Hi, Christine:
As others have stated, I'm also sorry for your suffering. I know that doesn't help you, but it's what people say when they don't know what else to do.
Also, I want to underscore the point that others have made:
We all DO believe what you've shared with us.Even if we can't guarantee that any advice given will solve any of your issues, you can at least feel safe in knowing that this is a place where you will be heard and believed.
Given your cognitive challenges, I won't recommend you spend hours reading through old posts, but, if you did, you would find post after post of heartbreak, disappointment, depression, anxiety, thoughts of suicide (which creates more problems and leaves behind a wake of pain and suffering for everyone else), loss of jobs, homes, savings, retirement accounts, friends, family, divorce, and on and on.
Like you noted, why would anyone want to make up such things and be ostracized not just by society at large, but also friends and even family? Obviously, no one in their right mind would do so. There's nothing to be gained.
We've walked through the fire, too. Many of us here still are doing so. Chronic illness -- whether it's Lyme, co-infections, or other named conditions like Multiple Sclerosis, Fibromyalgia, etc. -- is often miserable, debilitating, and erratic. Plus, it's not exactly the same for everyone, even if people share the same diagnosis. While it's cliché, it can be one step forward and two steps back. Or, five steps back. Or, no steps forward for months, and then, right when a person is ready to quit, there's a quantum leap forward. It's a mess. And, it takes time. How much? No one knows. And, any provider who says they know is someone you probably should avoid.
These comments are not meant to be discouraging, however. Rather, they are meant to help you calibrate your expectations with chronic illness.
The good news? People can and do get better.
While this forum has many threads about
pain, suffering, and loss...it also has many stories about
healing and recovery. There may be fewer of the positive stories, but it's only because once people get their life back (or, at least, enough to live like a mostly normal person), they don't usually hang around. They get back to life and try to make up for lost time. And, I think I can speak for many in saying this illness has a lot to teach us. It's a terrible way to learn things like patience and gratitude, but the lessons and very personal and can be quite severe.
Though I've had other health issues for about
35 years, my most recent struggles began eight years ago. In that time, I've spent at least $30,000 out-of-pocket in that time. And, I'm one of the lucky ones, because others have spent much more. Others may have spent less. And, there have been folks who have suffered more and longer than me. So, again, you're unlikely to find anyone here who can't appreciate your struggles on some level. We have a lot of empathy.
I'm not sure of your financial situation, living situation, relationships with friends and family, etc., but you really only have two choices:
1.) You can take action, or
2.) You can give up
That seems a bit melodramatic, but, really, that's the only two choices any of us have in any situation. While others can help you along the way (if you're fortunate enough to have such people), they can't do it for you. It sucks and it's unfair. But, nevertheless, that's the reality. We have to deal with the way things are...not the way we wish they were. That's unproductive.
As you can see, I'm no Pollyanna and I'm not a cheerleader. As much as I'm offering this advice to you, it's also a reminder to me that I could do better myself. I'm struggling, too, though not in the same ways as you are. I hope you're able to muster the resources (mental, physical, emotional, etc.) necessary to start your journey.
Finally, did you read this thread that's pinned at the top of the main page on this Lyme forum?
New To Lyme?.......Start here!https://www.healingwell.com/community/default.aspx?f=30&m=1606610If not, do your best to give it a read, as your time and energy permit.
Like everyone else, I wish you luck.
Dude