You Just Don’t Get It

14 Jun

Got Meds?

You Just Don’t Get It

Lyme really changes our lives and we cannot help that we are no longer the same fun person we once were. I feel as if I am in a real life invasion of the body snatchers. I look in the mirror sometimes and I wonder who it is I am looking at. It is not depression as many people think but it is the feeling of being really ill and there seems to be nothing that can cure me. I don’t like feeling this way but that is my life right now.

I hear from so many people how their friends and family just don’t get why they can’t meet for coffee or go out for fun. Lyme and coinfections are really unpredictable little critters and we never know what day we will be feeling our worst. It makes it really hard to try and plan something with a friend when you have no idea if on that day you might be in the bathroom all day, puking all day, too ill to get out of bed…etc. Some of us are bedridden and never leave our rooms.

We are prisoners in our homes. There are some people with Lyme who are able to work, go to the gym, go out and have fun…. but that doesn’t mean all of us are that way. Each person, body and what diseases we have are all different. Just because Bob has Lyme that he has only had for one year and he can still work that doesn’t mean that I can work. I have had Lyme, Bartonella, Babesia and much more for 30 years and at one time I was able to work too but now look at me.

It is very difficult to explain to our friends and family why we cannot go to a movie on Saturday. We are sensitive to sound, light, smells and just being around a large crowd. It might sound made up or crazy but it is true. Going to that movie will make us feel even sicker and it might take 3 days of bed rest to recoup from that small venture out of the house. Knowing that one small task will make us feel so much worse for days is not worth the risk of going out for an hour or two.

I once took a trip with my parents to a nearby city for a 3 day vacation. I got very car sick and jet lagged on the ride. I remember seeing the beautiful view from our house we rented. Then I slept all three days and barely woke up just for dinner and back to bed. I didn’t even get to enjoy anything. There was a hot tub I wanted to use but I never got to use it. After that trip I really do not feel like going anywhere if it means I will feel so ill I have to sleep for days.

People like to compare their self to what we feel like. Let me just say it is not the same. I hate when I tell someone how I feel and they seem to think they know exactly what I feel like or that their situation is worse. I tell them I was up at night crying with so much pain that it was a 10-11 on the pain scale. Then that person will say “I know what that feels like I had pain today after I tried to lift a chair but it was much worse than yours”. No that is not the same pain.

I used to be pretty tolerant to pain when I was younger. I have broken plenty of bones and I even fell off of a bridge at work one time and got back up and started working again. I have cut my head open, got a concussion and continued to work with blood dripping all over. I have drilled screws through my fingers during a rush job at work. I am not clumsy it was just a very  faced paced job and very physical.

I have had my lower back give out on me and I was in a lot of pain and had to drag my self on the ground since I could not stand up. There are so many times I have had some form of pain but nothing compares to the pain that Lyme, Fibromyalgia and coinfections bring to your whole body. The pain is intense and on every part of your body where you have never had pain before. If I were to describe the pain and symptoms I would be here for weeks.

For some reason people like telling us how they “feel like crap” when they have a cold or flu as if they think they are on our level and going through what we are going through. Again not even close. They are looking for sympathy yet in years not one of them has ever shown sympathy for your Lyme. A cold and the flu are absolutely nothing compared to Lyme. Those are just one of 100’s of symptoms.

Lyme Is Overwhelming

Lyme and coinfections can be so overwhelming, confusing, and make you feel lost. It is so hard to tell someone in words just how you feel. There is so much going on in our bodies, our brains, and in our lives it makes you feel as if things cannot get any worse everyday.

We struggle with many things daily that people do not see. We battle with insurance, we try to get medicine covered so we don’t have to pay huge medical bills. Many of us have no income or spouses and we cannot afford to see a doctor. Many do not have medical insurance, do not have a place to live, have no money for medicine….etc.

Most people only know what they read on the internet from a web site that has no clue what Lyme is either. Some may have heard of the word Lyme disease at one time in their life and all of the sudden they are an expert on how we should feel and how to cure us. You hear things such as “oh you have lymes disease, well that’s good at least you know after a few pills of antibiotics you will be cured in a week or two”. Seriously? I want to slap those people.

Even when you tell someone that you have been on antibiotics for years they still seem to think you should have been cured in two weeks because the article they read says so. Well the person that wrote that article has never had Lyme disease and they are uneducated. They most likely are our enemy and tied to the IDSA.

Going Through The Motions

If I tried to explain what my Lyme and coinfections feel like I guess I could say it is a horrible, painful nightmare that just won’t end. For some the pain and depression become so mush that they take their own lives. Montell Williams has MS and he can relate to what we go through. He even tried to kill his self to end the pain and the nightmare. By the way I am not a quitter at anything and I think suicide is very selfish but yes the pain makes life not worth living at times.

This is how my days go and many others can probably relate and are even worse off then me:

I wake up at some odd hour in the afternoon and the first thing I wake up to is pain, dizziness, headache, cotton mouth, soaked bed from sweat, and I try to get out of bed. There is no sense of urgency or excitement since I know exactly how each day will be. I grab a water and try to rehydrate after sweating all night.

Next I take any pills I need to take on an empty stomach such as my thyroid pill and herbal tinctures. I walk very slow and tipping from side to side with a limp to my chair in the living room. I am still on a daze and I tend to stare in a trance a lot at nothing. I turn on the TV and find it really hard to focus on what they are saying.

About this time I start to get new pains (my usual pains) come over my body and I feel the need to rest my head. My dad will talk to me but most of the time I find it hard to follow what he is saying and it is hard to keep up. I then will eat dinner. I have no cravings anymore for food and I just eat because I know I have to.

After dinner I take my lump sum of pills that are to be taken with food and water. These include my much needed pain pills which seem to make me feel just a tad bit better and I am so thankful they still help me. I will watch TV for the next few hours and chat with my parents but I don’t really talk much.

Once the pain killers kick in and my pills give me a tiny boost of energy I will play games on facebook or answer friends messages. I also take this small window to update blog posts. Usually while sitting at the computer my neck is stiff, arms hurt and hands hurt from typing and I feel I just want to lay down. To a healthy person being on the computer is fun and easy but to a sick person it is a struggle.

After my hour of “fun” I will go to my room and lay back in bed. I will watch my recorded shows and maybe play a game or two on my iPhone. Hours later I hobble into the shower and then lay back in bed. I take my night time pills. I will watch TV until the sun comes up and usually fall asleep around 6am-10am on average.

During my rest I can either have CFS or Insomnia. I never know when each one will strike. Most nights it is insomnia and I get maybe 30 minutes to an hour of sleep. On a good night my CFS will make me so tired I feel paralyzed and I sleep for 6-8 hours never hearing anything. This is not usual for me since I was always light sleeper when I was healthier and I could hear a cricket fart at 100 yards away.But when the CFS is bad my eyes are always heavy and I find it hard to stay awake even if the house was burning down.

The next day I repeat the same process. Pretty exciting stuff huh? I am just going through the motions and waiting for something to progress. I know one day I will have somewhat of my life back but until then I am patiently waiting.

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2 Responses to “You Just Don’t Get It”

  1. Kelly June 14, 2012 at 4:28 am #

    Excellent post. I’ve been dealing with chronic Lyme for 370 days now, although I’ve most likely had Lyme disease for 5 years or so. While I’m mostly functional it takes all I have some days to get through. Other’s dismissiveness and attitude of “You don’t look sick” or comparison of symptoms is hurtful. Prior to having Lyme I had had headaches and occasional strained muscles and been tired, but now I have had headaches that have kept me down for 2 weeks at a time and muscle and joint pain that has prevented me from driving and fatigue so bad I can’t even see straight. Chronic Lyme disease takes everything to new level. What is tolerable today would not have been tolerable 10 years ago.
    Wishing you well!

    • 49erBry June 14, 2012 at 5:15 am #

      Thank you. Honestly I am not sure what I wrote I have been a zombie all night. I’m sure what I wrote was not what I wanted to say. I’m sorry you have to suffer from this horrible disease. I hope better days are ahead.

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