I’m allowed to wallow in self-pity

May 28, 2015

I resent the idea that I should never spend a few days feeling sorry for myself. I see no reason why I shouldn’t be able to do that without judgement.

First, I’ll say that this is how I feel about my own self-pity. It’s different for everyone. I make no judgement on you just like I want no one else to make a judgement on me.

I set a few rules for myself. If I ever seriously consider suicide, I need to seek help. If it lasts more than 3 days, I need to pull my way out of it. If it leads to me not taking proper care of my health in a way that will have effects that last beyond those few days, I need to stop. I need to not feel bad or guilty about it. I need to let myself have my feelings.

That’s it. Those are my only rules.

Yesterday was one of those days. I was having pain in a new joint. Every 3-5 years this happens, and the pain is permanent. A long time ago I stopped hoping it wouldn’t be. So when I felt that all-new-yet-totally-familiar pain, I knew exactly what it was. And I was devastated. On top of that, it’s been humid lately, which means I just feel shitty in general. My pain is worse, my fatigue is worse, it’s all terrible.

Just 2 hours after the pain started I was sitting in my naturopath’s office describing it. The timing of that appointment was a tough coincidence. I started crying. One thing led to another, and she started offering me a homeopathic remedy to calm me down. She was careful with her words. She never mentioned “anxiety” or “depression” or anything similar, but obviously that’s what we were talking about.

Now, I understand why she wanted to calm me down. My adrenals are struggling. My pulse was low. My blood pressure, which is normally low, was so low that she couldn’t even get a reading after three tries. It wasn’t good. Crying like that would only make my adrenals worse. I get that.

But I also felt judged. Maybe it was all in my head. Maybe not. But that’s how I felt. The way she talked about my need to calm down and not lose hope didn’t sit right with me. And I resented it. Because I had every reason to feel bad.

Most days, I’m pretty happy and cheerful. On the bad days I’m less so. Occasionally I’m in a bitchy mood, but not too often. But every now and then, I just need a day or two of wallowing in self-pity. I’m dealing with life-long pain, fatigue, and disability. I spend hours every day dealing with my health in one way or another. My social life is planned around medical appointments, timing of medication, and how I think the weather will make me feel on any given day, among a dozen other things. Dates are too difficult to be fun. Making new friends feels like climbing a mountain, because they just don’t understand my limitations. I will be dealing with for this the rest of my life. It will most likely get worse over time, not better. I can’t work, and I can’t afford to live without a job. I don’t have the money to move to a nicer apartment, to get a dog, or to go to the theater. Technically I don’t have the money to pay my electric bill right now, either. I can no longer travel. I miss my friends who live farther away. My memory sucks. I have trouble remembering big events in my life, what I did last week, and the plot of the book I’ve been reading. I spend hours dealing with doctors, insurance companies, and pharmacies. I sit around the house wanting to be productive and get things done, and I just can’t do it.

Oh, and by the way, I also happen to feel like absolute shit.

So I give myself a few days to feel crappy. I feel sorry for myself. I feel like none of the treatments that I work so hard on will ever help me improve. I cry if I want to, I don’t cry if I don’t want to. I avoid going out. I avoid talking on the phone. I feel pissed off at the doctors, at my body, at the world. My anger and bitterness are so strong, you can practically see them vibrating off of me.

And that’s ok. I see absolutely nothing wrong with it. I know it won’t last. I just need to get it out of my system. I need to have a few cumulative weeks every year where I feel this way so that the rest of the time I don’t. That’s what works for me. And if it bothers others, well, then they need to deal with that themselves. They can’t put it on me. Because that’s not my problem. I have enough problems of my own to deal with, as it turns out.

4 Comments | Decisions, Expectations, Fatigue, Frustration, Healthcare, Insensitive, Isolation, Limitations, Pain, Rants, Support, Symptoms, Unpredictable | Tagged: , | Permalink
Posted by chronicrants

There’s no cure for me and you need to accept that

April 29, 2015

It used to happen more often. A well-meaning family member or friend would mention something about a cure “one day” and about me staying hopeful. Over time, those comments gradually ceased. I made it clear I didn’t want to hear it and they probably began to accept that it was unlikely.

Last week, though, a well-meaning relative made one of those comments. I was caught off guard, since I hadn’t heard it in so long. I tried to explain there won’t be a cure. In fact, no one is even researching a cure right now! And even if they were, and even if they were on the right track, it would be a long time before that cure was commercially available. Hell, few of my conditions are even being researched for potential treatments, never mind cures! But he kept trying to say it could happen, I couldn’t be sure, it was possible, etc.

Now here’s the thing about hoping for a cure: it makes the other person feel better. They can see how poorly I’m doing at a given time, and think that one day down the road I’ll be better, and it comforts them. I get that. And if they want to believe it, they can go ahead. What I don’t want is for them to discuss it with me. If I believed there was a cure coming then yes, I might be comforted, but I don’t.

My pain started when I was a kid. For many years my family, friends, and doctors told me that it would be ok, that I would get better, that the pain would go away. It didn’t. It’s been more than 2 decades and the pain is even more prevalent now than it was then, plus I have even more symptoms. “It will be ok” became a lie to my ears. I couldn’t believe it any more. I still don’t.

So talking about a cure isn’t helpful for me. Yes, I admit there might be a cure in 20, 30, or 40 years. But in the near future, no, there won’t be a cure. I’ve come to terms with that. I’m ok with it. Well, sure, I’m not thrilled. Yes, I want to feel better and travel and ride a bike, and pick up my nieces and nephews and do all those other joys in life that I can’t do any more. But I have accepted my reality. Now I just need everyone else to accept it. Or to at least not talk about cures when I’m around.

4 Comments | Educating, Expectations, Fatigue, Frustration, Insensitive, Medication, Pain, Rants, Symptoms | Tagged: , | Permalink
Posted by chronicrants

There are no safe spaces

April 26, 2015

When I started this blog, it was so I could have a place to rant about the frustrations of having chronic illnesses. Over time, it’s morphed a bit, and I’ve covered many chronic illness-related topics from many perspectives. But today it’s time for a good old fashioned rant again.

I was in what I thought was a safe space. I thought it was safe, so I let down my guard. I’m so used to keeping my guard up that I completely forget about it, until I let it down and something proves that I should have kept it up.

Today’s incident was unexpected. I was in a room of people who care about social justice issues. The afternoon was spent talking about what it means to be in an oppressed group, and how to be an ally to an oppressed group. Most of the talk was about racism and sexism, but there was a bit of talk about homophobia, biphobia, and transphobia. I also brought up ableism. Everyone was kind, respectful, and interested in learning. I was asked some great questions by someone who just wanted to understand a bit more about what the disabled community is dealing with. I connected with another person with chronic illness. It was a fantastic afternoon. I had missed most of the event, but at least I’d made it for the end and was feeling more or less ok.

Then it was time for a closing exercise. It involved walking around the room, which I could have done a few hours earlier, but not at that point. At that point I needed to sit. And that’s when I became invisible. Most people avoided looking at me. A few looked, and then looked quickly away. They pretended I wasn’t there. It was horrible. I thought about leaving, but that didn’t feel like the right thing to do. I thought about getting up and participating, but I knew I couldn’t manage it. So I stayed seated. And then later, I cried.

Thankfully there was a friend there, and as people left, I pulled her aside, told her what happened, and cried. I don’t cry often, especially in public. But I was so upset! For once I had let my guard down, and look what happened! No one was mean. No one said anything insensitive. But they acted like I was invisible, and I just couldn’t handle that. Not like that. Not today.

I’m still hurting. I can’t seem to get it off my mind. Plus, I’m dealing with the physical effects: the adrenaline surge left me shaky at first, but I calmed down and ate, and that helped. Still, for someone with adrenal insufficiency, that’s not good. And of course, crying is tiring, even when it’s a short cry. So now I’m drained, but I know I need to wake up early for a doctor appointment tomorrow. Damn!

And I’m just so pissed, because I was having a really nice day! I had wanted to attend this thing for weeks, and I wasn’t sure I’d be able to make it. Even this morning I had my doubts, but I made it and I’d had a really nice time! It was so wonderful until the end. And that just ruined the whole thing. I’m trying to hold onto that good feeling I’d had, but I just can’t seem to do it.

I put up with this kind of bullshit all the time. That’s why I’m so used to keeping my guard up. It feels like I deal with some sort of bullshit every time I leave the house, but this once, for just a short time, I thought I was safe. I’d dealt with the hurdles of getting there (and there were several, both at home and on the short journey) and I’d thought I was safe.

I left feeling sad, frustrated, discouraged, alienated, and mad. I left feeling like there are no safe spaces. My chronic pain support group has been safe with health stuff, but my guard is up for biphobia when I’m there… what if I mention a date with a woman and someone reacts badly? Today’s event was the one space where no sort of -phobia or -ism is tolerated, but being ignored and avoided had the same effect.

Please, someone, prove me wrong. Tell me about a safe space. Or if you need to vent about your own similar experiences, go right ahead. Leave your thoughts in the comments and do your own venting.

I just hope that one day, somehow, some way, I really will find a safe space.

4 Comments | Educating, Expectations, Frustration, Insensitive, Isolation, Limitations, Rants | Tagged: , , | Permalink
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How chronic illness didn’t cause my anxiety

April 9, 2015

Two years ago I was sitting in a support group meeting when one member said, “Everyone with a chronic illness has PTSD.” The way he said it was so matter-of-fact that I was really surprised. It was the first time I had considered the possibility. After a moment, I decided I didn’t agree. I knew I didn’t have PTSD. I still don’t. But I understand much better why he said it.

Today I was emailing with a close friend about some anxieties I have. They all have to do with my health issues. Even the anxieties that don’t seem to be about my health issues, like anything job-related, can be traced to the lack of security I now feel because of my health issues. She asked if I might have PTSD. I’d thought about that before, so I know I don’t have it. I had checked the diagnostic criteria and while I have lesser versions of many of the symptoms, I wouldn’t get that diagnosis. I’m sure of it. So what do I have?

I have years of pain, exhaustion, nausea, diarrhea, and other symptoms. I have inexplicable symptoms that pop up at very inconvenient and completely unexpected times. I have years of the fear of not knowing what caused any of it. I guess that’s all to be expected.

But I also have anxieties that were completely preventable, the ones caused by society. I have years of disrespect, disbelief, and condescension behind me, not only from friends, coworkers, and acquaintances, but also from doctors. I had doctors mistreat me both emotionally and physically. I was a terrified teen who was falsely assured it would all be ok. Even then I knew the adults didn’t really know that. I was a scared young adult whose fears weren’t acknowledged at all. I worry about my health, my present, and my future every day, sometimes a lot and sometimes just a little, and I hear nothing more than platitudes from medical professionals, if that.

I have lost people close to me. I’ve missed out on more life experiences than I care to think about. My friendships, romantic relationships, and career have all been altered. My health has affected where I live, how I spend my free time, and even my ability to get a dog. There is no part of me that has been untouched by this.

And yet I’m one of the lucky ones, because my anxieties aren’t nearly as severe as they could be.

Still, I’m aware of them. I’ve been noticing them more and more lately. I don’t think they’ve gotten worse. I think that as my physical conditions have stabilized, for the first time I have the capacity to acknowledge the emotional toll this has rung. And while there’s the occasional larger symptom, mostly I notice small things. Talking to a friend about tattoos is fine as long as we’re talking about body parts where I haven’t had much pain, but when we talked about one particular popular spot, one where I’ve had my worst and longest pain, one that has involved the most mistreatment by doctors… even just typing this out my heart is beating more and I feel tense. Talking to my friend about tattoos there gave me a feeling that was completely unfamiliar. Being touched in certain places upsets me horribly. If a doctor touches my shoulder, my thigh, my back, I’m fine. But if they touch my wrist I just about jump through the roof. The pain there isn’t so horrible anymore, but the memories are. The memories of doctors asking if pressing certain areas would hurt, and when I said yes and asked them not to, they did it anyway just to see my reaction. The memories of doctors intentionally dislocating my wrist because they saw in my chart that it was possible and they were curious. The memories of me asking them not to, of me telling them how horribly painful it was, and of them doing it anyway. Who would do that to a scared 17-year-old? But they did. More than once. The memories of a doctor telling me I should stop complaining because others had it worse, and me leaving the office in tears.

When I see a new doctor I steel myself. I walk in with my medical history, my list of medications, and my questions for them. I’m all business as I interview them. But inside I’m quaking. I ask them specific questions and it appears I’m checking their abilities, but it’s more than that. I need to find out how they’ll treat me and I listen closely for the answers. I try so hard to figure out if they will respect me. Will they listen to my opinions about my own body? Will they take me seriously? Will they read research articles that I bring them? Will they scoff at my chosen treatment methods? Sometimes I get it wrong, but I try so hard to figure it out at that first meeting. I refuse to be treated badly any more, so at the very least, I try to make that much clear. I suffered through that for more than 20 years and I won’t do it again.

Sometimes I think about it all and I wonder, how could I possibly have come out of all of that without being somewhat scarred? And yet, I did ok for so long. Somehow, I managed it all. It was just the last few years that pushed me over the edge. It was getting so much sicker. It was having the doctors say there was nothing more they could do for me. It was doing my own research and having doctors tell me I was wrong, when I knew in my gut I was right (and if you’re a regular reader, you know that I was.)

And it was years of fighting with insurance companies and the social security agency to “prove” that I was really sick, to fight for the benefits to which I was entitled. That might have been the most scarring of all. It was stupid and unnecessary and hurtful, and I will never forgive any of the people involved in the creation of that process for treating sick people like criminals.

I’m generally a happy person, but sometimes I hear things coming out of my mouth (or being typed here on this screen), and I’m shocked at how angry and bitter I am. I don’t mean to sound that way, but I just can’t help it. And really, can you blame me?

It’s important to remember that anxiety can be a condition of its own. You can have anxiety without any physical illnesses. It’s also quite possible to have both, but have them be unrelated. It just so happens that I’m focused on my own type. I know that any anxieties I have are related to my chronic illnesses. It just so happens that the illnesses themselves aren’t what traumatized me the most. It’s the way people treated me because of them.

I wish you, dear reader, the best of luck with your own situation. I sincerely hope you are treated better, while I sadly realize that many of you are not, and many are treated even worse. I hope so much that one day these preventable anxieties are actually prevented.

(And since you might be wondering, no, I’m not in therapy. I would like to be, but I can’t see a private practitioner with my health insurance and I do not want to go to the major hospitals for personal reasons. So until I get different insurance or can afford to pay myself, I won’t be going. But again, I’m one of the lucky ones, because I’m functioning ok. And I’m very thankful for that.)

1 Comment | Educating, Expectations, Frustration, Healthcare, Insensitive, Isolation, Limitations, Rants | Tagged: , , | Permalink
Posted by chronicrants

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