They say you shouldn’t blog when you’re angry. And I’m angry. Probably mostly from the amount of Ritalin I’ve taken today, but also a lot of built up anger. Built up over years.
I need you people, my family, to understand something. And it seems like, with one exception, you don’t.
What I need you to understand, and fully comprehend, and ACCEPT, is that I’m really, really sick. And I didn’t ask to be this way, nor do I want to be this way. I’m doing everything I can think of or learn of to get better. I wouldn’t be shooting a quart of coffee up my ass every day if I wasn’t trying my best to get better.
But I don’t feel like you really understand this. So here it is, plain and simple:
You know how you feel when you have the flu, the really bad flu, where you’re in bed for two weeks and it’s a huge effort just to get up to go to the bathroom, and you’re so tired you don’t even feel like watching TV? And you have a constant headache, and fevers & chills & sweats, and you just plain ol’ ache in every bone & muscle of your body, and nothing helps it feel better? You just want to lay there and not move at all because you’re so tired?
Can you remember being that sick?
That is how I feel every damn day. Some days are a little better, in that there’s a little tiny bit less pain, or a little tiny bit less total exhaustion, and some days are worse, where the pain takes over and is so excruciating I can barely stand it, and I’m so tired, so physically exhausted, that it’s an effort to even breathe.
Every. Damn. Day.
For years.
The docs give me all these meds to try to make it better, but they help only a little bit. My adrenal glands are burned out.
On days when I just HAVE to do something important, like go to the grocery store, there are meds for that: Nuvigil, a drug used to combat narcolepsy, and Ritalin, which acts like speed in the body of someone who doesn’t have ADD. I hate them. I hate taking them. They make me feel wound up and ache even worse, make me agitated and emotional and generally a wreck, but they do keep me awake, for a little while, and moving, as they flood my body with something, god knows what, to get it going. To get it to burn the little tiny bit of cellular energy I have managed to store up after days of doing nothing at all but laying around feeling like I’m too tired to move.
The other down side of these stimulant drugs is that they give me the very false sense of being able to do things, to move around and be active, go shopping, or drive, or go camping once in a blue moon, or clean my room. But this is a false sense: when the drugs wear off I crash, hard, like a car going full speed into a brick wall. My body just quits.
And then there’s the payback. See, one of the distinguishing features of Chronic Fatigue Syndrome (CFS), is that exertion causes a worsening of symptoms – a worsening of exhaustion & pain – that lasts days, weeks, sometimes months. A flare.
So here’s the thing. I feel as if, despite my being ill all these years, that I am being BLAMED for being sick, for feeling like crap. BLAMED for being too ill to go somewhere, or it taking me 5 hours to make a round trip to home because I have to lay down and take a rest once I get there.
My mom lays in a hospital bed and reports being short of breath, being weak, and we all listen and are concerned.
I mention being really tired, and how it’s going to take another dose of Ritalin to keep me going (which I’m not supposed to take at the same time as Nuvigil, BTW, but desperate times call for desperate measures) and suddenly I’m accused of laying a guilt trip on people.
WTF? Sorry, folks, but I just don’t get it. She’s sick, we all listen and commiserate. I’m sick, and I feel like no one believes me.
Maybe it’s the Asperger’s in me. Don’t know.
But what I need you all to know, and understand, is that I’m still fucking sick as hell, and instead of blaming me for missing things, and laying a huge guilt trip on me about that, or acting like I’m just goofing off, when it takes me a long time to get something done, I need you to listen when I say I’m tired, or I have a migraine, or I just can’t do any more, and understand that I don’t want to be saying that, that I want more than anything in the world to be well and full of energy.
“Whatever doesn’t kill you makes you stronger.”
Right. Well, this damn CFS, Fibromyalgia, Lyme, Epstein-Barr, etc., hasn’t killed me. What it has done is make me strong enough that I at times, with the dubious help of Nuvigil and Ritalin and caffeine, FORCE myself to do things that need to be done. That HAVE to be done.
And you see me doing that and think, gosh, she looks well, and she must be doing better. And I am doing a little better, since starting the coffee treatment and stopping the damned florinef. But the word “little” is the key. Instead of spending every moment of the day in bed, I can force myself to get up, occasionally, and do things. That doesn’t mean I feel well. In fact it virtually always means I feel worse.
And it means I’m going to feel worse for days… weeks… or maybe months, depending on how hard I’ve been pushing myself.
Frankly, I’m terrified of what is to come after the last two weeks, of taking those wretched meds nearly every day, taking more than I’m supposed to take, DOING more than my body should be doing.
There’s going to be hell to pay. For every moment I’m up and taking care of something, and driving myself to keep going, there’s going to be hell, and it’s going to last a long time.
Because I’m sick, family, and it’s time you understood it and stopped treating me like I’m just lazy or something.
Wolfdreams.... 
Oh, Ash, I cannot possibly imagine what you must be going through. Pain itself can be exhausting, as can the emotional toll. Sending hugs and prayers your way.
~Pamela
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you have every right to feel mad, Kelly! being sick is exhausting. Being responsible while you’re sick just makes you sick for longer. Every mom should know that one! I can’t even begin to imagine what you’re going through, but it hurts me know know how long it’s been going on! I look forward to the day when we can finally get together, but I know how much it will take out of you, and will be patient until you’re up to it. Until then, there’s your blog, facebook, cell phone….Please take care of yourself. Love you girl!!
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You know, I wasn’t quite finished with that before I posted it… oh well.
Here’s the P.S.:
I don’t normally take the stimulant meds more than one day in a row, two days at the most.
I don’t normally go anywhere more than one day in a row. Even if it’s just to the grocery store, or the doctor, I come home and go to bed, and stay there for a couple days.
In the last 15 days, because of my desperation to 1.) clean up my room, 2.) come take care of my mom after her first hospitalization for vertigo, 3.) take Rhiannon on our annual camping trip so she could actually get out of the house & be around other human beings, and 4.) come back early from camping so I can take care of my mom again while she’s hospitalized, I’ve taken the damned meds 14 days out of 15.
What I need my family to understand, especially my brother who’s very busy with work but who is HEALTHY, is that I am seriously going to be in major health trouble from the pace I’ve been keeping.
When I say “seriously” I mean as in, I’m going to have to be in the hospital, too, or I’m going to be in bed for months without getting out, or I’m gonna have a wreck from driving when I’m so exhausted I can’t see straight, or I’m just gonna collapse physically. At the very least, I’m losing all the ground I had gained in the last month in my effort at beating this.
We were talking about death last night at the hospital. And I said I’m not afraid of death, and in fact would welcome it with open arms at this point, which drew gasps of “take it back” from mom & her friend Jody. But honestly, folks, it’s the truth. Were it not for Rhiannon, being so young, and needing me, I would have ended this charade of so-called life a long time ago.
And above, the one exception, the one person who knows and fully understands how sick I am, that’s Rhiannon. Rhiannon who thought I was going to die when I had the severe heart-related seizure when she was 6. Rhiannon, who fought her emotionally abusive father so she could come back and live with me while I went through the year of hell on the IV antibiotics, so she could take care of me and try to keep me alive, when the docs said it was a possibly fatal treatment, and that I’d be sicker than I’d ever been, while Terra was in Kosovo. And I came awfully damn close. Rhiannon, who listens to me moan and groan (literally – it helps me to let it out) every day, complain about my knee which is “bone on bone”, brings me bowls of oatmeal on the days I feel too weak to make it myself, sits at home alone because I’m too tired to go anywhere, or I have a migraine so bad I lay there with a pillow over my head for hours, and hears me say the dreaded words “I don’t feel so good” which really means I’m that car going 60mph & have just hit that brick wall, or I can see it coming, and I have to get in bed NOW.
Terra thinks she had a rough childhood because of all the moving around, the failed marriages and divorces, and a mom with Aspergers who has a hard time connecting emotionally with her.
At least she had a childhood.
Rhiannon hasn’t. She’s only known a sick as hell mom, taking care of me, being afraid every day that I’m going to die, the custody battle from hell, living for 4 years with her wacked out mentally ill father, and now Rhiannon, because of the stress of all that crap, also has Chronic Fatigue Syndrome & Myofascial Pain Syndrome. She’s no where near as sick as I am, thank the Goddess, but she’s still sick. Has the IBS, the headaches, the fatigue, the screwed up sleep schedule that comes from burning out her adrenal glands (Adrenal Stress Syndrome), the “unrefreshing” sleep, the aching.
Life sucks. And then you die. And from my viewpoint, get reborn, hopefully into a new and better life.
Hopefully.
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Thank God for Rhiannon! When will I be able to see her to thank her for being the one person you can count on? I hope she has someone as wonderful as her when she’s older and needs someone. Reading your blogs, my love and respect for you has grown. i don’t know Rhiannon, but already, I respect and love her!
All that’s really running through my head right now is, thank God for Rhiannon!!!!
when I go to the hospital tomorrow night, why don’t you take the evening off and get some well deserved rest? I know it won’t begin to put a dent into what you really need, but it’s about all I can offer to help…???
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Kelly, Rhiannon is in Hagerstown, MD., right now, staying with her boyfriend/soulmate’s mother. I couldn’t take her away from the festival, her only chance to see friends all summer long. She’s completely stressed out after the summer we’ve struggled thru and also hates hospitals & doctors with a passion, so she’s being well cared for there.
Maybe you & I can take a roadtrip this weekend to go get her? Just like old times!
My brother might be coming in tomorrow night, not sure, so lets see how it all works out.
Thank you for all the love & acceptance after all these years – it means more than words can say. Love you!
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