the more things stay the same, the more i want them to change

Revelation: Invisible & Multiple Chronic Illness

I had the most remarkable day yesterday. Nothing exciting or flashy, just a flash of future possibilities. Something bordering on epiphany.

This has been a very hard week.  For some reason my uterus decided to wait 49 days before hitting reset, which means this cycle has been even more of a bitch from hell. I took so much medication to keep the pain at bay that I slept all day Monday, and a majority of Tuesday and Wednesday. I slept right through 2 different appointments: therapy and a chickenpox vaccine*. Combine this with the 2 appointments that I slept through last week just because of normal fatigue (to see my Sleep Apnea doctor no less!), and I am batting 1:5 for appointments. I did manage to get to the fertility clinic for some blood tests early last week...

*weird side note: about 10 years ago I asked for the vaccine because I never had it as a kid. They tested me and told me I had immunity. My mother doesn't remember me having it either. Last week, my fertility clinic told me I have no immunity and I have to get the vaccine soon (if I so choose) because you're not supposed to get pregnant until 3 months after getting vaccinated. I'm going to get the shot, but this is quite the head scratcher...

Realizing I had missed therapy was kind of the last straw. The more sick I am, the more dark my mood gets. Missing appointments makes me feel guilty and worthless and callous. And so the downward spiral began early Friday morning.

It has been on my mind all summer that managing my health has become just as overwhelming to me as the behemoth known as "The Great Upstairs Pack-Up Before Installing New Flooring." Now I am having anxiety problems on a regular basis for two looming beasts that I don't know how to tame. I decided a few months ago that what I need is to hire a private nurse to be my health advocate: someone to look at all of my history and diagnoses and help me navigate the system from specialist to specialist, to come to difficult appointments to explain the big words and ask the right questions. Because my Primary Care Provider, all half dozen or so in the past decade, have not been able to come close to helping me get a handle on what's going on in terms of undiagnosed symptoms and how each illness is affecting the others. I finally demanded an extra-long appointment with my PCP last year to go over The List: four pages (long hand, thankfully) of every last thing that's wrong with me. Previously, I had been told that the maximum was 3 issues per appointment. With a $20 co-pay for each appointment, I would have spent enough on office visits with one doctor that could have instead bought a ticket to Hawaii.

The doctor really did listen to me, soothed some of my fears, and referred me to a couple of specialists and sent me on my way. It felt so great to be listened to and have some action to follow-up on that it didn't immediately occur to me that all she had done was look at pieces of the puzzle she could hand off to other people to try to fit together, and ignored trying to put it all together for a bigger picture. After that, I tried to stay on top of things, but my follow-through sucks when I don't see the point. Then add in the new infertility diagnosis, and things began to spiral out of control.

So, on Friday I felt a bit like a deer in headlights - I was literally staring into space in the kitchen trying to figure out what I was going to do about this. It seemed hopeless. Eric came and went without noticing anything was wrong, and like magic that was the last straw. How dare he not be psychic! I spent the next hour or so crying and croaking out just how freaked out I was. The problem that bothered me the most: how am I supposed to make it to appointments that have to be made weeks in advance, when my level of health and energy changes so dramatically from day to day, to the point that I'm sleeping through appointments that are supposed to help keep me from sleeping during the day! I am stuck in a horrible cycle: my health greatly affects my mood, and my mood affects my health. If I get a cold on a day I'm doing OK, within 24 hours my mind is very much not ok. The longer the sickness, the more not-ok my mind gets. This leads to weird eating and sleeping habits (which makes me more susceptible to getting more sick/depressed), avoiding activities and obligations and people (about the only things that can help me fight off depression).

I mope, I get sick. I mope because I'm sick. I get worse because I'm moping. Where does it end?

This is where yesterday's revelation comes in. I did a Google search for something I had never even imagined could exist until that day: some sort of support for people who are sick with too many health problems to deal with.  Guess what? The support exists.

I found a support group Board for invisible illnesses through a conversation about dealing with multiple illnesses.

This caused many silent OMGs in my head. And lead me to The Spoon Theory, a way to explain to other people how quickly and easily your energy is lost in a day over the smallest things. This sheer genius of explaining the unexplainable was created by Christine Miserandino, who runs an invisible illness support site: ButYouDon'

Having new terms to search for led me to, a site with interesting outreach strategies. The simplest being a sticky-note campaign, as well as a blogging event for Invisible Illness Week.

Both of these groups are on Facebook, which I immediately joined. But then I kept on looking, to see if there was anything out there more specifically for people with multiple illnesses. I couldn't find a support site, but I found hope in the form of medical articles confirming that at least somewhere in the health community people are taking note of this phenomenon:

There is just no way to express how relieved and comforted I am knowing that I'm not alone. Not to mention the hope and conviction to change I feel might burst from my chest. When I think about it, I can't help but think about the Grinch's heart swelling 3 sizes that day...


Mary said...

You're definitely not alone, no matter how alone you feel. I definitely suffer from severe invisible chronic illnesses and I am actually thinking of joining some of the sights you listed for some support as well. I always tell Vernon that sometimes I wish I could put a huge bandage on my head or something just to show people that I'm suffering and need a little understanding that day.


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