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When I was in college, I was completely obsessed with the Broadway musical RENT. I’ve seen it three times on Broadway – and the first two times, I made the very risky decision to camp out overnight on 43rd Street for tickets. It was a thing back then. There’s a song in it called “Will I Lose My Dignity?” It’s a round started at the AIDS support group several of the characters go to, and all of the characters eventually join in. Here’s a clip from the movie version, with lyrics:
And this is where I confess that I’m scared. Not of HIV or AIDS, but of becoming disabled nonetheless. When I was getting into the shower the other night, I told Tom that I used to ask him to bathe me when I felt that bad. My legs were so stiff I could barely walk, and I certainly couldn’t have sat down in the tub for a bath instead of a shower. It would have hurt to try to bend that much. My back was sore and my arms were tired. It wasn’t even my worst CFS flareup. But that was the thing. When I used to feel this bad, Tom was always willing to help me wash my hair and stay with me to make sure I was okay while I washed the rest of my body. But I’ve been feeling this bad more and more often, and as wonderful a husband as he is, I just can’t ask him to put in that level of assistance with my personal care all the time. And I don’t want him to, because I hate feeling so helpless, like I can’t do basic things for myself.
But I’ve been depending on him more and more.
It’s not just the Chronic Fatigue Syndrome, which is insidious in its own right. It’s also the depression. I don’t actually have anything bad going on in my life to account for my ongoing depressed mood. But that’s the thing about depression – it can be triggered by external factors, but it doesn’t have to be. And I’m not crying all the time or anything, but it’s more of the other stuff. From the Mayo Clinic’s list of depression symptoms, here’s what I’ve been up against lately:
- Irritability or frustration, even over small matters
- Loss of interest or pleasure in normal activities
- Insomnia (exacerbating my CFS)
- In some people it causes increased cravings for food and weight gain
- Agitation or restlessness — for example, pacing, hand-wringing or an inability to sit still
- Slowed thinking, speaking or body movements
- Indecisiveness, distractibility, and decreased concentration
- Fatigue, tiredness and loss of energy — even small tasks may seem to require a lot of effort
- Feelings of worthlessness or guilt, fixating on past failures or blaming yourself when things aren’t going right
- Trouble thinking, concentrating, making decisions, and remembering things
- Unexplained physical problems, such as back pain or headaches
Quite a list, right? In some ways, participating in this year’s National Novel Writing Month helped me cope with some of this, but in other ways, it just made my problems more pronounced. I’m quite proud that most of my end-of-the-month client deadlines were met early instead of just on time, though it still seems a miracle to me since we all had Thanksgiving in the middle of everything.
But there have been other months where I’ve really struggled with work. I have always delivered my client content – the work has always gotten done – but I found myself paralyzed by billing issues over the summer. It took me five times as long to get things done because I was worried sick over money. And it wasn’t just feeling helpless over it, it was actually being helpless. You can email your contact every single day about getting paid, but you can’t make the company cut a check. (Especially when your contact isn’t even the one who handles the money.) In one case, it was bureaucracy in the way. In the other case…I still don’t know what the holdup was. But my concentration was not where it needed to be, and I wasted too much energy that I needed for other things.
And I think I’m still recovering from that. We were in a bad way, financially, and when I needed to buckle down and get things done, it wasn’t like when I was in college. I used to procrastinate terribly before pulling off something wonderful at the last minute, because I worked great under pressure. But now, when the pressure is on, it just seems impossible to get stuff done. I started handling one recurring client project myself instead of giving it to one of my writers, to save on my business expenses. But whereas I should be able to knock a certain amount of writing out in 30-45 minutes, it was taking me three hours. Oh, it all got done, and done well. But I was having to spend more of my time and energy on it than I should have been.
We’re back on our feet, as far as money goes now, and I managed to write about 50,000 words of fiction in November, so I’m hoping to get back in my groove as far as writing what I need to write, as opposed to writing what I want to write. The pressure isn’t as great now.
But I’m so afraid that, one day, I’m just going to be unable to do anything. If there’s a death in the family, will depression crush me so hard I’m not good for anything? What if my body becomes more and more broken by an illness my doctor didn’t even want to talk to me about since there isn’t a diagnostic test for it? I’m so grateful that I have work that I can do at my own pace, on my own schedule, in my own home, because I’m good at it and it pays well enough that I don’t need to put in the full time hours that my body and brain can’t handle anymore. What happens if I can’t do even this much anymore, though? Instead of stiff legs that have me walking at a glacial pace and taking the stairs one at a time, what happens if the tenderness in the skin and muscles of my arms gets so strong and so persistent that I can’t type or use my mouse? (I can’t even fathom letting my clients down. I’d have to hire someone to help with the editing, and even with my email.) What if the exhaustion gets so bad I actually end up bedridden, like so many others who have CFS? Oh God, what if I can’t drive anymore, and I have to depend on Tom or others to take me anywhere?
I know this is all hypothetical. But I feel like I’m losing dominion over my body little by little as time goes on. I mean, I used to be able to kick my leg as high as Tom’s head. Now I can’t even bend my knees to pick something up of the floor sometimes. I think of women I respect, like Anissa (RIP) and Erin (who I’m no longer friends with), who have had to cope with bodies that just don’t work like they used to. I hope that I can have their sort of courage to keep on keeping on if things go as badly as I fear they might. It’s not like we get a choice to suddenly be healthy again.
I already don’t like my “new normal,” where I feel the pain and stiffness rolling in with the darkness each night. (Poor Tom. My health problems all get worse as the day gets later, usually kicking in right about the time he gets home from work.) I don’t like that it takes me longer to write than it used to, that it’s harder for me to write than it used to be. I don’t like crawling up the stairs at bedtime, or alternately taking baby steps up the stairs because I can’t bend over to crawl. I don’t like that the dirty laundry always piles up now – my only real assigned chore – because I can’t manage dragging the full laundry bags down the stairs myself anymore, and I can only stand to fold the clean laundry for about five minutes before my back hurts too much. I don’t like that I’m always telling TJ I can’t play in his room because I’m too tired or too sore to make an extra trip up the stairs. I don’t like that I’ve gone up a pants size, and may go up another, because I’m hungry all the time and can’t manage to do even a minute of exercise at a time most days. I don’t like that I’m always too tired and hurting to much to be a wife to my husband.
Maybe I’m just having a bad bout of feeling sorry for myself. I hope so. Maybe I’ll find some way to get better, even a little bit, if not all the way. I don’t know.
But thanks in advance for your support.
Read my Big Fat Medical Update for more details.
That’s me: Christina Gleason. I’m a writer, editor, and disability advocate. I'm a multiply disabled autistic lady doing my best in this world built for abled people. I’m a geek for grammar, fantasy, and casual gaming. I hate vegetables. I cannot reliably speak, so I’ll happily conduct business over email or messaging instead.
