It’s been 130 days since my AN diagnosis. Since then, I’ve been through loads of doctor appointments (I’ve lost count), a variety of tests, another diagnosis of an infection in my mastoid bones (behind my ears), which seems to be resistant (I’ve been on 4 different antibiotics so far), and a seizure. I’m now on anti-seizure meds, and a few things to try to control my headaches. This seems to be the new “normal” for me, and we just keep hoping for the best with each appointment.
I try not to miss any work. I’ve actually only missed 3 days out of 70 so far this year, and have taken an early leave here and there for doctor appointments. I also go in early almost every day……a habit I’ve had for a very long time. I know if I sit at home, I would get depressed…..something that is easy to do with any illness. I don’t want to add depression to the list of conditions and symptoms. Besides, I love my students, and appreciate that this is probably the best class I’ve ever taught! I guess I need them right now. They let me know how much they love me, and how much they care about me. They tell me constantly that they love me, they hug me, they make pictures for me, are pretty well behaved, and they understand that sometimes I can’t get up too fast! I told them about my recent EEG, and they enjoyed imagining their silly teacher with the 25 electrodes coming off of her head.
I don’t let a lot of people see me when I’m feeling bad. I have learned to manage that very well. The teacher who teaches next door to me, Tamesa, has become such a great friend. We vent, laugh, cry, and support each other every day! She is one of the few who sees me holding my hurting head, or can tell by the look on my face that I’m in pain, and knows what is going on, without me having to say anything. It’s nice to have a friend/co-worker like that, but she also understands my fierce independence, and knows when I just need to push through.
I have had people ask me how I do it. How do I keep going? The commute? Teaching 1st graders? The work load? One of my husband’s friends in New York said in his thick NY accent, “She’s a troopah!” Well, what choice do I have? Like I said before, I don’t want to sit home and get depressed, having no interaction with anyone. While I might need more rest now, I still believe that I can manage this more effectively by continuing to keep busy, and keep a normal schedule. And…..I don’t want to give up my way of life. I don’t want to get old before my time. Young at heart = hopefulness and positivity.
I have seen people with chronic illnesses give up, go on disability, stay home, and become old before their time. If you know anything about me, you know I have a sense of adventure and fun, and a curiosity to learn about people and places. I love travel. I love museums. I’m not old enough to give up that part of myself. I might stumble a bit here and there. I might not hear everything, especially in a noisy room. I might be hypersensitive to loud noises. I might have headaches. I might feel pressure in my ear and head. I might have vertigo that makes life feel extra wobbly. I might have to be more aware of the signs (auras) of an impending seizure. I might have to eventually have surgery. But my life will not stop being enjoyable because I have a chronic illness! I refuse to give in to this. I guess this is where my stubbornness pays off!
Over the last 130 days, I have learned so much. I’ve learned that I am much stronger and more determined than I ever realized. I’ve learned that I keep my balance better if I give myself more time and turn on lights! I’ve learned that my husband is a jewel (I actually already knew this, but he has just confirmed it, as he helps me up every morning so I don’t fall, reminds me to be careful, and is understanding and supportive with my fatigue and limitations). I’ve learned who really cares about me, and who is there to support me on this journey, wherever it leads me. Fortunately, there are a lot of people supporting me that I never knew cared so much! I’ve learned that naps are not only enjoyable, but they really do help! I’ve learned a lot about two illnesses that I have, that I never dreamed would affect me. I’ve learned to really appreciate small acts of kindness, quiet moments, fresh air, a good laugh, a walk, and all of the positive things in life. I want to be the best me I can be for my children, who I know have been worried and scared through this. I want them to enjoy their silly mama, who loves to laugh and embarrass them in public. I want to be the best me for my husband, who shows me his strength every day, but I know he worries and gets scared from all of this too.
So the last 130 days of knowing what is wrong with me has been an emotional and physical roller coaster, but I appreciate what it has given me. Things can always be worse! I can do this…..with a few adjustments and a lot of support from those who love me. I’m not ready to give up anything yet…..and I won’t.