Smile and ignore it

July 3, 2013

My finger hurts. It’s swollen and painful and there’s nothing I can do about it. This is new. I’ve never had anything like this before. There’s no sign of a bite or sting, so it’s probably my immune system acting up, even though it’s just this one finger. It hurts to use it in any way. I’m having trouble with activities from typing to wiping my own ass. So what can I do?

Smile and ignore it, that’s what I can do. I spoke to my doc. I’ll take some extra Vitamin D. I’ll ice it. I’ll take some arnica. But there’s really nothing else I can do, so I’ll just smile and ignore it and move on with my day. It sucks, but so be it. I’ve suffered worse before, and I’m sure I will again.

And since typing is incredibly painful, I’ll make this a short post. Time to smile, ignore it, and read a book. I’m just glad this is one that can be ignored (sort of.)

7 Comments | Frustration, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Lessons in limitations

July 1, 2013

I’ve been trying to convince myself that, if need be, I could do some part time work. It wouldn’t be much, but maybe a few hours every day. It would be something I could do from home, something computer-based. And then I got a reality check.

The other day I started a new blog. I’d been thinking about it for a while and I finally took the leap. This blog is about 2 years old and I’d forgotten just how long it took to set this up. Also, I was in much better health when I set this up. Hell, I was even working full time!

I set aside lot of time and I got to work. I signed up a domain name, and got the basic site set up. I created an email account to use for the work associated with the site. I signed up for a Twitter account related to the blog. Every time I signed up for something new, I had to confirm it through email. I had to make sure it all connected. I spent some time finding just the right look for the blog. I chose an avatar to associate with the blog account, the email account, and the Twitter account. I wrote the “About” page. I really wanted to write my first post, but I just didn’t have the energy.

In the end, I spent more than 3 hours working on my new blog. I got it all set up and ready for my first post. Well, it was mostly ready. There are some security things I still need to do and some other small items to take care of. But it’s mostly done. And by the time I got to that point, after 3 hours of work on the computer, I was mentally and physically exhausted. I was worn out. I was in pain. I’d had it. All I wanted to do was lie down. My eyes hurt, so I figured it would be good to read a book for a bit. I only read 2 pages. I was too tired to read.

So I learned a lesson. As much as I want to think otherwise, I’m not ready for a job, even a part time one. Sure, I spend lots of time on the computer now, but it’s broken up into small bits and it’s mostly reading. Being more actively engaged and sitting for so long was just too much. I’m not ready.

I just wish the insurance company and social security would read this.

3 Comments | Expectations, Fatigue, Frustration, Job, Limitations, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

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

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