Six Years of Exhaustion: Living With Chronic Illness

Having lived with chronic fatigue syndrome for six years, and fibromyalgia for at least four years, I wish I could tell you that I’ve made peace with my illnesses. Though I’ve made progress in how I manage my symptoms, I still struggle with knowing that This will never go away.

I’ve written before about managing my expectations, parenting young children, and various other ruminations on how I’d like to conduct my life around chronic pain, exhaustion, and brain fog. Rereading those posts now, what strikes me is that it is all very much a practice. When one practices at anything, no matter what level of accomplishment they achieve, the work is never done. There are setbacks; there are always ways to improve.

How can I look at my life as something other than a Sisyphean exercise in futility? By doing my best to take care of myself. This is my life. Here is my methodology, flawed and frustrated, but persistent in its execution.

Vitamins

Though I take two different prescriptions — one that takes the edge off my fibro-related pain, the other an antidepressant — I rely mainly on vitamins to get myself to a “somewhat normal human” level of functioning.

I often hear/read people putting all their faith in one particular brand or combination of vitamins and supplements, and if that works for them, great. However, it does little to console those of us who are working with a limited income. Take my suggestions as they are — only suggestions — because this is what is helping me. Your mileage may vary. As with any medical issue, consult with your doctor.

Every morning (or early afternoon) when I get up, I make myself coffee and breakfast, and in addition to my prescriptions, I take the following:

• 250mg magnesium (for muscle pain) – 1 pill
• 5000 IU Vitamin D – 1 pill
• Vitamin B-complex (the dosage varies, depending on brand) – 1 pill
• Multi-vitamin that also contains probiotics and CoQ10 (an antioxidant people with chronic fatigue are deficient in) – 1 pill
• Ibuprofen – 4 pills (or sometimes 2 Aleve instead)

That’s up to ten pills every morning, and that number is smaller now because I found a multi-vitamin that cuts out three other pills I was previously having to buy. I take these so I am able to parent my children, take care of myself, and to just get out of bed.

However, when I say “every day,” I mean when I can afford to be entirely stocked up on these pills. Currently, I am out of both magnesium and the multi-vitamin, and as a result, my muscle pain has somewhat increased. I hope to be restocked soon, but it is frustrating that my health is tied to my income.

Therapy

Being sick is hard on the mind, unsurprisingly. Because of my husband switching jobs, we no longer have health insurance, and our state only decided to expand Medicaid just a few months ago. Our children qualify for the state program, but we will have to wait until either he gets another job with insurance, or for the full expansion to take effect. In the meantime, I rely on our Center For Mental Health’s income-based program to pay for my therapy appointments.

Therapists vary in approach, of course, and the woman I see now is the third person I’ve worked with over the years. Her approach is more in the neighborhood of cognitive behavioral therapy, where I try to train myself to deal with my depression, pain, and other issues with a kinder, in-the-moment approach. It works for me. It’s important to have a therapist you like, and I like mine, though with my brain fog, sometimes I feel as though I lack focus.

That’s part of the problem — I always feel like I should be doing more. That I could be doing better at everything in my life. Six years is not a long time because I still have the memory of being able to do more. I’m still angry that I can’t. And I’m not done grieving.

Listening to my body

One thing I have become better at is pacing myself. I know to watch out for that “wall of tired” approaching, and when to cut off whatever activity it is that I’m doing. Do I do this 100% of the time? No, but I try. I have to surrender to rest because if I don’t, then I will relapse into worse symptoms of exhaustion, muscle pain, and cognitive difficulty.

Sometimes, hearing my body seems like all I can do. There are days when I want to go out, run some errands, or get some writing done, and all I can hear is my body saying NO. The physical stuff is easier to manage than the mental. I can loaf in front of the TV like a champ, but the writing is what I do. If I know I have a lot to work to get done, I have to take care of what I can physically.

Even if my sleep is often unrefreshing, I still need it, and lots of it. Nine hours a night seems to be the optimal amount, but seven or eight is manageable in the same way a “regular” person gets by on six.

I always eat breakfast, and I eat reasonably well. I mean, yeah, I love pizza and hamburgers and nachos, but I also cook with mostly whole grains, beans, and vegetables. I don’t obsess over the food I eat because I don’t need another thing to worry about. I know that my body feels better eating well, and I know how to cook well and within our budget. This goes a long way to fuel my cognitive abilities.

Still, there are days when my husband listens to me lament whatever I’m not doing or should be doing or some similar annoyance, and he has to tell me, “It’s okay. Just lay down. It’s fine. You don’t have to do these things right now.”

He’s wonderful, and I should listen to him more often when he says these things. Which brings me to…

Accepting Help

It’s okay to delegate tasks. I struggle with feeling like a burden to others because I can’t hold a regular job, and it’s easy to feel quite lonely with these illnesses because they are largely invisible (except on the days where I am in enough to pain to walk with a limp or move considerably more slowly). I require help with household tasks, and I let my husband do most of the driving because it’s just one more thing that might use up my energy. Trouble concentrating and operating a car are not very compatible!

Our kids are now 11 and 7, and they are able to do a few things for me. Sometimes it is basic cleaning around the house that they should help out with anyway, but sometimes it’s minor-yet-irritating things like them picking up something from the floor that I dropped because I’m having a dizzy day, and bending over is troublesome for me.

I want to be able to carry my own load, so to speak, but I can’t. It bothers me, but I am working on accepting that there is only so much I can do, and that it’s not the end of the world if someone else has to do it. That my husband is such a supportive force in my life helps beyond measure, but I hate that our task delegation is unequal. I wish it didn’t have to be.

Six years of exhaustion, and this is where I am at. I am better off than I was, but I still have a long way to go. Only so much is within my control. This is not an invitation for miracle cures, or what you heard that your brother’s girlfriend’s cousin did to “detox,” and this is not even really a cry of anguish. This is documentation, a moment to say that I’m still here. I may suffer, but I am not invisible. I am raging and sad, but I am still improved. Within this pause for honesty, I know I can carry on.