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I wish I had a more accepted disease instead..

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Posted 10/26/2014 7:08 PM (GMT 0)
Just a bid ole vent..


I know that sounds horrible. It's not the name that I want, it's the acceptance. I want to it to be understood how horrible his disease makes you feel. I'm sick of people that thinking that this "hard to get and easy to cure".

I was one of those people before I got sick. I heard of Lyme and knew it was in my area. I knew that you needed to go to the doctor if you got a rash and they would give you antibiotics. I knew that it would make you feel crappy for a few weeks. I had NO idea that it could do THIS to people....

I've been badgered by friends all morning to do things with them. And I just simply can't. They figure I'm a flake.. I wish that were true! I struggled to get ready to go anyway, just in case by some miracle I began to feel better. I took the shower that made me feel worse, brushed the hair that is falling out in handfuls, choked back the puke as I brushed my teeth.. Just those simple things wiped me out completely. I started to pass out before I gave in and told them absolutely not, I can't leave my house. I took my blood pressure and yet again saw scary numbers. I focused on my 2 year old son playing innocently as the room faded black...

As I started to feel better and regained my focus the tears started pouring. It wasn't even a choice of whether or not I wanted to cry. My face wasn't crying, the tears were just there. How could I try to go to that stupid babyshower alone with my son if I'm passing out with him at home? Why do I even try? At what point will I accept this disease for what it is and stop trying to pretend that I'm normal? How far do I push myself before I completely fall off the edge? Am I dying? Becuase this doesn't feel like living....

I remember what it feels like to be alive and well. I remember what it's like to not think twice about going to check the mail. I also remember what it feels like to notice I need more eggs, pull my shoes on, hop in my car with my son and go get some darn eggs! I feel like my life has been taken away from me. My body is a torture chamber. I try and ignore the pain in my body, the fuzziness that once was a very clear, smart thinking brain.. But it continues to prove to be relentless.

When you have Lyme disease, no one understands what you go through on a daily basis. If you have a more accepted disease, people love to hear about it. With Lyme you have to fight for yourself when you feel like you got hit by a truck. With a more accepted disease everyone flocks to your aid and your only job is to be sick and heal. How does this happen?? And why??

I hope that whoever is benefiting from our suffering as Lyme patients gets this disease. I hope that they get denial letters from their insurance. I hope they feel hopeless. Maybe that is the only way things will ever change. I know I didn't understand until I had it myself.... That might make me an evil person but I don't care. They don't care about me either.

Post Edited (IHL) : 10/26/2014 7:41:59 PM (GMT-6)

Posted 10/26/2014 8:23 PM (GMT 0)
I know what you mean IHL - but we fight because the alternative isn't something we can consider. I would encourage you to read this article. It was written by a gal with Lupus, not Lyme, but it applies to us very well. www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

You might try educating your friends too. We have posted some really great resources for helping to educate those that wish to know and I'd be happy to list them for you now if you would like. You could have everyone come to your house one day - that way you don't have to leave - and let them see what untreated Lyme looks like. It may not be what you would like them to see of you, but you would also be educating people that need to know. Something you may want to consider doing at some point. At least then they would understand. Or just see if you can get them to watch "Under Our Skin" even.

While having cancer surely seems like it would be easier just due to the acceptance, it's not something we should be saying. It too is a long term issue and people don't have the patience to stick with helping someone long term unless it's someone in their family, and even then most won't stick around.

We have a member here that had cancer at a very young age (15 if I'm not mistaken) and now has Lyme and other infections. They surely don't see that one is more preferable over the other condition, believe me! Both are hard to deal with, and we don't know what it's really like unless we have either been in their shoes or have been right beside someone that has gone through this the whole time. So it's best to restrain from saying things like this - although I really do understand what you mean.

Hang in there!!
Posted 10/27/2014 12:24 AM (GMT 0)
I was just meaning that I wish Lyme disease was an accepted illness like cancer. I was only meaning to use cancer as an example. I dont care what it is called, if you are sick you are sick.

My mom and my grandma both died of cancer. I know how bad cancer sucks. I have a great respect for it. I was only using the term metaphorically.
Posted 10/27/2014 12:30 AM (GMT 0)
http://www.spirochicks.com/2011/04/empathy-cancer-versus-lyme.html


"What she meant is that we are feeling just as bad as chemotherapy patients, yet there is a huge gap in support and empathy. Is it that people can't see how bad we feel on a day to day basis? Why aren't we lauded for keeping up with life while faking that we feel better than we do? We do this for others - to be social. (See my post on the Ginger Rogers Club.) Do our loved ones forget how hard it is for us to keep up with life, every day of our lives?"
Posted 10/27/2014 1:40 AM (GMT 0)
I think the bulk of Lymies have to learn to deal with a lack of understanding. It's just something you can't understand until you go through it. Right now, Ebola is taking the lead, so Lyme is more in the shadows. Just do the best you can and hang in there. You have all of us who understand.
Posted 10/27/2014 2:17 AM (GMT 0)
IHL, I am new to all this and only beginning to have symptoms that affect my life. I am losing my eyesight and may not be able to drive. I have never been very social, so I don't get invited anywhere and I have very few friends. But I am very involved in my community through my daughters' sports and I do a lot of side work accounting for various groups. I am planning to write a letter to these groups saying due to health reasons I need quit to focus more on my healing and leave it at that. I'm not saying much else because even my family didn't understand until they watched Under Our Skin. So my plan is to ask those who ask me about my health problems to watch the movie and hopefully they will because it was very effective with the most important people in my life.
Posted 10/27/2014 3:06 AM (GMT 0)
So I obviously edited out the "C" word.

Mascoe1- I too tell people just to watch the movie. Pretty sure only one of my friends actually did.

This thread was just a vent. I came here to do it knowing that those in this forum get it.

Sorry for those that don't agree with my point of view. Just having a bad day I guess.
Posted 10/27/2014 3:08 PM (GMT 0)
Yup!! I am also kind of new here I have been reading this blog for several months and can relate to how you feel. I hate this disease and cringe when someone tells me I look good when I am a walking dead!


Trying to keep going is the hardest for me right now I am tired wore out and just give out.

so I just felt compelled to comment that what everyone has stated in this string, I live it and totally understand how it is.

I wish it was over and wonder how do you last treating it for multiple years?

I have had Lyme for 16 years and recently been diagnosed thank God for Igenix and am seeing a LLDR
in Ohio oral abx are torture working on 3rd mounth of treatment and it hard to see the light at end of the tunnel

Thanks
Posted 10/27/2014 4:44 PM (GMT 0)
I get it, IHL, because if someone has cancer everyone brings them food, helps them anyway they can.they are accepted and cared for.
We lose our friends bc nobody wants to hear about our struggles , sometimes even we don't fully understand what's happening to us. Especially at first, we search and search.

I had to learn to save my energy and let go of bad stuff in my life,like superficial people.

Jeep dude, I got very sick and toxic on antibiotic treatment. I couldn't stay on it. Doing much better on herbs and supplements.
Posted 10/27/2014 5:34 PM (GMT 0)
IHL, I completely understand what you were saying, please don't take offense. I too wish I had something that was not only more accepted as a "real" illness, but that had some support systems set up so that we didn't have to rely on just forums!!

Yet, here we are, and we certainly don't want to upset anyone else by comparing conditions. We have to understand that most people won't get it (understand it), until they get it (get infected themselves).

That's one reason we do our best on this forum to back up all the information that is presented here. We need to know that we aren't contributing to misinformation or the ignorance that is out there.

I'm talking with a young teen right now that can't convince their parents that although they had the 3 weeks of abx, and the second ELISA came back clear, that they aren't healed and are still having symptoms. Crazy that we should have to fight so hard just for recognition of having an ongoing infection!!

This whole thing makes me just sit and shake my head many days. The misinformation and ignorance is literally killing people- yet it seems like no one wants to hear about Lyme until they themselves have it. All we can do is to do our best to educate all those that we can.

I'm sorry that I seemed to have upset you as well. It was not intentional, I promise.
Posted 10/27/2014 5:58 PM (GMT 0)
IHL, it takes time to accept the losses that come with Lyme. It's hurtful and hard to accept, but can be done, but that doesn't mean all the hurt will go away. It just isn't dominating your mind so much. I wish everyone here had a support group to go to since that can help so much to be around people in the same situation. I hope you can find some peace of mind.
Posted 10/27/2014 7:54 PM (GMT 0)
I'm just upset about this disease! No offenses taken. Language is a tough thing to navigate sometimes.. It's hard to find the right words to express opinions about this.

I don't always feel like being sensitive. I feel like it's unfair to have to tip toe around this issue all the time, and that upsets me.

The wounds run deep with this disease and I'm sure it goes for any disease that is chronic and debilitating. I hope that we all find peace of mind with our losses. It's a heavy burden to carry around, that's for sure..

I'm having a hard time lately adjusting my life. I'm angry that it I even had to get this sick in this first place! I can't be positive every single minute of every single day. I will never tell a sick person to "be positive" ever again. I find THAT offensive! We work hard for our grumpiness. As the frustration builds up inside of you it's eventually going to boil over. I like to let it spill out here.

I knew what I was saying and feeling was complete BS. It felt good to just get it off my chest. Thanks for being here :)
Posted 10/27/2014 8:11 PM (GMT 0)
I'm glad we were here for you to get some things off your chest! I know what you mean! I've battle treatment fatigue, and I just don't want to be here any more!!!! LOL! As if I had a choice in the matter!

Yet, I do what I have to get through each day and take a deep breathe and do it again and again. I just keep telling myself, do I really want to live with the alternative? My answer is a definite and big NO! I got a taste of life without Lyme, and I'm bound and determined to get back to it!

Hang in there - we'll get through this together!!
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