Chronic Pain

Content: Physical pain. Physical torture as a child. Mother and uncle standing in the doorway. Being watched as I shower. Reassuring myself that I'm safe. Robert's session.

When my pain level gets really high I get confused about why I'm in pain. When my eye lids hurt, when it hurts to talk, when I struggle to breathe I forget it Lupus or CRSD. I forget I have a medical condition and feel trapped in the past. Yesterday I lay in bed, just on the sheet, the fan was blowing over me. I had my face buried in the pillow when I became flushed with dread. I expected to look at the door and see my mother standing there. I fully expected her face to become clearer, for her to fill the doorway. I pulled the covers over me and felt more protected. I had to tell myself she can't ever again stand in my doorway. I slept with uneasiness and woke feeling bogged down.

Dr. D asked the question: Can your mother come to your house and get in?
Me: No.
Dr. D:  Can she get in and stand in your doorway?
Me. No.
Dr. D. Can she ever hurt you again?
Me: No.

It's what she left me with that haunts me. I feel her hand from the grave touch my skin and make it crawl. I see her in my head but I try to talk to myself and remind myself that I truly am safe. As far as living family members, as long as I have a cat, no one is coming here.

This spring I was to decide if I could manage a dog which would help me sleep better but I am not able, sadly, I am not able.  ...continue reading

Relax and SketchI'm battling my mind and body.
I've had sporadic periods where pain has knocked me off my feet. Funny thing is, at the time I remember thinking to myself, I understand suicide. That thought would be strange if it wasn't for my brother's death being fresh on my mind. The lack of information concerning my sister weights heavily. It is also true that there are times I think I can't take another second of pain and that I'd rather be dead. Dr. D has noticed some PTSD issues associated with my chronic illness. I feel validated by that. This is traumatic. It's like my private civil war where I die every single time. There are times, like yesterday when I thought to myself, I understand suicide.  ...continue reading

hanging incense holderIt's cold. I'm aching. This Lupus moment has been brought to you by Samsung Smartphone's, where overheating batteries double as cordless heating pads.

After reading in bed, I realized my phone was warm. I cupped it then held it to my face relishing the warmth, then I remembered that my smartphone is a Samsung and this bad boy will explode. Time to turn on the real heating pad, the one dressed in cotton cloth with yellow roses. The fabric may have yellow roses on it but it still smells of lavender. The rest of the room hints sandalwood and sage. I get my sandalwood incense from Ebay once a year for little of nothing. ...continue reading

5:08 pm EST
I'm lost in this, trying to get out of my skin. This hurts so bad and I'm scared. I hate this!!
Father!

I've been hitting 9's since Sunday. It's not immediate, it's a gradual rise as I move around, as the air hits me or I move my head and my hair moves across my back. My eyes close and it hurts, my fingers move across the keyboard and it hurts. I hurt, everywhere.

The last few days I've tried to distract myself online and around the house. I've even tried to ignore the pain but today is a day where I say enough, it's pain med time. I'm going to try to make myself comfortable and see if I can get some sleep. I'd rather not stay awake during this, not if I don't have to. But I don't want to go to sleep. I want my muscles to stop spasming so hard in my shoulders. I want to get things done, and I'm hungry.

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It's a devilish night to feel the pain of being whipped forward and back. I knew I'd feel this later. We're having thunderstorms. Monday around 12:30 pm my cab was rear ended by a small sedan.  The same day I took a short walk and in my therapists office when my pain rose high, I did some stretches to try to ease it a bit.

It's time for my Purple Pack and more sleep. Mary Jane has stolen my spot on the bed and is taking advantage of the heated blanket.

Faith

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The most common lie I'm fine - Google Image

February is Suicide Awareness month.

People ask all the time, "How are you?" I say, I'm trying to manage. No hugs are shared. At that time I may not be in so much pain I can't be touched but I still decline a hug. the truth is, i'm not okay. hardly ever am i okay.

as i write this i do so with my eyes closed so as not to see the words and judge them harshly before i can finish my sentence. i'm just letting it go, nothing to stop me, not even myself. at the end i'll correct spelling and that's all.

i was told that February is suicide awareness month. how strange to think of my existence in the last few months boiling into February with pain i didn't think i'd live through. i honestly didn't think my body was able to live through it, and if it did would i actually have the ...the whatever, to lift myself of the bed and go back to life as usual? this isn't usual, nor is it survivable. it feels as though it chips away at me, like i'm being eaten alive by fire ants. i'm watching them chew on nerve endings and there's nothing i can do about it. that's the easy part of this disease and its progression. the hard part is when the pain calms down and i look back at torn flesh and know i'm going to do it again and again and again. no, i'm not ok. i'm not ok at all.

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Sanity: My Face My Art - Copyright Sundrip Journals All Rights Reservedi feel so broken, exhausted, shredded. i need a mental vacation, somewhere out of my body and its inferno. that thought plagues me, i have to escape this.

they say when a person says they want to commit suicide that it's a cry for help, that they don't really want to die. that's true. i cried as loudly as possible. i'm not okay. help me. i'm not okay.

February is nearly over and i'm still here. i nearly didn't survive it. had it not been for answers to my calls for help i may not have been here to look people in the face and say, i'm fine.

what a ride this has been in a body with no armor traversing through emotional warfare. the disease let my body live but left my mind to rot. (eyes open at this point)

i took the diagnosis of CRSD very hard. i'd never heard of it. it made sense to me once it was explained. but i promised myself i wouldn't look up information on it. i promised i wouldn't study it because i want to be able to give the doctor a report from me and be able to say 100%, this is from me. I didn't read it somewhere. I'm paranoid about not being believed.

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I found an article about CRSD and how it affects people emotionally and socially. Although it's hard to hear it called "the suicide disease" I understand why because I'm sitting in that very spot as we speak.

Excerpts from : What It's Like Living With Complex Regional Pain Syndrome, the 'Suicide Disease'

"Complex regional pain syndrome (CRPS), also known as reflex sympathetic dystrophy (RSD) is one of the most painful disorders known to man. On the McGill University Pain Scale, CRPS/RSD ranks 42 out of 50. To put this level of pain in perspective for you, that ranks higher than both childbirth and amputation."

CRSD can disfigure youThere are times when it would feel better if the limb that's in pain and on fire was amputated. I just want the paint to stop. It takes over my head and I start to get desperate and once I'm desperate then I'm irrational and willing to take risks. This is one of the reasons people with Chronic Illness have to be concerned with addiction. We want the pain to stop. There are times when a patient may give their pain meds a boost because they can't stand the pain anymore. This boost comes in several forms, either adding alcohol to the meds or taking more than prescribed. Although I understand why it happens, I also understand that it's a dangerous road to travel.

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Reminder: Faith, you understand you can't cure yourself, but you, without a doubt, know how to take care of yourself. You can be proud of that fact.

When a person is so frightened of something they may stop thinking, panic and make decisions that aren't appropriate for the situation. Being so afraid of pain that you stop thinking can lead to longer pain. I am afraid, more than I can say, I'm afraid, but I've got my plan and I'm sticking to it.

Yesterday evening, not sure what time, my pain level started inching from the baseline 8 to a level 9. I can't do a 9 and keep myself sane so I started to prepare for a long night. The first thing I did was put on the mix of Juniper essential oil, Rosemary essential oil and Lavender infusion. I went and got some complex carbs and backed it up with sugar; 2 pre-cut apple slices dipped in cashew butter with a dab of honey. I could feel my pain level drop within ten minutes of all this but that doesn't mean anything, it could spike again.

After about 20 min and my pain level was at baseline I decided to do a foot bath of Espon Salt, baking soda and lavender infusion. I tossed in some fresh lavender, too. :-). Loved it.

Despite using Passion Flower for anxiety I've still struggled with it to the point that anxiety feels like it's replaced my blood. All I've got running through my veins is anxiety. I have to remember that the steroid treatment will cause increased anxiety for me. I have the tools to ease that anxiety and I need to remember to take them. This is where falling into fear can get me in trouble. Freaking out means I don't do anything but curl up in bed when there are steps I can take to help with some of the symptoms. Passion Flower tincture, candles, Klonapin, aromatherapy, heat therapy, weighted blanket, teas, on and on. These tools help me through bad times but they don't cure it.

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I can be touched. Heck, I can't go out in public hardly without someone touching me. A woman ran her hands through my hair at the store one time. She wasn't knocked out. A guy came up and pat me on the arm to ask a question. He wasn't knocked out. Strangers touch me quite often and no one has been knocked out. Clearly, just being touched doesn't make me want to body slam someone.

Since I am sometimes physically unstable and fall, I talked to Dr. D about what to do if I fall in his office. Don't touch me. Nope, Dr. D should never, ever touch me! Not ever! I've seen him for over 10 years but touch is not an option for him.

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