I am in my room basically all day everyday. Either doing IV therapy or too sick to get up.
I had lots of friends prior to my health getting this bad, and once they all saw that I can't be this fun person to be around with they kind of all just stopped talking to me.
Even my sisters, I was always the older sister taking them out, and now that I can't take them out, I am this boring person that no one wants to be around.
I am thankful that my parents are a little understanding, more than they have in the past. But I just been feeling so alone.
I understand that everyone is busy with their lives, and I don't expect anything from anyone. But it hurts how all my friends just stopped talking to me because of this illness.
I am not living life, I am just watching it.
I was so excited I got into nursing school earlier this year, and now all my siblings are going back to school, and I am just sitting here feeling useless.
it gets so boring being in this room all alone everyday.
Every time I attempt to get out, I get more sick. My head pressure gets so much worse when I get in the car.
Sorry, I don't mean to be complaining. I know there are people who has it worse, but I just needed to vent.
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Ema,
You are not alone. I know it feels that way because you are stuck in your room while you heal.
I think someone mentioned a Lymefriends website.
Sadly, there are sooooo many young adults just like you who are dealing with the same feeling of isolation due to this illness.
posted
Sending you big hugs. This disease can be SO isolating and unfortunately most people have no knowledge of it, really.
Hang in there, it will get better.
Posts: 486 | From USA | Registered: Jan 2012
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Ema, I am so sorry you have to go through this. My heart aches for you, for all of us, but especially for someone like you, who has your whole life ahead of you. The suffering this disease causes is so unfair.
As Lax Mom says, this is temporary and you will get better. Have you read Katina Makris' book, Out of the Woods? It might be good for you to read this to give you hope that you will have your life back.
I also have horrible head pressure on some days. It is so hard to describe to anyone who does not experience it. In your case, I bet it is the die off. I have read about many people experiencing this, especially after taking IV ABX.
Are you able to do anything to help with detoxing? For some, lemon and water help. For others, anything that makes you sweat helps. Acupuncture helps me.
Thinking of you and sending big hugs your way.
Posts: 2380 | From New England | Registered: Aug 2011
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
"Every time I attempt to get out, I get more sick. My head pressure gets so much worse when I get in the car."
How far have you ramped up the systemic enzymes? Once your digestive system is good with three tablets, you can increase quickly up to ten daily, in one dose.
Be sure to take these on an empty stomach. This is so that they won't dissolve in the stomach with food...if they do, they help to digest the food.
You can drink water or iced tea while you wait at least 30 minutes. The coated tablets will pass through the sphincter (valve) into the small intestines, and your stomach will be growling because it's empty. Then it's okay to eat.
About 25% of the enzymes get absorbed through the intestinal walls into your bloodstream. They will reduce inflammation and fibrin, and the blood will flow more easily through the capillaries.
With the improved circulation, your brain cells will get more oxygen and nutrients, and the head pressure should decrease.
In Europe, the doctors prescribe 30 or more tablets per dose, to "force the therapeutic response." From what I read, they have not had problems with overdose or side effects.
Once you get up to ten tablets and see what your response is, you can try either a higher dose or take two doses per day. I've tried 20 tablets of Wobenzym daily, and I do notice good results...reduced head pressure and body pain. But this can get pretty expensive.
You can also reduce the inflammation and pain with fish oil that has a high percentage of EPA. Aim for 2000 mg of EPA daily, in one dose, with food. Look for a fish oil that has 500 mg of EPA per softgel. Minami MorEPA is one.
Fish oil improves the quality of the cell membranes, and nutrients and oxygen can pass from the blood vessels into the body's cells. Your skin should improve, as blocked pores will liquify. I never need to use hand cream any more, as the skin is supple and conditioned.
With a combination of high doses of systemic enzymes (I take Wobenzym) and fish oil, you should be able to reduce headaches and head pressure.
The systemic enzymes will help the white blood cells to find and destroy any Lyme bacteria they find. This is because as they reduce fibrin, the biofilm that is protecting bacteria is dissolved. Many doctors prescribe systemic enzymes along with antibiotics so that the antibiotics will be more effective.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Its totally fine to need to vent... we understand here!
I feel like life is passing me by and there's nothing I can do about it.
I wish I could press pause on my life until I feel good enough to truly enjoy it!
I just keep getting older and older and year after year passes me by. I enjoy everything I possibly can, but you are right... This isn't really living.
I'm in bed 23/7... meaning that I get up for 5 minutes at a time throughout the day for about 1 hour total,, but for the most part I'm living in my bed.
All of my friends live far away as well as my family so I'm alone most of the time while my husband is at work.
I can't think well enough to write emails to keep in touch with friends, and most of my friends never want to talk on the phone so I just never communicate with them anymore.
There are lyme support groups in my area, but I never feel good enough to go.
If you ever want a phone friend I would be more than happy to talk to you, or anyone else in the same situation
I wish reading and writing wasn't so hard for me most the time because there are so many great people on this site who understand.
Its just too hard for me to read and write enough to get to really know anyone!
Anyway, hang in there Ema! I hope things get better for you soon.
I think you should also tell your sisters how alone you feel and how much you need them right now...
Posts: 442 | From usa | Registered: Oct 2010
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi Ema,
I can relate to that feeling of life passing you by.
Healthy people don't like being around sick people. It's the same for the relationships in my life as well.
I know it's hard to believe, but things will get better. Try to focus on being fair to yourself and being fair to others.
Life experiences like this happen for a reason, I don't know what the reason it, and some days it sucks, but hopefully in five years or so you'll be a vibrant, healthy young woman with a wonderful future ahead of you.
Maybe being sick like this will make you the best nurse, because you will have first hand experience of what it means to be so ill.
Take care
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi luvema,
I'm so sorry that you are going through all this.
Know that you are not alone, even though it may seem like it.
I recommend reading inspirational books to boost your spirits and listening to KLove radio, which is positive and encouraging all the time!
Go to www.klove.com, scroll over the heading "Music Room" and click on "listen online".
You can listen while you surf the net, or whatever.
Someday you will be a very compassionate nurse because you will understand what it is to suffer.
I am saying a prayer for you to feel encouraged and for complete healing!
Hugs to you!!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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I can totally relate.
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