Chronic Illness Chronicles

*this blog post focuses mainly on mental health and CPTSD a physical health update will come soon*

I haven’t written a blog post in a while. I’ve wanted to, but last year was a year full of healing and challenges. Something that is important to me is using my voice, sharing my story, and spreading the word about these illnesses to help others. I’d be lying if I said I wasn’t disappointed in myself for most of last year, but as the year came to an end, I finally forgave myself and told myself it was what I needed. Like they say on an airplane, put your own oxygen mask on first. You can’t help others if you aren’t in a good place yourself. So 2024 is the year I put my mask on first.

The first area I put myself first was career-based:

2024 was the first full year I didn’t work since I was 14 years old. My providers were fully against me working and urged me each appointment to stop working and apply for disability, at least for now until I am further along in my healing process. This has been a very difficult adjustment for me. The first few months were the worst but that had a lot to do with my gallbladder surgery that went horribly. I was bedridden for 2 months due to an extreme error the hospital made that could have cost me my life. Once I was able to get back on my feet the shame set in. 

I grew up with an extended family, on both sides, who really value hard work and success. Up until last year this was a great motivator for me. I wanted to make my family proud and be like my grandparents, aunts, uncles, or cousins that I have watched work hard to make their dreams come true. I felt like I was on that path until my health got worse. Last year that great motivation really took me down. Everyday I felt so much shame, so much guilt, so poorly about myself and for myself. I really struggled becoming so reliant on my partner and my parents to help me pay my bills and I felt like I lost even more independence than I already have. I felt like such a burden and that I have already put them through so much with my health I didn’t want to continue to add stress to their lives(even though the 3 of them constantly told me I am not a burden I am not a disappointment and that they will always do whatever they can for me and that this is what unconditional love is). Still I struggled with this the majority of the year. Additionally, I felt so isolated and lonely. I took this time, initially not by choice, to rest, heal , and listen to my body. I knew eventually that I needed this time if I wanted to have a future. I knew I couldn’t push my body beyond its limits anymore. I tried daily to remind myself that I am doing what is best for me. 

After a few months I finally started believing myself when I said I was doing what was best for me. I knew deep down all along, but if you knew me pre sick you know how independent and driven I am and I so badly wanted to be in a place Im just not at yet. I was trying to rush myself to getting better and that’s just not realistic. In April, I applied for disability benefits but it’s such a long process Im hoping to hear from them soon. Luckily I was paid by my former employer through the summer. 

In October I finally had a real purpose again, I started watching my nephew. I was terrified to start watching him if i’m being honest. I knew I was still not in the most stable place and I didnt want to have to stop something else or disappoint my brother and sister in law. I really pushed myself to take care of my body and listen to what it needs before I started watching him daily. Luckily he is the best baby ever so he’s usually easy on me! Although I still have my physical limitations, watching my nephew has greatly helped my mental health which is allowing me to further work on my physical healing. 

The second area I put myself first was with my mental health:

I would straight up be lying if I said this year wasn’t the hardest year mentally. For several reasons, such as malnutrition and trying to survive, I wasn’t able to process everything that happened to me in the last few years. So once my brain had power to think again everything caught up to me. Jan-April I was in full blown CPTSD episodes. Dissociated for weeks at time. No sense of time or reality. Not answering texts for weeks simply because I didn’t even realize they were there. I was so deep in the trauma it was consuming me. In April, I knew I needed to do something. I was in a baaad place. I found a psychiatrist that works specifically with people who have similar conditions as I do including Ehlers Danlos Syndrome. Seeing this psych greatly helped me. She provided me with new medication and several tools to help myself at home. From April- June I worked really hard to get closer to the surface and further from the black hole I was in. Unfortunately, I needed to be tested for another vascular compression called Nutcracker Syndrome. Once I heard this my CPTSD immediately took back over. I tried not to let it, I really did but it won for a bit. I kept telling myself that no matter what the results are I will be okay, I did this once I can do it again. Even though the thought of another major open abdominal surgery and kidney autotransplant were TERRIFYING. But as long as I could, I kept telling myself I know how to handle it. I know how to handle the pain, the tests, the doctors. I can do this. So I had my scans and tests and then the waiting began. If you’ve ever had to wait for big medical results you know how hard this can be no matter what you do or tell yourself it’s really hard not to worry! 

  By the grace of God I do not have Nutcracker Syndrome. I finally got my results at the end of August. By this time I was still in a rough place but I was starting to understand everything better and get a little more of my rational brain back or at least be able to label some thoughts as irrational. I wasn’t having week-long episodes, maybe just a few days at this point. That being said I was still having a lot of the same thoughts and when something triggering happened I still don’t have that much control over how I respond. I’m still struggling to stop the spiral when it starts but I have gotten slightly better at staying grounded and present. I am starting to understand better why I don’t have much control and something interesting about all of the trauma healing (I have a psychology degree I find it interesting lol), is that everything I couldnt have an emotional reaction to when I was in the thick of it, I have huge emotional reactions to now when similar situations arise or similar things are said. 

After a year of digging myself out of this hole I have learned a lot about my mental health. I know I still have a ways to go but I am starting to feel a bit better and more rational. I am being a lot more patient and compassionate towards myself. I continue to remind myself that I endured abuse and neglect from doctors and nurses for over 10 years. I delt with debilitating, life threatening symptoms for years. I underwent countless invasive testing, some of which were enough alone to traumatize me! I can not expect myself to be completely healed only a year and a half post op. I deserve to have grace and gentle healing. I deserve to have goals, hopes, and dreams. As we enter 2025 I intend to continue my healing journey with the knowledge that there will be hard moments and hard days, weeks, or months. But all of my hard work IS paying off and will continue to pay off. I intend to live anyway and if I’m scared, to do it scared.