Lately more then a few people have told me I should let people know I am sick. I mean, almost everyone knows I'm sick, but probably not exactly how sick I am. Part of the reason for that is I really don't want people to know. I feel selfish every time I talk about my illness, even though its part of my every day life. Maybe a small part of me thinks that, if I can avoid telling people, then its not real. The more people who know, the more real it becomes. Frankly, I have been refusing to admit all this is real. I am slightly stubborn. Granted, it has been ten years since I started getting sick, but I mean honestly who willingly admits to themselves that nothing in their life will be the same because of a stupid little bug bite? Not most people, that's for sure.
I was asked to sit down with certain people, and talk with them about my daily life, the sickness.
That scares the hell out of me.
I am going to talk about it here, where I cannot actually see peoples faces, and if they give me the "Ugh, dramatic brat." look.
Please PLEASE if you do not want to actually know, or if you think I make things up, or if you think I am exaggerating, PLEASE stop reading now.
If you read this, and its not enough information or you wish to know more, I will talk with you. Yes, it scares me, but it has been brought to my attention (possibly by my boyfriend) that not telling people is a bad plan. Apparently my theory of "People wondering why I never leave the house and judging me is better than not being asked to go anywhere" has a few flaws. Ugh. Logic.
I was bit my a tick. Though I am not sure when, by symptoms I can assume I got bit once around 8, and again around 14. I think the bite at fifteen gave me Bartonella.
I have Lyme Disease (Borrelia), Bartonella, Ehrlichia, and Babesia.
Things started to get bad when I was 8. I had to sit out of karate class a lot of times because my wrists and ankles hurt too bad to join in. Ever since, it has been getting worse. I am not going to tell my whole life story of dealing with doctors and things, not in this post anyway.
I don't leave the house often. Most of the time, I will say "I am sorry, I can't go" to anything asked. And most of those times, I really do want to go.
However, I literally cannot leave my room most days. I spent 8 days unable to leave my room because my anxiety was so high, that anyone even looking at me made me start shaking.
If you were to read a symptom list of any of these diseases, assume I have most of the symptoms. Because I do.
Because at least two of my diseases are in my brain, I have a lot of really odd symptoms.
I have a headache almost every day. Honestly, when I wake up without one it freaks me out. Its so strange.
On that evil hospital pain scale, it is rarely below a 4 and is usually a 5 or 6.
When night comes, I don't sleep well. Reason being my brain decides to think it hears sounds that aren't there. Humming, clicking, dogs barking. My eyes decide to see things that aren't there. Shadows (never actual things) peering at me, and creeping me out. My skin decides to feel things that aren't there. Burning, ice cubes, things biting. Occasionally I will be woken up by what feels like an arm brushing my skin, and seeing a shadow moving away (or worse leering at me).
Because of this, I don't get much sleep and combined with my fatigue, I take a lot of naps.
At 7am, 9am, 2pm, 4pm, 5pm, and 9 pm I have to take a handful of pills. At 11am and 10pm I have to do Iv meds. (Not counting my 3x a week B12 and my nausea meds whenever I need them.)
When I leave the house, half the time I have to take a one of my tranquilizer pills to stop an anxiety or panic attack. The other half, I am so tired after an hour or two that I sleep for five hours when I get home.
My legs randomly go numb, which makes it difficult to walk and also I cant feel things. Which might explain why I have so many bruises that I don't remember happening.
My lymphatic system is angry with me, so certain spots on my body, if even brushed gently, swear they are being punched.
I have several spots on my body that like to pretend there is a knife sticking into it. Unfortunately, its rather realistic.
Probably one of the most annoying things is my inability to think correctly. I have one or two days a week when this is not a problem, but the rest of the days I slur my speech, can't read, can't remember what I said five minutes ago (Today is one of them so this blog post is taking me several hours, and I keep forgetting I'm even typing) and saying stupid things.
There are a LOT more symptoms but I am bored with myself, so I am not going to get into them. These are the worse ones, the ones that effect me almost every day. All of these symptoms are bad enough on their own, but they are almost always together.
I am on medicine yes, but it makes me worse a lot of the time.
Yes, if caught early all this can be cured with a few months of antibiotics.
But right now, these diseases are trying to kill me. And I'm barely keeping them at bay.
So please, don't be surprised anymore when I answer your question "How are you?" week after week with "I'm okay." or "Not so good." Because I havent been well in many years. I don't remember what healthy is. I am in this for the long haul.
Mountah Ash's Musings
The musings of a chronically ill girl named after a tree.
(Comments are virtual hugs. Please leave me some.)
(Comments are virtual hugs. Please leave me some.)
Friday, December 5, 2014
Monday, September 1, 2014
Its hard sometimes. To wake up some mornings and know life will never be the same. I get really upset about it sometimes. I spend the day depressed, but then I remember. Not only will i never be the same girl i was, i dont want to be. That girl had potential, but she was whiney and selfish. Who I am now, is a totally different person. And that is okay.
I have almost always wanted to be in the medical field somehow. And this is preparing me for that. But dispite that, I still get waves. Waves of uncertainty. Sometimes, I wake up with them. Sometimes it happens when I am prepping my IV bag. I think to myself I am barely 18. I shouldnt have to know how to do this. I shouldnt have to be responsible for the tube going directly into my heart. If I make one mistake, it could cost me. Cost me my health, or possibly my life if I make a big mistake. And sometimes I dont get over that for a long while. But I remember this is my life, and there is nothing I can do about it. And there are two things I remember. I would never wish this on someone else, and I would never wish this had never happened.
Some people would and maybe will read that, and think wow, she just wants the attention. Maybe thats true sometimes. Maybe I do want the attention. But mostly I want attention, not for myself, but for my diseases and my illnesses. To bring to light exactly what Lyme, Bartonella, Babesia and Erlichia can do, alone and combined. The horrors they inflict on your body. How drasticly they change you.
They say your diseases arent not you and that they dont make up who you are. But I think they do. They become a part of you. Some days I dont know if how I am reacting to something is me, or if it is my disease. They change you, and they make you a different person. Sometiems for the better. Sometimes not so much.
I hated who I was. I was not a good person. I made horrid mistakes at a young age, and I was barely sorry. I was losing who I was, I was losing my good relationship with some of my family and I was losing my relationship with God.
The sicker I got, the more I realized how wrong I was. People who dont know I am sick and havent seen me in years say something seems different. Something is different. I am a whole different person.
To be totally honest, sometimes I am afraid to be healthy. Iam afraid that if I get well, I will go back to being that person. That person who I hate. That person who I can rarely talk about. I want to be healthy. But I dont want to be her.
Sometimes it is possible to be scared but also at peace.
I will never be the same. And that is okay.
I have almost always wanted to be in the medical field somehow. And this is preparing me for that. But dispite that, I still get waves. Waves of uncertainty. Sometimes, I wake up with them. Sometimes it happens when I am prepping my IV bag. I think to myself I am barely 18. I shouldnt have to know how to do this. I shouldnt have to be responsible for the tube going directly into my heart. If I make one mistake, it could cost me. Cost me my health, or possibly my life if I make a big mistake. And sometimes I dont get over that for a long while. But I remember this is my life, and there is nothing I can do about it. And there are two things I remember. I would never wish this on someone else, and I would never wish this had never happened.
Some people would and maybe will read that, and think wow, she just wants the attention. Maybe thats true sometimes. Maybe I do want the attention. But mostly I want attention, not for myself, but for my diseases and my illnesses. To bring to light exactly what Lyme, Bartonella, Babesia and Erlichia can do, alone and combined. The horrors they inflict on your body. How drasticly they change you.
They say your diseases arent not you and that they dont make up who you are. But I think they do. They become a part of you. Some days I dont know if how I am reacting to something is me, or if it is my disease. They change you, and they make you a different person. Sometiems for the better. Sometimes not so much.
I hated who I was. I was not a good person. I made horrid mistakes at a young age, and I was barely sorry. I was losing who I was, I was losing my good relationship with some of my family and I was losing my relationship with God.
The sicker I got, the more I realized how wrong I was. People who dont know I am sick and havent seen me in years say something seems different. Something is different. I am a whole different person.
To be totally honest, sometimes I am afraid to be healthy. Iam afraid that if I get well, I will go back to being that person. That person who I hate. That person who I can rarely talk about. I want to be healthy. But I dont want to be her.
Sometimes it is possible to be scared but also at peace.
I will never be the same. And that is okay.
Wednesday, June 11, 2014
Just the clay
I sometimes get angry for being so broken. Angry at God, angry at myself. But you know Isiah 64:8 says "yet you, LORD, are our Father. We are the clay, you are the potter; we are all the work of your hand."
That made me start thinking about when I used to do pottery. I had to work then hell out of that clay to get it how I wanted it.
So here is my prayer in spite of the pain
Lord, take me in your hands. Break me, so that you can mold me into the woman you need me to be. Amen.
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