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MY OWN UNSOLVED MYSTERY
I love to problem solve. But this is one problem I can’t figure out. It seems no one can figure it out.
What do you do if you have Late Stage Lyme Disease?
I get asked this question ALL THE TIME and you’d think I’d have some great answer after all these years—but I fall short every time. When someone asks, I want to hand them the secret formula for success…but I just don’t have it.
TREATMENTS I HAVE TRIED
- Physical therapy
- Infrared sauna
- Talk therapy
- Rife machine
- Antibiotic treatment
- Ice packs
- Heating pads
- Epsom salt baths
- Homeopathic treatments
- Ionic foot baths
- Pain killers
- Bed rest
- Muscle relaxers
- Neurological medications
- Hormone therapy
- Vitamin IVs
- Ozone therapy
- Massage therapy
I’m sure there’s more that I’ve overlooked, but the point is, I’ve tried it all. I’ve seen at least 20 doctors or specialists (that is overwhelming to admit!), and had more testing than I care to remember.
I know which treatments produced awful results for me, and I know which ones seemed to soothe my symptoms, but the thing is…I also know people who reacted in the complete opposite way!
Every case is different. Some struggle with neuropathy, others with mental disorders. Lyme can attack a different area in each person. You may have heart, adrenal, or neurological issues (or all!) depending on your case.
Co-infections are common, and complicate things even further.
I’m slowly learning what my body needs and I can confidently say my flareups are much simpler to handle than they used to be.
I wish I had your formula, but I don’t. Instead I have some advice that I think can help anyone dealing with this disease to press forward and see a glimpse of hope.
TIPS FOR SELF-CARE AS A LYMIE
1. LEARN TO REST
Find a balance that works for you. I still struggle with going full-force super mom or bed-ridden (with no in between). Learn to take care of your body in this new situation you’ve found yourself in. Schedule in more breaks throughout the day, including an after-work nap or earlier bedtime. Break your chores in half to allow your body to recuperate (take 2 days to vacuum, etc.) or get help from family members.
2. TALK TO SOMEONE
Don’t try to do this alone. Lyme is hard. Ask for help when you need it, call a friend when you’re struggling. Talk to a counselor if you are overwhelmed or feel like a burden to those around you. You aren’t, but it helps to hear it from someone else! Make it a regular habit to reach out for encouragement from those who are helpful.
3. TAKE CARE OF YOUR MIND
This is something I wish I would have learned from the start. You can read about all my tips for self-care in my mindfulness series. I highly recommend this for any Lyme sufferer.
4. FIND YOUR MOTIVATION
Fill your life with things that inspire you. Maybe you used to be into music, art or decorating. Start learning about your passions again! Use this opportunity to give yourself a fresh start–a new motivation for life. When you’re in pain or depressed 24/7 because of Lyme, thinking of waking up to that life every day is not going to be motivating. Because I love art, I was inspired by the life of Frida Kahlo and how she painted every day she was bedridden.
You can read more about places to discover new hobbies or interests in my post Why You Need to Discover Your Hobby.
5. CONNECT WITH POSITIVE PEOPLE
It helps to have a community of people who understand what you’re going through. Unfortunately, I’ve yet to find a Lyme support group full of positive people. Most are a group of huge complainers (and understandably so!). While it’s good to be relatable, these groups can be detrimental to your mind.
Find a Facebook group or in-person support group where the overall feel is one of hope and positivity. If it becomes a pity party, it will only add to your stress and despair.
If you can’t find a Lyme-specific group, I’ve found that chronic pain or chronic illness support groups are good too if the overall vibe is encouragement or laughter.
FINDING YOUR OWN SILVER LINING
Lyme is the reason this blog even exists. It was my motivation every day to wake up early and go to bed later, because I had an outlet for something that reclaimed my life. It wasn’t about more suffering, it was about more hope.
This blog is my outlet for creativity, my resource for all the things I’ve worked so hard to figure out and a way to connect with others in the struggle. It’s been almost 2 years and I am still waking up early every morning to work on my art or my blog.
A HUGE THANK YOU to all of my readers for your support and encouragement along the way. To my fellow Lyme sufferers, I pray that you find what you’re looking for.
YOU MIGHT ALSO LIKE
I hope that you were encouraged by something you found here today. Here are a few more places you should checkout if you are a Lymie like me!
- A good post for others to read to understand what you may be going through: What I Want You To Know About Late Stage Lyme Disease
- Read more about my journey and the inspiration Lyme played in creating this blog here: Getting Out of Bed: How to Get Back Up After Life Gets You Down
Hang in there friend, there is hope for better days even in the suffering. I still struggle, but I am happier and more hopeful than ever. Don’t give up. You’ve got this!