The irony of the title for this post is rather pointed, as it has been over half a year since the last time I posted. A lot has happened, both good and bad. In the interest of upholding the purpose of this blog –which is to educate those who want to understand what it is like to live with CVID, and share experiences with those who may have a similar diagnosis – I shall do my best to share the most relevant events and insights from the past 9 months. Unfortunately, there is no ordained way to organize said experiences so I shall do the best I can to present things under the large umbrella of time management.
One of the most important things I have learned over the past year is the value of a good nurse. Of course it's nice to get along with your nurse on a personal level, but its crucial that they are excellent at sticking you with an IV needle as quick and painlessly as possible because (in my opinion) that is the worst part of the treatment. I have found that nurses who have experience working in an ER are excellent at this. They can chat you up and have the needle in before you have even finished tensing up in preparation. Speaking as someone who has had a nurse in the past that was not proficient at putting in needles, you want the best! An experienced nurse, an electric pump, a wonderful helper (my sister and my nurse have a routine down) and enough experience with the medical supplies your pharmacy sends you, and you can reduce the time your treatment takes from 5 hours to between 2-2.5 hours.
Having spent the past year adjusting to graduate school and my diagnosis at the same time, I can definitely say that time management is an issue. I found it helpful to inform my professors of my health condition and what it entails, so that if I had to miss a class because I wasn't feeling well or I had a doctor's appointment I couldn't schedule any other time, they would understand. The same would apply to a boss or manager. You can be glossy on the details, but making sure the "higher ups" know the basics of your health problem can make your life easier should something come up.
Speaking of doctor's appointments, in the first year or so after being diagnosed with CVID a lot of time is spent in doctor's offices seeing various specialists and your primary care provider in the interest of tracking down loose ends in terms of potential health complications. Remember, having CVID or any other kind of primary immunodeficiency means that you could have a wide variety of seemingly unrelated health problems. For me, problems included eczema, eye infections, impaired lung function, swollen lymph nodes, and the potential risk of lymphoma and lung disease. Making the most of available time is important. I learned to bring reading to do on the way to the office and while sitting in the waiting room.
Learn to say no. Not just to other people but also to yourself. I made the mistake of taking more classes than necessary my first quarter of graduate school. Having a major health problem not only takes up time for appointments, treatments, and insurance matters, but it also takes up a lot of energy. Keeping commitments to a minimum is not always easy, but it is helpful.
Stay organized. Keeping track of all of your medical files, phone calls with doctor's offices, pharmacies, and insurance offices about everything relating to your health makes getting to the bottom of inevitable difficulties faster and easier. I do my best to keep a log of phone conversations so I know what I said to whom and when.
Sleep is your best friend. The words "Graduate student" generally summons up images of late nights, huge piles of books, gallons of coffee and a lack of sleep while researching and writing the (hopefully) brilliant paper. This does not work. I'm going to hazard a guess that this doesn't work in general, but for someone like me this does not work at all. I tried it once, only since I tend to think better in the morning I tried to wake up earlier and earlier to get work done. Instead I got less and less productive and more and more tired until I started to get sick and had to take a day off.
This brings me to the final point for this post. Every now and then you just need to drop everything and take care of yourself. Whether that means spending a day sleeping, drinking tea, and taking various mediations because you're starting to get sick, or spending an evening eating chocolate and watching sad movies because you're frustrated with your diagnosis or were just told you need a surgery to check for cancer. Do not feel guilty. Do not stress about what is not getting done and what you still have left to do. Time may be precious, and having a major health problem may feel like a part-time job, but for your mental and physical health, taking time off from everything once in a while may be the best thing you can do.
