Hi, looking for people to talk to

Hi, I'm on here looking for other people like me. I suffer from 2 Chronic cases of Lyme, and now have just been diagnosed with Bartonella which is a serious coinfection. I'm bedridden to all of this and so if anyone wants to talk I'm online all the time.

Thanks,
ACE29

Hi ACE29

Welcome to the forum!

This is a great group here - please feel free to tell us your story.

I think everyone here would agree that this illness is demoralizing, lonely, overwhelming, painful, frightening, frustrating, devastating, and even dehumanizing. You definitely are not alone in having a hard time with it!

Reaching out to others who know what you are going through and can validate those feelings can help a lot. Having a plan helps me; if my current healing modalities don't work, then I know what I will try next. Having support from people in your life is great, including therapy. Connecting with people online can be a great way to pass the time and be reminded of other parts of your identity that can feel overshadowed by illness. Human touch can be helpful, either with loved ones or with care practitioners like a massage therapist. Activities or practices that make you feel good in your body are important, to remind you that your body is a source of pleasure and comfort still, and not exclusively pain. (Even something simple, like feeling the sun through the window on your skin, or lightly scratching your forearm.) Guided visualizations can be great, and apps designed for mindfulness or chronic illness (e.g. Curable) can be helpful. Limbic system retraining programs can help to unravel the neurological damage done by years of physical and psychological stress from Lyme. Adaptogens and other supplements can have a real effect on mood and overall wellbeing. Addressing anxiety and depression directly (EFT, herbs, neurotransmitter precursors, DNRS, therapy, apps, meditation, restorative yoga...) is so important because it's so difficult and depleting for the body. These feelings can be symptoms of these infections or a response to the trauma of disabling illness, but it's always best to deal with them so that they do not stress out our already-taxed bodies further. Isolation can feel like a punishment because the sicker we get, the more alone we tend to be! I'm so glad that you are reaching out.

Our lives may look very different from what we imagined for ourselves, but our lives have not ended. We still exist, we still have value, we still matter. It's hard to think about how much we have had to let go, but it's crucial not to compare. (I know, easier said than done!) Wouldn't it be great if we at least had a Lyme pause button to push every now and then?

Thank you so much, right now I'm taking some herbal remedies. How ever they make me very sick since I tend to have sever reactions to them that put me in the ER. Also I'm still in high school so that makes things feel more difficult, I've lost years of school and I am so far behind, my younger sibling is graduating before me. I just want to be a teenager again, and that's really hard to cope with. I see all my friends out having fun and when I got sick most left me saying I wasn't putting enough effort in for them to stick around. I'm an adventurous person and I really enjoy soccer, hiking, swimming and many other activity's but I haven't been able to run for 2 years, every time I try I'm over come with pain and end up falling to the ground. Just as a technical kid dealing with this its so hard to understand and grasp. I wish it would go away.

Ace29,

Hey there! Glad you found the forum and reached out. Disability due to Lyme (or anything really) is hard to cope with at any age. I am so sorry this disease has taken things from you during your school years.

I don’t know what area you’re from, but if Lyme is more common in your area, you may be able to connect in person with others locally through Lyme support groups or through your doctor.

When the loneliness gets to me, I make myself remember people I care about and call them. Focusing on someone else is the best way I know to get my mind off myself. If your friends don’t want to talk, how about talking to family or neighbors. Maybe grandparents or other relatives that you may not see often. Reach out to them, and let them know you’re thinking of them.

For pain, I try to identify what might be increasing my pain and do something about it. If I try a new herb or treatment and start feeling much worse (herxing), I might back off on the dose a little until I feel better and then increase more slowly.

Pain can be exacerbated by a lot of things besides just the Lyme/coinfections. Inflammatory foods like sugar, gluten, and dairy; food allergies and sensitivities; mold exposure; exposure to chemicals like fragrance, toxic cleaning supplies, smoke, etc; not getting enough sleep; overdoing it with exercise or physical activity; EMF exposure are all things that can contribute to pain.

Antioxidants can help reduce pain - Vit C, curcumin/turmuric, Omega 3 (fish oil) are examples. Taking epsom salt baths, using coffee enemas, and using infrared saunas can help remove toxins and ease pain.

Cuddling and hugs can relieve loneliness and ease pain - 2 for 1!!! If family members aren’t doing this with you already, ask them to. They probably need it too, even if they don’t realize it. Do you have a pet you can cuddle with? Pets can be comforting, too.

Post Edited (WalkingbyFaith) : 1/23/2020 8:25:31 PM (GMT-7)