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After living a somewhat healthy life, I was beyond confused when I started getting repeated, debilitating infections in my ears, nose, and throat during my freshman year of college. I felt like these waves of illness were crashing over me again and again, and it felt like I could hardly see the other side.
This is how many CVID symptoms surface for patients, and it can be very shocking and confusing. While plasma treatments help to lend antibodies to fight illness, it is inevitable that different illnesses may arise. Grappling with the severity of these symptoms can be very difficult.
According to MedlinePlus, most people are diagnosed with CVID in their twenties or thirties. I was diagnosed at age 19, which means I was actually on the early end of the spectrum. However, some people are diagnosed as children.
I have heard that some people are extremely sick for years before they discover that they have CVID, so I do feel lucky that it was found in about six months.
I am so thankful to have treatment and access to corresponding medications, but I know that CVID symptoms can always strike. And it’s never fun.
How do I balance my chronic illness with the rest of my life?
CVID is an invisible illness, and unfortunately, you have to be your own cheerleader and vouge for yourself, especially in work and social settings. I’m still learning this day by day. I make myself feel so guilty when I’m fatigued or coming down with an illness. I always get scared that people will judge me or that I’m making it up.
But I have to remind myself of one thing: I know that this is real, and I don’t have to prove it to other people.
CVID symptoms can often be hard to explain, especially since they vary so much from patient to patient. I have dealt with repeated sinus infections, lung disease, and extreme fatigue. I know that many of my fellow CVID people may have the same symptoms, or experience many others.
I had to start seeing the symptoms as a part of a whole. I take my disease very seriously, but it is not my entire life! I have so many amazing and vibrant parts of my life that are not taken away by my illness. I have to hold onto moments where I completely forget that I deal with these symptoms.
I have started learning how to get ahead of my symptoms.
At the beginning of my CVID journey, I didn’t know how to deal with the symptoms when they came on. There are so many different medicines and supplements out there, I didn’t know what would work!
Over time, I sensed a pattern in the most common illnesses I would get. For instance, I always got sinus infections. I asked my doctor what I should use, and I started keeping Arm & Hammer Saline Nasal Spray on deck. I love this stuff! It really helps me clear out congestion. I also take Advil Sinus Congestion and Pain. Once I learned that these worked for my sinus infection symptoms, I could start taking them immediately. I eventually would go to a doctor, of course, if it was persistent.
If you have recently been diagnosed with a chronic illness, it can take time to learn what symptoms you will commonly be dealing with (and how to remedy them). It is a learning curve, and my doctors have helped me a lot.
It’s still a journey, and I am eager to keep learning how to alleviate my symptoms in order to have good, productive days.
One symptom I can’t get ahead of.
There is one symptom that I have SUCH a hard time with – fatigue. It’s horrible. I make myself feel so bad and guilty all the time, especially since I work a full-time job. During the day, I start to get really tired, and my focus starts to lack. I want to be present, focused, and hard-working, so I become very upset with the situation sometimes.
I am still in search of a good remedy for this. If you have one, let me know! I have heard a few that I might try, and I’m still looking around for some supplements.
I know that symptoms like these can be unavoidable, but I am determined to give myself the best quality of life possible, even with these circumstances.
You have to find your “normal.”
When I was first diagnosed, I was so obsessed with maintaining this “normal college life” I had before. I wanted to appear just like everyone else. Young people aren’t meant to be this sick, they are supposed to be living the best days of their lives!
But, the reality is that “normal” is just a front. Everyone has different ideas and expectations for their lives, and it’s all relative. We all have different ideas of success, different dreams, and different sources of happiness. We don’t need to follow any certain plan or keep up with others.
I know that a lot of pressure comes from myself. I like to put myself down and tell myself I’m doing things wrong. But, there’s no right way to do things, especially in uncharted territory like this.
So, if you’re feeling this way, I want to tell you that you have to find what is normal for you. You may not be able to keep up with some of your friends or have the energy to wake up early and have an action-filled day. Give yourself some grace and know what realistic standards you can set for yourself.