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.