A World Between Tables

My name is not important, but what is however is the fact that i have been diagnosed with something called Myalgic Encephalomyelitis (ME for short) and intend to write about it. It hasn't been an easy 7 or so years of misery that ME has brought me and i intend to tell you my story, right here, right now. It has to be written. No longer will i stay silent. No longer. Like the title refers to - being sick in ME and the like with todays healthcare is a world between tables.

Monday, October 15, 2007

15% never tasted so bad

Just wanted to let you all know i just received a 85% dark chocolate bar and let me tell you, stick with the 70% GREEN & BLACK'S ORGANIC as this 85% one tastes like crap. To put it mildly. The fact that they only had it in "Extra bitter" might have something to do with it...

I doubt that 15% could make that much of a difference and even if it does, just eat more of the 70% one then.

Yuck.

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My symptoms

Chronically dry eyes
Concentration difficulties
Constant above average body temperature between 99,5-101,3 degrees Fahrenheit (depending on the amount of physical strain)
Decreased saliva production followed by dry mouth
Difficulty falling asleep (i have reacted badly to sleeping pills ergo none in my medication)
Extreme headache originating from shoulders/behind ears (radiating up to behind eyes)
Extremely acute to lesser warm temperatures and will catch a cold very easily with an incredibly short incubation period
Heavily deteriorated simultaneous capacity
Heavily increased thirst followed by increased water intake and urinating. I have the feeling of the water intake just passing through my system without being properly absorbed by the body to the extent it should. Skin feels dry
Hyperacusia (abnormal acuteness of hearing, increased irritability and intolerance for ordinary sound levels)
I almost passed away in a severe herpes outbreak when 2 years old. Now get oral herpes whenever i have a cold.
Moderate joint pain
Noticeable deterioration in short-term memory
Photophobia (sensitivity to light)
Scratching of the skin induces a red itching rash-like area where the pattern of the nails or object that made contact with the skin is slightly raised. I have found this to be especially true over the larger muscle groups and the reaction usually lasts up to 15 minutes at the very least
Severe deterioration of elasticity of skin followed by large stretchmarks over many areas of the body
Severe eye sight deterioration
Swollen lymph glands under the jaw and chin
The feeling of facial swollenness followed by extreme tactile defensiveness when headache peaks. Large pain trigger points surrounding cheekbones and nose (pain radiates up to behind eyes)
Tinnitus (much stronger in the right ear then the left)
Together with the constant fever there is a strong likeness to having an exceptionally bad case of the flu in the way i constantly feel physically
When physically straining the body this "flu" sensation increases heavily as well as a large number of the additional symptoms like the fever, swollen glands, the "rashes" (in this situation without skin contact and now appearing over the chest area) to name a few

Treatment/Medication

"Echinagard" (Red Sun Hat rich immune support nature drug at the first sign of a cold breakout - up to seven suck-on pills the first day of intake with at least an hour in between)
1% Methylcellulose eye drops (one to two drops when in need)
Ascorbic acid/Vitamin C (1 g - one pill daily for many things including healthy cell development, proper calcium absorption, normal tissue growth and repair, healthy gums and for general immune system purposes amongst others)
Calcium and vitamin D3 chewing pills (500 mg Calcium & 400 IE vitamin D3 per pill - one pill daily for bone strenght amongst other things)
Daily bed bound exercise of legs, arms, back and body in general using a self-developed system and exercise time-schedule suiting both my body's shortcomings due to my unique condition and as much of the extent of my body's need of exercise as possible. However, since almost each day differ from the next in terms of how i feel within my condition, the amount and intensity of the exercise varies heavily from day to day. A schedule like mine, designed around your own capabilities allowed by the severeness of your specific condition, is crucial for the exercise to not turn into something that will stand in the way of your progress rather then to allow it
Fish oil "eye q" brand Equazen (naturally rich of EPA - one capsule mornings and evenings for eyesight, skin and brain health)
Folacin/Folic acid (5 mg - one pill daily for increased Iron and B12 absorbation by the body)
Lactulose/Laktulos solution (one small cap full mornings and evenings - liquid fiber supplement for helping bowel movement)
Massage oil brand Sixtus START OIL (massaged into large muscle groups such as arms and legs mornings and evenings against stiffness in skin and for an increased blood flow/circulation before exercise/stretching)
Onaka "fil" yoghurt-like substance brand Arla (one tall glass mornings and evenings together with pills - the yoghurt-like substance contains Bifidobacterium lactis, which is a bacteria popular in Japan, for a healthy bacterial environment in the stomach
Q10 "Gold" brand Pharma Nord (100 mg - 2 pills mornings and evenings as part of the ME treatment)
Red Tigerbalm (is in my case rubbed on at the back of neck, behind ears where i'm swollen and also on shoulders for relieving headache pain. "Chills down" the nerves and works wonders as instant pain relief in most cases, trust me)
Riboflavin (100 mg - one pill mornings and evenings for chronic headache)
Roseroot "Arctic Root" extra strong (one pill mornings and evenings to help improve memory, the immune system, cholesterol levels, blood pressure and blood sugar levels as well as to gain mental focus/concentration)
Selen (0,2 mg - one pill every other day as a part of the ME treatment). Not sure if "Selen" is the correct name for the drug in English
TREO COMP (water dissolvable headache relief pill containing Acetylsalicylic acid, Kodein and caffeine - one to three pills daily. Have been able to cut these down to one per day to being able to some days skip them entirely since i started to take Riboflavin)
Valtrex (500 mg - one pill mornings and evenings for a 5 day period during oral herpes outbreaks)
Vitamin B12 injections (2 ml Mecobalamin once a week)