Upon getting a diagnosis of a chronic illness, like CVID, or Common Variable Immune Deficiency, it’s easy to get overwhelmed. Bogged down by questions in your head–What do I do now? Is there treatment available? Will I have to live with this forever?–it’s ironically hard to focus on what’s next.
While treatment can help, oftentimes, your management isn’t that simple. Below are some tips , inspired by blogspot user, ~K on how to manage living with CVID. Check out her blog, Living with CVID: The Life of a Music Scholar for further insight and a good read.
1. Start a blog.
These days, the world’s population practically lives online, making it easy for people to connect, regardless of geography. By starting a blog, not only will it provide you an opportunity to chat with others on a similar journey and educate those unaware of your CVID, but it gives you a place to dump your emotions and experiences. Letting the fears and negative emotions fester hardly ends well.
2. Find a good nurse.
While you want to be able to connect with your nurse on a personal level (not too personal, I hope), you also want to find one who knows what he/she is doing. Ultimately, it’s your nurse’s perfomance that determines whether your treatment infusion time lasts five hours or only two.
You’re not always going to have the energy to do what your friends want to do on a Friday night–especially if it involves panty-raiding your grandmother’s house. It’s okay to say “no”–in fact, we encourage it. You may feel like you’re missing out, but you have to learn to say “no” to yourself, too.
It’s inevitable–you’re going to need your medical history, insurance information, and call logs when talking with ANYONE interested in your health. Purchase a file organizer or folders to keep track of it all. Trust us: It makes doctor visits or calls that much faster. You can thank us later…
If you’re reading this article at 2 a.m. with a cup of coffee clutched tighly in your hand, I’m talking directly to you. Yes, you. You need sleep! CVID negatively affects your health as it is; let’s not add lack of sleep to the mix. If you’re one of those people who likes to do all their work at night, stop that. According to the National Sleep Foundation (yes, it’s a real foundation), the average adult needs between seven and nine hours of sleep in order to be truly rested.
Duh, right? Well, a lot of people often forget this seemingly easy task. Take a nap. Go get a pedicure. Men, you can get pedicures, too. We’ve seen it happen. Take your dog for a walk. Buy yourself something nice. Sing your favorite song at the top of your lungs until the neighborhood cats join in. Wear a toga and parade around town, if you’re into that sort of thing. Cry, and be okay with it. Don’t get lost in your disease–find time to do what you want to do outside of it.
Last but not least, advocate for your health. You know your body more than anyone else does–more than the doctors, the nurses, and most importantly, the insurance companies–at least, we hope so. If you feel like you’re ever not getting the answers you need, ask questions. Get second opinions, and don’t accept “I don’t know” for an answer. You deserve better than that.
To those bold enough to provide additional tips on managing a life with CVID and thus insinuating PatientWorthy didn’t cover all the bases, please leave a comment below! We dare you.
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