Asking for encouragement. ✌ Tired of this roller coaster.

Hey guys,

I am grateful for all the love and support you all have shared with each other. I don't really know how to interact with this forum too well. It's been 11 months since i was first diagnosed with Lyme, Bebesia, Mold Illness, and Parasitic worm infections.

It has been such a crazy roller coaster ride. It finally broke apart my marriage that wasn't doing very well in the first place and I have really come face to face with the fact that I am poor. I married a poor man who lied to himself and everyone else about his income. And all the places we've lived together were terribly mold infested. But he is oblivious to these problems.

I have been so scared of researching because i get so easily confused and anxious.

I haven't got the level of treatments i need. My husband doesn't believe in doctors or health insurance.

I have been trying to start over and make new friends...but we all know how that goes for people like us who have limitted energy each day.

Oh and add the fact that i have some really agressive angry vindictive stalker types in my family of origin, so i haven't been on social media in years and I'm really afraid to post anything on here because it's visible to the public....

Anyways, i guess i'm desperate enough to find support so i decided to vent. This is so hard....I am going to keep up with my gratitudes though. It really keeps me going.

Any encouraging feedback would be oh so welcomed.

Thanks y'all.

Peace,

🐦SongBirdie

Hi, SongBirdie,

I'm so glad that you reached out. This is all too hard and overwhelming to deal with sometimes even when a person has support, and absolutely miserable to deal with while isolated. I might not be able to help pay for appointments or hold your hand when you feel bad, but by golly I can send you a message!

It's great that the gratitudes help you. I think it's important for all of us to be reminded to take a moment, center ourselves, and reflect. It's tempting to want to plow through the difficult parts of life, but when we do that, we miss out on a lot.

Your family of origin and husband sound toxic and awful. I am thrilled for you that at least some of these people are out of your life! A lot of us have these complex traumas compounding our illnesses, and be radically compassionate and patient with yourself while you work your way through it.

I'm terribly sorry for all the abusive behavior you described, including your partner preventing you from accessing needed health care and a safe environment in which to live. No one has the right to prevent someone else from accessing health care. Are you worried about what he would do if you accessed services? Is he restricting you financially so that you can't do things he doesn't approve? You said your marriage ended, but are you living apart from your husband yet? Do you need any help researching resources for folks who need to get out of dangerous relationships? That's part of my professional background, so I'm happy to poke around for options if you tell me your city. People whose partners restrict them medically and financially absolutely qualify for services from domestic violence organizations, because those are form of abuse.

In terms of connections, I totally hear you about feeling isolated. I'm not on social media either (unless this forum counts...?) but I have found some friends who have Lyme (and some who don't) who will email, text, and talk by phone, since I can't go anywhere or risk the germs of having people over. It took time to build that group, though, and to get used to friendships that are conducted remotely and almost never in person. When I first got sick, a lot of friends fell away, which hurt, even though I understood. A few gems stuck around, though, and the new folks have come from word of mouth and local email lists, including a Yahoo Group for people with Lyme in my state. Perhaps that could be a way for you to connect with more folks? Honestly I think it's important to have a few friends who aren't mired in chronic illness, for variety, so we don't start to think this is our only identity. Ditto for hobbies and interests. It's tempting to spend all day researching this stuff, but I know that I have to feed other parts of myself, too.

Perhaps it would be a good idea (for lots of people, not just you) to start a thread about the cheapest ways to treat infections and detox. Possibly also for the logistics of getting disability benefits. And if research feels overwhelming, then I bet a lot of folks here would be happy to summarize what they have learned or share their experience, so I hope you never hesitate to reach out.

Tired of this roller coaster ride. Amen!

Big hugs to you, SongBirdie. Keep singin.'

running wild said...
Went through the divorce part years ago, 7 years before a Lyme diagnosis. Three small kids, at the time.

But despite dealing with Lyme, it was better than dealing with both my ex-wife not believing and Lyme. In the long run, it was better in many ways.

As I mentioned in your other post, this site is a great place to be for those dealing with Lyme. Faceless friends but much better than many I have known in life.

Sorry you weren’t supported, running wild - I can’t even imagine how difficult that would be.

My husband is supportive but I do still feel some guilt about not being able to work - I know it’s not my fault but it still creeps in to my head.

And on occasion my husband can get frustrated with it all -
I get worried he will just one day pack his bags ... and say he’s had enough.
Not a fun life we’re having - but we’ll just have to make up for lost time once I’m well... just gotta try and keep positive.... so hard some days.

Girlie - you hang in there and keep looking for improvement, as I believe you have written about experiencing.

What I wrote was not meant to be a "poor me," but to let others know so many can relate to what they are dealing with and living through. This site makes a difference for so many - myself included. And so many of you do so much to provide help and information. Much appreciated,

SongBirdie - you keep venting - when you need to. You have been a positive, warm presence to this forum..so lean on us when you need support.