I am in pain every day, all day long. On a scale begininng at one (1) and continuing to ten (10), and inclusive of all current treatments, prescriptions, and future treatment plans as currently scheduled, my pain, every day is:
- never lower than a three (3)
- usually between four (4) and seven (7) depending on weather
- can spike without warning under stress
- can trigger without warning severe cramping/diarreha
- can trigger without warning thunderclap migraines
- can trigger without warning explosive rashes, hives
- can trigger without warning (allergic?) lung spasms/asthma
When I still had them, my entire upper and lower arches were affected by recurrent and intractable inflammations and resultant infections and periodontal issues; this was the cause of removal!!
All the major joints of my body are affected intermittently and without observable patterns by sudden inflammatory response, heat, swelling, itching, and/or exquisite pain/touch sensitivity.
I have undiagnosed food sensitivities such that my diet is now restricted to fat-free yogurt with organic granola and a packaged total nutrition food, “Huel” (www.huel.com), the occasional buckwheat cornbread, and split peas in various combinations (soup, casserole, etc).
My skin is sensititive to the sun and UV exposure such that I develop rashes and when forced to tan, areas of my body (legs in particular) seem to have ‘stripes’ that remain white/untanned. Additionally, parts of my skin are more elastic than seems normal – the skin on the tops of my forearms can actually be pulled up by just over an inch!
My vision is sensitive to light; yellow light and/or bright light makes me dizzy, can cause thunderclap migraines. For this reason, I tend to remain indoors. (I miss hiking and camping.)
My ability to turn, lift, and carry has been greatly compromised by “coat-hanger” pain in neck and shoulders, general neck instability, inflammation and pain between C2 and C7.
I have undiagnosed thorasic spine issues that cause pinching and pain, tightness, knots, and common/daily discomfort.
My lower back becomes very inflammed and stiff if I stand or walk around more than approximately ten minutes at a time. If I ignore this, I wind up slammed by fatigue and pain until I give up and lay down/sleep. This also keeps me at home.
I frequently become dizzy – sometimes to the point of near passing out – on standing; particularly if I stand suddenly. This also happens if I bend or stoop too quickly, or bend/stoop then stand.
My hips and upper thighs/hamstrings are persistently painful, tight, and difficult to comfort/content. I spend a lot of time sitting because it’s hard to stand/walk, and I spend more time now laying down because it’s getting hard to sit for long.
My overall ability to concentrate/focus is intact, but my mood, irritability, anxiety, depression, and overall pessimism in relation to achieving assessment, securing medical validation of my dysfunctions and pain, and getting the support I need as a human being is growing faster than I can address it (this has been true for some time now).
I feel very angry that people do not believe me when I tell them these things. I feel very angry that no testing seems able to pinpoint what is wrong with my body (though neuroscience research is already clearly pointing – but industry diagnostics and related protocols to incorporate peer-reviewed research into practice isn’t a thing yet, I guess).
Rheumatology knows my pain is real. Knows the probable causes. But because the tests either do not exist (see above) or exist with thresholds that call me “unaffected” when I’m actually “more than zero, less than needed for validation”, I just get to wait for it all to catch up.
It feels like I get to live some great, cosmic practical joke – I’m sick, but not recognizably??? I’m depressed, but autism makes me look normal??? I’m in constant pain, but no one believes me??? Where are the cameras? I call bullshit.
The only thing worse than being this ill is to be this ill and have everyone from family to physicians treat me like I’m making things up, inflating things, or somehow enjoy or want to feel like absolute, utter, useless shit as a human being.
The only reason I am not dead right now is because I have fought too hard to live this life to let the same bias and cultural cruelty toward non-visible illness (physical or mental) and pain take from me something I deserve to experience to its fullest, to the best of my ability – this life.
I really wish health care was more in tune with listening and believing patients. But maybe Occam could help them if they looked at it this way:
Which makes the most sense to you? That I want to be a respected, well-paid, and career I.T. analyst professional, OR that I want to be a destitute, disabled human?