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: 2386 | 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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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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posted
It takes a lot of patience to get through this. I think we all need treatment that works for us, that improves us, so I hope you will be finding that right treatment combo for you.
When I didn't know what I had, I hung out with disabled friends, with all kinds of disabilities, because we could relate to each other better than healthy people. So that's another idea, to find people with varying disabilities, not just Lyme, since it can be more sympatico.
I participated in those ill friend groups until I found out I had Lyme, and then I started to treat, and I started to have more options again.
Posts: 13117 | From San Francisco | Registered: May 2006
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I really feel better whenever I post here, because each one of you understands, and it feels good to know somewhere out there there is someone that understand.
@carol, my lyme doctor told me to just take two a day, not sure why. But I am actually doing 3-4 pills a day. 10 a day!! That seems like a lot, but maybe it's not. I am taking fish oil, but I'll get a better one.
@dbpie, I had the head pressure before I started antibiotics, and it haven't gotten any better.
@kaite.. I am sorry you're going through the same thing. It's horrible. I hope you start having better days where you can start enjoying life again.
@greta.. you're right. Now I started to realize that healthy people don't like to be around the sick. It's kind of sad, but that's reality.
@robin, I totally agree. I was doing a class last year that involved clinical time at the hospital, and I was around a lot of sick people. I felt like I can relate to so many of them, and I just loved being there and comforting them.
@dekra, thanks for the suggestion, i'll check out the link.
thanks to all of you!
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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posted
Ok, I think that's an idea for you again to consider, to reconnect with other sick people in some way.
Surprise, surprise, sometimes they're wanting to tell us about their lives as much as we want to discuss ours.
Really, it's not a bad idea - it gets us out of just being in our own stewing, and sharing with others seems to help everyone. If it gets too much, then just step away - you can monitor your degree of interaction.
When I didn't know what the h*** I had, I used to hang out with others who were disabled in some way. I'll never forget spending an hour with a woman in a wheelchair,
waiting to try to get her on a bus - this was a priority busline, with chair straps that are supposed to work, etc, and they were all flunking. That was part of her frustrating life.
- all I'm saying is we can each of us try to make it easier for others who also have disabling conditions, and if you like doing that kind of thing, it might be gratifying.
I just read your post again - you say you're at home. So this idea would need to be modified perhaps, for people to come visit you who are disabled?
Maybe there's community programs that you could participate in - might take a little creativity to find out how you might connect, and consider what you like to do and whether you could do it with some visitors. ?
Posts: 13117 | From San Francisco | Registered: May 2006
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
"@carol, my lyme doctor told me to just take two a day, not sure why. But I am actually doing 3-4 pills a day. 10 a day!! That seems like a lot, but maybe it's not. I am taking fish oil, but I'll get a better one."
Well, you could try experimenting with the systemic enzymes for a week or two, and see if you have any changes in the head pressure.
People who take systemic enzymes have not had side effects, from what I've read, and if something happens that you do, as you're ramping up, then you stop.
If you can take ten tablets per day for a couple days, I'll bet that you'll feel some improvements.
You can tell your doctor that another patient encouraged you to try this, as she had good results with a higher dose of systemic enzymes.
Do you remember KDay from the chat room? He tried systemic enzymes (Serrapeptase) and didn't think it was doing much. Then he ramped up to a higher dose and was surprised to notice improvements in his symptoms.
-------------------- I'm not there yet but I'm closer than I was yesterday.---- Lyme Band 31,41,58. Being treated for Lyme and Bartonella. Posts: 149 | From Maine | Registered: Oct 2010
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Annie C
Frequent Contributor (1K+ posts)
Member # 14
posted
I spent over 6+ years in bed and bathroom. Right now IM dealing with Temporal Lobe HEADACHES with 2 seizures. It never surprises me anymore. It's the saying. I used to suffer from ADHD now I just live with it. Thats how Lyme is, only Lyme causes more internal damage and dain bramage.
Has anyone read about the humor Lymers can come with just so we don't feel so DUH!!!
-------------------- May God Bless you every day. And Never say never and do not give up no matter what. We need you to help others. Posts: 1288 | From Tetons Wyoming | Registered: Oct 2000
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
I know how you feel.
People get bent out of shape when you can't do the things they want you to.
I have never understood it, but it does seem to be the way it is.
Will send up a prayer for you.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Be strong. We do have the ability to heal. It's hard to be abandoned by family & friends but you will have time to make new friends. Focus on yourself & try to do things that make you happy & feel better.
Best wishes!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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I am so sorry with everything you are going through. I am in my forties and have very similar things happen to me. My friends just don't call anymore.
But what makes it so difficult on top of feeling abandoned is when my son asks, "Mommy when can we have a play date with One of his friends."
And I try to explain to him in a gentle way that for some reason those Mommys don't call because they are too busy, out of town, or they just aren't considerate to call back". He sees how some kids his age can be nice, responsible, etc.
and he sees how other kids can be. So I tell him that even though these Mommys are grown up doesn't mean they make good choices. So, I tell him I am sorry and that we will make new friends and spend time together as a family.
I just hate how this disease can affect every aspect of our lives. As others have said, you will and already are compassionate and will understand when someone is going through a hard time.
I don't know how long you have been on your IV antibiotics, but I didn't start to feel better until about 3 months into it. I do take Flagyl with it (it doesn't bother me thank goodness), but I don't do it 30 days a month.
And if you and your doctor find this antibiotic isn't working for you, you guys can try something else. I had to start taking something for my depression, and I found 5-Htp helps and I take it at night.
and I believe L-Tyrosine can help with energy..but I would Google it and see what you can find. And as many have suggested the enzymes, I have only heard good things about them- I need to add them to my list.
Just know you are not alone and you will get through this. I don't know if you have a TV in your room but if you do, maybe some comedy's, and sometimes movies that tug at your heart help because you can cry and have a bit of release.
Just some ideas. You are welcome to PM me and I would be happy to talk with you on the phone. . We may get interrupted by my two boys, but they are sweet and may make you laugh at some of the things they ask me.
Hugs to you!
Posts: 167 | From Southeast Tennessee/Chattanooga/Atlanta | Registered: Oct 2012
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posted
You are so not alone, we're all with you understanding and caring every day.
Posts: 867 | From PA | Registered: Jan 2006
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I feel for you.
I am seeing the same thing in my life.
Luckily my husband is pretty good- so far.
I had plans to go to college this fall and now I can't because my brain can't remember words I just read!
I really want to be a dr. Oh well.
There is another plan for me I guess.
I am very sad a lot too because my friends don't call me. Some days I can't even have a cnoveersation ,but just knowing someone cares means so much.
My best friend is great but she lives a little bit away and works a lot.
I have 5 siblings and they have been supportive in their way so far (got positive blood test about 4 weeks ago)but we are not really friends so.... and I don't really see any of them much as they all live away.
It was good for me to see your post to know I am not alone.
Thank you for sharing! hugs your way.....
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
I too am going through the same things with losing touch with friends. Over the past few years I have defaulted to texting, so as a result the only few I talk with are Doctors' offices and my beau. I am sooo grateful to have him to talk with, pray with, bounce Ideas off of. I think some friends don't contact me 'cuz they're afraid they'll wake me or that I'm not feeling well, etc. I am making a new commitment to call people once a week or so. OTOH I have had a few toxic relationships that I have to forgive myself for letting go. Also I have siblings who trash me behind my back when I'm not present (you know the deal: She's a hypochondriac, sponging off etc, the nerve she had to call me... [that's the most painful]) and I have to accept that I have to let them go, that they are just too toxic & have to be self protective. A friend said, "You could be working at the UN for world peace and your sister would be trashing you cuz your floors are too dirty!' Well, you get the picture.
-------------------- Lyme: 1991 DXed: 2008
'Do not go where the path may lead; go where there is no path and leave a trail.' Emerson Posts: 45 | From Georgia | Registered: May 2012
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
A great big hug for you! Hang in there, you're not alone! :)
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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