This post is filed as Inspiration Sunday, because I flat-out stole the idea from FibroGeek (with her permission, so I guess that’s not really stealing). Over the last week or so I’ve posted out to Twitter and Facebook giving you the opportunity to ask me anything.
@_chris_willis asks ” I’m interested in how to sleep when all else fails. Mr. Google’s exhausted.”
So am I Chris, so am I! I wish I had one great answer for you on this, but I’ve yet to find it. I will say that I’ve found a few things that help me. I avoid eating large meals within about 3 hours of sleepy time, but I do try to eat a small snack a little before bed. I find that if I don’t do the latter I wake up starving about 2am (a protein bar is a good option), but if I eat too large of a meal too close to bedtime then indigestion keeps me up. Also, I’ve found that a good herbal tea can really help. I really like Yogi Bedtime Tea, and Serenitea from Fibrocane. One of those combined with a warm Epsom salt bath, really helps me fall asleep better. This link and this link also have some great ideas.
Tara Murphy asked “How Long did you think about starting the blog?”
About 2 seconds, maybe. Probably less. I’ve blogged in some form or another since around 2000. I had a personal journal I was still keeping (livejournal) when I got sick and I quickly realized that I wanted to share a lot more about my illness and be able to connect with others who were ill, and not just share what was going on with those who followed my personal journal. I also didn’t want to overwhelm my personal journal with illness-related stuff. I’d already launched another blog following my attempts to live frugally, so it wasn’t a big step to launch a second one following my health journey. Obviously, it’s changed a lot over the last five years, but my goal is still to share and to connect with others.
Michelle Smith Fejes asks “Do you get swelling with your flares?”
Not until recently. The last few months I’ve found that neuropathy has gotten much worse and part of that has been swelling in my hands and feet. Actually, as I type this I’m thinking back and realizing that swelling has probably been there a lot longer it’s just not been as bad. The last few months I’ve, like you, had times where I can’t make a fist. Luckily, my feet run very narrow so getting into shoes is never an issue (I guess I finally have reason to be thankful for the narrow feet). I went this past week to get tested for Small Fiber Neuropathy which can cause not only pain and numbness in the hands and feet, but swelling, as well as a variety of other common Fibro complaints. I should have results on that in about 2 weeks.
Valecia Goodman asks “Do you ever have people telling you what to do as if Fibro makes you completely incapable and stupid?”
Sadly, yes. This happened a lot more early on in my diagnosis. In the years since I think I’ve proven to those around me that I’m neither incapable nor stupid. I’ve also proven that I do my homework, and research well, and that I know way more about what is going on with my body, as well as what treatments are available than they will ever take the time to discover. Part of being an advocate for yourself is standing up to people. When they try to step in with advice again and again just let them know that you are doing the research and that you are doing the best you can with what is available. If they have some info to offer that you weren’t aware of thank them for it and tell them you will research it and talk to your doctor about it. Then move on. But, also remember that they have good intentions. They care about you and want you to feel better, that’s why they are so eager to offer this advice, it’s not because they think you are stupid or incapable but because they love you and know that you are overwhelmed. They just don’t stop to think that they might be giving you info you already have.
Fibro Geek asks “What has been the biggest challenge that you have faced since being diagnosed?”
Probably reaching the point of being willing to do ANYTHING to feel better. For the first two years I was sick I heard numerous times that I should consider looking at my diet. I was specifically told that I should cut out gluten, dairy, and eggs. I repeatedly found an excuse why that didn’t make sense. Then two years in I decided I’d try anything. I had a food sensitivity test panel run and sure enough what came back but gluten, dairy, eggs, and yeast. It was a huge challenge to change my diet and cut out so many foods. It wasn’t just a diet change but a lifestyle change to go from eating whatever was easy, cheap, and handy, to making conscious choices about what I put in my body. But, I saw the results so fast, and as fast I saw the results my husband saw them in me even faster. So, many times in the last 3+ years I’ve thought about how I’d love this or that, but then I think about what I’d be giving up to have it, and I now that it’s just not worth it.
Got another question for me? Ask it in the comments below and I’ll do my best to answer it asap. (fwiw I don’t see the Facebook comments below as fast as I do the regular ones).