I’ve been really tired and sore the past few weeks but this weekend I started to feel a little better. I think we were on vacation a few weeks ago and I overdid the hiking (hiked 20 miles one day, more than I intended, and hiked/biked every other day for several hours each day) then ended my vacation two days early to fly out to client meetings and which required me to get by 3 days in a row with less than 5 hours of sleep (not good when I have chronic illness). Then on top of that, Wife M was prepping for the MCAT and I think it was a heavy stress hanging in the house for several weeks. At any rate, her test is done, I got an extra day of rest, I even took a couple of naps between social events on Sunday, and I just starting to feel a little less achy and a little less exhausted. In a word, phew. It is truly awful feeling exhausted.
Wife M and I went to the Annex for a drink then to The Big Sick. The Annex’s cocktail was awful – I am not sure how a drink can be too bitter and too sweet at the same time, but it was. Wife M’s drink was too sweet. Won’t be going back there… We loved The Big Sick, which turned out to be a true story based on the Pakistani actor from Silicon Valley’s courtship of his girlfriend, where they fall in love, break up then she gets sick. We loved it – it was a touching, funny and enduring story about lovable characters, and I loved it much in the same way I loved the lovable people in Bend It Like Beckham from 10 years ago. A fun summer evening that ended at a reasonable hour (9:40pm).
Note: her illness reminded me of my mom’s illness in 2009, when she had to be intubated and was in ICU for several weeks where we didn’t know if she’d live, and my dad, sister, wife and I spent a lot of wrenching time together where we all really bonded.
This post will soujnd a little bitter, but if I am honest with myself that is probably how I feel 🙂
My friend B’s son is in the hospital with a potential fatal tumor, and while I don’t know his son (and feel awful for his son!) my first instinct was to visit Friend B for moral support. To be honest, I didn’t want to visit since I battle fatigue and my own health issues, but he did not visit me when I was in the hospital for a week with a potential fatal lung disease; but I thought it wouldn’t hurt to be the better person and to go, except I spent he a busy week with family commitments and frankly I am exhausted. So I texted him I wouldn’t make it. Out of curiousity I went back and checked my texts/emails from when I was miserable and battling lung disease, and not one of my three childhood friends (including B) checked in with me the entire six months i was sick. Not even a “How are you doing” although Friend B reached out to ask if I co uld help plan a surprise party for another friend. What I learned then was that I truly have two great friends who visited and brought food – but my childhood friends were no help.
So, I have this to say: I will not be visiting my friends when they are sick. I wish them all the best, but am not going to put myself out visiting. True friendship is about support, and I’d rather invest my time and energy where the support is potentially mutual.
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).
15 or so days into Shingles, the sores are healing but sheesh they hurt. IT feels like a combination of a bad scrape, bad sunburn and pulled muscles. It hurst to move and it hurts to wear clothes – unfortunately, both of those are necessary 🙂
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. 🙂
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!
My sister had twins over the weekend, which means I am an uncle. I am very excited about this. The good news is we saw them the day they were born and they are beautiful (of course 🙂 ). The bad news is that my sister hasn’t wanted guests the past couple of days, which means we haven’t seen the babies since delivery… As someone who suffers from post-illness chronic fatigue, I’ve had to put a lot of thought into how I can be involved – I just don’t have the energy to make meals, run errands, etc. But I do love babies and kids, so have decided that I will be available to watch the kids as needed, which is less stressful for me than cooking, cleaning and running errands. Right now, she doesn’t want guests, but I know from experience that after the excitement (and nurses) dies down, people watching the kids is a god send :)… My family — starting with my grandma — is strange about guests. They just don’t like having them. My mom can’t relax when she has guests, and is a wreck before guests and exhausted after them, and I know that my grandma was the same way (I remember her complaining about my aunts and other guests when they’d stay with her). I too didn’t look having roommates or guests in my early adult years, but with my very-social wife’s influence plus having a cabin where guests like to stay was able/forced to learn to relax and take guests in stride. Also, there was a wonderful wonderful wonderful Dear Abbey letter where a woman wrote that she lived in a remote area with 4 kids and 2 dogs so loved having adult guests, and they were welcome to stay and make themselves comfortable but they would just have to deal with the mess and the dogs etc. I love that letter – it reminded me that what is important is not having a perfect house, it is the people, and if having a slightly dusty house is what is required to relax around guests, so be it. I am glad I’ve learned to accept (and embrace) having overnight guests. I used to want to spoil them with good meals and a perfect house, but now have just learned to spoil them with my interest in them and embracing them 🙂
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.