Those three magic words: “I believe you”

June 12, 2013

I saw a new doctor today and now I’m beyond exhausted. Sitting up is unpleasant. I feel like my whole body is screaming at me to go rest on the couch with the tv and some popcorn. And who am I to deny my body what it wants? So this will be short.

The doctor I saw specializes in hard cases. He also sees a lot of patients with fatigue. Still, I was doubtful, and I think he could tell. He asked a lot of question – the most thorough questioning I’ve ever received (and I’ve received quite a bit!) At one point he asked if I ever get pins & needles anyplace. I said yes, and told him where. Then he asked if any of my doctors had ever addressed it. I was shocked to realized I hadn’t discussed it with them. Well, I had told one, but he said it was nothing. This guy disagreed. I tried to explain that I always filter what I tell doctors, trying to focus on the biggest issues, so they don’t think I’m a hypochondriac or something. He immediately understood, and said that he knows it’s common for patients to be ignored if they mention too many symptoms. It was amazing! He got it!

But there was one thing that wowed me more than any other. More than once, he uttered those three little words that every patient with a hard (or impossible) to diagnosis illness wants to hear: “I believe you.” I can’t tell you how amazing that felt. Here was a doctor who had read a 2-inch thick pile of my medical records, listened to my story once, and believed me! I don’t think this has ever happened to me before! Sure, I’ve had doctors believe me, but usually I don’t know that they believe me until after several visits, or maybe months or years of treatment. I know that my parents believe me. So do some friends. Other so-called friends (now ex-friends) did not believe me. Employers did not believe me. Strangers did not believe me. And yes, doctors and other medical professionals did not believe me.

I don’t know if he saw my tears. I didn’t want to call attention to them, but I didn’t want him to think I was upset. I was just so relieved! He believed me. He believed me. THE DOCTOR BELIEVED ME!

Since this is a short post, here’s a related bonus. I am so sick and tired of trying to convince people that my illness and disability are real. I am also tired of trying to convince them that ableism is real. Same with sexism and biphobia. So while this article is about sexism, I think it can be equally applied to all of the other -isms. I’m looking for justice and equality. I am happy to educate the uneducated. I will not tolerate the hateful.

2 Comments | Educating, Expectations, Fatigue, Frustration, Healthcare, Isolation, Milestones, Pain, Raves, Support, Symptoms | Permalink
Posted by chronicrants

What’s “normal” tired?

June 8, 2013

This is Pride week in Boston. I love Pride! It’s such a fun holiday.  Unfortunately, I can’t celebrate as much as I’d like. There are great parties Thursday night, then the Dyke March on Friday followed by the Dyke March after party, and then of course the parade on Saturday. There are parties Saturday night, and then more events on Sunday. And earlier in the week there are dedications, movies, etc. It’s a fun time, but who has the energy for all of that?

Boston Pride

My parents came with me to the parade today for the first time. We all had a lot of fun. We walked around, watched the parade, then walked around some more. By the end I was exhausted. I wanted to stay longer, see more, listen to the music, see more friends… but my body said no. My parents were tired too. So many it was normal to be so tired?

Then again, maybe I shouldn’t be comparing myself to people who are 30 years older than me. Maybe I shouldn’t be as tired as a couple of 60+ people. I looked around at my peers. Many of them went to the festivities that I missed on Thursday night, as well as the Dyke March. They walked in the parade today. They plan to go to a party tomorrow. They’re a bit tired, but after some sleep they’ll be fine. They’re my age. Is that what I should be aiming for? Is that how I’m supposed to feel?

It’s been so long since I felt “normal” amounts of energy that I have no idea what to expect now. The last time I felt that, I was around 20, so I suppose I would have less energy now, in my mid-30s, anyway. But how much less?

I know it’s impossible to measure my own health or even my goals against the health and reality of others. But I also know it’s human nature to try and compare anyway, so I don’t berate myself for it. Still, is there any point? Will I ever be close to achieving that level of so-called normalcy? There’s no way to know. But I’d sure love to get even part way there.

5 Comments | Expectations, Fatigue, Frustration, Isolation, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Seeing the good in others

May 23, 2013

A while back a friend had to have a planned surgery with a long recovery time. He told friends about it in advance, letting them know that he’d appreciate food, help with errands, and just being kept company during his recovery. He set up a calendar online where people could sign up for time slots to visit him. Everyone stepped up and he was well cared for, without his partner being completely overwhelmed with taking care of him while still working her full time job and managing the house.

When you have a chronic illness, it doesn’t work that way. The needs aren’t short-term and they’re often not as predictable. I never know a month in advance which days I’ll need help preparing dinner, going grocery shopping, or picking up prescriptions. I don’t know in advance which days I’ll be stuck at home and lonely and wanting company. And even if I did know these things, it’s hard to ask for help month after month, year after year, decade after decade. I don’t want to burden anyone.

That’s why I think that one of the few benefits of a chronic illness is that you see how amazing other people can be. I’ve had friends pick up groceries for me, bring me cleaning supplies, and get my prescriptions when I wasn’t able to get to the pharmacy. Every spring people put in my air conditioners and every fall they remove them. Friends change their plans so they can keep me company at my place. The amount of support has been incredible.

We’ve had some humidity this past week and it’s been pretty unpleasant. A friend had said he’d put in my air conditioners for the season, but he doesn’t live very close and won’t be by for a another week or two. I could wait, but already I’m sleeping badly and I’m having trouble breathing today. Those aren’t good, and they definitely won’t help my poor adrenal system to recover. What to do? I put out a call on Facebook and I was stunned at the response. I had figured it was just a more passive way of asking the usual folks for help. Instead, I got offers from people who I haven’t seen in years! I got offers from people who are more acquaintances than friends! They just want to help. How amazing!

So suddenly I had this long list of people who could help me. I had one scheduled for Sunday. Others said they’d help next week if my Sunday person fell through. There was still the original offer. And then today a friend called to say he’d come by to drop off something he’d borrowed. I’d thought about asking for help with my air conditioners but I didn’t want to impose since he’s already helping me out with something else. So imagine how floored I was when he asked if the a/c’s had been put in yet and if I needed any help!

I see a lot of bad stuff in the world. Sometimes I’m treated quite badly because of my health conditions. But sometimes I see how good and generous people truly are. I’m thankful that I get a glimpse of that from time to time. I sure don’t take it for granted!

I turned on that lovely a/c today and basked in the cool, clear air. It felt amazing. And I bet I’ll sleep well tonight.

Leave a Comment » | Expectations, Kindness, Limitations, Raves, Support, Symptoms, Thoughtfulness | Permalink
Posted by chronicrants

You deserve a good sex partner

May 19, 2013

Too often, people with chronic illnesses feel like we’re lucky to have whatever we get in life. We’re lucky to have a job, no matter how good or bad. We’re lucky to have a spouse, no matter how good or bad. We’re lucky to have friends, no matter how good or bad. But we deserve more than that. We deserve the best! And that’s true for sex partners, too.

I haven’t seen my sex buddy, D, in two very long weeks. There I was, feeling horny today, when I started to question whether I’m physically up to seeing him at all this week. After all, this recent downturn has been really bad, and every bit of activity makes it worse. I’ve written before about how sex can make me feel better, but is it worth trying? Then I remembered just how awesome D is, and I thought about how lucky I am. That made me realize that while I’m definitely lucky to have him in my life, and I shouldn’t take him for granted, I also should never settle for anything less. And neither should you.

Somehow, D has never been phased by my health stuff. I mean, I once crapped on him during sex and he just brushed it off and suggested we clean up together in the shower. Pretty awesome, right? Here are some other ways he’s completely wonderful about my health issues:

  • When I feel especially bad, he does all the work, and never complains.
  • When I’m in pain, he’s extra gentle.
  • He’s careful about avoiding touching areas that he knows are extra sensitive, like my wrists and feet.
  • He’s significantly larger than me and is always careful not to let his extra weight put too much pressure on any part of me that could hurt.
  • We both like sex just a little rough, and when he pins me down, he’s careful to avoid areas that he knows are a problem. He’ll pin my forearms instead of my wrists, for example.
  • When I wince, he always sees it and immediately asks how he can adjust things.
  • When something is clearly difficult for me, he doesn’t push it. For example, last month he was lying on top of me and tried to pull my head/neck up to kiss him. Clearly my body was having none of it, so he just changed positions so I could stay flat on the bed.
  • He respects my illness-related fears. Even if something doesn’t hurt, I might be scared that it will, so he avoids it.
  • He pays attention to good hurt vs. bad hurt and respects both. Good hurt was when he was sucking on my breast and I responded with “Ow! That feels good!” and he kept going. Bad hurt was when I yelped and winced and yelled, “Ow!” and he immediately stopped and asked what was wrong and what he could do differently.
  • When I need to switch positions at an inopportune time, he doesn’t say a word about it.

See what I mean? He’s awesome. Of course, it’s not all him. I have to do my part too.

I have to listen to my body and respect what it wants. I was young when the pain started, so I’ve never had sex without pain. That also means I’ve had a long time to learn how to adjust things. I may not be able to practice all of the techniques or positions I’ve read about, but I have found quite a few popular ones that I can do without pain. I am careful to pace myself. For example, I know that when I give a hand job, I can only go for so long with each hand before the pain gets too bad, so I’m careful to switch before I reach that point, and I always time the switch to be the least disruptive to him. I also position my body to have the right leverage for my arm without straining my neck. I pay attention to what works for him, and I find ways to improve on it that he enjoys and that don’t hurt me. And when pain does sneak in, I make an effort to not let it disrupt things. Like a few weeks ago, when I was just starting to orgasm, and it felt so good, and my body tensed up, and my toes curled, and… OH MY GOD! THAT HURTS!  But I didn’t lose it. I relaxed my feet and uncurled my toes and felt the pain go away just enough, and I kept my head where it needed to be – in the orgasm. I could have let that spear of pain interrupt things, but I didn’t. Obviously that doesn’t work when the pain is at its worst, but so many times I’ve been able to ignore it or use it. And it’s always worth it! Of course, the most important thing I do for myself is communicating. I think that communication is always important during sex, but it’s extra important if you’re dealing with pain and other chronic issues. Tell your partner what’s likely to cause problems in advance, and stop him/her if there are problems in the middle. They won’t mind. And if they do, they don’t deserve you.

So you need to do your part too. You need to make sure you’re doing the best you can for your body. Communicate and respect your own needs. And make sure it’s not all about you – do nice things for your partner, too. Most of all, don’t put up with anyone who isn’t kind, respectful, and understanding. You deserve all of those things, and don’t let anyone tell you otherwise. We’re sick. We have health problems. Fine. But we are still fine human beings to deserve to be treated as well as everyone else.

4 Comments | Educating, Expectations, Limitations, Pain, Relationships: Family & Friends & Dating & Sex, Support, Symptoms, Thoughtfulness | Permalink
Posted by chronicrants

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