V.J.’s Weekly Challenge #57: Presence

“Isolation threatens to consume me,” I tell my therapist in a recent visit. “I’m not willing to disappear into the woodwork again.”

The doctors say my illness is relapsing; it’s how they explain the onslaught of infections. I’ve just finished another round of even stronger antibiotics. While my immune system fights invasion, I am staving off depression.

“You have a greater presence in the world than most able-bodied,” she suggests. “Between your blogs, Twitter, and your artistic endeavours, I’d say you are doing quite well.”

It’s true that my online presence is alive and well, and I am grateful for that.

Odd, isn’t it, how life turns out, I think to myself on the drive home. I have a presence, and yet, I am invisible. The connection I have with others is intellectual, at times, emotional, and even spiritual, but seldom physical.

Ah, life’s riddles.

This week, please join me in contemplating ‘presence’.

It’s easy to participate – just create a post on the topic on your own site and link it up to this one.

Look forward to your responses.

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Permission to write, paint, and imagine are the gifts I gave myself when chronic illness hit - a fair exchange: being for doing. Relevance is an attitude. Humour essential.

43 thoughts on “V.J.’s Weekly Challenge #57: Presence

  1. Reblogged this on Cee's Photo Challenges and commented:
    This is for all of us with Chronic Illnesses. I know there are number of people who have them and we somehow meet and feel not so alone in the world of blogging. Both V.J. and I struggle with feeling isolated and alone. V.J. this morning spoke of it. That takes a lot of courage and strength.

    Liked by 3 people

  2. I struggle with the same thing. I have a wonderful on line presence much like you do, but the isolation and agony of lack of physical friends and interactivity is daunting and haunting at times. You struck a cord that I feel a lot. I’m so glad you had the courage to say it outloud.

    Liked by 3 people

    1. Ohhhhhh. V.J. And Cee, thank you so much for having the courage to talk about this!! I also have a chronic illness and know all the struggles you both mention. I have a Primary Immune Deficiency and need to be tied to an IV for most of the day once every 3 weeks for treatment. (V.J. You’re constant infections and needing stronger and stronger antibiotics makes me wonder if you have a PID. Have you been tested?) I also have a cluster of other conditions. All of which are pretty well managed…….. until they’re not. Which is where I have been for the last week. Just at the doctor’s for further treatment for a migraine that’s lasted over a week. I haven’t been able to get anything done and I’ve been forgetting important things. It’s driving me crazy. Thank you for these posts today. I needed to know that there are others out there. 💕

      Liked by 2 people

      1. Hannah, nice to meet you, and sorry it’s under these circumstances. This struggle with infections is new for me. I am meeting with a new doctor at the end of the month- hoping there will be some answers. Glad to know I am not alone – that someone else understands.

        Liked by 1 person

      2. Is he an immunologist?
        If not, and he doesn’t have any definitive answers, ask for a referral to an immunologist. After 2 years of getting sicker and sicker, I FINALLY saw an immunologist. By then my body has started to shut down – I was in the beginning stages of dying. After 2 years of doctors scratching their heads, the immunologist had me diagnosed in literally 15 minutes. She saved my life. It is a very simple blood test to run your immunoglobulin levels. The critical one will be your IGg level – that’s the gamma globulin level. Mine was critically low, and those are the infusions that I get every 3 weeks. 9 years ago I stated my blog specifically for those of us with critical “invisible” diseases. I’m a lot healthier now, and the blog has morphed into a mostly photography blog, but I still occasionally blog about having a life threatening (but treatable) disease. Good luck with your new doctor and insist on an immunologist if you have to. Please let me know how it works out.

        Liked by 1 person

      3. Thanks! I find that having the diagnosis of Myalgic Encephalomyelitis, most doctors just listen to my complaints and dismiss them. One recently said: “There is nothing here that acts like a red flag – all your symptoms are listed and normal.” Argh!

        Liked by 1 person

      4. Yeah, that was the case for me for years. I was diagnosed before the more accurate name of Myalgic Encephalomyelitis was used. My diagnosis 20+ years ago was fibromyalgia. That was after several doctors telling me fibromyalgia wasn’t a real diagnosis and it was all in my head. Finally the American Academy of Rheumatologists made it an official diagnosis. The thing that started my body on the path of dying, though was the immune deficiency. Not to confuse the two.

        Now, I have some questions for you in terms of the ME. There are some treatments for it, but it doesn’t sound as if you are getting any help with the pain.

        First, what country are you living in? I am only familiar with treatment here in the States, and more specifically, the treatment Kaiser offers in both Northern and Southern California.
        I receive anesthetic injections in my trigger points once every 6 weeks. For me, that means injections in my neck, shoulders and upper back. They have been a game changer. In Southern California Kaiser those injections were handled by my rheumatologist, but up here in Northern California, they are done by an anesthesiologist who specializes in those injections. I of course needed referrals from my primary care physician, but within Kaiser that’s not a problem. ie, it doesn’t have to be adjudicated by a board of physicians.

        3 other game changers I have found are absolute free and you can do on your own.
        *The heating pad is my best friend. I always end the day using it on my back, and on really bad days, I work from a sitting position with the heating pad almost all day. Being retired has it’s advantages
        * Stay hydrated. With water. A cup of coffee or tea in the morning is fine, but don’t stay on them all day. They actually dehydrate you. Over the course of a day I drink *at least* a liter of water. Sip it throughout the day. If you leave it until evening you’ll be up all night.
        *WALK. That may seem counterintuitive. Or go to yoga class, or do yoga on your own. Or any sort of gentle stretching exercise. But the more stationary you are because of the pain, the worse the pain will be. I had to start walking really small amounts and gradually built up. I can now walk between 1-2 miles. It’s easier for me because I have a dog and now live in an apartment, so the only way she has to go potty is to be taken for walks. Some days I only walk half a mile. Others, longer. But unless I have an active severe infection, I’m out every day. At first it will seem like you’re not getting anywhere, but unless you have other health conditions that prohibit or constrain gentle exercise, then starting a daily practice will pay off.

        Please note that I am NOT a doctor and this is not a substitute for consulting a physician. The advice I offer is strictly from my own experience of 20+ years.

        I hope this information helps, V.J. Please let me know how things progress. I’m hoping this information at least gives you a start in finding whatever treatment might work for you.

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      5. Thanks Hannah. I was actually diagnosed with fibromyalgia in 2010 and manage the pain with diet, acupuncture, and yoga. The ME diagnosis came in 2014. I was a teacher, and found I would lose my voice during first class, and had difficulty standing or sitting. Long story, many tests, and finally a diagnosis by elimination. In Canada, at least with my doctors, there is no treatment. The ongoing infections and recent diagnosis of a secondary (or is that third) condition is recent. So it has been a few years for me too. I appreciate your care and concern. Keep pushing on.

        Like

      1. We with what I call the invisible illnesses it’s real easy to get lost and hideaway. Because we are unable to sustain friendship, due to being to tire and sick, it is far to easy to hide away. People get tired of waiting for us to be healthy enough to do things with them. I still suffer from low energy just due to my body being sick for 30+ years.

        Liked by 2 people

      2. It’s so true Cee. In the early years, I was bedridden and could not tolerate even conversations on the phone let alone in person. A few friends would come and lie on the bed with me, bring tea, and that was wonderful. It surprised me that some coldly said – call me when you can go out again. Of course, I did not. Even though I can out now from time to time, I find I have social anxiety. I feel constantly on the outside. Sorry to hear you have suffered for so long.

        Liked by 2 people

  3. I can relate to what you say about isolation. However, meeting people with similar mindsets online is better than the not-so-pleasnt F2F interactions.

    Liked by 1 person

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