I’m Not Used to It

There are some out there in the land of healthy who believe that because we’ve been in chronic pain and chronically ill (or perhaps one or the other), for X- amount of time, that we should be used to the constant torment. I’m here to tell you that this is a false-hood. We don’t become used to our situation simply because we have been in the same situation for years- we adapt. Adapting here means that we do things to make our lives easier; we adjust how we sleep in order to attempt a restful night, we shorten our work-days in order to ease the stress of long days on bodies that are already stressed from illness or pain; we change our diets to attempt to quiet the wrath of symptoms for digestive disorders; we take supplements in attempt to strengthen our weakened immune systems; we do so many things in a futile attempt to lessen the wrath of pain and illness, but we never, ever get used to it.

I envy this kind of sleep.

In some ways I can understand the logic behind that particular thinking. When we do things over and over again, for example exercise, we become accustom to how it feels. Eventually, we aren’t as sore as we were the first time, we hit the gym or when we attempted yoga for the first time. Our muscles become accustomed to the rigors of lifting weights or doing planks or squats. But chronic illness and chronic pain are just not the same. It doesn’t matter how many times I get a migraine, it’s always like the first time. It doesn’t matter how often my Crohn’s flares up; it always feels like an assault on my intestines. I am in chronic pain all the time from the fibro and back issues I have, not to mention the pain from the rheumatoid arthritis and while some days might be a little easier, it’s never something I get used to. It’s frustrating and painful and it simply takes so much out of you to just try and function every day. I am always finding myself lamenting the body I used to have (and no, I don’t mean figure-wise), and wishing that I could do the things and be the person I was.

Yoga is great, but does come with consequences, no matter how much I do.

I want people who don’t suffer from chronic illness and chronic pain to know that we never become used to this state of being. That every day is a challenge to simply function on a semi-normal basis. That you don’t have pain and symptoms from your chronic illness for 15 years and just become used to it over time. Our bodies are not static and every day presents new challenges and sometimes, new symptoms and frustrations. Pain medicine is something that doesn’t always work or only takes the edge off the pain leaving you at a seven rather than at a nine. It’s having side effects from the medication that is supposed to be helping you, or having to determine if it’s worth trying certain medications because of the side effects associated with that drug. It’s missing out on going out with friends (if we have any at all, because most people become tired with waiting around for us to feel better), it’s missing on going to events because we suddenly flare up, it’s the anxiety that we have because of our illness and pain (which exacerbates anxiety that we may have already), and it’s the surgeries that we may have in order to try and help our situation that sometimes ends up making us worse. No, we do not ever get used to it.

Oh the reality…

In finality, I offer this: if you are a family member or friend to someone suffering from chronic illness or chronic pain, try to understand them better; try to understand what it is they are going through better; be a better friend or sister, brother, mom or dad. Our lives are complicated and messy and we didn’t ask for this.

Sadly, so very true!

Thank you for reading, sharing and following my blog. It really means the world to me.

Being Your Own Health Advocate

It’s Not as Easy-Peasy as it Seems

As long as I’ve been sick, and as long as I’ve been blogging, I’ve either been reading about or hearing about being your own health advocate. While being a self-advocate is something that seems easy, and is something that we have been doing since we begin seeing the doctor on our own, it’s not always easy. I’ve wondered why that is and how we can improve on that, to become better self-advocates, because there may come a time when ourselves is all we got.

 

Difficulty Being Assertive with Your Doctor?

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You’re not alone. Many people find that being assertive with their doctor can be a difficult undertaking. We can find ourselves at our most vulnerable when we are with our doctor, both physically and emotionally, but hoping that with all their education and experience, that they have the answer we are so desperate to have. However, when their diagnosis or treatment plan goes against what we may have in mind, we have a great deal of difficulty telling out doctor this. Why?

 

Many of us feel that if we question a doctor, we are somehow questioning their expertise and authority. We don’t see ourselves as equals when sitting with our doctor, even though we are both adults and equal as human beings. This seems to make us feel, in a sense, like a child and a “questioning of expertise may lead to retribution in the form of a lower quality treatment from their doctor somewhere down the road.” We’ve all heard doctors as possessing God complexes. There’s a reason for that and challenging their authority is one of them. But there are ways you can have a relationship with your doctor as an effective communicator- self-advocate. [1] Wagner, 2019

 

 

Non-Negotiable with Doctor

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Trust: Once you have a doctor, establish trust. Without this, you can’t proceed. Good doctors listen, don’t make you feel rushed and have patience. But doctors can have a bad day and staff can be off, so remember to have patience too.

 

Respect: Everyone starts with respect in my book. You don’t have to earn anything with me. But once you lose it, it’s gone. If a doctor disregards a legitimate complaint; if they tell you it’s nothing and to just lose weight-game over. Find a second opinion and start again.

 

Serious surgery/treatment: Any experimental/trials, surgeries, cancer treatments or whatever, get a 2nd or 3rd opinion if necessary. Do your research and see what trials they did for it; see what other patients said about it, and how they are feeling now. It’s very important to do your homework. If you don’t like what is said, find another doctor.

 

 

Tips for a Good Self-Advocate:

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Communicate: It’s not just about talking. It’s about being effective. Any advocate out there will stress the importance of clarity with your doctor, and communicating your concerns and desires over the progress of your treatment while maintaining a professional relationship is essential. It’s important to be able to discuss treatment with a doctor without feeling like you’re going to hurt an ego.

 

Assertive: “Being pushy without being annoying.” You won’t find that definition on the dictionary, but I like it. In order to be an advocate for yourself, you need to learn how to do this for yourself, because there are going to be many instances you find yourself needing to use it. Whether it’s calling up the insurance company and finding out why a bill hasn’t been paid yet- and as my grandma once told me, you catch more flies with honey than vinegar, it pays to be persistent but not a bitch on the phone. They’re only doing their job and they don’t know any more than you know them.

 

Passionate: Oh, energy and enthusiasm! Chronic illness and chronic pain is a long struggle. You have to bring your pom-poms with you for you, to fight this. Ain’t no one gonna fight harder than you. Remember this when you feel like crap when you’re tired and you hurt and remember when you just don’t want to do it. You gotta look out for number one.

 

Knowledgeable: Research the Issue. It’s easy to Google something but it’s better to research. Google doesn’t mean it’s true, but if you research it and you find five or ten articles that say it’s true, you have a far better chance of the information being true. I’m a big proponent of research and being armed with research when going to the doctor can only strengthen your case when you bring your ideas for certain treatment before them. You may not have a degree but you have the right to consider what treatments you want to try.

 

 

 

[1] Wagner, 2019