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living with pain

At the opening service of camp meeting, someone talked about Charles Naylor... Naylor was a prominent lyricist and author in the early Church of God movement. I started reading some Church of God history last year, but my project was quickly eclipsed by other seminary reading. If I had gotten very far, I would have learned that Naylor was disabled and eventually bedridden for most of his adult life. It was from this state that he did his writing and even some of his speaking. It amazes me that he did public appearances on a cot at the time in which he lived!

The person speaking--I think it was actually a video clip of Robert Reardon--talked about people being hesitant to visit Naylor because they didn't know how to visit an invalid. I remember him saying, "He lived a lonely life..." Sadly, that is a life that I fear... I have at times been homebound due to illness--with no visitors and very few phone calls. I have received emails from people who said that the reason they don't call is because I am too difficult to talk to because of the way my pain affects my mood. It's true. Pain does affect my mood negatively. I've had discussions with Alexis about this, and I've had discussions with other people in my family about it. But I wish there were words to explain the way it felt to read these things, to feel that I was responsible to fix something I can't fix or lose a friendship in the process. I've lost so many friendships between trying to keep up with daily life and apparently being too difficult to deal with... No matter how much grace I try to use, it doesn't stop the pain, especially when things never change with all my efforts. I want to beg my doctor to leave me on the medication that works; but I can't because it has long-term side effects to my kidneys. I'm down to 7.5 mg, and already my hands are hurting when I lift things and my legs are hurting on my walks to campus. I am fatiguing again, and I'm a grouch. I dread dropping down to 5 mg next week; but I'm afraid there are no alternatives. People have stopped calling me, and I need to feel like I am valued now more than ever. But that isn't something a person can ask for.

I think I need to read some of Naylor's writing. Somehow I need to not be negatively affected by this. I don't know how that will happen.

Comments

( 4 comments — Leave a comment )
lilsinger_95
Jul. 3rd, 2007 01:35 pm (UTC)
just *hugs*
yummykit
Jul. 3rd, 2007 02:06 pm (UTC)
I know exactly what you mean about fearing this lonely life. When I first got into a flare up about 5 1/2 years ago, I lost a lot of friends and went through a lonely period where I was completely bedridden and would go days or weeks without seeing people other than my mom and occasionally running into a roommate or two. I went through this again during the flare up that I got into in Seattle except this time I didn't have my mom or any roommates...so I just was by myself. People do tend to stop calling or asking to visit, but I think in my situation it is because 1) they don't want to see the truth, and 2) I often times choose to NOT have visitors when I am really bedridden because I don't like people seeing me like that...there's a reason I'm in bed and not out and about, but I don't share that with all of my friends. Very few ever will get to see me like that and I guess I like it that way.

Anyway...just wanted to say I feel the same and empathize!
3kitties
Jul. 3rd, 2007 03:18 pm (UTC)
thanks
Thanks for the reply. It helps to know that someone understands. Walking up the stairs from doing laundry and realizing that this didn't hurt two years ago, I'm really having a hard time...
yummykit
Jul. 3rd, 2007 03:29 pm (UTC)
Re: thanks
Agreed. I am literally falling down the stairs right now because of the flare that I'm in and I'm having to look at the option of adding a cane to my wardrobe occasionally...ugh, I don't even want to think about it!! It is so frustrating to know that you haven't always been this way and to know that it can be better.

Feel better!
( 4 comments — Leave a comment )

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Sarah Blake LaRose
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