A patient’s experience.
How often do you as a Lyme patient get asked this question? It is an innocent question from people who are curious, some even genuinely wanting to know because they care. But how do you answer? Lyme is so complex. It changes day by day, even minute by minute.
I will share my “typical” day as a Lyme patient below. Feel free to share yours in the comment section below.
Please remember that each day and each moment can be different. With chronic Lyme, symptoms change constantly, their locations, their duration, their strength. It all changes constantly.
Oh the dreaded mornings. I don’t want to open my eyes. The first conscious thought I usually have is, “Oh, this again. Go away pain and weird trembling feelings, just go away and let me feel normal.” So upon waking, usually the first feeling is back pain or neck pain. I usually have a vibration, sort of like an electrical current feeling running through me. I have to just lay there for quite a while to get “normal.” And what I mean by “get normal” is to feel like I can stand up without fainting, collapsing or screaming out in pain. Sometimes I wonder if I’m having seizures when I sleep because all my muscles hurt and I have that weird tremor running through me each morning. If I stand too quickly I have great head pressure.
It always takes awhile for my eyes to wake up. I can usually not focus at first. Sometimes I have one eyelid that won’t open. Almost like it’s temporarily paralyzed upon waking. This lasts a couple minutes.
After I do get up, I feel like I can’t sit or lay down. I have to pace back and forth trying to “lubricate” my joints and muscles. That is the term I use for the feeling of getting enough blood and oxygen to my muscles, nerves and joints. Kinda like oiling the tin man.
Throughout the day:
When at Home
I feel like I have been poisoned or I’m hungover. That is the only way I can think to explain it. It’s like I don’t feel “right” but can’t exactly put my finger on it. It is a combination of weakness, numbness, tremors, shaking, nausea, brain fog and severe fatigue. I am not talking about being “sleepy.” I am talking the kind of fatigue where you feel like you might slip into a coma. You feel like you are in a dream. You feel like you are walking through cement. Did someone slip Benadryl or Nyquil into my IV? You don’t even feel like you are in your own body sometimes. Half in the physical world and half in the spiritual, like your spirit is trying to escape your body. Yeah, I know, I sound crazy. But it doesn’t change how it feels. That is what Lyme feels like to me.
When I go Out
Most of my time is spent alone and at home in my room, in bed. This is where I can handle symptoms the most. It’s easier to be alone and have quietness. Any stimulation bugs me, voices, smells, noises, lights so being at home in a controlled setting is best for me as isolating as it is.
Sometimes I am antsy and feeling ADHD. I feel like I have to get out, or like I have to get groceries or see nature. Sometimes on rare occasions I WANT to leave the house. Well this is what happens.
Sometimes it will feel great, especially when on an outing in nature. Usually it does not. Usually I can be normal one moment walking through walmart, then BAM. Kazow, Kaboom! My legs go out, they get so weak like rubber bands. Feels like my heart is racing or skipping beats. I get a shock to my head or neck. I feel faint. I feel like my body is too weak to push the cart or even walk or continuing to stand another moment. I can smell everything, chemicals everywhere. I can’t see. The lights above are so bright. They hurt my head. People are everywhere, trying to talk to me. They don’t see that I can’t understand that I am not understanding anything that they are saying to me. I feel like I am about to throw up. Please don’t throw up. Please don’t faint. I have to get out. Stop talking to me. I like you but I’m about to pass out if I stand here any longer, I have to keep moving or get out, which should I do? So much stimulation. Am I now autistic? If not, is this what the autistic people I used to work with when I worked in groups homes felt?
It is the same way at family reunions, friends gatherings, backyard cookouts, birthday parties or meeting at restaurants. It doesn’t matter where I go, it will be likely to happen. Panic attack or neurological overload? I don’t know. I just know the feeling of it sucks. So stop inviting me places. (Just kidding) But seriously, if I have to decline an invitation, this is why, it can be overwhelming as well as embarrassing not to mention totally uncomfortable. This is why one day you might see me out gardening but the next day I can’t come to your house for your one year old’s birthday party. I have “comfort” spots.
Comfort spots.. yep, those are the places where you know you can have your weird illness in peace. You can lay down immediately if you need to, like if your back goes out, or you get lightheaded, you can faint, you can throw up, you can just sit on Facebook all day if you want without judgement. These are the places you can control light, sound, what foods you eat, and you can wear yoga pants all day. Yeah! You don’t have to put on a fake smile and ‘act’ like you are ok, when you are not. You are allowed to be sick and you are allowed to take the comfort measures you need to get through it. These comfort places for me are at home, with my kids anywhere, cuz I know they will help me through it, at local parks. Nature helps me ‘get out of myself.”
It is so hard to be out and about with people and try to act like you are not in pain, or feeling totally sick. Or trying to not throw up.
I usually start feeling better as the sun goes down. I don’t know what this is. But as soon as evening comes my symptoms lighten. Not go away totally but I feel more functional. I can work on crafts, talk to my friends on the computer, visit my kids or play with my grandaughter, sit in the back yard on the swing, walk the dog. The vibrations calm down as long as I haven’t been too active in the day. Head pressure is less. Maybe it’s knowing I have gotten through another day. I can sit back put on Netflix and just relax with no expectations of me left to fulfill.
The only thing that is usually worse, the one symptoms that worsens as the day goes is back pain. Really back, neck, shoulder or any joint stuff I’m experiencing might get worse.
Sleep what’s that? This is one of the those symptoms that can change with me. Usually I just can’t. Or if I do fall asleep, I will wake up two hours later, my brain tricking my body into thinking I have slept for the night, and just lay there for hours til the sun comes up and I hear the birds singing. As much as I love birds, I hate that noise. So many nights I lay here listening to the birds.
I wake up a lot with hallucinations. I see spiders usually, but also black balls, sometimes balls of bugs, or other strange things. It looks real but I know it’s not. They are called Hypnagogic Hallucinations. You can learn more about these here if you are interested.
I have gone through the bouts of sleeping endless hours too. I know a lot of Lymies and me at one time, could not sleep enough. I would sleep for 12 hours straight, get up and eat, go back to sleep for another four hours and wake up feeling tired and exhausted. These stages or sleeplessness and oversleeping switch back and forth. Again the roller coaster of symptoms.
There have also been stages where I was up all night, only able to sleep from 5am to noon. That lasted three years. Basically sleep just never comes easy. Even when it seems all you do is sleep, it’s not a restful peaceful fulfilling sleep. You still wake up exhausted.
Symptoms I have Experienced
bladder pain * burning nerves * stabbing sensations * heart rhythm irregularities* chest pain like someone kicked in my sternum * confusion * apathy * anxiety * difficulty making myself think* can’t concentrate * troubles speaking * can’t think of word * pain * getting lost going somewhere familiar * leg pain * arm pain * head pressure * insomnia * fatigue * can’t drink alcohol (extremely bad hangovers and hives) ” random hives on legs * vision is messed up * numbness in legs and arms * weakness everywhere * paralyzed feeling * head pressure * neck, back and shoulder pain * pelvic pain * rectal pain * tremor * visible shaking * seizure like activity * TIA (mini stroke) * menstrual problems leading to hysterectomy * twitching * need to lay down suddenly * fainting * low blood pressure * vertigo * facial flushing * hallucinations * rage-like anger * paranoia * dark thinking * panic attacks * agoraphobia * trouble swallowing * unexplained bruising * sound sensitivity * heat intolerance * cold intolerance * dizziness *
These are the symptoms I thought of just off the top of my head.
Written by Lisa Hilton
Here is what people on Facebook said about how
Lyme Disease makes them feel.
My story in detail is here. Please post a link to your story or post your story or your symptoms in the comment section below. Tell the world what Lyme disease feels like to YOU.