I'm not gonna lie...the recovery is worse than the disease. The saying is true. Except for the fact where the disease will eventually take you. I now know why the girl who helped me get help, did not show the same relief as I felt with the diagnosis. She knew all too well, the endurance test that was ahead of me.
I'm not gonna lie...it's lonely. I know I have said this before. But you get sick of hearing yourself talk about it, so you can only imagine what it is like for others. Yet, you feel the need to explain to everyone why you are not yourself, why you let them down, why you think you can do something and then find out you can't, why you look okay, but are doing horrible inside.
I'm not going to lie...I wanted to keep a brave face, but the effort is wearing. I wanted to smile, remain motivated and positive that I could do this. It just goes on so long. One day, you are sure you are going to beat it and then next trying to picture your life hurting, feeling this sick and tired forever.
I'm not gonna lie...I waffle in my posts by trying to make people feel better and making sure I give an honest impression of how horribly frustrating this disease it. All I can say is no matter how much I write, explain and describe, there is no way to explain the turmoil and fear that goes on inside the head of a lyme sufferer.
I'm not gonna lie...I do things but the effort is sometimes ridiculous to even describe. Some days, I do things in 10 minute intervals, because my breathing is that of a 90 year old. I can sometimes take three naps in a day, trying to accomplish something in between. It can take me all day to get the mental and physical strength to make supper, and then feel shame that is all I did.
I'm not gonna lie...not every day is a bad day. Some days, I feel great (and realize that's only relative). Some days, it can turn around in hours and become a better day and some days, the bad days go on for days, for no reason and you just want to give up.
I'm not gonna lie....I had to lose all my physical progress with the Utah treatments to take the meds that will hopefully eventually help my heart and head. They wore me down, so I am more fatigued and physically weak than I have been in months. It is so hard to lose one major thing you gained, to resolve another...two steps forward, one step back.
I'm not gonna lie...I am like a kid who doesn't want to take her medicine some days. I am on so many supplements, that I take handfuls at a time. I want to gag. And many times I am taking things that I know will make me sick. That is hard to do day after day. I had to stop my one medicine because my blood test were showing problem areas. I was relieved because they made me so sick when I was on them every second week. But then I started to get worse and am now relieved to start back.
I'm not gonna lie...I drive myself absolutely insane every day trying to figure out if I am worse because the meds are fighting the bacteria or if it is Lyme getting worse. I wonder if I ate the wrong thing, should be taking or not taking something. If I should go back to old treatments, do more or less with supplements, doctors, try new options, stop old ones. I don't know whats working and whats not, if anything is at all.
I'm not going to lie..the chance of recovery I am told is zero. Yet, I was determined to disprove that. I am told remission is possible. So I am going with that. Somedays, I would even forgo remission, if I could just know what each day was like. But then I smarten up. The fights not over, it's just harder as you get weaker and you do get weaker, in mind and body.
I'm not gonna lie...people are suffering far worse than me. I belong to a doctor supervised medical online forum and the stories are horrific. It is also glaringly apparent that we are so far way as a country from getting even the slightest help for these people (diagnosed and undiagnosed) it is truly demotivating. The stories of the game that the CDC, testing, doctors and government are playing is disgustingly appalling. The chance of this resolving in decades is close to impossible.
I'm not gonna lie...I was appalled at how little the new GP covering for my doctor (who I still have yet to see since getting really sick) understood. To give her some accolades she did some research between my two appointments and came with a very different attitude to the second appointment. But in the first she was disgusted with the course of treatment I was doing and rolled her eyes. She said they treat Lyme with a short course of doxyclycline in Ontario, to which I explained she was talking about early Lyme, not Chronic Lyme. She laughed when she read the notes from the American Lyme Specialist who stated that "Lyme sufferers can experience very "weird" symptoms", to which I shortly said "that is a huge understatement. And thought to myself, lady, if you have even the slightest idea what this is like, you would not have the gall to laugh at that.
I'm not gonna lie...this is a horrible mess this country is leaving Lyme patients in. Many dish tens, upon tens of thousands for care and what little is covered often ends because they are not back at work and get rejected for LTD. This part of the story is true for the majority of people I talk to. There is a huge law firm in Toronto specializing in Lyme because the majority of Chronic Lyme patients are rejected from LTD. So after all those expenses many have to hire a lawyer. Talk about kicking you while you are down.
I'm not gonna lie...the biggest lie is what Lyme looks like on the outside. If you see a Lyme sufferer,all I can tell you is it is the farthest thing from what that person looks like to you. They are masters at muscling through an event or activity and struggling and suffering for it afterwards. There is so much more physically and mentally going on inside, than what it appears.
I'm not gonna lie...I could never properly describe to you what Lyme is or the symptoms. I get asked that all the time and they sounds like nothing. But at the time, I can't even say them all. It also may seem like there is no one major issue, they are all small issues. But together they ravage every part of your body and mind. Not one major thing is wrong, just everything is wrong.
I'm not gonna lie...when people ask me how I am doing, I say "okay". Mostly because that is what they want to hear, but also that is what I want it to be. And some days I really am okay. But no one wants to hear someone is not okay, even if that's the truth. I think the majority of the population says "okay" when they dont mean it. Its just what we do. I wonder what our world would be like if we could treat one another as if we weren't okay, no matter what we said.
I'm not gonna lie...some moments I just don't feel I have what it takes to do this forever. Then other moments I know I won't have to do this forever. I just don't know what that place will look like. Some days I feel the dreams I still have, slipping away. They are things that have motivated me to push hard through this process. I don't know what's smarter, letting them go or hanging on for dear life. Until I'm sure, I guess I will hang on.
I'm not gonna lie anymore...Lyme just really, really sucks!