---My "normal" interval between showers stretches beyond three days. (Before Illness, I showered and washed my hair daily, even when I had a newborn. These days, I'm doing well when I manage the every-three-days shower.)
---It hurts too much to hold a book, which pretty much kills my favorite pain distraction. It's just not the same for me to listen to an audiobook or podcast or watch TV.
---I find myself canceling and/or rescheduling doctor appointment because I'm "too sick" to get dressed and get myself to the doctor's office.
---I find myself having to pause on the stairs, and the more times I have to pause, the worse I am. When I can't go more than three stairs without stopping, it's a really, really bad day.
---I find it challenging to be awake for more than three hours at a time. When I have a flare, it feels like my brain just shuts off and I have no choice but to sleep.
---Gravity intensifies (or seems to) and moving takes more effort than it should. Sometimes, even just holding my head up or my eyes open feels like a huge effort.
---I can't focus on anything, whether it's following a convoluted description by Ellie of her day or watching my favorite TV shows.
It's been a rough week at the end of a rough month. Thanks to Jewish holidays, there were way too many long weekends during September, and even though Scott is the one who deals with the lion's share of supervising Ellie and keeping her busy and entertained, it all just took its toll on me.
That was topped by overbooking (by my abilities) the four day weekend Sept. 30-Oct. 3. Scott's parents came to visit for the first two days, and I fear they feel like they barely saw me because of my sleeping through lunch both days. But I've learned that while I'm capable of waking up before noon, it generally means I have to shut down and sleep the afternoon away. And if I get up when normal people eat breakfast, I'm turning into a zombie and having to head to bed well before lunch. :-(
On Saturday, I'd scheduled a swim playdate with one of Ellie's classmates, and although I didn't really feel up to it, I went along to sit on the sidelines and watch. I wasn't sure if the moms would be comfortable if I sent Ellie and Scott on their own, plus I like them and wanted to get to know them better. If it had stayed a normal playdate, which usually doesn't last longer than a couple hours, I probably would have done fine. But the girls were having fun and wanted to watch the new Tinkerbell movie
, so we ended up going over to their house after the swimming and ended up ordering pizza in for dinner and staying until we had to get Ellie home for bedtime.The next day, Ellie had a swim birthday party to attend for a different classmate, and luckily Scott was happy to take her without me. But some good friends were having an apple harvest party later in the day that I felt like I couldn't resist going even though I knew I'd end up paying for it in the end.
The apple harvest party was fabulous (just like the hosts :-), and I took one of what I like to call my "peppy pills" (Adderall, an amphetamine-based stimulant usually used to treat attention deficit disorder but in my case prescribed for fatigue.) The thing about the peppy pills is that while they help provide the energy I need in the present, they also allow/encourage me to ignore my limits. And that always comes with a penalty to pay in the days that follow.
And I spent this week paying that penalty, with pain levels through the roof and sleeping closer to 18 hours a day instead of my "usual" 12. And it's Friday as I write this, with another weekend beginning, and I'm still working on an energy deficit that feels like it's the size of a planet.
Sometimes I feel a little like Alice in Wonderland -- I take a pill to make me peppy, and then I'm too wired to sleep properly that night so I take another pill to help me sleep. My pain levels are high, so I take a pill for the pain, which helps me feel well enough that I do too much and then when the first pill wears off, I'm in a worse place than I started. I make jokes on Facebook about better living through chemistry (pharmacology, at least), but is it really better?
Sorry -- this turned into more of a vent than I intended. I apologize if I'm sounding whiny; I do know that I have it much better than many other people out there. It's just ... hard, sometimes.
I think bed is where I need to be, so I'll wish you all a good weekend, and thanks for letting me vent (and hopefully not attacking me for doing so! :-).
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9 comments:
I just want to tell you how helpful your "venting' is to me personally.
It helps me evaluate and identify how this chronic illness thing works.
We can't stop living and we can't just waste our lives waiting for medical magic but we have to figure what an acceptible trade-off is. sometimes you flare w/o a choice in the matter but sometimes with careful planning you can have a bit
of a wonderful event. I like to believe we and our loved ones will remember the moments and not the illness.You teach me patience and planning and how to live, in spite of it all. Yes, we are hanging on with our finger-nails but on the other hand we ARE hanging on. It is so very brave to drag yourself up to the computor and honestly relay what long term illness looks and feels like.Whining is when people who aren't facing what you face complain, you, my dear are just telling it like it is. And I thank you for it. c.j. boehle
This is your blog...you have every right to express how you feel!
I do want you to know that your post worries me. It sounds like your fatigue is worsening significantly and your current treatments/approaches don't seem to be working. I know that can make things even more frustrating and I worry further about how they are impacting your overall mood. Your writing seems hopeful. I just know how badly a longterm low can make things worse.
It makes me want to go to OR and take you to every doctor, pain clinic, and health center we can find until we can find someone who is passionate about finding new approaches for you.
You didn't ask for advice but I'm putting my two pennies here since travel to OR is not in the cards for me right now: Go to your PCP and say - Game Over. Time to try a new approach. Start all over with the pharmacology because it's not helping. You deserve better.
With hugs and support,
-Q
Aviva, so sorry that you've had to deal with the "running out of steam' syndrome. It hits even harder when you're already running almost on empty. I know how you feel, especially since I've had Addison's on top of my CVID & Lupus. I just have no push left. Canceling doctor's appointments because I am too sick to dress or sit in the car happens all too often.
I'm sorry that you missed time with your in-laws, but I think it is good that you can sleep extra when you're not well. One of the fun neurological symptoms of my Lupus is severe insomnia - I often get only 3-4 hours of sleep per night. sometimes for weeks at a time. I'm sorry that you have so much fatigue & sleepiness, but try not to berate yourself for needing the extra sleep.
It's difficult to keep a balance between activities and trying not to have to pay for it or make yourself worse. I remember those days. Right now, I'm pretty much stuck at home all the time. I'm glad when I can function enough to work on some crafts (or get that shower in). Or if by resting all day (really not by choice), I can help Dennis fix dinner.
I hope this month is better for you.
Sharon
I would seriously question why a doctor is prescribing ADD amphetamines to "pep someone up". That's not what those are for. That's the same as prescribing narcotic pain medications to "make someone feel high" or "get through a stressful day". Adderall is a controlled substance with a high potential for abuse in the same class (schedule II) as narcotics such as oxycontin. Just sayin'. People who read this blog shouldn't think that feeling tired or unable to accomplish everything you want to accomplish in a day is a reason to take Adderall.
C.J.: Thank you! You just made my day. Heck, probably my week! I can't tell you how much I appreciate you taking the time to write such a supportive comment. And I hope you're right -- that we will all remember the special moments way more than the ones that I can't climb out of bed to participate in!
Q: I <3 you. Let's make a deal -- when we both get our mystery illnesses figured out and under control, we should figure out a way to meet with our families. I think it would be so cool to see our kids play together. :-)
And you have blanket permission (and encouragement even!) to offer advice whenever and wherever you feel able.
And I took your advice when I had my appointment yesterday with my internist, and we have a plan. At least sort of. :-) She wants me to take Adderall daily instead of on "special occasions." And I'm supposed to call in one week to report on whether it's helpful or not. She hopes that if I take it regularly (and earlier in the day instead of waiting until I wake up naturally), it will stop impacting my ability to fall asleep that night. We'll see. And she apparently nagged the folks at OHSU's neurology department, who have had my chart for a month but hadn't allowed me to make an appointment. I got the call today that they had agreed to see me, so I'm scheduled on Nov. 3. Cross your fingers for me?
Nurse K: I'm on Adderall because I had an allergic reaction to Provigil. Yes, it is an off-label use, although the FDA is apparently considering approving it for use for patients with chronic fatigue issues. It is already approved for narcolepsy and is fairly commonly used for patients with Multiple Sclerosis. A neurologist diagnosed me with idiopathic hypersomnia after a sleep study that included (darn, I'm forgetting the medical term) a full day of them giving me a chance to sleep every two hours. According to the report, I fell asleep within 3 minutes each time. But I don't have narcolepsy. My 5-year-old knows Mommy is always very, very tired and needs lots of sleep, and that I take medicine that helps me to approach being functional. Yes, I call them peppy pills, but it's more than a typical mom trying to cram too much in a day.
Btw, I don't know if you ever checked back after the last time you left me a comment. But those symptoms you thought sounded like normal heartburn? Turned out to be gallbladder problems. I know about killer heartburn, since I have it despite a fairly high dose of omeprozale ordered (and monitored) by a gastrointerologist I've been seeing for a decade, and I knew that wasn't it. Now was it a panic attack like the patronizing jerk who responded to my husband's 911 call. (Which, btw, we only did because a call to the on-call doc insisted we do rather than just heading to the ER ourselves.)
So no, I don't mean to imply that Adderall is something that people should take for fun or so they can function on less than a full night's sleep. And my doctor doesn't hand them (or narcotic pain meds) out like candy. But like many, many medications out there, there are legitimate off-label uses for it that are commonly prescribed by responsible, good doctors. Just sayin'.
SharonMV: Thank you for your empathy! Although I wish no one felt like this, it's comforting to hear that other people go through this too and make similar choices. I love that you sometimes make the choice (or your body makes it for you) to rest during the day for the bit of quality time with your husband. Helping him make dinner might not seem like a lot, but it's a bit of normalcy that's too often missing for those of us with debilitating chronic illnesses.
Well this post, to me, reads like a post of a person addicted to or, maybe better said, too reliant on drugs. Not showering, not being able to take care of the basic needs of her child, trouble focusing, taking some mix of uppers and downers, being obsessed with pills and illness, crashing for 18 hours after getting high on amphetamines for a social gathering...
I only read occasionally, but I hope you have someone with a PhD after their name to talk to regarding the parenting issues at the very least. I don't mean that in an insulting way, but, I mean, what would happen if Daddy wasn't around? You need to be able to provide basic hygiene to yourself and beyond-basic care to your daughter. Mystery illnesses really aren't an excuse to not be doing this.
Random story: In nursing school, this classmate of mine babbled on all the time about her various illnesses, one of which was "chronic fatigue syndrome". Turns out she worked 40 hours a week and went to school full time as well. Sorry, honey, that's not an illness, that's called working too much. Point being that anyone can call someone "CFS" and that doesn't mean that's really what the problem is.
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