Wednesday, June 20, 2018

Dealing with Chronic Illness (Transcript from IDP006)

The following is a transcript from The Ideally-Daily Podcast Episode #006 in which I talked briefly about chronic illness before I shared a story about a "disappointing dental disaster." I realized today that I had never gone back and published the transcript from the first half of this podcast, and I wanted to reach out today to all those who may be suffering from chronic illness.

I hear you. I have been there myself. I still have issues that I'm dealing with, but thank goodness I have found some relief in remission for the past several years. But if I could go back and give myself something to latch onto and to hope for, I would tell myself the following:

Hang on! No matter how hopeless and frustrating things may feel, please trust that things will get better. But don't just wait for that day. Do the best you can today, this hour, this minute, with the situation you are in. Just do what you can, forgive yourself for what you can't, and try to press forward with an attitude of gratitude for the little things that do go right today. And know that you are still valuable, loved, and useful to society and your family, even with all the challenges that you have. Be grateful for the good days, no matter how few and far between.

That is the advice I would give myself if I could go back and reach out to the suffering version of me that couldn't hardly get out of bed some days and felt frustrated and in pain. It's so hard though, and I know that it can seem impossible to even move forward for another minute. But you can do this. And it will get better. ~JS~ 🌞

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Here's the link to the podcast from May 2018 where I addressed chronic illness, and the transcript of that portion of the episode.



Transcript from IDP#006 - Chronic Illness portion:

I'm excited about today, because it is wellness Wednesday, and there is a topic that I've been wanting to talk about for a little while, and I actually went back and was looking over my blog this morning, to find if I had any posts about it, and I couldn't find anything, and I'm sure that there's something there. But, I wanted to talk just a little bit today about chronic illness, and then I want that to springboard into just sharing a funny story with you, from several years ago, that I found in my journal, that I should have totally made into a post, but apparently I never did, so today, its going to become one.

So, chronic illness. The reason I wanted to talk about this briefly is I just wanted to share a little bit of my journey through some health issues that I had, and hope that maybe that can connect with some of you who might be out there still dealing with issues related to chronic illness. And, I just remember through this time, when I was struggling so much with my health, you know, just not being able to do all the things that I used to do for fun and enjoyment, and to make my life meaningful, and I really had to find new ways to contribute.

So, long story short, on another day I will tell probably the whole story, but long story short, basically sometime after my sixth child was born, I started having some major health issues where I just ... I mean, it was like chronic fatigue, pain ... Anyway, it ended up being diagnosed briefly for a while as probably just fibromyalgia, which of course means that ... A lot of times it means that they can't figure out exactly what's going on, but you have the symptoms, so that's a whole other podcast right there.

But, later, a few years after that, I ended up being diagnosed with psoriatic arthritis, which is when your immune system is attacking your joints and your skin. So, if you've heard of psoriasis, psoriatic arthritis is psoriasis but then also that immune system is not just attacking your skin, which is the psoriasis, but it's also attacking your joints, which is the arthritis part of it.

So, I never did end up suffering any visible joint damage, however, so we're totally, maybe a little bit unsure of whether that's really what was going on, but long story short, for about three years, I was being treated with pretty heavy-duty medications, trying to get my immune system to calm down, and I just ... And I still had life going on. You know, I had seven kids by the time all that was going on, and my youngest being like preschool aged, and my oldest in high school, and it was just still a very busy time for me.

Luckily, I was blessed that my husband was, you know, working, and I didn't need to at the time, and so financially, we were doing okay, but health-wise, there were days when I spent most of the day in bed, and I would get up, and I would start to ... You know, I'd get dressed or whatever, and then I just kind of made like a little desk on my bed, and I would sit in bed with my laptop, and that's kind of when I started getting into a lot of different online things. For a while, I did some web designing for people and things. I just had to find stuff that I could do that wasn't physical stuff, because I was in so much pain, like just swelling and stuff, that I couldn't really do like normal household tasks very easily. So that was a longer version than I was planning to share, but I know you're really surprised right? Probably not.

But anyway, the point is that I had this time period where things were pretty rough, and for whatever reason, and by the grace of God, I was able to go into remission with that illness, I don't even know how many years ago now. So it's a little bit in my distant past, and to the point where sometimes I forget that there are people out there that are struggling every single day, just to put one foot in front of the other, and to do the very, very most basic things, and I just wanted to put, I guess, a plug out there, and some empathy for anybody going through those kind of issues, and just encourage you to just keep going, and to try to find ways that you can still contribute with your new situation.

It honestly wasn't until I, like, 100% accepted my situation and said, "Okay, this is how it's going to be the rest of my life, so I'm just going to have to do the best I can," and I kind of like stopped fighting it, I guess, and accepted it. It was shortly after that, within the next year after that, that it went into remission. So, I don't know exactly all the reasons everything happened the way it did, and I'm always knocking on wood, worried that it's going to come back, and I still deal with fatigue and occasional more pain than should be normal for my age, but it's definitely taken a backseat.

And, last week, I came across somebody's Instagram, who was posting about dealing with a major chronic illness, and just trying to make it through each day, and I was like, "Oh my gosh. I mean, how could I forget those years of struggle?" But, you know, I don't know. I just wanted to make a point to share that part of my story.

For those of you who are like, "Well, it's easy for you to be happy and cheerful, because your life is perfect," you know? It totally isn't. As a matter of fact, I started [inaudible 00:06:37], the blog, when I was in the middle of a lot of those issues, so I just discovered that you know, I would feel like, "I am such a terrible mother. I cannot make dinner for my family. You know, I'm laying in bed. I should be out there cleaning the house, and helping take care of my family."

And I had to learn to be like, "Hey," to one of my kids, "Hey, let's sit down here together and you show me something cool on the computer," or, "Let's have a show that we watch together," or, "Let's read a book together." I had to find other ways to be a good mom than the ways that I had traditionally thought I had to act to be a good mom.

So, if you are dealing with any of these kind of situations, I just want to reach out and put a big hug around you, and tell you that it will be okay, and it might not go away when you want it to, or in some cases ever. But just enjoy the good days that you do have, and look forward to them, and just do the best you can on your bad days, and don't put yourself down. Because I guarantee you, if you have a good day, you're going to be up doing stuff. It's not that you're lazy. You are not lazy. You are suffering from illness, and that was another thing that was really hard for me during that time.

Anyway, I just wanted to bring that up a little bit and then springboard that into a fun little story that I want to share with you that I came across. 

(For a transcript of the story "A Disappointing Dental Disaster" visit https://jumbledsunshine.blogspot.com/2018/05/a-disappointing-dental-disaster-idp006.html)

Here's to more good days than bad days! Chronic illness sufferers are rock stars! You are a warrior!!
~JS~ 🌞🌄

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