A photo is so full of falseness. You cannot see my heart racing at 115 while resting. You cannot feel the pangs of shooting pain on the top of my foot. Or the burning feelings my hand has right now. My migraine has been on and off, but you can’t see. I can sit and smile at a camera up until I don’t notice it pointing my way.

I am not that person who posts for you to feel sorry for me. I post so that others understand, I know what it feels like to not look sick. And I know what it’s like to grin and bear it in front of loved ones. I know what it’s like to try to desperately appear normal when you are just battling the nausea that you’ve had for the past hour.

I know what it’s like to be tossing and turning, wondering when will you sleep.

I know what it’s like to be curled up in a ball on the floor, praying God takes away my suffering.

I know what it’s like to cling to faith, and have my faith tested, and to be angry sometimes because I can’t understand the big picture of such a long journey of suffering.

I know what it’s like going to doctors, and having your labs looked at, and words like “I wish I had labs as good as you.” And told I’m healthy and sent away because they are too busy with people with the clear textbook issues to deal with me.

I know what it’s like to be told to just meditate, listen to music and do yoga.

I know what it’s like to be treated like a psych patient.

And yet I don’t know exactly what it is like for you personally. And that’s why I share my story. So that others aren’t afraid to share theirs. I’ve only begun my journey and I’m sure it’s gonna be a long one. But I do know what it’s like to have such an amazing support group, and not only have my own friends rose above and beyond for me, but so has the spoonie community.

No matter how difficult the road is. Find that one thing that doesn’t dull your shine, and cling to it. Cause you’ll need it when you’re curled up at 5am wishing you weren’t alive. You’ll be wishing so much when it’s your 30th doctor visit for the year. You’ll be thinking irrational thoughts as you stare at however many pills you take to stay semi functional. You’ll sit there, and you’ll think…What’s the point? Why do we keep fighting only to be not taken seriously? Why fight only for tomorrow to be the same or worse?

And that’s when you’ll need whatever it is that you need to keep on moving forward.

Trust me, I know the feelings of hopelessness, I know the days where it feels like it will never change.

Never give up fighting. You are beautiful souls struggling to live with an ugly disease. It will try and strip you of everything. And some days, it may win some battles. Just don’t let it win the war.

I was diagnosed in February 2017 with Late Stage Chronic Lyme Disease. I do not recall a tick bite and I did not have a rash. Originally there were other speculations of why I had a kidney infection however now we believe Lyme was shutting my kidneys down back in September, especially since it wasn’t responding to any antibiotics. We believe I was infected around 16 years old and that it took the kidney infection to put the Lyme in overdrive with my actual body, however I suffered since 16 with random pains, burning on the top of my feet, moments where it felt something was crawling on my arms, and random leg spasms mixed with anxiety and psychological issues. I tried to commit suicide for the first time on April 10, 2016 , twice within a week of each other. I didn’t understand why, and I chalked it up to life issues and “things getting unbearable” but I never believed it. I had been through far worse. In January 2017 I had a psychotic episode where I just became extremely erratic and uncontrollable. I was diagnosed in February. I have since been ruled no longer depressed and no longer have the anxiety I once had since treatment. My psychological symptoms of Lyme have been the first to ease up. They’re not gone, I get overly emotional and overwhelmed still. But they aren’t like before. But the ones that left me unpredictable and unable to function are now since gone. I still have pain, aches and many other symptoms still and I know I have a long way to go, but I have come so far.

February 22, 2017 I never realized I favored sleeping on my right side until I was told I could no longer sleep on it.

I never realized I would never be able to enjoy exercising again, until I was told I can’t and may never again be allowed to.

I never realized how embarrassing it is to forget words, to slur or forget completely what I was saying until it became a daily struggle.

I never thought much on going out, being social, being able to have infinite energy, until my energy and strength was taken from me.

I never realized how hard walking can be until I could barely walk without a cane and without constant breaks because I’m so winded and gasping for breath.

I never realized diet would play such a massive part of my life when I’m only 26, and I never missed the feeling of food until I became limited to about….perhaps 10-25 foods? Not sure the count, it’s low as fuck

I never imagined it taking nearly 5 months for someone to actually look at me and not say, “oh you’re stressed.” Hippocratic oath my fucking ass.

I never imagined being 26 and having difficulty sexually because my body aches or doesn’t respond the way I wanted.

I never imagined I would be 26 and administering medications through an PICC line for at least 6 months.

I never imagined having this amount of medications to take.

I never even knew much about chronic illness before all this began. I never knew on a good day, my pain level is a 5 or 6. And unless I’m on actual prescription pain meds (the big old knock you out kind) that I would ALWAYS have pain.

I never imagined hearing that I have to two co infections that could kill me. My entire body felt like it was dying and no one was listening. It was all, oh I see you take antidepressants. I see you take anxiety meds. Must be stress. You’ll be fine. BUT I WAS DYING.

I never imagined fighting for my life at 26. I never , once in my life, thought I would contract something that has no cure.

There is no cure. They use the word “remission.” Yes. Like cancer. They say with aggressive treatment they “hope to achieve quality of life once again.” Chronic Lyme disease patients are polled to have the poorest quality of life and highest numbers in suicide compared to all other chronic diseases. The little research they DO have, is limited on Lyme Disease. And I am one. I am someone who suffers from it. NIH wants to study me and I’m going to submit my info. Because this disease kills, debilitates, and ruins your quality of life. All you do is learn to manage the symptoms.

I want a cure, and I plan to do whatever it takes to be a part of making that happens. I am still fighting to rid my body of the infection. The journey has only begun.

February 8, 2017 I know I’ve spoken here and there on what’s going on but here is a list of what EXACTLY chronic lyme has done to me so far :

The biggest ones: brain lesions. The fibromyalgia. The sciatica pain. Now the more specifics….Fluctuating blood pressure and heart rate, palpitations, hot flashes, thrush, weakened immune system, joint pain, pain and burning in hands, numbness on my entire left side to the point I now am using a cane to help because it’s like a damn block now. Back pain, stiff neck, blurred vision, “brain fog”, gastrointestinal problems. I’m either constipated or I’m having diarrhea, lovely photograph right there I know. I have daily migraines and vertigo and photophobia (light sensitivity) and also tinnitus (ringing in the ears). I’ve also had an odd fluctuation in lab works, the awesome thing about the hospital I go to, the MyChart actually has a graph where you can select certain things (example blood pressure, or specific lab results) and see if there is an increase or decrease and when and how much, it’s awesome. I cannot lift my son, if I didn’t have Aaron here with me, I would probably be sleeping all day, I can’t even imagine working nor would I be able to. If I’m lucky I get an hour of somewhat relief a day. I have trouble sleeping and when I do sleep I toss and turn, but I can never sleep in till 6, and then I’m terribly exhausted all day. I have irregularities in my cycle, and I have severe groin pain.

I’m pretty sure there’s a ton more I could list, but I’m blanking now. It is not fun. It is downright miserable, I absolutely hate it. I am praying hard that this treatment will get me back to feeling like a human again. I just want to not feel all this pain. I want to be able to walk 4 blocks without my leg hurting like crazy, without breathing hard, without becoming dizzy. I want to drive normally again. I want to work, I want to work out, I want to go back to hiking (well….i dunno about that, now I’m scared to go to anywhere ticks are!) I wanna go out and not feel 90 years old. I REALLY hope this treatment can make my quality of life actually be quality of life again….