chronic illness, mental health, Self-Esteem

Trying to find hope and usefulness in the dark

Having a Chronic Illness, especially one with never-ending pain is no fun. I usually always phrase things with “you.” But I think I will try to phrase this particular posting with “I.” I had always assumed (bad, I know) that there is someone, at least one soul, out there feeling the same way. Today I am feeling alone. I was doing as well as I possibly could. I had done some laundry and dishes. I begun sorting and cleaning the horribly cluttered dressing room. I did have to cancel my PT/aquatherapy and eye doctor appointments, however. I have been very dizzy and disoriented and I don’t feel driving would be a very good idea when I’m off-balance. I did go with my husband to his haircut appointment and we got a few groceries. So I got out. I even listened to some of the Hay House Summit this morning and Dawson Church speaking on emotional pain and the sub-concious. I managed to be able to be stable enough to paint my toenails. Something I haven’t felt like doing in months. I did have some flaring of the CRPS in the grocery store and my big toe was in intense pain and I almost collapsed twice, but had the cart to hold me up. Maybe this is where those deep, dark thoughts started to intrude again.

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The feelings of being useless came back. I used to be so reliable….like super-reliable. Like….”Never let anyone down” reliable. “You can always count on me” reliable. Now it seems I can’t plan even a day ahead, let alone a week. My one job, which was about 35 miles away, would call me during the blizzards to come in because the people that lived with in a few miles of the hospital couldn’t make it. So I’d dart out of bed, get ready, grab my stethescope, my nerdy veterinary nurse pocket supply and “nerd book” and go. Now, some days, it’s a wonder I even get out of bed. Although lately, since the weather changed in Pennsylvania, it is ALOT better.

We went camping over the weekend. We went to a Faerie Festival/May Day/Celebration of Spring-thing. I was already in a flare and had incredible trouble packing everything. Since my husband works third shift, I elected myself to allow him to sleep, while I pack EVERYTHING for me, Simon, sometimes my husband, and pretty much a nuclear bomb. I had alot of trouble lifting things this time. Not only do I have Fibromyalgia, and CRPS of the right lower limb, but my joints aren’t the greatest. They are very lax and very over-extended. My left shoulder was repaired in  Feb. 2014 and was basically tied in permanently. The right one was supposed to be done in Sept. 2016, but along came a malignant adrenal tumor that needed to be taken out. So it got put off again, being that it is basically an elective surgery, albeit for better functioning and less pain. Then came the reappearance and ever-worsening of foot problems and those procedures and the foot surgery about 6 months ago. So here I am with the right shoulder still popping out of the socket, although not nearly as bad as the left one was. These hyper-mobile joints were great for being a contortionist in dance class and ballet, especially in my solos and primary roles in the dance revues. But now, being over 40, I am tired, and in pain. And I’d give anything to be back in dance class a few nights a week dancing away and feeling the music moving me.

So that being said, lifting didn’t go very well. I can lift very heavy things and move them, as long as I don’t have to really engage my shoulders into moving my arms away from my body. Sometimes even putting the plates away in the cupboard above the stove is painful and causes my shoulder to pop out. There were times I’d lift things up and my left shoulder would pop out and kind of roll down and I’d have to use my right hand to put it back in it’s place. That’s how badly torn things were. But now it’s tied in, like I said, and alot more stable, at least.

The Faerie Festival was very festive and happy. I had trouble navigating the uneven terrain and pebbly walkways. Let me tell you, I NEVER thought I’d be “here” in this place of constant pain 20+ years ago when I was hiking constantly, exercising like a maniac 7 days a week, plus dancing, and working. The music at the festival was awesome. We got to see two belly dancers. I really miss doing that. I keep thinking, “just give it another day,” “another week,” “next year,” “next Dance Revue,” “next Nutcracker.” I keep thinking one day I will wake up and not feel like crap. I do wake up happy, it’s not that. It’s nice to hear the birdsong again. We didn’t have too many morning birds here. Although sometimes Mr. Cardinal starts his song in our one tree at 5AM. But it would just be nice to be able to get up, like I used to, and start with going to a hot yoga class, or something.

It seems like so much has slipped away in the past few years. I don’t know how to get that back. Unfortunately, the 4-5 nerves that were cut in the first two surgeries, will never be back. Nor will the removed rotated and broken sesmoid bone be back. And now that my big toe joint capsule is almost completely closed, I’m not sure where that leaves me. Also looking into when to have surgery #3 for the Tarsal Tunnel Syndrome to release the Abductor &/or Adductor Hallis to alleviate the crushed nerve in the arch of my foot, has been on my mind. Not to mention the surgery for the Dorsal Root Ganglion spinal cord stimulator and the next Sympathetic Trunk Nerve Block.

Throughout all these things, I keep thinking I have to be doing something. Like working. I’ve tried to work, many times, and I keep having to give it up because of my symptoms. This is where I feel useless. I can’t seem to find a place where I fit in, with all of my baggage, and be able to do a good job, at my own pace. I feel I have failed so many places and friends. I’m not sure if you, who are reading this, have a chronic illness that has interfered with your job. I’m not sure if it has robbed you of who you used to be. Even though I am still accepting living with chronic debilitating pain on a daily basis, I still strive to do what I can for people. It hasn’t gone very well.

Don’t get me wrong, I am doing what I can. I stay as active as I can, with the circumstances of my painful body. I not only seek medical treatment, but I do Holistic as much as I can afford. I also treat alot of my problems nutritionally with a healthy plant-based diet and whole food, herbal, spice, amino acids, and other supplements. My big thing since December, and why I started this blog, was because of Hempworx CBD oil. I haven’t really devoted any posts to that. And I really should, considering I’m an affiliate for it. It has helped tremendously with alot of health aspects, and I can’t imagine what I would be like without it. Unfortunately, having these chronic debilitating diseases is very expensive. And not being able to work takes a toll. I am fortunate that I have my husband, who will help out, if necessary. But because of my horrible first marriage debt, we have never combined our finances. This has been a big hit to me because I was the primary bread-winner in my first marriage. And now I am legally labeled as low-income/poor.

In that hour-long talk this morning with Dawson Church, he was touching on that so many people expect something external to provide them with happiness. I do realized I have to create happiness for myself. And that was what the hiking and dancing were about. They made me happy. Being a veterinary nurse made me happy, in that I could help heal the hurt of the animal patients I saw and attended to.  These brought me great joy. Seeing my patients and clients happy made me feel good. Seeing the audience and hearing them clap made me happy. Being out in the depths of the woods made me happy. I keep hoping that I can get back to that again.

Maybe someday I will.

Thanks for reading. Take care. Be as well as possible. And until next time…

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3 thoughts on “Trying to find hope and usefulness in the dark”

  1. We have to remember that even though we are Wonder Women, we can’t do it all. For me, I had a mini breakdown and lost my shit, screaming I need help, I can’t do everything. My body just shuts down. You need a support system. You have my number. I never do anything. Call me whenever you need, even if it is to bitch, moan etc. My heart breaks for you, but, please know that you are never alone, even if you feel like it. You are loved.

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  2. I’m in the same place as you BD. I grieve for the loss of my former self. Today I got disappointing news. My spine surgeon told me he doesn’t think the spinal implant will help me because of my Fibromyalgia, Osteoarthritis, and Bursitis. So I guess I am just screwed😢 I am in pain EVERY day and sometimes can’t even walk. Even the MMJ isn’t helping. I think I will be looking for a jazzy so we can go on our vacations – we were so looking forward to traveling after retirement. I try to hold it together but I get very angry 😡

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