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

The real reason I became loud and pushy: self-preservation

May 18, 2015

We’re taught to be polite. We’re taught to be respectful. But what happens when being polite and respectful is killing you?

I mentioned to some friends recently that I didn’t used to be loud and pushy. In fact, I was quiet and rather meek for a long time. They were shocked. If you’re a long time reader, you might be surprised, too. They couldn’t imagine me ever being shy about speaking my mind. But they didn’t know me before.

I was a shy child. When an adult, even a well known friend of my parents, spoke to me, I would hide behind my mother’s legs. I got past that, as children do, but I was always shy about expressing my opinions. I hated raising my hand in class, even when I knew I had the right answer. Bit by bit I started raising my hand and volunteering thoughts and ideas. Still, I was never pushy about it. I would tell my boss what I thought, then go with whatever he decided.

There was no one moment when that changed. It was a gradual thing that snuck up on me over time. Then one day, someone else brought up the need to be pushy with doctors, and I had a sudden flash back to the days when I was timid, and I realized I wasn’t like that any more.

I was a child when I had my first symptoms, so I did what my parents and my doctors said to do. It was always some combination of Advil, heat, ice, support braces, etc. None of it worked. Still, complaining made things worse. I learned early on that if I was too insistent about things, I’d be ignored. I was lucky that my parents never ignored me, but certain doctors and teachers did. Several openly suggested I was making the whole thing up.

As I became an adult, I still wasn’t taken seriously. And even when the doctors took me seriously, I still received poor care. I got shuttled between doctors within an insurance-induced maze and continued to get worse and worse. I was told not to come in any more. I learned to speak up for myself in college, where the disability support services were horribly lacking. I pushed for what I needed to succeed in class, but only within the strict bounds of cultural politeness.

In my early 20s I had an unusual ability to see a doctor of my choosing for a short time. I won’t get into the insurance loophole, but I found it and used it. For the first time, I took things into my own hands against the advice of my doctors. And for the first time in 11 years, I got a diagnosis. That was my first taste of how going against the grain could help me.

Somewhere in my late 20s or early 30s, I started to stand up for myself more. When doctors would bend my hand and ask, “Does this hurt?” and I said yes, they would still try to do it again, but unlike a decade before, I pulled away. I argued with insurance representatives, even when it did no good. I tried to get better care. I was still being polite most of the time, but I was pushing that boundary more and more.

Around this time, my health took a dive. The doctors said they couldn’t do anything. I knew I had to take over. If I didn’t, what would become of me? If that wasn’t enough, I was fighting with a disability insurance company and with social security for benefits that I knew I deserved. It felt like my life was falling apart. It was do or die, probably literally. So I did. In an effort for self-preservation, I stood up for myself. When a doctor didn’t want to run a test, I asked why. When they gave a reason, I debated, using the facts I had learned through my own research. When my primary care physician didn’t want to give me a referral to a specialist I suspected could help (and he later did!), I switched doctors. I interviewed doctors at the first appointment to see if I would stay with them. I asked for more tests, more treatments, more of everything that I thought could possibly help me. I was polite when that seemed to be the most likely way to get what I wanted, and I was rude when that seemed the better way to get what I wanted. I argued, pleaded, and even yelled. I stopped short of becoming abusive, but otherwise, I pushed hard.

Pushiness has carried over into other parts of my life. I’m sure some people find it annoying. Others find my forthrightness refreshing. I find it necessary.

I don’t know when being pushy became my default setting, but it did. And it probably saved my life. It’s not the best route for everyone, but for me it was the only way I could find.

3 Comments | Expectations, Frustration, Healthcare, Limitations, Medication, Milestones, Pain, Rants, Support, Symptoms | Tagged: , | Permalink
Posted by chronicrants

Is it possible to rent an apartment near Boston with a therapy dog?

May 6, 2015

I have always wanted a dog. I grew up with a dog, and ever since he died when I was 11 years old, I’ve wanted another.

3-27-2015 4-01-42 PM

Sometimes I’m lucky enough to get to babysit for this cutie!

In my 20s I knew I didn’t have the right lifestyle for a dog. I worked long hours and traveled a lot and, if I’m being honest, the truth is that I just wasn’t ready for the responsibility. Then when I got so sick I had to leave my job, I was home a lot. I stopped traveling. But I was so sick that I could barely take care of myself, never mind another being.

Now it’s different. I’m still too sick to work, but I’m doing a lot better. I’m more stable. I’m taking care of myself ok. And I really really really want a dog. I ache to have a dog. Literally. When friends talk about their dogs, I ache to be in their shoes. When friends post photos on Facebook of dogs that need adoption, I ache to take those dogs home. I’m so ready to have a dog. And I’ve been mostly sure I could handle taking care of a dog, except for the walking part. Dogs need exercise, but some need more than others. I could get a dog that doesn’t need much exercise. I’ve been working hard at walking most days, and I’m taking short walks about 6 days a week! (Woo hoo! Those of you who’ve been reading this blog for a while know how big this is!) But dogs need to pee and poop more than once a day.

So I felt there were three big obstacles to me getting a dog:
1) Walking.
2) Money.
3) My landlord.

Then something changed. I was talking to a friend this week about how much I want a dog and my concerns about walks, and she suggested training one to use a litter box. Many people have suggested that, but it sounds ridiculous. The thing is, she did it! She had a dog that used a litter box! She also had a friend who did it. So maybe it wasn’t that ridiculous after all? I looked it up online and found some great resources. There’s even special litter for dogs! This totally solves problem #1!!!

Now, let’s assume I can handle the money aspects. Those are a real concern, but I’m working on them.

That leaves my landlord as the final obstacle, and I can’t imagine how I can possibly overcome that problem. You see, Boston is a pricey city. (When I say “Boston” I mean the neighboring towns, too. Just fyi.) There’s also a very low rental vacancy rate. This means that rents are high and landlords have a lot of power. I won’t get into all the details of the effects of the Recession on the housing market, etc. Just believe me when I say this is a tough place to be a renter. And the vast majority of landlords don’t allow dogs. Including mine. (My landlord doesn’t allow cats, either. And I believe birds are also off limits.)

Remember back in February when I said I was looking for an apartment? Well I did. I looked. And I gave up. I’ve been in my current place for many years, and my landlord hasn’t been raising my rent as much as they could. I pay a lot less than new tenants in my building. So even though I was looking in a less expensive area (where I’d rather live anyway) I couldn’t find anyplace as nice as mine. And I wasn’t even looking for a place that allowed dogs!

“Wait, what if it was a therapy dog?” you might ask. A lot of people have asked that. And yes, by law all landlords have to allow therapy pets. I would have no trouble getting my doctor to write the necessary letter. In fact, she has previously said that I should consider getting a pet because it would help me. So let’s assume I got the letter and I had a therapy pet. Now by law my landlord can’t kick me out, right? Sure, but they can “forget” to fix things in a timely manner. And when my lease comes up for renewal, they can raise my rent to what my neighbors pay – $300 a month more! I wouldn’t be able to claim discrimination if others pay that much. And future landlords might be just as difficult…. if I could even find a new place to live! Remember, I already looked at apartments last winter. Yes, there were places, but do I really want to live someplace smaller, darker, and louder just so I can have a dog? I’m not sure.And what if that place didn’t work out either? I really don’t want to move constantly.

So now I’m wondering, what’s the reality of living with a therapy dog when you rent an apartment? Do landlords retaliate? Or do they actually accommodate you the way they should? I know that no one person can speak for all landlords, but I would really love to hear about people’s experiences to find out if this is even possible. If you have a therapy dog and you rent an apartment, how has it been for you?

2 Comments | Expectations, Frustration, Healthcare, Isolation, Medication, Rants, Support | Tagged: , , , , | Permalink
Posted by chronicrants

Where are all of the men spoonies?

April 15, 2015

It’s not a surprise that there are more female voices in the social media spoonie world than male voices. After all, many (most?) autoimmune diseases affect many more women than men, some by ratios of 2:1, others 3:1 or even higher. Women in many western cultures are also raised to discuss their feelings and problems while men in those cultures are raised to pretend their problems don’t exist and to hide their feelings. There are probably other contributing factors, too. In the end, it comes down to a predominantly female space. And this is a problem.

It’s a problem because men often feel the same kinds of isolation that women do, but they see no one like them with whom to discuss it, so that leads to more feelings of isolation. It’s a problem because men need to discuss how they feel just like women do. It’s a problem because we often feel invisible, and without male representatives, men probably feel even more invisible.

And yet, we know there are men in the spoonie world. I’ve seen several on Twitter. There are a couple in my in-person support group, though they’re definitely out-numbered by women.  They’re around, but they’re few and far between, it seems.

I wrote once about wanting to participate in this project. As you can see in the description, the author wants a diversity of writers so that all readers can see themselves represented in the book. The author recently mentioned that all of the stories she has received so far are by women. She needs men to contribute. Where are the men? Why aren’t they participating?

I’ve been fortunate to have some wonderful commenters on this site. Of course, I have no way of knowing the gender of the people who read this blog and who don’t comment. Often the commenters’ genders are clear, though. So far, they’re almost all women. Occasionally someone emails me, and they have been almost entirely women. I sometimes get tweets. Those are mostly from women. Where are the men? Why aren’t they participating here? Yes, a couple times I have written about periods and other things than cisgender men can’t relate to. But the majority of what I write, while it comes from a female perspective, can also be relevant to men. Just like what I write comes from the perspective of someone short, bisexual, and sarcastic, but people who are tall, gay, straight, asexual, and not sarcastic can probably relate to a lot of it. So where are the men?

I don’t know exactly why I see and hear so little from men in the spoonie world, but I’m saying right now that you’re welcome in this space. I suspect you’re welcome in many others, too, but I can only speak for my own. So welcome! I hope you stick around and leave some comments so we can get to know each other. You’re an important part of the spoonie community. I hope you find your place in it.

Leave a Comment » | Isolation, Rants, Support | Tagged: , , | Permalink
Posted by chronicrants

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