Life with a chronic illness is both exhausting and terrifying. I never know if my counts will suddenly drop and I’ll progress to AIDs or if I’ll catch a preventable disease since Karen left her devil spawn unvaccinated because of Jebus or that McCarthy hoochie and the band of idiots about Autism. It’s a world of pain, fears, and is often tiring and tedious. Take the handful of pills; some are daily meds others are to relieve symptoms of the meds keeping me alive. And yes, I do want to take the meds and deal with the symptoms because those twigs and oils don’t do the things the man or woman pushing some miracle natural product that’s nothing more than an unrefined version of the medications I’m taking and is often more dangerous than the regulated medicines produced by the pharmaceutical companies. Plus, mine have copay cards to help meet my deductible. Do the hipster hippies pushing their expensive kitchen herbs and rubs offer that?

Anywho, I get tired of all the things I have to worry about and how tired I am most of the time. I’m worried that the work I want to do will expose me to things like measles, mumps, and rubella or other illnesses that have vaccines. I mean, even with a good count and being undetectable I’ve still contracted things like the rotavirus when I was working in social work for one of the HeadStart Programs. Adults aren’t supposed to catch something like that because their immune systems are strong enough to prevent that kind of infection. Now imagine finding that out and how that can lead to other types of illnesses that are worse like measles, polio, or chicken pox, or Things that are simple and easy to prevent for those of us who can’t have vaccines with live virus. That herd immunity is deteriorating, and it’s frightening to someone like me who has to deal with the negative consequences of other people’s choices to allow the increased chance of infecting someone like me who is unable to receive those types of vaccines anymore. I also don’t show titers (antibodies present after an immunization) for the Hep B vaccines, and I’ve had the series twice and still don’t show a resistance. But hey, don’t follow science and listen to people who get their advice from bushes and ghosts and a has been bunny who’s more worried that her child has an illness and uses it to further her fame and make Autism sound like it’s the worst thing in the world to have, but neglects that fact that a dead child is the worst outcome or killing others due to negligence in community responsibility.

I’m also tired because my meds are hard on my system. They make my stomach hurt still, produce excess gas in my intestines, and cause me to have constant loose stool or diarrhea. I’ve recently started adding anti-diarrhea meds to the growing list of medications I take daily to help reduce that aspect. It doesn’t always work, but I count it as a victory when I have semisolid or at least one solid movement in a week. I have a love-hate relationship with food because my stomach rebels against almost anything that I put into it because the meds make my stomach more sensitive than it usually should be. Honestly, there are days where I have to force myself to eat every meal because I just don’t have the energy or desire to deal with upset stomachs and pooping not too long after I ate because the food literally went through my system far faster than it should have.

And there are days I just want it to end because it’s a lot to deal with on a daily basis. I can’t drink what I want because there could be interactions with my meds or it can weaken my immune system making me more susceptible to infections. I can’t travel to many of the places I want to go to because I could be at risk for severe illnesses or I might not be allowed into the country. I’ve been denied services by people, almost fired, and had doctors, nurses, and other medical professionals act like I have flesh-eating bacteria that will leap at them if they get too close. I’m just tired of dealing with the illness because I’m not allowed to forget about any of it, ever. It’s always in the back of my mind gnawing away at my psyche, asking for more and more of me to give, and it’s exhausting.

From Nursie poo:  Igor will be writing about life with a chronic illness from time to time.  If you are a professional reading this, this is your patient and his perspective that he may or may not present to you.  Igor is lucky.  He is surrounded by a ton of folks who care and has great support now.  Early in his disease…well I will let him tell you what that hell was like himself, stay tuned