Living with a chronic disease can be manageable if you educate yourself, know your limits, and take care of yourself properly
So, you or someone you love has been diagnosed with a chronic disease. Chances are you’ve been dealing with symptoms for years; however, they sometimes come on suddenly. Either way, the days following the diagnosis are likely to be different from your every day life now. There may be a new diet, medication, or physical restrictions to follow and adapt to.
Is it scary? Yes.
Is it insurmountable? No. Just remember, under pressure coal becomes diamonds.
You can do this!
It’s a hard road, but with a little knowledge and understanding the transition can be an easier one.
What Is A Chronic Disease
First, we’re going to look at what a chronic disease is.
The CDC broadly defines Chronic Disease as , “…conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both.” Chronic fatigue, brain fog, blood pressure variances, headaches- there are so many symptoms that go along with chronic illnesses. I can’t go into every symptom of every chronic disease, but I can give you some tips to ease your everyday life.
To start, let me tell you how I began my journey into the world of chronic illness.
16 years ago I began experiencing symptoms, and it took nearly 9 years to receive a diagnosis. I have Arnold Chiari Malformation Type I, which I will be writing about soon. I have cascading symptoms and while I don’t have a traditional job anymore, I do work from home, have children, a flourishing flock of chickens, and a support group that I couldn’t do without.
Years of doctor visits led to a variety of diagnosis, but I felt that there had to be one big problem that unified everything that was going on. I began keeping a symptom diary and I showed the doctor a list of 42 symptoms. After an MRI we found the Chiari and I read everything I could on it. I eventually found a specialist that listened to me and took me seriously and while I’ve learned that there is no cure, medications help a little, there are exercises that I can do and a diet that helps ease my symptoms.
That’s not to say I don’t have bad days. I have days, or weeks sometimes, where I’m not able to function at my new 100%, but I’m able to have more good days than not if I take steps to live my life they way I need to.
Educate Yourself On Your Illness.
The first thing you need to do is read.
Read everything about your illness you can find. Read articles on reputable websites. Think CDC, NIH, NORD. Find a physician that practices in the area of your illness. And remember, you have a right to find a doctor that clicks with you.
Find a support group. You can find them on Facebook, Instagram, blogs, and sometimes you can find physical groups in your area. You can learn a lot about what’s going on by listening to others. That being said, use common sense and understand that your illness is just that. Your illness. Your symptoms. Especially if you’re a Zebra.
One of my favorite bloggers is The Disabled Diva! I found her on Instagram and headed straight over to her blog. There are some really great words of advice on coping with your new life and traveling with a chronic illness, just to name a few. Find a few good blogs that click with you. It can help you feel less isolated or alone and you can learn some things that can help you on your journey.
Know Your Limits
The best piece of advice I can give you is to not try and live your old life. You’re not the old you, so don’t try to live like it. Embrace your new life!
Limitations on one thing doesn’t mean that you have limitations on everything.
I first began exhibiting symptoms while pregnant with my youngest daughter. I wasn’t able to exercise like I wanted, I had trouble reading, and headaches put a damper on my good mood. Audio-books let me enjoy a good story as I did other things, like writing and planning my days. Now I do this during a flare so when I have a good day that isn’t already spoken for with doctor appointments, I have articles written in my mind and a good idea of how I will accomplish tasks.
Know your limits. If you aren’t supposed to lift over ten pounds, don’t try to hulk out and bring all the groceries in at once. Is taking a showers difficult? Get a shower chair or use dry shampoos and body wipes. Chronic fatigue wearing you down? Make a nap a part of your routine, even if it’s a small one.
Find your limits. Know your strengths. Work with both until your good days feel like your old ones because you can breeze through. And your bad days? They won’t feel so bad anymore.
Self-Care is Important
With a job, a family, and chores that never end, (yes…I’m talking about laundry here) it is VITALLY important to not push beyond your limits. I know sometimes it happens, Food must be cooked. The house needs cleaned. The sink is full of dishes.
I get it. Some things have to be done, but keeping up with tasks on your good days won’t let them pile up during a flare.
Here are 5 things you can do to start taking better care of yourself:
- Get enough sleep.
- Drink enough water.
- Take your medication as directed
- Find a support group.
- Do something that you enjoy and recharges you.
Whatever it is, find it. Do it. It’s the little things make up the moments of our lives. The relaxation that comes from them go a long way to making you feel better all around.
The most important thing I want you to learn to day is that you can’t take care of others until you take care of yourself.
With a chronic illness or disease this becomes truer than ever. Don’t feel guilty for these little pleasures. The dishes will wait. The laundry will still be there. If you don’t take care of yourself, your illness will make sure you’re sitting on the sidelines way more than you ever expected.
What are ways you’ve learned to cope with limitations? I’d love to hear! Just drop a line in the comment section.
Until next time, remember.
Stay Strong. You are a Warrior.