My Daily Living Skills and Major Medical Issues

So, I ended up going to the ER in an ambulance New Year’s Day. Don’t worry too much though, I just have pneumonia and bronchitis.  Turns out that my body was in pain because my fibro was picking up on the impending illness. I went to sleep Thursday night and woke up Saturday  dehydrated and very ill. I didn’t have any minutes on my trak phone, and was alone at my sister’s. When for a number of reasons I couldn’t rehydrate myself properly by Sunday afternoon, I called the only number it would let me call: 911.

Don’t worry, it all came out okay. They gave me some medications and an in hospital breathing treatment, and since I had mentioned being Autistic when they brought me in the ER doctor made sure that the information he gave me was in easily processed chunks. Also, I was able to get myself in in time before it became a life or death issue.

This isn’t the first major medical issue I’ve had. It may be the first ambulance ride one, but some of my others- ones more directly tied to my ADLS deficits- probably should have included such a ride. Which is part of why I’m writing this post, actually.

The other reason: I’ve seen a number of people have their ability to live independently or not assumed based on things that have little actual effect on living independently. Being non-verbal vs verbal is one of my favorite irrelevant “indicators” of independent living. It has little practical impact when one has an AAC devices that is suitable for them outside of people’s prejudices.  I think other advocates have their own favorites.

I’ve tried living independently with minimal supports before, and it didn’t work. Because of my relatively irrelevant skills, some people assume upon meeting me that I’m someone who can live independently without extensive supports. They are incorrect, and I have the medical records to prove it. I’m not talking about assessments- I’m talking about the consequences, medically, of ignoring my support needs and Adult Daily Living Skills (ADLS) deficits.

The first time, I was trying to attend college. Because of other un-supported needs around the paperwork, I was having to live off campus. So I was on my own for the first time. I was in the nearest place I could find on short notice, in a tiny 2 bedroom house in a bad neighborhood in Erie, PA. After about two months, I had a man move in with me from back home who I was seeing. He had his own difficulties with executive functioning due to his ADHD.

In any case, I seemed to be doing okay. But there were little basic things that people would label as “minor” deficits. Not knowing how often to thoroughly clean the bathroom or kitchen, not being sure what needs cleaned. We weren’t living in a visual squalor or anything- but I couldn’t tell how to deal with or when to deal with things beyond picking things up and doing dishes.

In December, shortly before finals, I started to feel sick a lot. I’ve had GI issues most of my life- which I’m now finding are partially because of unidentified “mild” lactose intolerance- so I thought it was a part of that. The weekend before finals, I was miserable. The only non-graphic way to say it is to say I had constant diarrhea and severe abdominal pain. But that doesn’t even sound accurate, having lived through it. I’ve posted a graphic description on tumblr that you can read if you like. But I still thought nothing significant was wrong.

As you can guess, I have difficulty identifying my own bodily wellness. While I can observe things, they are relatively meaningless unless I’m specifically looking for them. I cannot register the contexts as they are happening- which is part of the reason why my lactose intolerance has been un identified until age 24 even with lifelong GI distress. I also struggle to figure out if my experiences are normal or if they are something to ask the doctor about- my fibro myalgia, for example, is pretty bad and has been symptomatic since I was 15, but I didn’t realize that the level of pain I was living with was abnormal until my 20s. (It increased dramatically at this point, which caused my mother who also has the diagnosis to ask questions.)

Sunday night I got to the point of being delirious. Not having much money, though, I refused to take an ambulance. The man who lived with me called around and found someone- a person I had gone to high school with who was attending the university- who was willing to drive me to a hospital. They did, and I didn’t even have to sit down in the ER before they took me back. It turned out I had gotten to the point of being in mortal danger- from C-Diff.

Most people pick up the bacteria in a hospital, and have it overrun their systems when they are on anti-biotics. I was not on anti-biotics, and hadn’t been to the doctor in a while. Additionally, I was on no other medication at the time either. The closest we can guess is that my difficulty with “higher level” cleaning and sanitation was a contributing factor.

Another major medical incident involved another time where I was living primarily on my own. I contracted MRSA, and had it not been for my brother deciding that it looked like it needed to be looked at, it could have been much worse than it was. As it was, I ended up with a very large infection on my lower abdominal area. If I weren’t so overweight, it would have eaten through my abdominal muscles. Instead, it ate fat.

The long q-tip the ER doctor used to get a sample deep inside went in more than half way without touching bottom. It was rather disgusting. I ended up basically having a hole 2 or 3 inches deep in my side, which I had to cover with bandages which were considered highly bio-hazardous when I changed them every day. Today, I have a scar on my side that is dark-ish purple.

Again, I had none of the common risk factors associated with community-based infection.

In my case, both of these were at least partially caused by complications of insufficiently supported ADLS deficits. I have had a number of other, more minor health consequences as well, but these are the more serious ones. I’ve had non-medical consequences as well, but those are not the subject of this post.

The point is that my relatively less intense ADLS deficits were still a major factor in my health becoming endangered. It wasn’t my major issues organizing and managing money or bills, nor was it my issues managing people, that put me in danger. It was the parts that people brush off- difficulty judging my own health, and of judging what is normal and “appropriate” actions, of managing and knowing when to do some of the basics.

And I’ve no idea if any of this is making any sense. I feel a bit as though the thoughts aren’t done being put into words yet. Maybe I’ll revisit it again at some point? I’m not sure. I just know I was thinking about it a lot while I was in the ER this past weekend. So. . . there’s that.


11 thoughts on “My Daily Living Skills and Major Medical Issues

  1. I have some similar issues – I’m going on antibiotics today after a much less scary, but still prolonged, bout with a respiratory infection. I have a hard time telling when I’m being reasonable and when I’m being a hypochondriac, perhaps because I feel like it’s only reasonable to have health problems at roughly the rate that others do. I will ignore a problem if I feel like I’ve used up my “quota.” As a child I dealt with a lot of second-guessing about what turned out to be very real, serious medical problems because people thought I was complaining that I felt sick too often, which apparently in their minds meant that I was a wimp or making things up. For similar reasons, I have no real “baseline” to evaluate how I feel against how I’m supposed to feel (i.e., does everyone feel this tired and simply have better willpower, or is my fatigue a serious problem?).

    • I definitely understand the feelings you are describing.

      I have found that I have them less frequently since I recognized my chronic pain was an actual thing instead of a string of unfortunate events? It has allowed me to find other people living wit Chronic pain as well as chronic illness which is good. I mean, being able to access the Disability community (which includes Chronic pain and Chronic illness to some extent) is great, but being able to find others and recognize that their experiences are a lot like my own has helped. A bit like going from the general Mental Health Disabilities community and finding Autistic community? If that makes any sense?

      But yeah, between finding others living with lots of illness and having it actually identified as a thing I’ve found myself able to better say “Yes, I am sick right now. No, I am NOT whining.” Yeah, I still have the issues you describe about the baseline stuff and reasonable vs unreasonable, but it helps quiet some of the . . . self doubt? second guessing? that I was living with after I’ve Identified that what I am experiencing is for me illness/pain/sickness. And from there, with less second guessing, It’s easier cognitively to find a way to deal with the issue instead of letting it get worse and worse. . . though it still sometimes takes me a very long time of getting worse and worse before I’ll act!

  2. Sounds like you had a really rough New Year. Glad to know that you are doing well, though! Much of what you wrote about makes a lot of sense to me. I have executive functioning issues and had it not been for living with my grandmother for most of my life, and then having a roommate in college who knew such things, I probably wouldn’t know when to “clean” the house. See, they both had a schedule, and they were fairly similar. Sweeping, dishes, picking up of things out of place, etc, were done daily. Vacuuming (unless needed sooner), changing/washing bedsheets, laundry, toilets/bathroom, were done weekly. Things like that. Since it was a routine for most of my life, I continued with it. Granted, as my health and energy have declined in the past years, I haven’t kept up with such a schedule, but I do what I can. I can be a bit messy and my work space is usually cluttered, but nothing is filfthy in the sense that it could become a health hazard.

    I also have a very hard time explaining my symptoms or describing my pain. Since I live in chronic pain, I have to describe it often to my dr’s and it’s so confusing to me. I just feel like yelling. “it hurts, dammit!” Or when they tell you to rate your pain on a scale of 1 – 10?? Those pictures never depict what the actual pain level feels like. I have, however, found a decent pain scale that actually describes the levels 1 through 10 in a way that’s understandable in words. For example, level 4 would be when you’d take an over the counter pain reliever, etc. It explains each level by actions, which for some reason makes it much more understandable to me.

    Anyway, I’m sorry for leaving such a long reply. Just wanted to let you know that I do understand what you were saying. I hope that you are feeling better by now.

    • Long replies are fine! I’m actually really glad to get your and twitchy woman’s Replies, because I was very nervous about how hard it is to describe the exact executive functioning issues I’m talking about!

      I rather have issues with pain scales myself. Actually, I warned the ER doctor that because of living with a chronic pain condition my sense of scale was screwed up to start with! I know I found one that I rather liked, and wrote something on it once, but I can’t remember where or when or anything.

  3. I’ve been thinking about you a lot and hope you’re feeling better. I know I don’t often speak up on your blog, but I just wanted to say that I would be really proud if my children grew up to be like you. Thank you for bringing the Loud hands project to our attention and for sharing your live with us. 🙂

    • I hope your children grow up to a better world than the one we are in right now. There are some parts of my life that I don’t have enough perspective of to write about just yet- I’ve been homeless for the past year, trying to find a place to live while sleeping on family member’s couches. I hope this is something that your children will never have to deal with, and I’m trying to work hard to make sure that the worlde that would have this happen to me is changed enough that it will neverhave to happen for them.

      thank you ❤

      • Like I said: so, so proud. I think you are so strong not just dealing with your own issues but working yourself to the bone for the future generations behind you. You are truly an inspiration and I only hope that as a community we can rise up and give proper backing for all people.

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