There is a part of my life that only one person sees and understands: Rhiannon. I call it “The Aftermath.”
Today we ran errands. We left at 3:30 & were home by 7. Three and a half hours, made possible by ritalin (a stimulant to give me a false sense of being functional) and my pain meds (so I don’t notice the “issues” in many parts of my body).
If I had run into you at the grocery store, you would have told me how good I looked, how I must be doing better. You might not have thought I was chronically ill at all.
We race through errands, picking up prescriptions, dropping off trash, getting groceries. Often, I sit in the car while Rhiannon gets a head start on things, to minimize my time actually moving. We race, and cram in multiple things in one trip, because the clock is ticking: when the meds wear off, that’s it. I’m done. Crashed.
Three hours is about my limit.
Then we get home, and I go directly to bed. Taking the brace off my wrecked knee, it begins to swell & ache. My back is next: it knots in spasms of exquisite pain, and the inflammation between my ribs intensifies so that it is hard to simply breathe through the pain.
The wave of exhaustion is beyond most people’s comprehension. Too tired to move, every muscle aching, I lay in wretched misery.
But I cannot sleep. Too much pain, and too much ritalin left in my system. I do the only thing I can do: counteract it with muscle relaxers and sedatives, and focus on continuing to breathe through the pain. The heating pad, my best friend, sometimes helps.
Today, I am distracting myself with blogging, though just moving my thumbs slowly over the keyboard on my cell phone causes me more pain in my back. Lifting my cup of tea, kindly brought to me by Rhiannon, is almost more than I can do.
But I’m blogging for a reason. I want you to understand The Aftermath. This is the dark, painful truth of Fibromyalgia & Chronic Fatigue Syndrome. This is the part you don’t see, you cannot comprehend: that the person you saw in the grocery store an hour ago is now struggling just to breathe through the fog of overwhelming, radiating pain and utter exhaustion. I can only form the sentences slowly, my brain slowly grinding to a halt in thought. Words are hard find, sentences hard to form.
The Aftermath. And because of my illnesses, I will continue to suffer through increased pain, exhaustion, utter misery, for several days. But you won’t see that, because I do my damnedest not to go out more than once a week. The Aftermath from such foolishness can last for many days.
I do not want your pity. That is not why I am writing this.
I’m telling you this because very few people, even in my own family, understand or accept my limitations, the depth of my illness. That is one of the harshest parts of Fibromyalgia & Chronic Fatigue Syndrome. That is what splinters families. What leaves people saying “I saw her out shopping and she looked fine.” What leaves people thinking there’s nothing really wrong, that you just need to get out and do more, or that you are exaggerating your desperate situation.
It is hard enough to be ill, to feel like hell all the time. But feeling, knowing, that others don’t believe you, think you’re making it all up… THAT is even harder. It leaves you feeling isolated, misunderstood, and trapped in an illness that has destroyed your life.
I’m lucky. Rhiannon has grown up watching my steady decline, bringing me tea & making sure I eat, have everything I need, in a strange & sad reversal of our mother/daughter relationship. She listens to me note what hurts, tiptoes quietly when the migraines strike, watches the way I drive when The Aftermath starts but we’re not home yet.
Other people with Fibromyalgia and Chronic Fatigue Syndrome are not so lucky. The struggle to get a diagnosis, struggle to get their family and friends to understand, and many times find themselves alone, living, if you can call it that, with overwhelming exhaustion and incomprehensible pain. They die younger than they ought to, struck down with the heart attacks, strokes, or odd cancers that strike us. Or, they get tired… sick & tired of being sick & tired, and take their own life. But their “life” was really long gone, stolen by the misunderstood illnesses called Fibromyalgia & Chronic Fatigue Syndrome.
If you understand just a little more about what we go through, then this blog post was worth the hour, and the pain, it caused me.
I hope you do. For the sake of everyone out there suffering through these terrible illnesses.
I hope you do.