I sat down this morning to write a post about travel– about feeling at home, while traveling. Something I’m so grateful to be able to do again. I opened my twitter first, something I rarely do (I usually use it in the evening for reading and reposting articles on health and food justice), but at the very top was a tweet from TEDtalks to a video entitled, “What Happens When You Have A Disease Doctors Cant Diagnose?” It pulled me in. I knew I would have to watch it. I knew it would affect me. I guess the thing is I didn’t expect to sit here crying during and after it.I got up, made 60 ounces of a banana + greens smoothie. A banana smoothie— questioning still, with every banana that I peel, who am I? Who have I become? As someone who, just year before, couldn’t sit in the same room with someone eating a banana– this is huge. Peel after peel, I place 3, 4, 5, sometimes more bananas in the blender for me to whiz up and drink, for my health. And I know I’ve changed.
I dont often think about how truly sick I got two years ago. It’s honestly hard to believe it was two years ago. It so often feels like a distant memory, thats better left forgotten. I’d rather focus on the good around me, and not the hardness of it all. So much time spent in bed, paralyzed with pain and symptoms that felt (and sounded) so alien. I was so sick. More sick than I would ever like to admit to myself or anyone else. I’m a tough guy, don’t you know? At least I play one in my life. But painful and stranger sounding symptom, after stranger sounding symptom, I was sick, really physically sick. And after time, emotionally I began breaking too. I wanted to believe so badly that I would get to this point— a place where I would feel human again.
There were days that I would stand and the room would spin so hard around me that I had no choice but to fall back over again onto the bed— where I knew I wouldn’t make it out of the room and into the kitchen like I had hoped. But now? Now I rise, easily, walk right into the kitchen, to greet my kid or make my breakfast and I can sit outside without a struggle, without a second thought. I’m almost better. There are still lingering symptoms the I’m not sure I’ll ever fully overcome. Some come and go, like the burning in my gums— but then there are things like my hearing. Like, the ringing in my ears has never silenced. And sometimes, when I’m overtired or in the late hours of the night, it gets so loud that I can hardly hear anything else at all. But I do have my hearing and I am grateful, because I know with many intense viruses, this can go too. And I try to meditate through the lingering loudness.
And there were points where I felt crazy. Doctors visit and test after test. Thousands and thousands of dollars of my savings lost to the reality that no doctor could properly diagnose what I was experiencing. The best, and easiest explanation for some people (doctors or not), the it must be in my head. That must be it, right? Perfect blood work, but crippling symptoms? It must be that I’m crazy. That I like to feel miserable. That I want to be in bed– and escape from the responsibilities of living my (amazing) life and caring for my (even more amazing) kid. And I would leave crying, hopeless again.
For every push forward, I would fall back. But my family would remind me that every fall back I had, was shortened. Six months of fevers and being bedridden would turn into one month of being bedridden with fevers that would come and go, and then two weeks, and then eventually only a few days of falling back at a time. And I eventually got to the point where I would have more up time out of bed and eventually out of the house then down time eventually. The downtime still hurt, physically and emotionally, but I had to agree, I was slowly getting better.
Since changing my diet even more, (read all food and health related posts here) I’ve seen the biggest shift. My immune system is growing again. Going against the recommendation of every doctor: and eating a diet filled with fruit, living food, and lower in fat and protein, I’m thriving. My immune system is back and as I watch others catch cold after winter cold, I’m grateful that my body is once again strong enough to fight the germs off. It’s not perfect, sure. And a cold will come to me at some point again I’m sure, but my body truly is fighting and by many standards, thriving. My months to weeks or being down, has turned into a 24 hour period.
Being the perfectionist I am, I do look forward to the day when it’s (my immune system) and I am even stronger. The day when I can say, “I’ve sent all my symptoms away”— but for now, I don’t take the stage of health I’m in for granted. I am truly grateful. I know I am lucky– that I could have had it much worse. As my nutritionist has said: that that my diet and lifestyle had played (and will play) a huge roll in it. That had I not had the (high probiotic pretty healthy) diet I had, that the c. diff part of my illness would have most likely killed me. That if I wasn’t so adamant and hard working with my diet and health after the fevers, the crippling and bending body pains, the brain fog that was so heavy that I could hardly even read and understand a paragraph in front of me, and the hundred other symptoms that I experienced while laying bedridden– that I would not be in the state I am in today. I know luck and strains of illness plays a part, but I know I’ve put the work in too. There are many parts that play a role. I did not give up and fight for my health when the doctors gave me no hope– or often left me less hope than I went in with. I did not give up studying and learning about health, food, and diet— and even to this day, I’m reading and learning as much as I possibly can. I want take in as much knowledge as I can about these things– for myself– and hopefully to help others who are struggling too. I cannot tell you how good it feels to receive follow up emails from you guys who have emailed me for help and advice– telling me you are on a healing path now. That you are on your way to doing better, thanks to the advice I’ve given in this space or personally responded to you. Gosh, I’m grateful for this space.
So back to where today started. I woke up today, deciding I was going to fight for my health some more. That I would have to be more determined and hard working on the parts I’ve been slacking in. But I was (gratefully) distracted with this tedTalk and this story.
Invisible symptoms are painfully hard. They can range from mild to completely life disrupting and worse. I cried this morning as I felt the pain of others and I remembered my own pain. Hell, I’m starting to cry now again.
I don’t ever want to live those two painful years again, but I am grateful I lived them. Often, I’m better off pretending that the hard parts never existed at all. But there are days like today, where I am undoubtedly evoked and brought so intensely back to my own memories… and that is okay. That is actually good. Sometimes we need a reminder of past pains and struggles to be reminded of where we are now and how far we’ve come. I am where I am now. I know more now about myself than I ever did before. I know more about health than I did before. I am not the same person I was before the “invisible” problems struck, but thats okay. I’m stronger, more knowledgeable, and growing more and more everyday. Grateful for the air I breathe warm sunshine I feel.
Here is the tedTALKS I watched, I hope it says something to you, just as it did for me. Whether you are fighting and invisible illness, know someone who is, or just want to hear an amazing and powerful story about medicine and health, I’d recommend you check it out.
Also, while I’m here on the topic, I just want to say thank you to my friends and family (and readers!) who stuck by me. Who believed in me, who fought for me. I know you didn’t have to. And I appreciate you so much because you did. Thank you.
I hope you guys are having an amazing week. I’m going to attempt to run today. Something that friends and family are instantly laughing at the idea of. But I’m going to. My body has come so far, who says it can’t go further?
Thanks for being here friends. And thanks for letting me post all the happy stuff– but all the very real and hard stuff too. It was harder than I ever really let on, but you guys helped me get through it too.
ps. for anyone struggling with a mystery illness, invisible illness, or autoimmune disorder, I definitely recommend THIS book. Take the story with a grain of salt if you want, but take the diet seriously.