“When you hate getting your period because it is so painful, it isn’t crazy to wake up to stabbing pain and also a bad headache. This is how my morning started on October 5, 2016. I’ve always had this voice in my head telling me, ‘You can’t bother people or make them feel disappointed,’ so I pushed through and went to work.
At the time, I was working at a senior home near Philadelphia. I was an activities assistant, and I always thought it was crazy I was getting paid for playing games, dancing, and doing art pieces with the residents. That day, we were going on a cruise for lunch in the Delaware River. When we got there, I tripped, fell, and hit my head on the ground. Nothing serious to me. I got up immediately (I didn’t want to bother anyone) and continued working with one of the worst headaches of my life. Once we got back, my boss sent me to Urgent Care because there was some blood in my head. I got checked and had a cognitive test, and they sent me home to come back 48 hours later.
Before my concussion, I was working on a Halloween painting with the residents. Every day, I would feel guilty because we hadn’t finished. I know, that was so important at the time. I didn’t want to disappoint anyone. I went back for a few hours. That day, I was awarded a bonus for being the employee of the month, and I was in so much pain I don’t think I smiled in the picture. We finished the painting, my husband came to help clean, and afterward, I never went back again.
The months to come were painful, physically and mentally. For more than a year, I had a headache that never went away, I got dizzy upon standing, I couldn’t move my head, I couldn’t tolerate light or noises, and I started having panic attacks. My work insurance got me an appointment with a concussion specialist. I was in very bad shape. I was in so much pain I wanted to die…
Once the doctor saw me, I was diagnosed with a severe concussion, chronic migraines, depression, anxiety, panic attacks, insomnia, light sensitivity, noise sensitivity, and suicidal thoughts. I was sent to get physical therapy, ocular therapy, occupational therapy, outpatient therapy, and had an MRI scan – with nothing to be found. All of a sudden, I went from being a happy, cheery lady to having to go to doctor’s appointments every day and feeling like a burden to those around me.
I only live with my husband and pets. He would take care of me: cooking dinner, cleaning, and being patient with my 24/7 crying sessions. This was very hard on our marriage. We went to marriage counseling. I always felt guilty. When you look healthy, it is hard not to think, ‘Maybe the situation is not so bad and I am just too weak.’
I would tell my husband, ‘I’m never getting better.’ He would always say, ‘No, you’re going to be fine.’
‘You don’t have to deal with all this, it’s my fault, I can just go back to be with my parents,’ I said once, feeling guilty he had to deal with me in so much pain, physically and mentally.
‘Don’t worry about anything else, just focus on getting better,’ my husband said.
I was born in Colombia, and only one of my sisters was close. She would come to help me cook, clean, and she even covered all the windows with cardboard so I could be around the house without any light coming in. I didn’t want to talk to anyone. This was because of the depression and also the fact I couldn’t stare at my phone or talk or hear people talking. My family in Colombia started to get worried, so they flew in to stay with me for a couple of weeks. They said, ‘Everyone is praying for you.’
Depression has a big stigma in many places – Colombia isn’t an exception. Even though I went to school for psychology, for me and my family it is hard to talk about it. I started taking antidepressants (I am still taking them) and I was also prescribed meds for sleeping, nerve pain, nausea, and headaches. I used to carry a 1-liter Ziploc bag with all the pills for the day, which had my whole family upset.
After a few months without improvement, my parents insisted I fly to Colombia and get another doctor. My psychiatrist thought the trip could help, so I got approved to travel. At the time, I felt so weak and nauseous I had to request a wheelchair to take me through the airport. I was also so scared my psychiatrist gave me all the instructions with necessary pills so I could calmly get on the plane. I took a cane with me and went there, more for my family than for me. I didn’t want to move or go anywhere, but I didn’t want to disappoint them, so I did it.
When I got to my doctor’s office, he looked at my list of medications and was surprised I was prescribed so many things. However, I feel I was in such bad shape, they gave me all the help they could think of. When the doctor was doing the vitals, he noticed my heart was beating extremely fast, so he had me do three tests: a tilt table test, a heart monitor for 24 or 48 hours, and another one I cannot remember. I don’t know if my memory is worse now, but there are many things I don’t remember and feel like my head would explode if I try to.
The results came back. I was diagnosed with chronic fatigue Dysautonomia, and Postural Orthostatic Tachycardia Syndrome (POTS), which basically means every time I stand up, my blood rushes down so my heart starts working harder to get blood everywhere. My blood pressure drops and I feel like passing out.
At the moment, my main concerns were migraines, chronic fatigue, and POTS. The good news was I had a diagnosis – with numbers, with proof, with information – to make me feel like I am not crazy and this is actually happening. I am not weaker than other people. The bad news is there is no cure for either… I still struggle with all of those things on a daily basis.
When I have a headache or a migraine, people ask me, ‘Have you tried this?’ The answer is I probably have. Let me tell you what I have done – pain killers (not a fan because they make me feel extra weak), massages, acupuncture, chiropractor, vitamins, IVs, magnesium, essential oils, weird soups and juices my mom made for me in Colombia (when I say weird I mean nasty…don’t tell my mom), Botox (30 injections in the head and neck), heating pads, cooling pads, head massager, back massager, meditation, prayer, no TV or phone, teas, drinking water, not drinking coffee, drinking more coffee, sitting in a dark room for days at a time, going for walks, and changing my diet. What has been the result? After 4 years, I can finally say I have a record of 12 straight days without a migraine or headache. That’s a lot of progress, especially when you never thought you could go a day without pain.
My parents said once, after seeing how many pills I was prescribed, ‘You are too young to be taking so many pills. That might make you worse.’ With chronic fatigue and POTS, there isn’t a cure, but I drink water with electrolytes every day. I don’t drink much coffee and when I do, it is decaf. I don’t drink energy drinks, and I started putting salt in things I cook (I’ve always eaten a very plain diet). I have a watch that tells me how my heart is behaving so I can look at it and not feel like I am just a lazy person who can’t move.
A year after my concussion, my husband got a new job in Farmington, NM. We thought it could be good for me to be in a beautiful place, close to the mountains, and start again. Since we moved our family grew, we got another dog and a cat for a total of four pets. He is very patient with me and helps me every day after long days of work. He comes home and cooks dinner and if I can’t, he cleans the house and does laundry. He is very understanding when, out of nowhere, I have zero energy to do the things we look forward to or I am in so much pain, I can’t even get up for a glass of water. Having his total support makes me feel proud of him… not many people would be capable of doing what he does and keep loving someone that feels broken.
The biggest nonphysical struggle I have to date is GUILT. I feel guilty for what happened to me that day. ‘It was a stupid fall,’ I used to tell my doctor, but it basically changed my life. I feel like if you had a car accident or this big event that happened you are justified but when you just fall, didn’t even go unconscious, there is no reason for me to be dealing with this. I feel like I am weaker than others. Weirdly enough, I also feel guilty when I feel well. On those days I am without pain and I have energy, I feel guilty, like why do I have those days when I can’t do anything? Was I just being lazy? I can do stuff today, why? Unfortunately, the guilt is always there.
I’ve also learned many things. I learned that not wanting help from others is not about you being a good person who doesn’t want to bother others. It is about you not being humble to admit sometimes you need help. I’ve learned I have to listen to my body, it tells me what it needs. Unfortunately, when dealing with an invisible illness, you second guess everything you feel, but it comes to a point that even if you want to ignore your body, you can’t. You can push it to the limit, and it would cost you. You might want to do it all, but your body doesn’t agree, and instead of hating it, you learn to be more patient and listen to it.
In the present time, I am not working. I am at home with my three dogs, my cat and my husband. I take care of the house and sometimes even this is difficult; I feel like my body and mind can’t deal with much. I recently decided to start painting more often and try to get better at it. I started my own Instagram where I share about my painting progress, photography, and the struggles of everyday life with a chronic condition. I wasn’t going to mention much about my pain and POTS on social media, but when you want to paint every day and you can’t because you are in pain, or you say you love the outdoors but you haven’t gone anywhere in a month because you’ve felt so weak, I think you have to address it.
I have found many inspiring people online, even I fall in the stigma of, ‘But she looks so healthy, pretty, active…’ I am not perfect. I deal with it and still have the wrong ideas in my head. I am writing this and thinking: ‘My problems aren’t bad, my diagnosis is not crazy, I shouldn’t be sharing about me, it is so unimportant, I look fine.’ However, I struggle with this all the time. I don’t know how I am going to feel that day, like maybe it is just me. I think it is important to show people how we feel. Seeing people struggle helps me understand I am not alone, I am not crazy, and I can do this. This is not who I am, it’s just part of me.”
This story was submitted to Love What Matters by Veronica Wolfinger from Farmington, NM. You can follow her journey on Instagram. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more stories like this here:
‘I came home from camp with the worst sore throat of my life. The horse I’d ridden mysteriously died the night I got sick.’: Woman details chronic illness journey, finds ‘silver lining’ service dog
‘When you see me in a handicapped parking spot, you roll your eyes. My husband explains, ‘She doesn’t get better from this. She ultimately dies from it.’: Woman with multiple chronic illnesses urges ‘not all disabilities are visible’
‘After a yoga session, my spine slipped forward. I couldn’t move. I couldn’t roll over. I was a vegetable.’: Woman with Spondylolisthesis, chronic illness claims ‘pain is inevitable,’ but ‘suffering is optional’
SHARE this story on Facebook or Twitter if you know someone who may benefit from this story.