and tender at invisible places in m body: for example, my right tricep is tender (i.e. hurts to the touch) and itches but nothing is there. I have a few places like that on m body (left ankle, right shoulder, etc.). Some of those spots come and go, but others (like the ankle and tricep) are persistent… I am certain that I still have a fairly mild case, but at least now understand/get why some people are truly miserable with Shingles…
I visited the doctor on Friday (they squeezed me in since I was still in the 72 hour critical window for treatment), and I am on antiviral medicine which doesn’t seem to be helping but then again who is to say if it is or not (i.e. maybe it would be worse without the medicine). She also asked about my stress; honestly, I am in a very stressful part of my life (stress being relative). I have chronic health issues, am spending a lot of time in doctors offices while working full time with fatigue, we are having financial stress since Wife M is in school full-time and my earnings have been cut in half since my diagnosis in 2011, and my current employer is having serious financial difficulty which means I am likely back on the job trail again and explaining why I am on my fifth job in 5 years. Sigh. 🙂 The best way to cure the stress will be to get a stable job and to stabilize our financial situation (which will be much better next year when wife M has graduated). I am not bitter about anything – there is just a lot of stress I am trying to manage. 🙂
The last two times I had Shingles were in 1990 during college finals, and three years ago when I joined a high-stress company as a manager (I literally was thrown into the fire day 1 for a chaotic company).
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!