Answering Questions about Being Chronically Ill

Happy Monday! Before we get into today’s post, I want to give you guys a heads up: this will be the last week of posts on Monday, Wednesday, and Friday for a little while. This is a good thing because I’m starting a new job this week! I hope to be back to the MWF schedule by September, but for now I’m removing some pressure from myself. Going forward, there will be posts on Tuesday and Friday, and maybe some other posts sprinkled in if I can manage.

ANYWAY. I thought I would do something different and open the post up to you. I asked on Facebook, Twitter, Tumblr, and Instagram for you to send me your questions about chronic illness. They could be about chronic illness in general or about my specific conditions. I even created an account so you could ask them anonymously! I’ve also shared questions that I’ve been asked over recent weeks because I answered them privately. I hope you enjoy this post and that you learn a lot! And if you have a question that’s not listed here, feel free to ask it in the comments.

I've lived with a variety of chronic illnesses for over 10 years now, and it's a concept that's often hard to understand unless you live the chronically ill life. To help demystify it a bit, I'm answering questions about living with chronic illnesses.

What does “chronic illness” mean? This is a question that I’ve gotten a fair amount over the years in many forms. Basically, it’s an illness that doesn’t have a cure and lasts long-term, which includes a ton of conditions. And “a cure” means a wide variety of things! For example, some people have gotten hysterectomies for endometriosis. While that can help with some symptoms, it doesn’t stop those people from having the illness. Plenty of people keep having endometriosis symptoms and flares even after having their uterus removed. This is one of the reasons why I hate when people say, “X cured my [chronic illness].” There is a 99.9% chance that it isn’t cured; you’re in remission, which is awesome, but you’re not cured. (Remission is when you don’t have symptoms of your illness.) I also want to clarify that chronic illness is a subset of chronic conditions. Chronic conditions is an umbrella term for chronic illness, pain, and more. What’s the difference? Well, I have a condition called tarsal coalition in both of my ankles which is one of the reasons why I had my surgery in March. Tarsal coalition is technically a birth defect, as my ankles didn’t form correctly, but it’s not an illness.

How is RA different from arthritis? I’ve also gotten this question a lot! Basically, arthritis is an umbrella term for 100+ diseases and conditions (x). What people tend to think of as arthritis is actually osteoarthritis, which is wear-and-tear of joints from getting older, being an athlete, etc. RA (rheumatoid arthritis) is a type of arthritis, and it’s an autoimmune disease. Basically, my immune system is broken and it attacks mostly my joints.

Was your [surgery] recovery fairly linear, slow and steady, up and down, or another cliche? (Referring to my March 26 subtalar fusion.) So far, it has been mostly linear but very slow. I have the “benefit” of having done this before, so I remember that it’s difficult and slow. (When I saw my surgery and we decided on surgery, he asked me, “Do you remember what the recovery is like? Are you sure you want to do this?”) And that has been true here. For example, I’m finally walking without a crutch at least half the time and I’m 2.5 months post-op, whereas I was walking without a crutch within 3 weeks when I had my knee surgery last year. Everything is more difficult and exhausting right now, but I just need to power through. If this goes like my 2009 surgery went, it will take 6-9 months before I’m back to normal.

Have you tried changing your diet? Oh yes. Multiple times. First, I cut out hydrogenated oils (vegetable, canola, peanut, etc.) in 2010; over the years, I’ve found that I’m okay eating some of these in small doses every now and then. Then, I cut out gluten and dairy in 2011. I found that I didn’t experience a decrease in pain when I didn’t eat them, but when I did, it shot up horrible. Which I found out the hard way because I figured I’d be fine eating them since I didn’t notice a difference in my pain when I cut them out. Finally, I cut out corn, soy, and egg in 2015. For me, corn is like hydrogenated oils in that if I eat a food that has a small amount of corn in it – aka, not straight corn – every now and then, I’m fine. But I had a similar experience with soy and egg as I did with gluten and dairy in that I didn’t notice a difference when I cut them out, but eating them made my pain so much worse.

Chronically ill, chronic illness, chronic pain, rheumatoid arthritis, arthritis, ra, rheum, fibro, fibromyalgia, endo, endometriosis, pots, postural orthostatic tachycardia syndrome, asthma, chronic anemia

Just read your blog post about staying in motion and how walking can help and hurt. Do you ever try swimming? Or is it the actual movement that hurts you, rather than impact (like from walking)? It’s the movement more than anything else, which is partially because I have so many joints affected that it can help some but hurt others. Additionally, moving really helps my fibromyalgia but can hurt some of my joints. Plus, swimming can help, but actually getting to a pool is extremely difficult for me. Physically, it’s hard to get to a pool that I can use. I can’t use regular pools because I’m on 4 different immunosuppressant medications and so I can’t use a public pool because of germs and my extremely high risk of infection.

I’m really sorry if this sounds insensitive or rude, I really am, but I was just wondering exactly what medical conditions/diseases you suffer from? I always see bits and pieces, like I know your knee/knees bother you a lot, but I’m just curious about everything! If this is too sensitive, you don’t have to bother answering:) thanks in advance for reading this though!! Not a problem! The full list is rheumatoid arthritis, fibromyalgia, endometriosis, POTS, chronic anemia, asthma, and tarsal coalition. The knee issues are from RA damage, and actually a lot of these issues come from the RA – I developed fibromyalgia, endometriosis, POTS, and chronic anemia because of having rheumatoid arthritis.

How did you figure out that your pain was something that wasn’t normal? That wasn’t what other people experienced? I have two stories/answers for this. I first realized that my pain wasn’t what other people experienced when I was 10. This is when I started having ankle pain, and so many people didn’t believe that I could be in regular (and later constant) pain. I knew it was true, but lots of other people didn’t, so that’s when I realized that other people didn’t live with this. Fast forward 9 years. I had had 4 ankle surgeries in the meantime, and I was about a year after having my left ankle fused. I was still in constant pain, and I was realizing that I had in pain in other parts of my body. I had a history of carpal tunnel and tendonitis in my wrist and was still experiencing that pain and I realized my friends didn’t often experience things like that.

How do you manage life challenges or balance when it comes to living with a chronic illness? Like how do you prevent from overextending yourself on a daily basis. Or do you have warning signs to back off and then back off? Or do you tend to go past your limit more?? If you tend to back off when warning signs arise, what activity do you do to relax and recharge? So I had the “benefit” of becoming an adult with chronic illness and pain. Basically, I learned how to be an adult and deal with everything life threw at me while also dealing with health issues. I didn’t have to readjust how to do all of these things like those who became chronically ill while they were an adult (which is why I call it a benefit, but it’s also clearly not obviously).

I do have warning signs that I listen to, and that helps, but I also do math of sorts. I have an idea of how much something will take out of me, so I adjust how much I do in a day based on that. Let’s take this week as an example. I have 5 appointments this Monday-Wednesday, and I start my new job on Thursday. So I’m going to take it easy today, and the only activity I’ll do will be the appointments because right now, just walking a few blocks takes a lot out of me. I went past my limit more when I was in college, and I don’t often do it now. And when it does happen, it’s a conscious thing; I know that doing x will take a lot out of me, but I do it anyway.

Like many millennials, my relaxing and recharging is mostly bingewatching shows! I’ve been watching CSI recently, and I’m up to season 12. I also read, and am currently reading A Great and Terrible King: Edward I and the Forging of Britain (affiliate link). Talking to people often makes it harder for me to recharge – introvert things – so hanging out with family or friends doesn’t help me recharge, unfortunately.

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Helping Someone with RA, My Rheumatoid Arthritis Treatment + How I Got There, A Guide to Chronic Illness for Those Who Don’t Have One, Examples of Ableist Language in Everyday Life

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  • Reply Susanne Loss

    Great information!!!

    February 13, 2020 at 7:31 am
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