Chronic illness/self worth

Warning: Long, personal muse and request for advice to follow!

This is an issue I struggle with and know that some of my BB friends also have chronic illness and pain, so I'm looking for some advice on how you manage the day-to-day of living with chronic pain.

What probably bothers me most is that during a flare, I feel pretty useless. I have an extreme amount of inflammation that meds aren't able to keep in control and loss of blood, which my body is replacing so that's good, but when it's bad, I sleep a LOT, as in all night and a good portion of the day, then struggle to stay focused when I absolutely must stay up. This gives my husband extra work at home and affects me being able to do very much work outside the home. It really hit hard when I had to leave work unexpectedly (first time at this job) the other day to go to the hospital.

It means not being able to make commitments at church because I don't know if I'll be in a flare. There's stuff I feel like I could be doing to help my family, help the church, help the kids in the classroom. You know...LIVE! This doesn't feel like living, like contributing in the way a person should be able to both in the Christian world or simply as a human being in society.

How do you deal with those feelings? Have you found things you can do as a believer to still be a witness and share your faith or help out your church/community that do not require you to disappoint people? For example, there was a need for a cook for a camp and I agreed to do it, then couldn't because I ended up in a flare when the time came. I'd been very excited and the pastor had been very grateful as nobody else was available. I felt completely horrible and simply no longer agree to stuff for fear I'll have to back out.

It makes for a very lonely existence, just staying in the background, living in fear of when the next flare hits, etc.. I don't struggle much with depression, but do get upset when people mistake my lack of involvement and need for sleep for depression and suggest I get therapy or something. I do get depressed sometimes, but don't feel it is anything abnormal and I still WANT to do stuff, I'm just limited and that frustrates me more than depresses me. There's some fear involved as my inflammation levels put me at imminent risk of a heart attack or stroke, so the doctor told me to avoid stress (HA!) and that means any kind of stress, even the good kind so I tend to try to be more flat emotionally as even getting very joyful, such as really enjoying watching kids perform a play, getting exciting over an opportunity one of my kids has, or even just laughing a lot usually sets my heart off (part of the inflammation includes an enlarged heart) and it could take days to get back to normal.

Spiritually? I'm starting to get back on track, but do admit that for a while, the spiritual side of things went backwards and I lost my zest for studying theology and praying, talking to God on a regular basis. It stopped being a habit and just felt pointless, but that's starting to go away. Still, it's a shameful place compared to where I used to be, still trying to climb back up. My pastor advised to just keep doing things like before even when I don't want to until it ends, and that advice was really good and seems as if things are at the beginning of returning to normal.

Still, it isn't easy and it is to the point the realization that this may not be something that gets resolved anytime soon, if ever, is really setting in so now I need to figure out how to live with it, around it, through it instead of waiting for it to go away and don't quite know how to start. The realization really stinks, but having to leave work the other day and sleeping more than I ever have really was a wake up call to quit waiting for it to magically go away and start dealing with it.

 

I'm grateful for all these replies. Thank you!

Jim, after my first series of migraines, I had to work on my speech and regaining strength on one side. It took a couple years to be able to walk, hold cups, etc. without it being noticeable. That is a hard thing to deal with...couldn't write except on a keyboard and couldn't eat in public, often hid even at home so I could eat with my hands since fine motor skills were rough for a time. I am glad to hear you've worked through your even more intense issue and come out on top!

Scarlett, funny you should bring up that story in the Bible. It's been on my mind a lot. Just a few days ago I finished reading a book called "The First Stone, Diary of Mary Magdalene" by Bodie and Brock Thoene. It's considered fiction, but it's historical fiction with extremely strong historical facts throughout. That's really what triggered me back into prayer even though it seems not to be doing much (maybe it's keeping me alive though?) and got me thinking of the healing miracles in the Bible and how we have a Physician. Now that I'm sitting here thinking about it more, there were plenty of people healed that weren't even following him yet or that had been too physically ill to do things for God's glory, yet they were healed and God cared about them anyhow.

I'd started getting into the very wrong mindset that maybe, just maybe, things with God might be the same as I see so often in the corporate church. Those who are able to do things...give money, get really involved and such, are regarded as being more needed and those that aren't, well, they don't get noticed much because they aren't seen as able to contribute much so they just get a little pity here and there and not really taken as a serious part of the church...even their ideas don't have as much weight as the ideas of those that can do more. That got me thinking about the Bible and how most people there DID physical stuff. They traveled, taught, cooked, built, and were very involved.

Guess I needed the reminder that Yeshua came for people equally, didn't suffer more on the cross for one more than the other, no matter their station or ability. So I guess that must mean we each matter equally and are equally loved. Okay, maybe not equally loved since it seems at least one disciple was loved more than the others, but still, matter as much if He'd do the same for each.