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.
Wolfdreams.... 
Hello,
Finding your blog was a coincidence, for those who believe in that, but I don’t, not really. So I am here and your words have touched me very deeply. I understand every single word. I salute you for having taken the time to write this.
The Aftermath. I know it all too well. I know everything you speak of, except I don’t have the precious little gift of more children. I have only one, who is grown, and has the diagnosis of schizophrenia, although, I’ve always wondered if it is instead Asperger’s.
I sit alone, wishing my family, my sisters or my mom would call. Wishing they understood better. Oh, they say they do, but they don’t and whenever they get mad, the truth comes out. Things like, “Oh, you sit and blog,” or “Well, we have to work,” and the last time one got angry, not so long ago, she said, “I didn’t know you had ever been sick.”
I’ve been disabled with Chronic Fatigue and Fibro for over five years, and before that disabled by severe depression for more than five years. A long time and now, I wonder where my life went. And –why do I keep staying here.
Maybe for my son. Maybe my two sweet dogs. But some days, I still wonder. It is too hard. I just can’t imagine the future.
I’m trying to be positive lately, but it doesn’t make the pain or the excruciating fatigue go away. It just gives me a few hours here and there of hope. I sure wish I could hold on to hope longer than that. Even a few hours of it is a good thing.
Sorry for such a long comment. I thank you. I wish you peace and many blessings. And your family too.
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i wanted to say thank you too for this fine post. it captures a lot of what we go through all the time. i have a partner of almost 18 yrs and have been sick for 15, and with depression and ptsd before that, so he’s been taking care of me most of our relationship. i know he benefits too, but how i with “the aftermath” weren’t so bad. and not just the aftermath, the actual going to and being there. i have pretty bad POTS, so i’m always nauseated with tachycardia. i go out to doctor’s appts, dentist appts. the last time i went to french conversation group for an hour it left me bedridden for a week. i think we stay so that our children won’t be left with a suicide legacy. seems like a good reason. but to be honest, that’s the only one i can think of. yeah, there’s xmrv but the forces are aligning to discredit us yet again and even if it succeeds, when will there be treatment and doctor re-education? no it’s not a pretty life. i spend my time writing poetry, translating french songs. but the pain is suffocating as well as the nausea. feel like i’m in a sartre novel… well, again, thanks. i read several posts: you are an excellent writer. xoxoxooxxo
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Thank you, Laura, for your kind words. I started my blog so my family could better understand what I go through, what treatments the doctors suggest, but now that it’s getting a wider audience, I find it really helps to know I’m not alone fighting this monstrous illness, that there are others, so many others, who feel the same things, experience the same horridness of condition that seems to go on never ending.
I’m sorry to hear about your struggles, and can very much empathize – I used to have POTS really badly, though it’s seemed to back off a bit lately, maybe from the aging process bringing on high blood pressure. I took florinef daily for years, after a tilt table test done at Hopkins in 1999, but when I started with a never-ending migraine that just got worse and worse until I was ready to… I don’t know, scream isn’t right. I wrote a long post about it, about discovering the daily florinef was now way too much and was actually contributing to the constant migraine – it can actually cause aneurysms and all sorts of life-threatening complications. Here’s the post I wrote:
https://wolfdreams.wordpress.com/2010/07/31/now-why-dont-she-write-july-events/
I just mention it because florinef was something I took for so long, and it’s this little bitty yellow pill, doesn’t look like much, but it was causing major havoc in my body. I now take a half a tablet every 1 – 2 weeks and that’s plenty, but the headache it caused has never gone away, just eased a little. I get migraines every couple days, and they can last for days, so get a lot of nausea and light and sound sensitivity – doesn’t make those trips to town for the essentials very easy since I never know what days I’ll be completely incapacitated by the pain, etc. Sometimes weeks will go by.
Anyway, my heart goes out to you and your partner, and I hope and pray as we all do that someday, someday soon, there will be an answer as to what causes this, and better treatment options. We’re slowing making progress – the new study on the spinal fluid proteins was one step on the road to validating CFS and chronic Lyme.
All the best to you – and wishes for strength and peace.
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very sweet and welcoming post. where would we be without each other. my virtual life is what’s really left of my life and that’s not too bad. i’m trying to get up more and i know i have to stop smoking: maybe between the two my heart rate will ease off too. i’m thinking about quitting as a way to reduce my carbon footprint (as if it’s not small enough lol) but it is incentivizing! i’ve got all the symptoms you mentioned except the constant headaches, all though i had them for a couple of years before dumbing down my pain. :>>)) i’m 1/2 way off oxycontin for 12 years, and i’m on a minimal dosage now. i seem to have hit a wall and the pain of the old days reinserted itself in exactly the same way it had 15 years ago. so i just stopped where i am for now because it just kept growing, slowly moving toward the back of that right eye of mine… at that point it’s like a big muscle contraction and that’s probably what it is. i’m thinking, some injury to my brainstem, and reasons to believe it. maybe xmrv + but not enough money to do it and hmo refusing. maybe soon… sending love and my own kind o’ prayers for your headache healing. L.U.V. ~laura
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Laura, did you know I recently went off the methadone I was taking for pain? I had been originally put on Ultram, then oxycodone, then oxycontin, then my pain doc switched me to methadone with oxycodone for “break-thru” pain. I wound up being on 50mg of methadone a day, and started sleeping more & more & more… sometimes for nearly 24 hours a stretch. They finally did a sleep study & diagnosed me with Central sleep apnea – the CNS was so depressed I was forgetting to breathe while I slept and never entering REM. January, ’10, I started decreasing the methadone & finally got all the way off it in November. The last bit was the hardest.
But I still take the oxycodone IR, and there’s just no way I can get off it – nor am I trying. I had forgotten how bad the pain could get during the years on the methadone – the stiff, achy joints, the all-over ache, trigger points, arthritis, and of course the headaches & migraines. You have to find that balance point, I think, between the level of pain & the sedating effects of opiates, although, for me, it seems like oxycodone actually increases my energy level. I think it’s because pain in & of itself is so draining, and it causes the very limited amount of cellular energy I have be expended in muscle tightness & spasms.
It seems like a lot of people get really wound up about opiates for pain, and have had many blog posts & discussions with family about the night & day difference in addiction & physical dependence.
I would surely have totally lost my mind by now if it wasn’t for the opiates to control the pain. Control is not really the right word – I am never pain free, but they at least keep it to a level I can mostly tolerate. Though there are those days when I point out “they shoot horses…”
Anyway, you hang in there, and you’ll be in my prayers, too.
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Thanks for sharing. Love and light.
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Hi Ash,
You describe the aftermath so well. I’ve had ME for 23 years and have been struggling with depression brought on by the benefit changes in the Uk.
Tomorrow my only child, my beautiful boy will be 33 the age I was when I got ill. He was 10 and was fantastic. I didn’t let him be my carer but he did look out for me. Then at 21 he was struck down too. He’s worse than me now. People, including friends and family, who claimed to understand how ill I was didn’t understand him. “Ross you’re young, you do it,” he was told constantly. They don’t get that if I can’t do it neither can he. He was even told to get a job so “he wouldn’t sit around all day thinking about his health”. Words failed me.
He is the only reason I am still here. He’s still his lovely, kind, humerous self but is practically bed-ridden. There’s just the two of us and we care for each other. He would make a fantastic husband and father but can’t get out to meet anyone.
if it wasn’t for the internet we would all be isolated. It’s good to tlk to others who suffer the same and understand.
I wish you all the best.
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Hello, Andrea, and welcome to my blog! Your story brought tears to my eyes… there are so many of us, and like you, I have a child with ME/CFS, too, the one mentioned in this post, Rhiannon. She became ill at age 12, but thankfully is not as ill as I am. She has had to do high school online, since she couldn’t handle the mornings, and the chairs gave her such pain to sit in. She is 18 now. She has been my carer, for which I feel very badly, but her older sister is in the military, and thankfully not affected.
Like you, my sick child is the primary reason I keep going – people look at her and don’t understand that she is ill, that she is nocturnal because of adrenal stress syndrome, that she suffers with pain issues and exhaustion, and has to stay within her body’s limits. We are hopeful she will make some more recovery – it seems that sometimes the ones hit so young do manage to go into remission as they get around 18 to 21. She can do much more than I am capable of, but is not nearly as well as we want her to be.
This is such an isolating life, especially for those who are homebound. The internet has brought me so many friends who do understand this illness, and what it’s like to have it. If you’d like to be friends on facebook, there’s a link up at the top right.
Thank you for writing, and sending you all the best ~ keep your chin up!
Ash
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Hi Andrea,
I thought of your comment here as I was taking a drive to the store early this morning. I haven’t been online much lately as life has been hard, so that’s how I remembered where I read your snippet of your life here in Ash’s blog.
Your circumstances sound so similar to mine, with different disabilities, but not that different.
I have an adult son diagnosed with a mental illness. I believe he has CFS too, but of course, with the MI diagnosis, getting a doctor to listen to me about this is so far, not happening. He has so many symptoms like me.
We too are pretty much alone and isolated. He doesn’t use the internet, yet, but I hope to get him to a class soon so he too can learn. We do get out, at Horticulture Therapy (when I can get him there) and sometimes a group that we meet with, but that’s it.
I wish so much I could meet other families like mine. I think Mothers and Sons get a bad dose of stigma in this country. People say oh, he shouldn’t live with his mother. If he was a female then I bet people wouldn’t say it.
I wish we could start some type of organization to come together. I wonder how many Mothers and Sons are isolated together, and feel like I do (and I imagine you might too, but am not assuming).
Anyway, I hope Ash doesn’t mind me leaving this reply on this post. (Please delete it Ash, if you think it is too far off subject).
I just had to communicate. Thanks for sharing a bit of your life.
Warmly,
Ash’s friend,
Michelle.
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I welcome all contributions, Michelle, especially yours. I had never thought of it from the mother-son versus mother-daughter angle. It does make sense that folks would see it differently. I’m sorry for that. Your son is so lucky to have a mom like you who has fought for his care & looked out for his well-being, even though you are very sick yourself.
*gentle hugs*
Much Love,
Ash
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Wow! No wonder I loved your blog when I first found it. A great read this post is, the second time just as the first was.
Thank you Ash. Thanks for your willingness to write these very important stories!
Your friend,
Michelle. xoxo Big hugs and Love to you and Rhiannon!
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