Living with an Invisible Illness

It’s not often that I write about or even address my health and how it affects my life. One reason is because I choose not to focus on it, because I feel that you get more of what you focus on. The other reason is because it won’t change anything. There’s nothing anyone else can do or suggest that will make it better. Unless you know how to turn off an auto-immune disorder.

I have tried multiple diets, medications, exercise, supplements, etc over the years.  Nothing really works.  Some things have worked short-term but nothing long-term.  Currently there is no cure for auto-immune disorders,  only treatment for various symptoms.  Such patients see multiple doctors, as most doctors don’t treat the whole body but rather they specialize in a particular system.

One of my issues, Sjogren’s Syndrome is a systemic disease, meaning it can affect ANY system in the human body.   Thus, each day is an adventure as to which body part(s) will be affected any particular day.

Feeling Invisible

Yes, it’s nice to know people care and I do take comfort in that. Ultimately though I still deal on a daily basis with an illness, actually at least two, that are completely invisible to the public.

Heck, even Handsome Hubby can’t actually see it. He does, however, see how it affects me and makes it more difficult to enjoy the quality of life that I desire.

Most of us are quite sympathetic when we see a person in a wheelchair, or with a brace, cast or other obvious item that signifies they are having some difficulties at the current time. I promise you though that if you were to look at me you’d never in your wildest dreams imagine what my body is going thru internally.  Except for maybe my red eyes from Sjogren’s Syndrome.  Most people think I’m high when they see them, and don’t realize it’s the result of a medical condition.

You see, I have at least two auto-immune disorders, plus early onset osteo-arthritis. None of my known issues have any outward sign that would indicate to you that something is wrong. What you can’t see is that often my fingers and wrists, and sometimes my toes and feet, feel like they are being twisted around from the inside. My tendons, particularly my Achilles’ tendons, have inflammation in them that can be seen on an ultrasound. My eyes feel like sandpaper and my mouth is so dry it feels like I’ve been in a desert for days.

Often I’m so tired, not sleepy, just exhausted, from doing even the simplest of tasks. For instance, right before starting this blog post I scooped the cat litter box. It made me so tired that I needed to lay down and rest. Maybe not sleep, but at least take a long rest on the couch.  I would much rather be productive.

When I’m in a flare of exhaustion I feel even worse, mentally, because I feel like I’m letting everyone down.  Family, friends, business associates, everyone.

It’s not always like this. There are good days, good weeks, good months, even good years. After my rheumatologist appointment the other day, one thing has become clearer to me. My body via my white and red blood cells are putting up a hell of a fight. Often it’s my own body they are fighting against, not an infection.  This is the nature of an auto-immune disorder.  Something tells the body there’s an infection or invader that needs to be fought, when in reality, it’s often attacking the body itself.

It’s different for each and every person who has an auto-immune disorder.  Which is one of the many reasons they are difficult to diagnose.  Most of us don’t neatly fit into the classic model.

It was a bit dismaying to find out the other day that both my red and white cell counts are almost exactly what they were over 2 years ago when I first started treatment with a mild immunosupressive.  In between they’ve been better, which is good.  Hopefully they’ll go back down again.

My white cell counts are nearly always a bit high, but this time, they were nearly 50% higher than the highest number on the normal range.  I am still not sure what to make of that.  On one hand it makes sense when I think about how I have been feeling lately.  It is an obvious auto-immune flare.

The red blood cell count is barely high and I’m wondering if it’s because I once again had a period.  That’s three now in the last 17 months or so.  So…I am still premenopausal.   One must go a full year without a period to be in menopause.  Someday I’ll get there.  Just not sure when.  Apparently, this is one area I’m above average in, as the average age of menopause is 51 and I’m 54 soon to be 55.

I have been existing with an auto-immune disorder since at least the morning of my 29th birthday.  It took years to be diagnosed.  Even longer to be put on a medicine that helped.

Accommodation

In the past I’ve worked for an employer who wasn’t willing to make accommodations for me, despite having a doctors note that I needed water at my work station due to a medical condition.  Eventually I left that job and went unemployed for over 2 years. Yes, I could have made an issue of it with the ADA (Americans with Disabilities Act) but that would have been too stressful and stress is something that I strive to avoid.

I’m so grateful for my part-time job at the bricks and mortar adult boutique  I work for, as they are willing to make that type of accommodation.  Sadly though as much fun as the job is, if my fatigue level doesn’t improve I’m not sure how much longer I can do it.  Thus I am really hoping to make a go of this sex toy review blog and my own small online store.

Suck it up Buttercup

Most of the time I “suck it up buttercup”.  I am quite good at hiding my pain and fatigue level…to a point.  Handsome Hubby is the ONLY person who knows how I’m really feeling and sometimes I don’t even tell him.

If you ask me how I’m doing, the answer will nearly always be okay.  It may or may not be true.  Keep in mind that okay for me, is not the same as okay for others.

I’m used to pain and fatigue and consider it, to some extent, just my normal mode.  The days when I feel better than okay, I usually end up overdoing it and pay for it the next few days.  It’s difficult to pace myself when I am actually feeling good.  You’d think one of these days I would remember to do that, but I don’t think it will happen.

Rambling on

Thanks for reading my rambling.  My review queue is now overflowing and I keep sending apologies to those I owe reviews.  They WILL be done.  I’m not giving up.  It just may take a little longer than expected.

There’s much more I could write about, but I really don’t want to focus on the negative…only the positive.

I’ve once again started a regimen of supplements that I’m hoping will help.  It has helped, in the short term, in the past.  Will give it a go again and see what happens.  Certainly it can’t hurt.

2 thoughts on “Living with an Invisible Illness

  1. Liz Elliot

    This is really a powerful read. A lot of people struggle with invisible disorders and this article encourages people with them. It reminds us that we are not alone.

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