When you see me at an event or even just a restaurant, you might think that I’m doing pretty well. You might forget I have a lot of health problems, or you might even scoff and think I must exaggerate about them when I vent my frustrations on Facebook or turn down invitations. But while your biggest concern for a night out with friends is finding someone to watch the kids, I’ve likely had to make preparations days in advance in order to be functional for four hours in public. Welcome to life with chronic illness.
The Hours of My Day
Within the last few months, I decided to stop fighting against my body, and I stopped using the alarm on my clock. I stopped trying to get up at a societally-approved time each morning and let my body get as much rest as it needs. I do have chronic fatigue syndrome (CFS), after all. What I discovered is that my perpetual exhaustion was exacerbated by allowing myself only eight hours of sleep. My body needs just about 10 hours to feel rested. (And I need medication to feel rested at all, but I’ll get to that later.) So now I let myself wake up when my body is ready, and I just get a later start on my day than most other people.
I find my mind is much sharper now, and the haze of brain fog isn’t an all-day/everyday thing anymore. (It’s not gone completely, but you can’t win ’em all.) My muscles don’t feel as fatigued all the time, at least not right upon waking.
But 10 hours of sleep leaves me with 14 out of 24 hours. And it takes me about an hour for my pre-bedtime routine, so then we’re down to 13 hours.
And then there’s my pain and muscle fatigue to deal with. It’s not just arthritis, not just muscle pain, not just nerve pain…it’s all of that. My average daily pain levels have decreased significantly due to changes I’ve made over the past four months, but it’s something I have to keep on top of. One of the things I have to do each and every day is take a hot Epsom salt bath. This steals two hours out of my day – one hour in the bath, one hour recovering from being overheated, just lying in bed. I tried using lower temperatures for my bath water, but I don’t get the same relief. And I need the relief. Some days, I literally count down the time until I can take my bath in the evening – and these are days when I’ve done nothing more strenuous than sat at my desk to work on my computer.
So those two hours bring me down to 11 hours of functional time per day. Most people have 16 hours. And by functional time, I don’t mean full of activity. I simply mean awake, aware, and capable of speech. I start to wilt just three or four hours after I get up in the morning. I can still function after that time passes, but I don’t get a second wind until after I take a bath. So I get about five good hours each day, and not all of them in a row. It’s more than I used to have, though. If you see me out, know that I’ve planned my day in order to give you the best of my time.
Pills. I Hate Pills.
It might surprise you to learn that I hate taking pills. I’m rather open and honest about the amount of medication I’m on, and I even joke about it. But I’ve also had nights where I cry against my husband’s shoulder, hating the fact that I’ll need to take all of these pills every single day for the rest of my life just to be able to function at all. I have no illusions about my ability to cope with my anxiety, depression, insomnia, fatigue, pain, and other symptoms unmedicated. I have to take these things, or you may as well find me a nice padded room somewhere.
It all started so simply, taking one Remeron (mirtazapine) pill each day to treat my anxiety/depression and my insomnia. But I was constantly feeling like I was starving. Not just hungry…completely ravenous. I thought about food every waking moment of the day, trying to graze and ration my calories to avoid gaining 50 pounds, which is not uncommon for people taking mirtazapine. I couldn’t live with it. So my psychiatrist switched me to Effexor XR (venlafaxine) for the anxiety/depression and trazodone for the insomnia that comes with my CFS. That worked fine for a while, but your body builds up a tolerance. My Effexor dosage crept up, and I added Tylenol PM to help me sleep. My trazodone dose was increased as time went by, but I still couldn’t shut my brain off. So we added one of my Ativan (lorazepam) pills each night at bedtime, a pill I used to only take as needed for panic attacks, which wasn’t very often. Now I had a controlled substance in my daily routine. Sometimes, I still couldn’t sleep, especially when I was traveling for conferences or otherwise needed to get up at an early hour. The doctor prescribed me Ambien. Ambien works great, and never fails to get me to sleep quickly…as long as I don’t take it for more than four days at a time. After that, it becomes ineffective. So I have to ration and schedule when I take it in order to maximize my sleep in step with my schedule. I also had to add a nightly Benadryl to help with itching.
To summarize, my nightly pill regimen includes: Effexor XR, trazodone, Tyelnol PM, Ativan, Benadryl, and occasionally Ambien. That’s eight pills.
And then there’s the daytime.
My daytime regimen began this past fall after I got my 23andMe results and discovered the MTHFR mutation that was most likely responsible for much of my grief. I started taking methylfolate and B-12. It was a rough start, but once I got through the beginning stage, I was starting to feel like I had more energy. Further nutritional research led me to add Vitamin D and fish oil supplements, which also helped me start feeling a bit better. And my primary care doctor pushed me to get back on iron supplements to treat my anemia, so I started taking Feosol at her recommendation – an iron supplement that is supposed to be gentler on your GI tract. These are all non-prescription nutritional supplements to deal with specific deficiencies I have. They are expensive to keep up with, but there is a noticeable difference between how I feel when I take them and how I feel when I don’t. At least with the folate and B-12, they have a rather immediate impact on my energy levels – which I learned to my chagrin when I forgot to take them one afternoon and tried taking them an hour before bed. I was awake for hours.
The newest addition to my daytime regimen is Neurontin (gabapentin). After showing my psychiatrist an illustrated guide to my pain I’d drawn up for my next visit with my primary care doctor, he suggested I try Neurontin to literally calm my nerves. Not “nerves” like we use as a term for anxiety – the nerves that run up and down my arms and legs and throughout my body. He said to give it a shot and increase the dosage as needed to figure out what works for me. The prescription he wrote me says “up to three” tablets per day. Well, I made it to eight pills the other night, and I still went to bed feeling electrical pain in my legs. But that hasn’t been the norm in the week since I started taking it. (I just popped my second pill of the day while writing this paragraph because the pain is starting to creep up from my ankles again.) The pills work, for which I’m grateful, but it’s another one to add to my repertoire.
The daytime tally: methylfolate, Vitamin B-12, Vitamin D, fish oil, Feosol, and Neurontin. That’s six nutritional supplements and 2-8 Neurontin every single day.
I take a minimum of 16 pills every day, just to make it through the day.
What Not to Wear
My own personal life hacks can’t ignore my wardrobe. I can’t wear cheap shoes; my footwear needs to provide orthopedic support, or else it causes pain my my feet, ankles, legs, and back. I needed to stop buying novelty socks, trading them in for Hanes Dry cotton socks. I still like to wear my fun socks around the house, but if I need to do any amount of walking, I suffer if I’m not wearing the Hanes Dry socks. My impressive chest size requires me to buy “full coverage” bras in place of the prettier ones I used to wear. (I can’t afford $50+ per bra for the prettier full-coverage ones.) And I have to wear a bra all the way up until bedtime, because “the girls” are sensitive and can’t bear to brush against objects (my desk, the bathroom counter when I brush my teeth, etc.) unprotected. I can only wear cotton panties, too, and I need to be more careful about the elastic used for the leg holes, as my skin chafes easily even after going a size up to wear the waistband is slightly too loose. Vanity doesn’t allow me to wear sweatpants in public, but I change into them the second I walk in the door, to the relief of my waistline and my legs. Oh, and let’s not forget my stylish arthritis gloves.
Other Life Hacks
My sensitive skin and ornery GI tract require me to buy certain toilet paper. I bring a roll with me when I travel, or I suffer terribly. I use corn starch as a personal care product. I have no fewer than four types of topical analgesic creams in the house. I keep a bottle of emergency medications in my purse. I try to avoid foods containing synthetic folic acid whenever possible, but I do give in to cravings. I have a cane to help me walk when my muscles are weak and/or sore, but I haven’t needed to use it in months. I wear sunglasses even when it’s overcast because my eyes are hypersensitive to light. I prefer text and instant messaging to phone calls because of my intense phone phobia. I have a donut cushion on my desk chair, because even sitting hurts after a while. I avoid driving whenever possible.
I’m Fine.
So when you see me out, and you ask me if I’m okay, and I say “I’m fine,” please don’t follow up with, “Are you sure?” Chances are, if you have to ask that, I’m not actually fine, but I’m trying to fake it. Especially if we’re in a large group, or if it’s a really special occasion. I don’t want to be the center of attention when the spotlight should be on someone else. I don’t know if I’ll ever actually be fine, unless I change the definition of fine to mean I can power through a situation without medical attention, bursting into tears, or collapsing in heap. But I don’t want to feel like a burden to anyone by fessing up to how I really feel at any given time in a social situation, so if you’re really worried about me, ask me privately via text, email, etc. afterward. Sometimes delving below the surface of “I’m fine” would break my strength of will, so please let me keep up the polite fiction until I can extract myself from the company of others and fall apart in private. Because I want to be “normal” and try to enjoy my friends when I can. It’s why I might look for sympathy online when I’m in the privacy of my own home, but I don’t want anyone’s pity in public.
This is what life is like with chronic illness. This is just my version of the story, but countless other people are playing out their own versions every day, as well. We know our limits. We try to push them sometimes, to get a taste of “normal” life once in a while.