I'm tired of feeling sick.
I'm tired of days spent doing nothing but resting, or getting sick.
I am so, so very tired of medications and their side-effects.
I am tired of fighting in order to be treated humanely by a health-care system which cares more about the bottom line then about the health of the people they are supposed to serve.
I am tired of Tin Gods, and their unfortunate influence on my life.
I am tired of struggling to walk to the bathroom...and being afraid of the day when I won't make it.
I am tired of television, and too tired to do anything else.
I am tired of feeling like a bad mom because I couldn't take my kids to the library last week, as I was too sick to get out of bed, much less get out of the house.
I am tired of the house. I am tired of these same four walls, replaced only briefly by those of a doctor's office or ER. And, occassionally, those of a restaurant or store.
I am tired of having the health of a 70-year-old woman at age 32. I am tired of feeling old before my time.
I am tired of people who use department-store scooters for "fun," when they don't need them...so people like me have to wait, or go home.
I am tired of a certain extended family member, who is constantly harassing me about my weight. Look, genius: I can't walk to the damned bus stop at the end of my street. I had to quit doing yoga last year because even that excertion was causing pain. Exactly how am I supposed to join a kick-boxing class, again?
I am tired of cancelling appointments or plans with friends, because I'm too sick.
I am tired of people asking me how I feel when they really don't want to know...then getting upset when I tell them.
I am tired of the thousands of things I need to do right now, that are piling up, so that I feel like I will never get ahead.
I am tired of feeling, secretly, that I am running my family into the poorhouse.
I am tired of feeling, secretly, that I am to my family and friends like an elderly aunt in a nursing home.
I am tired of my father, who throws thousands and thousands of dollars every year to buy my junkie sister and brother cars, pay their bills and thier bail, and support their habits (not to mention their kids)...but couldn't be bothered to send my kids a Christmas card. I know, beyond doubt, that if I needed something, medically, he wouldn't bat an eye while he claimed he has no money. It would never, in a million years, occur to him to help me at all. He continues, after all these years, to act like my having MS is like having hay fever. After 32 years, I am still tired of not having a father who gives a damn about me.
I am tired of having to make excuses for why my house is a mess, when the real reason is that I am too weak to do much about it right now.
I am tired of being forgettable to my family and friends.
I am tired of pity. I am tired of lying to people to avoid it.
I am so very, unspeakably, sick and tired of pain. I have had it with pain, but alas, pain has not had it with me.
I am tired of pain medications and all that comes with it: the begging, the side-effects, the constant "drug-seeking" bullshit, the hours spent on the phone and in the pharmacy and the ER, the nausea, the site reactions, the constipation, the dizziness, the additional fatigue that knocks an already-exhausted me on my ass. And I am very tired of asshole doctors who think I am PURPOSEFULLY seeking that bullshit out. Who in their fucking right mind would do THAT? You don't get a "high" off pain meds when you actually HAVE pain. All you do is get some relief...and often, it's very little relief indeed. So why all the crap from doctors?
I am tired of being tired, when I didn't do anything to warrant it. I am tired of resting only to feel even more exhausted when I wake up. And I'm tired of doctors, upon hearing this complaint, offering the ever-so-helpful advice of, "Get some rest."
I am tired of not being able to finish this mother fucking dental work, because of the neuralgia or some stupid infection or another. I want to shake the dentist and yell, "Look, you ignorant bastard...I am always going to be in pain. I am always going to be fighting some ridiculous infection. Just get this bullshit over with already."
I am tired of being ashamed of going out, or meeting new people, because of the unfinished dental work. I have never given a damn what I looked like before, or what anyone thought of it, and I can't fathom why I care about this...but I do.
I am tired of trying to decide whether or not to cut my long hair, one of my few remaining vanities, into a short cut because way too often, it hurts just to brush it.
I am beyond tired of a liquid diet. Is there anything more boring, and less palatable, than a liquid diet? "Gee, what will I have tonight? Protein shake, soup or more soup?"
I am tired of eating nothing and still being so fucking fat.
I am tired of my mind wanting to do a thousand things and my body able to do none of them.
I am tired of people who think that because there are some people out there with MS who can climb mountains or hold stressful jobs or whatever, that I automatically should be able too as well. I can't. I am not them. Don't you think I'd rather be working or climbing mountains than lying in bed watching "Cash in the Attic" re-runs?
I am tired of people who think it's a "mind over matter" situation. Hell and damnation, is there anything more pompous than someone who has never had a medical situation more extreme than a hangnail telling you that your chronic disease is "mind over matter"?
I am tired of feeling like I can't complain or air out my stress, because disabled people are supposed to "be strong" and "suffer silently" and all that antiquated nonsense. I am forever hearing about so-and-so's family member, who suffered with this-and-that, and "never uttered a word of complaint to anyone." They say this, as if it's something to emulate, something to be proud of. Not only do I NOT believe it (just because they didn't talk it out with you doesn't mean they never talked it out or had a good pity party), I don't think it's healthy. All that "suffer in silence" bullshit...it's just got to go. If for any other reason, than the fact that it's downright fucking dishonest. And why oh why do people love it when the disabled do "suffer in silence"? Is it because they are uncomfortable sharing that part of a loved one's life? They'd rather their loved one put on a fake face and a phony smile, for thier benefit? They'd rather us hide indoors than never see us struggle with a cane or grimace with pain in public? I will never get it, I suppose.
I am tired of being ashamed of some of my MS symptoms, so ashamed that I won't even talk about it here, in this semi-anonymous fashion. I am doubly ashamed, because I started this blog with the idea to put aside all that "suffer in silence" crap, and tell it like it is, show people what it's really like to live with MS and trigeminal neuralgia. But I'm a phony...because I don't tell it like it is. I keep some of it to myself, because it's embarassing. Why should I be embarassed? It is nothing I have control over, or have done of my own free will. I know it doesn't make sense, and yet, there it is. And I feel that shame, that guilt, almost every time I write about my MS here on this blog, because I know I am holding back. I know that by doing so, I am being more than a tad bit less than completely honest and open. I know that I could do some good by being honest and open, by maybe destigmatizing, just a little, those symptoms. And yet, I can't bring myself to do it. I have so little dignity anymore, I'm just clinging to what little I have with both hands. Even when it goes against the entire reason I created this blog and makes me feel like a hypocrite.
I'm tired of not answering the phone, because my face hurts too badly to talk.
I'm tired of not wearing foundation, blush or eyeliner, because it sets off the damn neuralgia. Depsite my rather tomboy-like predilictions, I am a woman. I like wearing make-up from time to time...and from time to time, I need it. It's a bit of rubbing salt in a wound, to want to cover up a sick face and not be able to do it because you're sick.
I'm sick of not being able to take a walk. I miss walking so much.
More than walking...I miss dancing. I am sick of not being able to dance.
I am sick of having no one to tell how sick of all this shit I am. They either don't care, or they would care too much. I don't want to hurt the people close to me. I don't want them to hurt more than they already do. My husband, I love him so much. I know how much he hurts on my behalf. I can't bring myself to unload too much on him. I feel like I complain enough to him already. He's under so much stress, to take care of the bills and me and the kids and all. I don't want to add to that, more than I absolutely have to. More than that, I need our alone time to be filled with love and joy. I absolutely need that, I can't live without it. There are times with my husband when I feel young and attractive and vivacious and all those things that I just don't feel any other time. I don't know what I would do without my husband. And my close friends...I don't want them to hurt, either. And I don't want to spend what little time I can spend with them grousing. I NEED that time, to forget about all this shit. Fizz, he can make me forget better than anyone. There are times with Fizz that I feel like none of this has ever happened to me. And that none of it matters. My friends in Ohio, it's so easy to get away from all of this with them, because they can't SEE what's going on with me. I can blow it off as no big deal. My family? Forget about it. They act like this isn't happening at all. Every now and again, it would be nice to just completely unload on someone close to me and have just one other person know exactly what I am going through...but what stops me is just that: they'd know. My dignity would be gone, forever. They would know.
I am tired of being a bundle of contradictions.
I am tired of watching tv and hearing about a character with MS who is a burden to someone, or has died, or what have you. I pretend like I don't take notice, but I do.
It's hard not to.
I am tired of self-serving MS organizations that pretend that what is happening to me just DOESN'T happen, or if they admit it does, they claim it's rare. I've been out there, I've met other people with MS both in real life and online...and it's not rare. I know it's important to show the public that many if not most people with MS are high-functioning and so forth, but it's leaving those of us who aren't behind. It's making us feel more isolated. Sometimes, it feels like I'm back in high school, and the R&R, high-functioning MS patients are the cool kids that everyone likes and that the school is proud to show off, while the SP and PP patients are the geeks in the AV club no one talks about. 30 photos in the yearbook for the popular kids, 2 way in the back for the AV club.
I am tired of feeling guilty whenever I spend even a small amount of money, because I know I cost this family enough money as it is.
I am tired of hiding out in the summer because of heat reactions. I am tired of spending my summer birthday indoors when I'd rather be at the pool or the beach.
I am tired of muscle spasms, sudden paralysis, eye issues, going to the bathroom every 20 fucking minutes, horrific fatigue and debilitating pain.
I am tired of people who assume medications take care of all of that. I am tired of this society who honestly believes that taking a pill will cure, or at least completely treat, almost fucking anything. It doesn't. Sometimes the pills make it worse. Sometimes the pills help, but that's it...it doesn't cure it, it doesn't make it go away, and it comes with its own host of new problems you've got to cope with. No matter how many cute drug commercials you see on tv and in magazines, that's the reality of it. Pills aren't cure-alls. Geez, it's like we're living in the patent medicine age again sometimes.
I am tired of feeling like less of a mother and wife than I wanted to be.
I am tired of canes and scooters.
I am tired of pills and shots and IVs and blood work and MRIs.
I am tired of resting.
I am sick and tired of being sick and tired.
And now, I am tired of this list.
Labels: MS, trigeminal neuralgia