Relapse Morning of Monday, August 3rd

Relapse info


On the morning of Monday, August 3rd when I woke up to begin my work-from-bed job on my laptop, I discovered I was relapsing with my ME/CFS.

I couldn’t get to the kitchen or bathroom at all at first. My legs wouldn’t work. My body felt like I had been in a bad car wreck or fallen down a long flight of stairs, from head to toe. I could feel “injuries” on my neck, back, legs and feet. My legs were the worst (usually my arms and neck are the worst). My calves were totally locked up and my knees had huge swelling and red/purple bruises covering them. Perhaps Tonya Harding’s cronies had taken a club to me while I slept.

When I managed to walk that day I used my cane and hobbled slowly with weird backward reverb of my upper body each time I took a step. I…

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Relapse Rollercoaster


On Saturday, July 4th I woke up feeling like my life was turned upside down compared to the functionality of the last 8 months. It took me until 7pm to manage my symptoms well enough to go sit in a lawn to watch fireworks. The next day, Sunday, July 5th was worse. I was shaking life a leaf in church and declined rapidly afterward. Whole body muscle spasms, extreme weakness, moments of neurological paralysis, so much pain, lack of postural control…always hard for me to describe it through brain fog when it was 10 days ago. The day after, Monday July 6th I was terrified at work because I could not work. I had to tell my boss I could only do a little work here and there, which is devastating to me because for the past 8 years I’ve never been able to keep a job. But this one…

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Declining on a roller coaster


Hard to believe my last entry was only written 18 days ago. But M.E./CFS can rapidly decline in a few hours so it’s no surprise. I feel like I’m losing control of my body and life. I am. When I saw my mom Thursday she said I seemed drunk (she knows I’m not – she’s just saying it seemed like it). I couldn’t hear what she was saying, I couldn’t reply to her, I was dropping things, I was a zombie, etc. I had been feeling improved on LDN (low-dose naltrexone, a neuroimmune disease medicine) and now I am slipping into a sort of relapse. Just now I wondered if maybe I made myself sick by trying to ice skate again (skating was my childhood hobby). I was trying to enjoy as much of life as I could and maybe I should have just rested and enjoyed being able to…

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New Life, High Hopes


I’ll attempt to write a diary entry about my illness. I used to be a wonderful writer and in fact it was one of the things I loved the most. My brain broke when I got sick in 2007. The concentration it takes makes me more ill when I attempt it and what comes out on the page is not nearly as well written as it would have been prior to 2007.

So, life has been quite nice lately. I met 3 other girls on the Myalgic Encephalomyelitis Global support group on Facebook. Lindsey posted what if we did an ice bucket type challenge. Nicola said she’d already thought of the Chilli ME Challenge with her husband. I really wanted to make it happen with them and Catherine jumped on board too. So the four of us formed a friendship and dove into this thing unequipped and ignoring what others…

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LDN Changed My Life (Low-Dose Naltrexone)

I am taking the time out (of my fatigue and excessive sleep schedule lol) to make a post about my wonderful news. I’ve been enjoying a little taste of normalcy. I was actually able to go for a walk and rollerblade this week!!! That is huge news!!! I even ice skated for a few minutes last week. Amazing!!! Why, you ask??? Because of LDN (Low-Dose Naltrexone). If you have an autoimmune disease, neurological disease, multiple sclerosis, fibromyalgia, myalgic encephalomyelitis, chronic fatigue syndrome, etc. — do whatever you can to get your hands on some LDN. I ordered mine on the internet from the U.K. and will soon do a phone consultation with a specialist doctor from another state to get a prescription for it. I’ll post an article about it later, because I’m pretty tired right now, as usual. But it’s not quite as severe on LDN. I need to post about the wonders of this drug later!!! I’ve posted before about it on my Facebook page for my blog. You have no idea how thankful I am that something finally helped me somewhat. NO IDEA. There is no treatment for my disease and it’s disabling. I have dreams that I could be sort of normal…

Updates about me: Spoons for Austin

Latest post to my other blog, The Diary of an Ill Girl.


Extra/flare symptoms at this moment include: Fever, whole body is hot to touch (if you’re sitting next to me I feel like a furnace), a feeling I can only describe as my brain feels on fire &swollen like meningitis (Lol), hot face/facial flushing, hot and sore throat, swollen lymph nodes, headache, falling asleep, mental &physical exhaustion, dizzy; sudden inability to tolerate looking at busy patterns, lights, moving things; feeling extra braindead/dumb, sinus pain &sniffles, bladder discomfort, butterfly facial rash, and arm rash.. And of course my other usual everyday aches and pains.. My immune system is having an M.E./CFIDS flare. Seems to be post-exertional from my trip to Austin over the weekend. I’m sure some people saw my trip posts on FB and thought, “There’s no way she’s as sick as she says she is.” But what happens with people who have an illness like mine is that we pay…

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