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Posts Tagged ‘health’

Hey all! This post is a bit off topic. I’m writing it with the hope that it will be selected for the Rheum Blog Carnival, but
I think my regular readers will find it applicable to their lives as well.

I’ve lost count of the times that I’ve been told by friends and family “You don’t need to be on those medication! They’re bad for you. You just need to exercise and eat better.” Living in a town with very liberal roots, I also get “Why haven’t you tried this herb that they collect in a secret mountain stream? You don’t need to take poisons! Have you tried a gluten-free diet? It’ll fix everything.”

—–
To everyone who tells us to stop taking medications,

Listen guys, I know you mean well. You’re trying to help me in a way that worked for you. And I’m so glad that lifestyle changes and naturalistic medicine helped you or a loved one. But listen:I am me. You haven’t lived a day in my shoes, nor would I want you to. But please understand a few things.

1. My illness isn’t my fault. Even if I ran miles everyday and only ate home-prepared organic food, I will still be sick. I know that you’re not explicitly saying that my actions and lifestyle is to blame for my illness, but that’s how it comes out. That’s what it feels like and it hurts. It makes me lose confidence in your opinion of me. It makes me not want to be open about my needs or limitations when I feel like you’ll view my illness as something I could easily change, if only I wanted to. I do want to change my illness, I wish that it would Disapparate out of my life as if it was magic. But these meds are the only thing keeping me functioning and I can’t jeopardize that.

2. Telling me to get off of my medications is akin to damning me to a life that’s almost not worth living. The negligible benefits that may come from the natural supplements or exercise and diet could take months or even years to manifest. Being off of my “evil chemicals” for that long would harm me in a way that your advice couldn’t fix. As I said before, these medications are the only things that keep me able to live my life and I can’t jeopardize that.

3. You don’t know enough about my disease and it’s effects on me to pass judgment on how I’m treating it. You don’t know what my medications actually do, and you don’t know the health risks and side-effects of these meds that you continually put down as “over-medicating” or “dangerous chemical compounds”. Every disease is different for every person unfortunate enough to have it. Your friend with the “miracle” cure? She might have a completely different subset of the disease! One size does not fit all when it comes to treatments for chronic diseases.

4. Those of us with chronic illnesses are completely aware of the effects of our medications. We know that they can cause liver failure or vision changes or high cholesterol levels. You don’t have to tell us that these medications can be dangerous because we know it already. But we have decided that those risks are worth taking to improve our lives. It’s all about quality of life for us, and sometimes it’s a trade-off. We trade possible future complications for the ability to actually live today. But we have already decided. Please respect that decision.

5. Respect. Please try to respect us. Respect our choices, respect our limitations, and respect our knowledge. We try not to talk your ear off about our illnesses, but please try to listen to what each day is like for us. We appreciate your interest in our lives and we love that you want us to feel as amazing as we can. Your friendship and concern are intensely needed and loved. Please just try to be empathetic to our illnesses.

Sincerely,
All the people living with chronic illnesses
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Ever since I was diagnosed with bipolar II disorder five years ago I’ve been bombarded by people who, with kind hearts, would lament that I chose medication. Now that it’s likely that I have Rheumatoid Arthritis or another autoimmune connective tissue illness, I’m sure that I’ll be bombarded with the same advice even more. It’s hard for a healthy person to understand what RA or bipolar is like. I don’t expect them to. I just wish that they would understand that we focus every day on how to manage our illnesses and live our lives. That’s what we think of from sunup to sundown: how to feel a little bit better the next day or how we’re going to change our lives to fit into the cages that the disease traps us in.

-Ashes

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There was a death in the family and now I’m dealing with the possibility that I may have rheumatoid arthritis. This has obviously been hell on my bipolar, but I just haven’t had the energy or strength to talk about it. I’m hoping to get active on here again soon, but I thought that I’d let you know why I’ve been sort of absent from this blog.

As soon as I can write about relatable I’ll post.

-Ashes

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When I look at my family I can see the cause of my bipolar. My maternal grandmother has more diagnoses than I have fingers, bipolar among them. She can’t work, refuses to take medication and lives in filth. Four of her five siblings are so incapacitated by mental illnesses that they shouldn’t be living alone. Her sister is currently in the state mental institution for violently assaulting another woman on the street while in a manic state exaggerated by a cocaine high.

Some people say that mental illness is less about genetic predisposition and more about environment. I call bullshit on that right now: You can’t tell me that genes have nothing to do with it when five of the six children born to my great-grandparents have severe mental illnesses, while one who lived in the exact same environment and family turned out well adjusted and happy. It turns out that my great-grandfather’s parents were first cousins and the generation-skipping manifestation of mental illness is too much of a steady pattern from that point to be a coincidence. Autoimmune diseases also run in my mom’s family, as seen by our tendency to have thyroid issues, rheumatoid arthritis, and female reproductive tumors and growths.

I refuse to pass these traits onto the next generation. I consider myself a personal eugenicist; I recognize how much genetics can affect the next generation of humans and I don’t think my genes are worthy of the privilege to be carried on. I don’t expect other people to feel the same way, but I wish that people would be more aware of their genetic profiles before they decide to have children. My mom knew that there was a high likelihood that my brother or I would end up with these physical or mental illnesses but she chose to have children anyway, damn the consequences on our lives. Although I understand that plenty of people live with these disorders and have relatively full and happy lives I cannot justify possibly burdening my child with bipolar or RA.

Then there’s the issue of actually raising a child. I would want to breastfeed and would only use formula if absolutely necessary for the child’s health, so I’d have to be off my meds from when I knew I was pregnant to possibly a year and a half after birth. Dealing with infants and children has always been a bipolar trigger for me,  and even when I’m on my medications it’s hard for me to stay calm with all the shrieking and crying and whining and disobeying. I lash out in irrational anger at them, sometimes violently. My mom stopped letting me babysit my younger brother after she kept coming home to find him up against a wall in a chokehold or begin held down by my knees while I punched him. I literally couldn’t stop myself. To this day I don’t know whether he was trying to provoke me. I think he was, but that could just be a bit of the bipolar paranoia trying to fool me.

I don’t think I’ll ever be stable enough to raise a child with consistency. I’m afraid that my mood swings will teach the child that mummy is a volatile, unpredictable force. I don’t think I could shove down my moods and reactions to lead by example with fairness and logic.  I wouldn’t be able to live with myself if I warped my kid because of my bipolar.

It doesn’t hurt me to know that I will probably never be a mother; I can think of other things I’d like to be. But some weird part of me that apparently embodies the anti-women bullshit that I normally fight against says that I’m less of a woman because of it. It says that I’m less of a person because of my decision. I don’t know why that voice is in my head of why I have those doubts, but I know that being childless is a choice I can live with.

-Ashes

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Most people familiar with bipolar disorder know that the disorder causes black-and-white thinking in those of us affected. I’m like that with almost every aspect of my life, but nowhere shows my line of thinking like my attitude toward food and consumables.

I have this unending disdain for food or other products that half-ass it in the name of health or a “better experience”. Why would I drink diet Coke when I can have the full thing? What’s the point, other than a few calories? If I was concerned about calories and grams of fat I wouldn’t be drinking pop, would I? Even though I have to keep my cholesterol levels down because of my Seroquel, I don’t worry about my diet the way I should. Part of my poor choices are a self-destructive form of rebellion against my faulty body. I know my body is not a sentient being; it can’t help the crappy genetics that led to hypothyroidism, endometriosis, and bipolar disorder. But for some reason I don’t want to admit that my body is limiting my lifestyle choices. I don’t want to admit that I’m not in control of my life, even though I know intellectually that I never was in control. My body is just a vehicle for my to use to live my life; it can’t choose anything, but I can.

The same thing goes for my cigarettes. I’m already sucking down chemicals, why not go the whole way with it? If I’m going to get cancer anyway, why would I smoke lights? It’s so ridiculously illogical that I’m somewhat embarrassed that I subscribe to that philosophy, but that doesn’t stop me from thinking it as I light up.

Something about the sense of pseudo-indulgence that’s “healthy” grates on my nerves. The “In for a penny, in for a pound” mentality dominates almost all of my food and drug intake decisions. I understand logically that extra fast food, full-fat dressing, and Camel filters will only lead to negative effects in my health later on, as well as the sluggy feeling that comes from taking crappy care of my body now, but I just can’t make myself live in that gray area.

I’m sure that one day I’ll see these actions for what they really are and start to take care of my health and body, but I don’t know when I’ll be ready. I need to stop holding my biology accountable for a simple matter of bad luck and stop being bitter about my less-than-perfect health. I need to start being an adult. But I still don’t know when I’ll be able to.

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