How many of you feel isolated because of Lyme?
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Thankfully my friends have been very supportive but there’s only so much tv episodes I can watch by myself without going crazy. I know everyone has their own lives but sometimes it feels like everyone is moving forward while I am stuck in agony and pain.
Feeling Very isolated and alone at times was horrible.
So sensitive to sound, light, motion, color, contrast of light, contrast of colors I had to be isolated.
These things would make me so very dizzy. Yet is was not safe to be alone because of the dizziness.
I would lay holding on the bed feeling like a bobble trying to stop the spinning.
Yet doctors would not listen to me until I found an LLMD.
He provided me with the needed antibiotic injections which made a big difference.
Unfortunately he no longer accepts insurance and my PCP has refused to continue the injections.
Isolation is my unwanted friend. He showed up in 1994 and he has never left my side. Isolation took control of my life after others abandoned me. Healthy people aren’t comfortable around chronically sick people. They want playmates. The doctors along the way gave him more power by giving me diagnosis that they were unsure of, and couldn’t do anything about. The doctor who labelled me a hysterical woman and a malingerer gave him the most power over me. At times I thought I was crazy, but I knew I was terribly ill.
Lyme Disease slowly joined up with Isolation. Late Stage Nueroborreliosis and other co-infections created a thin veil between me and the rest of the world. I lost my brilliant mind, I lost my profession as a psychotherapist, I lost my ability to speak, I lost my concentration, I lost my athleticism, I lost the ability to drive. Over time the veil became a high thick wall. Isolation and Lyme got between my relationship with my friends, my family, my marriage, and most tragically of all my children. I gave up on seeing doctors, I gave up on life.
Once again, after two years went by, scarred my degeneration, I got up the strength and the courage to face doctors. I demanded the top experts in their field, and paid dearly for that. ALS, TIAs, Progressive Non-Fluent Aphasia. For which there is no treatment. The doctors left me to die a terrible death. They talked of palliative care. The walls closed on me even tighter, higher and thicker. Sobbing I went home to die. Planning my estate (what little I had), family planning, considering “self -deliverance.”
Six months later I had declined so severely. I saw a spark of light in my soul. I believe the angels directed me to go to that support group one Sunday. The support group was for Lyme. I barely made it from the car into the hospital cafeteria where the group meets. I sat shaking, lightheaded, alert. Isolation stayed behind, right outside of the door. For the first time, I had hope. I was surrounded by people who told my story. They had concerned look on their faces, and told me to go to a “Lyme literate” doctor right away. They said I had a very complicated case of Lyme. Go figure, I had been sick for 45 years.
That first appointment was surrounded by light. A very diminutive angel genius doctor had gone over my entire life medical history! The hope was bursting open. Isolation seemed like a long forgotten friend.
Eight months later Isolation was still by my side. The treatment is so heavy, and the disease is advancing. I can’t talk on the phone, I can’t talk in person. I can’t think fast enough to use assisting devices. People are still uncomfortable around me.
One year later I discovered a vibrant Lyme community online, blogging and Facebooking. My treatment is slowly starting to work, at least it has stemmed the tide of progression. Isolation still lives with me, but it is not a barnacle hanging on to me. I managed to travel across the US to join the Mayday2014 protest outside of the IDSA. My mother joined me, my aunt joined, my daughter joined me. I met so many friends from online, and new friends that are so lovely and courages and strong. When we are chronically severely ill, it takes a lot determination and luck to be able to come together physically. Such love, determination, spirit, and strength. The thick wall has turned into a veil again.
I wouldn’t wish Isolation on my worst enemy. It tries to reduce me to self annihilation. But the world and the angels seems to want me around. So many lives are lost with Lyme disease combined with Isolation. And tragically most of the people and children that lost their lives have not known that they had Lyme Disease. Even when we know we have Lyme Disease, sometimes it is too much; too much pain, losing our minds to dementia, no treatment, no support, Isolation, no hope in the future; and we choose to stop it. That is not my story, but for the Grace of God go I.
Isolation is not a strong enough word. I have had lyme for 40 yrs. no friends. Spend everyday alone in bed. I pray to die.
Isolation is a difficult factor, but It may not be the worst. As a guy, most of my friendships were based around shared activities. On one hand, it is sad to learn how shallow some of my relationships must have been, but I haven’t gone out of my way to explain my vulnerabilities. At the same time, people seem increasingly stressed, and I don’t think it is reasonable to expect others be there for the deep-real long haul. Still, it is a bit sad and ironic when in the past you’ve gone to lengths to be supportive of others.
Two months ago, I was really bullish because of carimune. I’d tenuously arranged to meet a favorite bro for a short walk. It wasn’t long, however, before I sensed a “shift in the force” and suggested we rest at a bench and take in the view. We talked there for nearly an hour. Fortunately, he did not need to carry me back to the car, but that possibility has prevented me from reaching out and faking I’m on an upswing.
When he was younger, I promised my son we’d river raft the Grand Canyon. This was the springboard for us to take increasingly longer rafting/camping trips. Two days ago, before he returned to college, I told him that even though I was bullish about improvement three months ago, I hadn’t made reservations for us to go rafting on account of the expense and not knowing how I’d be functioning. He nodded in understanding, but I don’t really expect him to fully understand. I’m not able to be the dad I’d hoped to be. I feel like the geriatric relatives my mom used to bring me to visit, except I’m 30 years younger. I’m embarrassed for him. He deserves better, and I’ve been looking forward to doing recreational things with him.
I’ve never been highly extroverted, and have been fine with a few close friends, but I’ve let go of that too. I guess I’ve sort of gotten used to being invisible.
Severe vertigo from the Lyme and confections has left me pretty much home bound. Thankfully, my husband works out of our home, so he is there to run errands, get groceries and take me to doctor appointments. I can no longer do the activities I once did…tennis, Bible studies, women’s groups, etc., so it has left me rather isolated.
we ended up isolated as our family, friends, and co-workers DON’T understand what each of us is going thru. they think, “it’s ALL IN YOUR HEAD” mentality. HOGWASH!
so we get involved in lyme/vector-borne online support groups and we have friends who don’t desert us; who love us UNCONDITIONALLY; who provide a shoulder to cry on; to cheer us on, and much more.
Yes, I am isolated but not lonely. I have my Lyme friends.
What everyone else says is true for me, too. Difficulty in making new connections locally (face to face) is how to explain why I might not show up, say something stupid I regret, not remember someone I met, seems as if I never bathed, etc w/o constantly talking about my health.
LONELY does not begin to cover my isolation. Friends & family drizzle away because we are not UP for them. Compassion comes from very few. Tremors, shakes, EMF issues, chronic fungal, replicating virals – all from BB bringing down immune system. Suicide considered so many times. Adrenal glands now ruined via Lyme & Co. Rx did not work for me. Did kill the BB via far infrared photon light therapy (Germany). Something that helped lately: Neurofeedback – got rid of my anxiety, tremors, some depression. Need more of it, but have to save $$ first. LENS software worked fab. Deb