The worst scream I’ve ever heard

March 21, 2013

It was the scream that woke me up. It was a horrible sound, full of pain.

It’s odd the way your brain notices things. First I realized I was sitting up in bed in the middle of the night. I heard the screams. Then I realized the screams were coming from me. And it was after that that I noticed the pain. Of course, this all happened in
a just a couple of seconds, but I definitely figured out the screams before I noticed the pain, and that surprised me.

I looked to my open bedroom windows and wondered if I’d woken anyone up, even as I put all of my effort into not screaming again. I had a firm grasp around my knee and there was nothing else to do but wait.

I don’t know what this is. It started happening about two years ago. It only happens occasionally, maybe once every 3 or 4 months. It only happens during the night while I’m asleep. And it’s excruciating. Unfortunately, I think it’s been getting worse. I don’t usually scream. Or even sit up. Whether it’s worse or not, it’s still just as mysterious. My naturopath and rheumatologist are stumped. When I told my father today, he asked if I’d seen an orthopedist. With all of my other problems, it never occurred to me to do anything about my knee locking up in my sleep. It’s horrible, but it’s rare, so why bother? Still, I’d like it to stop. Maybe seeing an orthopedist isn’t the worst idea.

It was around 1:15am and I was cold. The windows were open and it was probably 20 degrees outside. I like sleeping in a cold room. But I couldn’t lie down. I couldn’t even move a hand to pull up the blankets. I had to hold onto my knee because if it moved a bit in any direction, the searing pain would just be too much. After more than 20 years of chronic pain, this was the worst I’d ever experienced. The memory of that initial pain has been haunting me all day. But at that point, I just wanted it to go away. Then I was aware that I had to go to the bathroom. There was no way I could get off the bed, though.

After about 20 minutes, I still couldn’t unbend my knee, but I could shift my body a few inches and reach into my night-table drawer. I pulled out the cream that my naturopath had given me months ago for this very problem. I rubbed it on gently and waited. It didn’t help. I waited longer. When enough time had passed, I decided to make my way to the bathroom. I knew it would hurt, but some things can’t wait. I hobbled over, managed to sit, and was thankful (not for the first time!) to have the sink right next to the toilet so I could lower myself and pull myself up without putting as much pressure on my knee. Standing to wash my hands was hard, but I managed it, then I made my way back to the bed. [Note to self: make sure next apartment has bathroom right next to bedroom again.]

After a while I felt into a fitful sleep. I had weird dreams. I dreamed about Downton Abbey. I just watched the first season this week and it was in my head. I think my brain was mostly trying to not think about my knee. I dreamed about the email I would write to my friend, canceling today’s plans. I dreamed things that made no sense at all. And I dreamed about pain. I woke up too often, but at least I did get some sleep. I managed to keep my knee straight. Every time I shifted, it hurt. I wanted to roll over, but gravity’s effect on my knee was too painful. It was a lousy night.

I knew what to expect in the morning. Each time this happens, my knee hurts a bit the next day. I stay off my feet, and the following day it’s fine. I hated to cancel my plans for tonight, but they involved walking to the T, riding the T, and then sitting in cramped theater seats for a while. It was unlikely my knee could handle it, but I held out some hope. For some reason, though, my knee wasn’t just achy today, like all those times before. Today it was painful. Really painful. I’ve spent little time on the computer, because it hurts to sit in a chair where my knee can’t be straight. I mostly sat on the couch with my leg up today. But no matter where I was sitting, even with a brace on it, all would be good for a bit, and then WHAM! PAIN! It’s disturbing, and it’s one of the reasons I know this is getting worse.

It was a frustrating day. I couldn’t do my errands, of course, but I also couldn’t do things around the apartment, like laundry. It was a day of reading, tv, reading, tv, tv, reading, and tv. On the other hand, the pain has been a nice distraction from my other recent problems, so I guess that’s a silver lining.

Over the years my pain has come down on the pain scale. I’ve been thankful for my 2s and 3s. I’ve been glad my 4s and 5s weren’t worse. And today, as I keep feeling twinges of 5s, 6s, and 7s, I keep remembering last night’s 9.5 and I hope I don’t experience that again any time soon. And I wish none of us ever would.


A cathartic cry and Mom

March 20, 2013

It’s not like I haven’t thought about writing in the last two weeks. I’ve actually wanted to write here more than that one post. But I just couldn’t.

Last month I wrote about the latest disability insurance bullshit. After that delay, I got a bit depressed. I wasn’t thrilled about the depression, but I also wasn’t worried. I’ve experienced it before. It wasn’t too bad, and I knew it would go away once the insurance stuff got settled.

Cathartic Cry

Then last week I found out about a new delay. Now it looks like I should have an answer in April. Maybe. I had just gotten the notice from my landlord saying that I had to either renew my lease or give them notice. I had just gone to the bank to change my accounts, because I can no longer meet the minimum. All sorts of other things depend on this insurance decision. And it was delayed. Again. Still. More.

I was really depressed after that. I cancelled plans that I had been looking forward to for a long time, and I sat home alone in my apartment. I had no desire to go outside. I didn’t want to do anything. I dreaded seeing my friend the next day. She didn’t know the whole story. I didn’t want to explain it. I couldn’t explain it. But I also couldn’t have a happy, cheerful, pleasant visit.

Then I thought more about the way the insurance assholes are treating me like shit. They’re acting like I’m not a real person. They’re taking away from my focus on my health (ironically!) My health has suffered because of the stress of this. I was just starting to make real progress, and this bullshit has led to a backslide.

And I suddenly knew I needed to cry. I had to get it all out. I called the one person I really wanted to talk to: Mom.

I got her on her cell phone. She was on her way to a nice dinner party, so I tried to tell her we could talk later, but she heard it in my voice. She insisted we talk. What a mom! I sobbed on the phone to her for a long time. Yes, these were full-out sobs. I told her my frustrations, my anger, my fears. She listened and somehow she said all the right things. She supported me.

After that call I felt much better. It was the first time I’d cried about this insurance crap, and I really needed it. I was exhausted, but I felt lighter. I spent the night relaxing, and I chose a light-hearted, fun movie to watch before crashing early. The cry had really worn me out. The next day, I cancelled the long-awaited plans with my friend, and instead spent the day with my mom. The sun was out for a change, and we took a long (well, long for me) walk in a park I’d never been to. Fresh air, sunshine, trees, a pond, and dogs really cheered me up. Best of all, my mom is my best friend, and it was great to talk to her. Back at her place, we talked a lot. I helped her clean out her desk, which made her thrilled and made me feel useful and productive for a change. We had dinner with my dad, and then the three of us sat around talking about all sorts of things that had nothing to do with my health or with insurance. Like “normal” people. It was relaxing and lovely. I left their house feeling like I could handle things again.

I won’t say that my depression is gone, but it’s a hell of a lot better than it was a few days ago. Sometimes all it takes is a good, cathartic cry. And mom.


Following the gray

March 7, 2013

I thought my last post was a day or two ago. I was shocked just now to see that it was THREE days ago!

This is a bad, bad, bad day for me. Boston has been getting a lot of rain and snow, which I don’t mind too much (as long as thePhoto 3 snow isn’t enough to require shoveling.) What I do mind is the lack of sun. Even on the days without precipitation, there’s no sun! A few times I’ve woken up to see some blue sky out my window, but I can only see a sliver from my bed, by the time I get up an hour later, it’s gone. A day or two ago (I really can’t tell the days anymore) I saw some blue sky. It was so exciting! I had thought about taking a walk, and that gave me the push I needed. I walked a few blocks and back, then found a place to sit. It was too cold to sit still, but I did it anyway for as long as I could because there was blue sky! It really helped. Unfortunately, the sun was behind the clouds and sunset came less than an hour later. And that was the last time I saw blue sky.

When I was a kid, I knew I didn’t like the early sunsets in the winter. I knew it, but I didn’t know why. It wasn’t until much later Photo 1that I realized it was a seasonal thing. And the first time I heard of seasonal affective disorder (SAD), it just clicked. I suddenly knew why I became grumpy every October, and bitchy by November. And those manic days at the start of spring made sense too.

I’ve been feeling it getting worse every day. Last week I felt so lousy from a resurgence of symptoms that I didn’t leave the house for three days. Those were the sunny days, of course. Since then, I’ve been dealing with SAD, the worse symptoms, and the latest round of insurance bullshit. Add to that concern over 5 ill family members (yeah, it’s been an odd week), uncertainty over my immediate future (thanks to the insurance crap,) and the loneliness of sitting home by myself while my friends are all at work, and you can begin to understand why this hasn’t been the greatest week for me.

The gray weather can’t last forever. That’s what I keep telling myself. This is a long stretch, even for Boston. The sun should be out on Saturday. I have no plans for that day, but I sure hope to be outside. A lot. In the sun. Enjoying every minute of it as much as I can. The rest of the shit will still be in my life, but I have a feeling it won’t be nearly as bad when the sun comes out. I just hope it comes out soon.


Being ill doesn’t have to mean watching tv all day… but it can

February 26, 2013

There is a stereotype of people with chronic illnesses sitting on the couch or lying in bed and watching tv all day long. That’s it. They don’t do anything else.

Is this true for everyone? NO! DEFINITELY NOT!

Is this true for some people? YES! OF COURSE!

The point? Don’t generalize. Just because something is true for some people doesn’t mean it’s true for everyone. Do some gay men have great fashion sense? Yes. Do they all? No. Do some women love clothes shopping? Yes. Do they all? No. (I’m one that doesn’t!) Do some sick people lay around all day watching tv? Yes. Do they all? No. If they do, do they have a good reason? Some yes, some no.

I’ve encountered this stereotype a lot. Of course, it doesn’t just apply to ill people who don’t work. I’ve seen it applied to all people who don’t work. When I quit my job several years ago, people kept asking me what I did all day. Apparently they lacked the imagination or interests to figure out what anyone could possibly do besides work at a job for those extra 40+ hours a week. The truth was, I was incredibly busy. People were shocked to hear that I was watching less tv than ever before, and I’d had to stop watching some shows altogether because I just didn’t have time. What did I do? I hung out with other unemployed friends (this was at the height of the recession, so there were several to hang out with.) I read a lot. I exercised regularly. I learned to cook. I started some interesting new projects. I volunteered twice a week at a nonprofit. I socialized a lot more – I rested during the day so I could go out at night, even several nights in a row. I did laundry, cooking, grocery shopping, and other chores on weekdays so I could go out with friends on weekends. I slept healthy amounts every night. I did my physical therapy nearly every day. When I found time, I squeezed in looking for a new job. It was a fun, busy time, and I loved it all. Who had time to watch tv? Not me.

Of course, being out of work this time around is completely different. I don’t have the energy for most of those things. I have entire days where I don’t leave the house. So I have to find other ways to fill my days.

For starters, each thing I do takes longer than it used to. Taking a shower and getting dressed takes a while. Cooking takes a while. Doing dishes takes a while. I also have to cook a lot more than I used to, since I’m not eating any processed foods. In between those at-home activities, I do leave the house. My friends are all working now, but during the day I can visit with relatives who aren’t working. Or I buy groceries. I do laundry. And I read. I read a lot. I read a lot every day and that’s what I spend most of my time doing. And yes, I do watch a lot of tv. I’ve noticed that the amount of tv I watch is directly proportional to my cognitive problems. When I have good focus and my mind is working properly, I don’t watch much tv at all. When things are fuzzy, I watch more.

This is why on a typical day at home, I watch an hour or so of tv while I eat lunch, then shut it off. It comes back on while I eat dinner. If I feel clear-headed, I usually have no patience for tv and I’d rather be doing something mentally active, so I shut it off after I eat. If I’m tired or not thinking clearly, I watch until bedtime, which could be several hours. This is also why I watch almost non-stop during my waking hours when I have a fever; I just don’t have the focus to do anything else. When I get sick of watching tv then I know the fever is breaking and I’m getting better.

On Saturday I had a lovely day. I rested all morning and early afternoon. In the late afternoon I played with my friend’s kids, chatted with my friend, helped get the kids to bed, then played board games. And since then I’ve been paying the price. It started with some fatigue on Sunday afternoon. By yesterday, I felt really crappy. I’ve had a sore throat since then, so I think my thyroid is enlarged. And I feel fuzzy-headed. I spent a lot of yesterday watching tv. I tried to read in the afternoon, but I read the same paragraph 5 times before giving up. Then I took a nap. And then I watched more tv. It was a miserable day. I composed a version of this post in my head, but didn’t have the energy or desire to type it out. I felt lousy and just wanted to ignore everything. Checking Facebook or reading a blog seemed to take too much effort. Tv is easy. It’s passive. And it was perfect.

Today is a mix. I watched for a couple hours around lunchtime before shutting it off. But when I tried to read, I only got through a few paragraphs and I just didn’t feel like I was following along. I managed to participate in the HAchat today, and now I’m typing this, so maybe I’m getting better. I hope so. But then, I’ve had to retype words over and over to get them right. It’s hard to compose sentences. So who knows. I haven’t left the house in over 48 hours and it’s a bit much. I could use to buy groceries. (A downside to living alone is having no one to get food when you feel like crap.) But I probably shouldn’t drive at this point, and I’m definitely not up to walking. Maybe tomorrow.

So to all those who assume that because I’m ill and not working that I spend all day watching tv because I’m lazy, I want to say that I find small ways to contribute to society. I’m a good friend, daughter, granddaughter, and auntie. And if I do spend all day watching tv, that’s none of your damn business!