Welcome to Redefining Myself!

My inward journey to living a mindful and quality life

while living with NP-SLE, RRMS and CIDP

and their overlapping accessories.

Slapping the face of many things demyelinating.

Friday, September 30, 2011

Two Types of Fatigue in Demyelinating Disease:

In demyelinating (neurological) diseases, there are two types of fatigue: primary and secondary.

Primary fatigue is thought to be caused by the disease process itself and is caused by the demyelination in the central nervous system. The slowing of messages from the brain and spinal cord and a buildup of muscle weakness combined, can be a cause of primary fatigue.

Secondary fatigue is not directly caused by the disease itself; but occurs when the body tries to compensate for the symptoms caused by the illness. For example, sleep disturbance can be common due to spasms, pain or bladder problems. This will contribute to illness related fatigue. Side effects from medications, stress, depression and other symptoms can all cause secondary fatigue.

*To date, Fibromyalgia and chronic fatigue syndrome/ME are not classified as degenerative demyelinating neurological diseases; nor do either show clinical evidence of demyelination. 

Tuesday, September 27, 2011

Elevating my Adversities

It's been real challenging and bumpy ride with this current flare. It all started out with a mild increase with my neuro symptoms, evil headaches, fevers, and I had no strength to raise my right arm above shoulder level. My right hand swelled so badly that my knuckles disappeared and no range of motion accompanied by pissed off achy pain. Sidebar: this is the first evidence of arthritis in my body since I began CellCept ® eleven months ago. 

I had been given three IV infusions of solu-medrol September 7 through 9th. I had relief for 4 days and then I had a break through/ rebound affect with the flare and required an oral taper - which I'm still on- and has helped some but I'm still not out of the forest of the systemic inflammatory bitch. She keeps rearing back up at me and well, I'm rather pissed off about it all.

I had a seizure over this weekend and had bit the inside of my cheek so badly. The wound swelled so painfully (along with a lovely case of thrush mouth - ahh so lovely) that I couldn't eat solid food. I got out my flashlight (my lupie flashlight to look at mouth and nose ulcers) and looked at the inside of my cheek, yep, there it was! A nice and infected pissed off pussy wound. In a few moments of feeling sorry for myself and playing with dramatic thinking, I had visions of my mouth becoming so infected from the bite wound that my cheek had to be removed. I fancied myself looking like Ahkmad the Dead Terrorist, with half a face. Deciding to bypass a horror movie in my mouth, I have been rinsing several times daily with hydrogen-peroxide and water to fend off   bacteria.  As another safety measure, I've resorted to freaking sleeping with wads of paper towels rolled into small tubes (maybe tampons would work better??) inside my mouth a night to not re-injure/break open the festering cheek wound. Maybe I need to buy a sports mouth piece to wear to bed a night? I wonder if they come in orange? 

My truncal ataxia is off the hook- seated or standing- I'm swaying like a drunk. Nerve pain in legs & feet that makes me wanna punch someone in the face. Ambulating poorly. My entire body is vibrating like a tuning fork. Vertigo seated or standing. Arm strength a wee bit better.

Along with flares comes the very unpleasant and futile thinking that seemingly surfaces when I'm feeling rather rough. Why is it that when I'm physically toasted my mind drifts into such hopeless thinking? The negative and depressive thinking is made worse by my organic brain disease. They ping pong off of one another. Ironically,  (and because my life journey is full of synchronicity and coincidental situations, as little spiritual billboard reminders of things that I need to be reminded of; because I have a great tendency to forget things when I'm in the company of the darkness of depression) was recently discussing this very matter with another neuro-psychiatric lupus patient. When a person has an organic brain disease it does distort your thinking and problem solving skills. That the very neurons in our brains are under assault and that we are neuro-psychiatrically challenged compared to the 'normie' (AKA shinny healthy "happy people holding hands") population.

 So, as things would roll, (and boy do they role with me!) I've been doing a lot of sleeping and laying down due to the leg weakness and fatigue from the flare. Laying about I'll get to thinking about how pathetic my situation is, and how pathetic I am. How being on disability has me living in sheer poverty, which sucks and stresses me out to the nines. That my illness is taking things from my daughter, preventing me from doing things with her, prevents me from actively participating in life! It can get rather dark and futile between my ears. Yet, when I reach out to a friend and admit to my thoughts and feelings, it always reduces the hopeless abyss. So long as I am not isolating and reaching out to my support network my mental health and quality of life will always benefit. 

I try to practice being aware of the negative thoughts, ask the God of my understanding to remove them and turn my attention to things that need my attention just for that day or that hour - trying not to future trip or project hopeless thoughts. My negative thinking is more challenging than being physically disabled and living with a chronic neurological degenerative disease!! The biggest battle that I face is right between my own ears!

Okay, so back to the spiritual billboard synchronicity events. I recently learned that a friend of mine had a second heart attack and received three coronary stints a few weeks back. He continued to feel worse which prompted him to the emergency room and had an xray that revealed a tumor in his lung. Another series of scans revealed a mass on his liver and one on his thyroid. The docs cannot biopsy him until the stints heal so now he has to wait. He's got a huge plate of health whoop ass on him. But see, I am only able to support him emotionally through this because of my experiences. My pathetic condition does get vindicated every time I participate in the simple act of supporting another person in their effort for a quality life while living with a catastrophic condition. The simple acts of acknowledging anothers challenges and offering a supportive hand liberates me right between my ears. 

I do know from my life experiences ( not some fancied philosophical ideal or pop psychology book ) that the broken places within my spirit do get made stronger each time I connect with another human who's also feeling weary and broken. That a mutual healing takes place, that a therapeutic event occurs within each of us. It's the one thing that elevates and gives purpose to an otherwise hopeless situation.
Keep the Light Going!