Why I Share Personal Information Publicly

The following poster was produced by an MS group, but is equally relevant to ME, Lupus, FMS, etc.

The slogan reads:

I'M NOT ASHAMED OF MY DISEASE,

BUT I WISH I DIDN'T HAVE IT.

I HAVEN'T DONE ANYTHING TO BRING

IT UPON MYSELF, BUT I'M DOING

EVERYTHING TO FIGHT IT.

I SPEAK OPENLY ABOUT IT IN ORDER

TO RAISE AWARENESS.

 

I personally pondered a while before reaching the decision that I must publicise the effects of my ‘invisible illness’. When I am out and about, it is due to my experiencing a relatively good day. The vast majority of the time folk do not see me abed in my bed-cell swollen, in pain, suffering various neurological symptoms that militate against quotidian life let alone social contact.

Alas, in today's society where it is now acceptable to bait & hate disabled folk, it is necessary to provide personal accounts of suffering to counter the accusations of “faking it” &/or hypochondria and undermine the MSM lies & propaganda.

As I am reasonably literate and compos mentis some of the time, it is my personal moral duty to make every attempt I can to stand up for disability rights.

If my posts annoy you, feel at liberty to turn off notifications.

For those of you who tolerate my posts, thank you.

And those of you who are kind enough to share the occasional post, my deepest gratitude - and I endow you with brownie-points & fairy-dust! %D

*

MS = Multiple Sclerosis

ME = Myalgic Encephalomyelitis

FMS = Fibromyalgia

MSM = main-stream media

Pain: a Taxonomy

Here is an attempt at classification of the different types of pain from which I suffer. Obviously the degree of pain is variable, from dull to sharp to acute, and differs depending on the type of pain. For example: achy pain is never sharp or acute; piercing pain is never dull. I have listed the terms alphabetically, not in order of frequency or intensity.

This is not an attempt to elicit sympathy nor an extension of putative hypochondria, but a genuine attempt to come up with some pertinent descriptors.

You may be aware of other types of pain than the eighteen hereby listed. You may experience pain differently. So, please feel free to add comments below.

Achy - dull; relating to my fibromyalgia (FMS); or my osteoarthritis (OA), usually heralding damp weather.

Blinding - experienced as searing flashes of light; migraine &/or photophobia.

Cutting - Raynaud’s syndrome skin splits; feels like multiple paper-cuts.

Drilling - into temples; migraine; at its worst makes me bang my head on the wall.

Earachy - probably one of the most difficult pains to cope with as makes sleep impossible for me over a prolonged period.

Fiery - arthritis in joints: hips, lumber, shoulders, wrists, elbows, feet...

Headachy - front of skull (not migraine); this is the only pain for which my prescribed painkillers (codeine) actually work.

Itching - eczema; is insanely worse than a typical itch mixed with a high degree of soreness.

Nasal - a burning sensation accompanied by an über-taut muscular contraction (a sort of heightened awareness or prolonged about-to-sneeze feeling) in my nose in reaction to chemical- &/or odour-sensitivity.

Piercing - sharper than stabbing and moves through my body faster than travelling pain; front ribs thro’ to back ribs or v.v. (sometimes linked to costochondritis); similarly with feet; back of head thro’ to back of eyes.

Pressure - ranging from being touch-sensitive to bed-sores.

Prickly - eye-balls; sometimes a precursor to migraine or a reaction to photophobia.

Shooting - up and down limbs, faster than travelling pain and doesn’t move elsewhere.

Stabbing - in my back (sometimes linked to costochondritis); soles of feet; base of skull; irritable bowel syndrome (IBS); constipation; diarrhœa.

Throbbing - more intense than achy, but less acute than fiery; typically in my limbs &/or at the back of my skull-base and in my neck.

Toothachy - my dentist advises there is nothing wrong with my gnashers, it’s simply yet another effect of the myalgic encephalomyelitis (ME); it can be a random single tooth or a whole jaw of teeth.

Travelling - moving, seemingly at random, from one part of the body to another with no discernible pattern.

Vibrating - a whole of body reaction to my intolerance of vibration &/or sound; it’s a sort of edginess that echoes around my body in diminishing waves; I feel it particularly acutely in my ears.