The link above is written by a young woman, posing this very question, but she DOES believe it will get better too. It is weird to make friends with complete strangers, in my circumstances on other continents, but they have given me the most inspiration and hope to 'keep peddling'...
Candice lists 3 things for Late Stage Lyme:
Late Stage Lyme Disease: It Gets Better.
1. You will find a doctor that that wants to, and knows how to, help you.
2. You will find a treatment that doesn’t just make you sicker.
3. You will meet others that understand.
You will find friends will move on. For 20 + years I've been called the 'party pooper', always spoiling everyone else's fun. In 1994 in the middle of a raging tick bite fever of 40deg C, I was 'forced' to go out with the family for a night of celebration of 'Guy Fawkes' I felt like death, but nobody cared to notice. It was just me spoiling their fun. After a years of being debilitated and continuing to be the missing person at family gatherings and social events, the person who’s too sick to host visitors, or long winded conversations on the telephone, you will find that friends move on.
When you can't find a family member to vent with because it is hard for them to understand that you do actually feel like you are dying. The life blood is being sucked out of you. You are experiencing symptoms that sound like they could be from another planet. Even tho it hurts a lot, both mentally and physically, I try to be forgiving as they cannot possibly understand what is happening to your body unless they themselves have experienced Lyme. It would be SO nice to meet people who just “get it” !
At first I was reluctant to connect to complete strangers over the internet and start divulging details of my life before the Lyme diagnosis. However, I have learned that there are ten's of thousand of other people out there with the same problems. You realize they are your support. You swap 'tricks' to help you cope. Share recipes to keep the allergies at bay. There is a community out there who will stand by you when you are having a bad day. They are creative smart people, just like you, who are prepared even in their darkest hour to post a wise crack that will have you smiling from ear to ear. They just happen to be fighting a similar battle to you.
Don't be afraid to 'reach out'.
