I'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
It'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
Today I begin the process of bottling up tinctures and oils used to help with Lupus and Chronic Reflex Sympathetic Dystrophy. The tinctures help ease pain, decrease inflammation and strengthen my immune system.
Today I'll press out the lavender infusion and bottling that before I start on tinctures. The last thing I want is to cross contaminate lavender infusion with turmeric tincture. It's not a good mix. The Passion Flower tincture is the one that helps ease anxiety and aid in sleep.
The homeopathy care plan I have is a good one, but there are times when I don't take it even though I should and I can. I've always done this. Even though I am fully med compliant I hardly ever take extra meds, even when they're prescribed. I've been given a medication script to knock me out when my pain level reaches a nine. I've been told how to take this med but it's hardly ever done. I've been given medication to assist with anxiety attacks and assist with sleep but it is hardly ever taken. Why? Why do I continue to deny myself comfort or an easier course?
The timing of this crisis with my sister is one that has been brought to my attention more than once, but I reject the idea that I should see this upset as anything other than coincidence. She hates me, she's not going to manipulate a person she hates by saying she's going to kill herself. She's not reacting to the entries I wrote about letting her go. I reject the idea that she feels anything at all for me so that she would act out because I said I no longer hope in ghosts. People can say what they want, the timing of this is coincidental, but my stand is firm and decisive.
I sent her a letter to go under her door. Her apartment is the last place anyone saw her or heard from her. I sent the letter because I had to. How could I not? When I realized I could possibly contact her I sent a letter through a friend of a friend.
My every waking thought is her but that's not how it was two weeks ago. Two weeks ago I felt ready to walk away emotionally. I felt ready to move forward and let the past stay the way they created it. But today, she's all I think about. She's all I think about.
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.
i 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.
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."
There 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.
This entry sparking from a comment on the entry Managing My Raynaud’s Symptoms. The purple ribbon is a symbol for Lupus so I tend to refer kits and such as a purple kit or purple pack. Orange is the ribbon for Reflex Sympathetic Dystrophy.
For years I've been treated for chronic pain as well as the depression and despair that comes with a chronic illness. I may not have known the correct name of the chronic illness but I knew I needed a safety plan.
At the time my pain rises too high, the world stops right then and there and I go into safety mode because I run a real risk of killing myself. First off, my baseline is an eight. I can manage a level 8 without losing my mind but an 8.5 or higher puts my life at risk. I want to avoid that. I want to handle things before I reach that point.
Gradual Pain Increase
This pain is different and it's going to last for awhile and I know it. Immediately I'm angry because I'm about to hit a 9 and stay for a long time, hours to days. It's going to be a very long time. This safety plan is a bit different. For one thing, my attitude is different, I'm angry! I'm about to do this AGAIN! This is crap. I'm slamming stuff, just mad....but I realize I have to act faster than the pain level rises or I'm in real trouble.
I first locate the written safety plan print out which outlines what I need to get through this time. The list is altered a bit right here. It looks long but keep in mind this is primarily a check list, because most of these things are already in the same area.
- Get your purple pack out - hat, compression socks, arm compressions, wrist braces, neck brace, hat, small heating pads, aromatherapy items, etc
- Telephone - get the phone and the charger. You need to look at the numbers in the Purple category, these are the people you can call 24 hours a day when you're in this state.
- Start up heated blanket set to low with gradual heat increase. The blanket automatically goes off after 10 hours.
- Locate smaller pillows to help elevate pressure point pain.
- Get drinking water and get hot tea in your spill proof cups.
- Pull the small trash can over.
- Tablet - get tablet with charger and readily available music videos and movies
- Locate your sand bag which goes over your legs to decrease pain.
- Grabber - get the grabber, you're gonna drop something and it's gonna roll.
- Art supplies - these supplies are smaller but work well for my bed desk.