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Life with CVID, or any illness in general, can be very unexpected and full of ups and downs. I never know when I will have a day where I feel super fatigued or catch a cold that turns into something worse. I wake up every day hoping for the best, but I know that I can’t avoid the storms that come alongside having such a compromised immune system.
Right after I got back from a trip to Greece, I suddenly became very sick with all kinds of symptoms. I had a cough, congestion, sore throat, fever, chills, and body aches. I thought that I had possibly caught COVID, but the test was negative.
I knew that I had been exposed to a lot of germs since I traveled internationally, so I figured that I picked up some kind of virus on the way.
Unfortunately, this illness continued to linger. I went to the doctor and got some prescriptions for my symptoms, but I still haven’t figured out the root of it. Luckily, at this point most of the symptoms have subsided but I am still having some abdominal pain, which can be concerning.
It’s okay to have moments where you wish things were different
Sometimes I wish I could take a break from my body. I just want to have a moment where this disease isn’t a thing anymore. I want to forget about all the doctor’s appointments, the low white blood cell counts, the SCIg treatments, the fatigue, and the intense bouts of illness.
Unfortunately, that is not an option. From the second I was diagnosed with CVID, I knew that it wasn’t going away. At least not to my knowledge. I have written about the concept of forever in a previous article, and it has always been something that’s hard to grasp. I have had many moments where I’ve cried and asked for this to be over, knowing that it won’t be.
But, as I like to say, we can let these moments just be moments. When I am laying in bed feeling extremely sick and tired, it is okay for me to wish it would all go away. But I also know that I am extremely strong and that I will get through this. I won’t let this defeat me and steal all of my joy.
Let the moments come and pass, and don’t guilt yourself for these kinds of thoughts. We are all human, and this is a part of the human condition.
Give yourself the rest you need (physically and mentally)
Tiredness is not always just a physical feeling. Over the last couple of weeks, I have also felt mentally tired. My mind kept throwing around so many thoughts. After being unexpectedly laid off from my job, I knew that I had to put my foot on the gas and get out on the job hunt. But, I was extremely sick, so much so that it was hard to even use my brain and get on my laptop.
I started to get stressed that my illness was causing me to lose time on the job hunt, and so my stress just created more stress.
But, at one point I just had to surrender. I was sick and my body and mind needed rest. The job hunt will always be waiting for me, and I can continue once I am feeling better. Sitting around and stressing was not doing my body any favors while I was trying to fight off a virus.
Find solace in knowing you’re not alone
I love that I am in a Facebook group for other fellow CVID patients because they understand my life and it’s very comforting and validating. I read posts that are so relatable, and I know that I am not alone in this feeling.
Make sure to get plugged into a group if you are navigating chronic illness. It is so much worse to do it alone. You may think that no one understands, but someone out there will.
I think most people with chronic illness probably get sick and tired of being sick and tired. At least we can talk about it together and share words of positivity and advice.
If you have CVID, check out the group here.
Finding moments of gratitude
This morning, I finally felt like I had some energy. I got up early and went out to my deck, which overlooks the ocean in sunny San Diego. I watched the sailboats float in the bay, and I thought about how beautiful my life is. There are so many things to be grateful for, even the small things in life.
I never want to forget the things that make me happy. In many ways, I am so blessed. Gratitude has helped me when I am in my low points, and it’s great for your brain. Check out this article from PositivePsycology about the effects of gratitude.
Give Yourself Grace!
In these moments, don’t forget to give yourself grace. You are doing amazing, even if you don’t feel like it. Chronic illness is really tough, and you deserve to let yourself rest. Take care of yourself and find some core people to confide in!