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I've hit the year mark :(

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Posted 8/6/2017 11:01 PM (GMT 0)
It's been a little over a year since I was diagnosed with Lyme. Every time I go to the doctor, I get a new diagnosis - Epstein Barr, Hashimoto's, candida, IBS, staph in my sinuses. It's really hitting me that my life has been basically null and void for a full year. Yesterday, my husband insinuated that I should suffer in silence. His mother had health issues and she was so pleasant to be around. He's about to take a 10-day vacation. When I complained to my sister, she said, "he needs a break". I'm like...a break from what? He's never here and when he is, he's on his iPad. It's not like he's serving me hand and foot. He also travels a lot for work - 1 to 2 times per month, sometimes to China or Dubai. Everything I ask him is like pulling teeth. He says, "I want to take care of you" but he really doesn't. He's also become increasingly sensitive and picks fights when I'm feeling my worst. I get it's not easy to see your wife suffer, but he's become so difficult in the last six months.

Yikes. The full moon and my period have me feeling like a bonafide crazy person. I've just started therapy, but I feel like I'm losing my mind. I need a vacation. Sorry, I'm mega ranting. I need to get it out or I'll bust. I know that complaining doesn't make me a pleasant person, but this year anniversary has been really hard and no one understands. I'm just desperate for some emotional support.
Posted 8/6/2017 11:41 PM (GMT 0)
Hi 10LymeB,
You can let it all out here. We get it and understand on a daily basis how difficult and frustrating every aspect of these infections are.

I wish I could fix it all for you and take away any doubt, pain or sadness this has created in your life.

I understand and can relate to everything you just said here.

I am coming up on a year of treatment in September...I do understand how it feels.

I know that with any chronic illness's relationships can get strained. Everyone around us can go on with their life, yes it can take a toll on them too...but its us that have to live this every moment, every day.

Please stay strong for you and for your sanity. You are important and I really do believe that we have a chance at getting better.

There is hope as others before us have been able to reach wellness again.

Yes there is going to be stumbling blocks for some of us, but we will overcome and figure them out by being here to help one another.

I am praying for you and for your husband too. Take care, Jo
Posted 8/6/2017 11:58 PM (GMT 0)
goshawk, thank you so much for your kind words. I really do need them today. Thank you <3
Posted 8/7/2017 12:01 AM (GMT 0)
Oh sweetie,. How we can all relate. This is the place to come when you need to vent.

You are in my prayers, hang in there. This is a s a difficult thing we must endure.

TRY to focus on the positive, any positive gains you've made. Lots of love and supportive hugs!
Posted 8/7/2017 12:16 AM (GMT 0)
when you hit 3 years than come talk to me ;o) please vent here cause no one else will ever understand what you're going through except those that have the same issues. nope not your spouse, parent, child, best friend, etc. etc. doesn't matter how well they 'know you'. my father used to say you have to fall down by yourself no one can tell you what its like.

be nice if we could impart our sickness on others for a few weeks and see if that wakes em up.
Posted 8/7/2017 12:49 AM (GMT 0)
Yeah, Rikky... when you hit 20 yrs, come talk to me ;)

I was just thinking, though, that it doesn't matter how long you suffer sx or the effects of tx - when it's bad, it's bad. And it often doesn't get any easier but it does get better, though. Just takes time.

Relationships can be hard - especially when you've gone YEARS with illness, which is pretty unusual. Name another chronic illness that doesn't resolve (one way or another) after a couple years.

But being without those relationships can be just as hard - or harder. Loneliness can devastate.

10LymeB -
Your husband doesn't know HOW to help you, take care of you. That's gotta feel helpless. And even the most doting, loving, supportive spouse can't possibly understand how any of this feels. It's impossible. And sometimes, distance can help. I agree w/ your sister, he needs time and space to be away - away from the stresses of your illness but also the stresses of work and travel. I used to travel like that and it's no fun at all. He comes home and life at home is also stressful.

Now, this isn't the same as living through the hell we're living through... but he's clearly not coping well. I'd suggest he find a buddy to go hang out with for awhile and give him some freedom to do something on his own. Maybe it's a great opportunity for your sister to visit and hang out in your jammies and watch old movies or go shopping online.

When he returns, maybe you can talk about doing some counseling - chronic illness is brutal on relationships and you shouldn't be expected to sail through this without some help. He might also benefit from hanging out in our forum a bit - reading some of the information shared here might open his eyes a bit. As Rikky stated THIS is the ideal place to vent. It is the only place where others know exactly how you're feeling and we're allowed to be miserable outloud here.

You be sure to take care of yourself first and foremost.

-p
Posted 8/7/2017 1:17 AM (GMT 0)
Please use this forum and us as an outlet. We are here for you to vent or share anything lyme related.

I have friends and family members that care deeply, though I mostly suffer in silence as well. I fear that it may have the same effect on them. It shouldn't be that way. But people are people. It takes a toll on them not because they don't care but because they do care. And I don't want to bring them down.

However, in your case I believe a spouse/significant other should be an exception. Significant others should be emotional and physical care givers to one another. That's huge part of a relationship. The world is hard enough so you pair bond with another to share navigating this crazy world and what it brings together.

Edit: and to echo Pirouette, he probably wants to help but can't. Our man brains wants to solve problems rather than just listen and show empathy. So when we can't solve it, we feel inadequate, like we are failing you. And then in our man brain, we are told we can't cry, so we normally just get frustrated and upset to cover it up.

Post Edited (dacarte3) : 8/6/2017 7:20:45 PM (GMT-6)

Posted 8/7/2017 1:42 AM (GMT 0)
Thank you thank you thank you! It helps so much to read the words, "I can relate". I'm by myself all day and I don't have friends or family coming around to help...just the hubby who can't cope. I've been spiraling the last few days and I feel like just lying here forever feeling sorry for myself. Thank you all. This forum has been my savior.
Posted 8/7/2017 1:51 AM (GMT 0)

10LymeB said...
Thank you thank you thank you! It helps so much to read the words, "I can relate". I'm by myself all day and I don't have friends or family coming around to help...just the hubby who can't cope. I've been spiraling the last few days and I feel like just lying here forever feeling sorry for myself. Thank you all. This forum has been my savior.

You got infected by a mosquito? Interesting. That's how I believe I got lyme as well. I think this is overlooked.

People just assuming they got bit by a tick but just don't remember. Or they say the never got the rash (probably because it wasn't delivered by a tick).
Posted 8/7/2017 2:29 AM (GMT 0)
You spill it girl! Your feelings are all valid and only truly understood by those of us that are living it.

It's so hard to not get frustrated and angry when every single person around us gets to 'live on". I swear today my wife label is reading a pissed/resentful biatch.

They get time outs but we don't have the luxury of that choice.
They don't understand but they don't really want to understand.

Dacarte, I really smiled and appreciated your take as a guy. My LLMD (a guy) said nearly the same thing at my last visit, trying to help me understand how my husband was feeling, as a "big strong hunter/protector who's failing at his job and when I'm pissy with him he just gets confused. Wrote an Rx of "Timeout" for him and then I lost it and whined about wanting my time out! Waaaaaaaa cry

Maybe the moon is escalating the intensity of our emotions , darned moon.

Hang in there , we are all in it together and we all just have to find the communication keys at home that work.

VCL
Posted 8/7/2017 10:01 AM (GMT 0)

dacarte3 said...

10LymeB said...
Thank you thank you thank you! It helps so much to read the words, "I can relate". I'm by myself all day and I don't have friends or family coming around to help...just the hubby who can't cope. I've been spiraling the last few days and I feel like just lying here forever feeling sorry for myself. Thank you all. This forum has been my savior.

You got infected by a mosquito? Interesting. That's how I believe I got lyme as well. I think this is overlooked.

People just assuming they got bit by a tick but just don't remember. Or they say the never got the rash (probably because it wasn't delivered by a tick).


Occurrence of Borrelia burgdorferi s.l. in different genera of mosquitoes (Culicidae) in Central Europe.

"Lyme disease or Lyme borreliosis is a vector-borne infectious disease caused by spirochetes of the Borrelia burgdorferi sensu lato complex. Some stages of the borrelial transmission cycle in ticks (transstadial, feeding and co-feeding) can potentially occur also in insects, particularly in mosquitoes. In the present study, adult as well as larval mosquitoes were collected at 42 different geographical locations throughout Germany. This is the first study, in which German mosquitoes were analyzed for the presence of Borrelia spp. Targeting two specific borrelial genes, flaB and ospA encoding for the subunit B of flagellin and the outer surface protein A, the results show that DNA of Borrelia afzelii, Borrelia bavariensis and Borrelia garinii could be detected in ten Culicidae species comprising four distinct genera (Aedes, Culiseta, Culex, and Ochlerotatus). Positive samples also include adult specimens raised in the laboratory from wild-caught larvae indicating that transstadial and/or transovarial transmission might occur within a given mosquito population."
/www.ncbi.nlm.nih.gov/pubmed/26631488


so less likely than with ticks, but certainly possible , especially for people on steroids, immune supressants, immune issues, other chronic conditions that affect immune system, weak immune system that is ...
Posted 8/7/2017 4:20 PM (GMT 0)
Just another note to say I can relate as well. This June was my year mark. I've improved but still dealing with it and still have my fair share of days when I'm like, "when will this just go away!!??"

Just know that you're not alone, and I totally understand the suffering in silence.

I hope you have a better day today and if not today, very soon!
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