Sometimes the bare minimum is plenty

November 13, 2021

I’ve been wanting to write for weeks but it’s just been too much. I’ve been having a really hard time lately.

Thanks to medication changes, my adrenals aren’t being properly supported, so I have both less energy and lower tolerance for handling stress. And in a few days I have a colonoscopy and endoscopy.

Colonoscopies aren’t a big deal for most people. Not that anyone loves getting them, but you just deal, right? Well, thanks to a decades-long history of medical trauma, medical procedures can be triggering for me. And thanks to decades of undiagnosed gastrointestinal symptoms, GI stuff is also triggering for me. So knowing that in two days I’m going to have to drink a formula that will probably make me throw up, and that will induce the kinds of GI symptoms that I’ve struggled with for most of my life, followed by a medical procedure, where I’ll be up close with people during a pandemic…. yeah, my anxiety is at an all-time high.

Logically, I know it will be all be fine. But logic isn’t helping. My therapist gave me some breathing and thought exercises which help, and I’m just trying to make it through this period. It’s rough.

To make it a little easier, I’m doing a few things that I don’t usually do:

  • I cried. I spent a lot of my life learning not to cry because if I did, people thoughtI was just trying to get attention. (Yup, as a 12-year-old with chronic pain, that’s what I was told by several doctors and teachers. Thankfully, my parents never thought that.) Now, I don’t cry easily. For a week I really felt the need to cry, but I couldn’t let it out. Finally, though, I cried. And then I sobbed. And then I sobbed some more. I cried a lot that day, and it helped a lot. I cried a bit yesterday. I’m still having trouble crying as much as I need to, but I’m working on it. It helps to let it all out.
  • I asked for help. I don’t do this often enough. I posted on my Facebook page, asking friends to make phone calls to manufacturers for me. I was trying to find a gluten-free version of the easier colonoscopy prep. I had made a few calls, but it’s so stressful. For one thing, making any of calls for gluten-free stuff is stressful and exhausting and I’m tired of doing it. But then, doing it for this purpose…. it was just too much. A fabulous friend did the research. She called everyplace on my list, then did more research to find more to add to the list. She struck out, but if she hadn’t called for me, then I would have felt like I had to, and I would have been upset with myself for “failing”, thinking that maybe if I’d made the calls it could have been easier.
  • I asked for help again. Several friends had volunteered to help with the calls, so when that friend struck out, I asked for more calls. Since I couldn’t get the easier prep, I wanted to get an anti-nausea pill to help with the one I’ll be doing. Again, I needed something gluten-free. Three people called pharmacies all over my area to ask which manufacturers they used for this med (there are quite a few who make it), and then called those manufacturers to ask if the med was gluten-free. Again, they struck out. But again, if they hadn’t done it then I would have felt like I had to. It was so great of them to make those calls.
  • I asked to borrow a puppy. No, really! I have neighbors with two of the sweetest, most adorable puppies. Both are house-trained and don’t chew on stuff, so they’re not too hard to watch. I asked if I could borrow one, and the timing worked out that I took one for an hour. He cheered me up SO MUCH! Dogs are great medicine. Normally I would have felt silly asking, but I’m glad I did. And they were glad their dogs could help.
  • I’m giving myself a break. My to-do list is short right now. Really short. And even then I know it’s ok if I don’t get most of it done. In a typical week this amount would be easy to do (my list is usually twice as long), but not now. For example, today’s list is: laundry (already in the machine – win!), vacuum (if it doesn’t happen, that’s ok), prepare some work for my volunteer gig (they know I’m struggling and that I may have to cancel tomorrow’s meeting if I can’t get it done, but I think it will be doable), walk (fresh air is good for me), and watch YouTube videos while relaxing with my knitting. My hope is to get everything done before lunch except the last two. That way, I won’t have anything I need to do this afternoon except enjoy a walk and relax on the couch. And honestly, the vacuuming is unlikely. And that’s ok. The rest of my week is even easier than today.
  • I’m avoiding anything emotionally taxing. When a friend brings up a stressful topic that isn’t necessary to discuss, I ask to change the subject. Stressful movies and books are on hold. I’m keeping it as light and easy as possible. Last night I watched an animated Disney movie and that was perfect.

Is this all enough to make me feel great? No, of course not. But it’s enough to make me not feel worse, and that’s a win. I’ll keep spending time with dogs, watching easy movies, doing my crafts. I’ll keep my to-do list short. I’ll ask for help. I’ll spend time with dogs. (Oh, did I say that twice?)

In a few days, after the colonoscopy, I’ll feel better. Once my medication is back to working properly, I’ll feel even better. (I tried to time things so that it would be back before the colonoscopy, but my doctors were really slow to get back to me about how to proceed after we got the test results.) This isn’t the post I planned to write. That one has to wait. And again, that’s ok. But it’s one that felt right to write. We all have times where we’re struggling more than usual, and it’s ok to do the bare minimum for a while. That’s definitely my plan for now.

6 Comments | Gastrointestinal, Healthcare, Kindness, Limitations, Medication, Rants, Raves, Relationships: Family & Friends & Dating & Sex, Support, Symptoms | Permalink
Posted by chronicrants

Advice between chronic illness folks

October 16, 2019

I don’t know about you, but it took me a looooong time to figure out how to handle flares. The truth is, I’m still learning. But over time, thankfully, I have found some things that help. Sometimes I take the learning process for granted; after all, I have had symptoms for almost 30 years now. A phone call a few nights ago changed that.

A friend was in the middle of a flare, and having a rough time. They were dealing with both the horrible physical symptoms as well as the emotional fallout of having to miss a much-anticipated event that night. There was also the all-too-common self-recrimination, wondering what they did to cause this. Maybe they should have done less the previous week when they felt so good. Maybe they should have rested more. Maybe maybe maybe.

I’m the queen of “what ifs” so I really get that. I do that to myself all the time, as much as I try not to. I’m getting better, but it’s still a struggle. This time, though, it was someone else who was struggling, so I was able to step outside of my own issues and help them.

My friend was only diagnosed last year, which really isn’t that long ago. It takes a long time to learn how to handle chronic illness. I wish I had had someone to guide me, but unfortunately, there was no one in my life at the time with that kind of experience. Now, I am glad I can be that person for others.

First, I talked my friend out of the emotional spiral. Sometimes our bodies are going to flare, and there’s nothing we can do about it. Maybe they did overdo it, but there was no way to know in advance. And maybe they didn’t overdo it, and there’s no way to know that, either. Maybe they could have done less last week, and they still would have had the flare, right? The weather was terrible; not only are we going through a seasonal change, but it was a very stormy day. There’s a good chance the weather was at fault more than anything, and what can anyone possibly do about that? Besides, once you’re in a flare, blaming yourself won’t help at all. And as much as we think we can figure out the cause and prevent the next flare, we can’t. Ok, sometimes we can, but to think we can do that every time is just unrealistic. That would imply there’s a way to prevent ever having a flare again, and we know that isn’t true. We only wish it were.

Once my friend was feeling a bit better emotionally, we talked about how to handle the current situation. I suggested some fun tv shows to watch, etc. But here’s where we get to the part I most want to share with you. Without thinking much of it, I mentioned some things I do that my friend thought was brilliant and it got me thinking, maybe not everyone does this? So let’s share our tips!

I know I will have more bad days. I don’t want them, but they are inevitable. So I prepare for them. Just like I have bandaids at home for the inevitable future cut or scrape, and acetaminophen for the inevitable future headache or fever, I also keep things around for future flares. Here’s a short list:

  • Fun, lighthearted movies saved on my Netflix and Amazon Prime accounts, plus a few old dvds.
  • Easy to watch tv series saved on Netflix and Amazon Prime.
  • Chocolate and other comfort food.
  • Frozen leftovers of healthy meals I have previously made.
  • Low-energy hobbies on hand. For me, this is currently knitting and crochet, which I enjoy on all but my worst days. I also like to read and listen to audiobooks when I feel up to it.

These work for me, but you will have your own items. On top of this, several years back I read a tip on Chronic Babe to make a list of things to do during a flare, since we can’t always remember these things when we’re dealing with tough symptoms. One problem I have found is that when I feel especially bad, I don’t even think to look at the list! So I recommended that my friend make a list, and tell several close friends and family members about it – anyone who they might talk to during a flare. That way, their friends and family can remind them to check their flare list, where they will find a list of things to do and ways to think.

My current list has fewer items like the ones above, which have become second nature at this point, and more items around my thought process, mostly recommended by my therapist. These help me to stop blaming myself or assuming things will get exponentially worse. I keep the list in the Google Keep app on my phone, so it’s always handy. Even if I don’t have the energy or am in too much pain to cross the room to my desk, I always have my phone on me. That’s key – keep your list where you can easily find it when you need it. Keeping it at the bottom of a heavy box on a high shelf is definitely not the most useful place for it!

It sucks, but we all know that we will have bad days, so we might as well prepare for them when we’re feeling ok. What do you to to prepare for the bad days? Do you have a flare list? What’s on it? Please share in the comments, because I’m certain you will have ideas that I and others haven’t thought of, and we all need to learn from each other!

8 Comments | Educating, Expectations, Fatigue, Frustration, Isolation, Limitations, Pain, Raves, Relationships: Family & Friends & Dating & Sex, Support, Symptoms | Permalink
Posted by chronicrants

When you’re not the “right” kind of poor and disabled

August 7, 2019

I just learned about a program for low income and disabled folks to get internet access for $10 per month from Comcast. Too bad I wasn’t eligible, despite meeting all of the criteria. You see, I’m not the “right” kind of disabled and poor.

I looked at the list of requirements for the program. Despite only needing to check off one box, I could check off many: I am on Medicaid, getting SNAP (food stamps), on Section 8 (a housing voucher), and in the Low Income Home Energy Assistance Program (for help paying utilities.) But I’m not eligible. Why? Because I’m not a new customer. You see, it doesn’t matter how little money you have coming in, if you aren’t new to the internet, then you aren’t eligible for this program. Comcast is the only option for internet service where I live and the least expensive plan is $79 per month. It bothers me when I pay my bills every month, especially since the service I had in my last apartment was better quality and only $45. Still, it’s the only choice for internet here, and I consider internet a necessity for as long as I can afford it. Lowering it by $65 per month (accounting for taxes and fees on the new plan) would make a huge difference, though!

I’m not the “right” kind of poor and disabled for a lot of government and other programs either, though I have managed to get quite a few accommodations, for which I am very grateful.

I am so not the “right” kind of disabled according to a lot of people out there. After all, I can mostly walk without any assistive devices, and that’s their only consideration. I mostly look healthy, especially if you don’t look too closely. That’s all that “counts,” as far as they are concerned.

But that’s not the reality. The reality is that I spent all day feeling like crap, not even managing to get dressed until 2pm, because I had to be out of the house most of the previous day for medical tests. The tests were easy, but the travel too and from, plus being alert and interactive, was just too much for me. I came home exhausted and in a ton of pain, and had to spend the next day recovering.

The reality is that I have a lot of money in the bank, and I am so grateful for that. But I also know that the only reason my totals appear to go up is because my investments have gone up. It’s not real. When the market turns, as it always does, those numbers will go way down, and I won’t have any job income to offset the fall. I am thankful for my social security payments, but they don’t cover enough.

For a minute last summer, my benefits covered all of my basic expenses, which meant if I earned a little money from dogsitting or something, I could use it to go out to eat or buy clothes, and not have to take money out of savings. I would need those savings for a bigger expense, like to replace my car or to move, but for everyday things, I was ok. And then a couple months later I lost my food stamps. I had to start taking an expensive medication that insurance didn’t cover. And once again, for basic monthly expenses, I was taking money out of savings.

My savings are my safety net, but I know they won’t last forever, especially if I have to take out money just to cover the basics. So no, I’m not really poor in the typical sense. Yes, there are people who need the help more than I do right now. On the other hand, without these benefits I receive, I would quickly run through my savings. Then I would be in a dire situation, because the benefits wouldn’t cover all of my basic expenses and I would no longer have savings to make up the difference. Then what would I do?

And that is the crux of the issue with the “right” kind of poor and disabled. By the time we meet that definition, things have deteriorated to the point where the help no longer helps the way it would have earlier on. For example, one day I will need knee replacement surgery. Right now I do physical therapy and wear knee braces in order to put off the need for the surgery. If the problem was caught sooner, I could have avoided years of pain. So now I could ignore my exercises and forget the knee braces and get the surgery right away, knowing that it will have to be repeated every decade or so. Or I can use the supports I have now and put off the surgery, in the hopes that I will only need to have it done a couple of times throughout the rest of my life. I choose the latter. But imagine if I didn’t have a choice. Imagine if my only option was to repeatedly have the surgery. That’s what these programs want. They want us to get the point where we no longer have better options, and then maybe they will help us.

I am lucky. I have the option to keep pulling money out of savings to pay for basics. These days, my basics are rent, utilities, groceries, medical expenses, gas, car insurance, and car maintenance. Everything else is an extra, including a meal out, a gift for a friend or relative, or a new sweater. I get help for some of those necessities, like rent, utilities, and groceries. Still, my benefits only go so far, and my medical expenses are high, since a lot isn’t covered by insurance. Without savings, I would be choosing which of those necessities to get rid of and frankly, I don’t see anything on that list that I’m willing to live without (the car is necessary where I live now and even before, when I lived near public transportation, I was often too sick or in too much pain to take it and would have to drive instead.)

So screw the folks who only want to help the “right” kind of poor and disabled people. We all deserve help, and these programs should be available to those who need them.

I want to add a final, important note. I doubted myself. Maybe I was being too harsh? Maybe it’s good to limit these programs to only the most needy among us? Maybe I’m being selfish? Self doubt is a big problem for a lot of people, and it comes up a lot for folks with chronic illness. Personally, I was told for years that I wasn’t “sick enough” to get help, and that ended up making me a lot sicker. If only I had been diagnosed and treated a decade earlier, I might not be disabled now. I might be able to work full time, and these money issues wouldn’t be on my radar. So yes, I still doubt my needs. And then, while I wasn’t sure if I should hit “publish” I went over to Facebook, and saw a bunch of comments on a post I had made about this program. Several folks were really excited to see it, then disappointed to learn they weren’t eligible because they already had internet through Comcast. Those who were able were already talking about switching to another provider, with the plan to switch back in three months in order to get on this program. Because yes, there are people with internet access who have health and money issues and who need the help. We need help, not gatekeeping. This is a federal program, and should be open to everyone. And that is what made me decide to publish this post after all.

What do you think? Should programs like this be available to everyone who is low income, even if they have internet access already? Are the restrictions reasonable or bullshit? Please comment below, because I would love to know what you think.

6 Comments | Expectations, Frustration, Insensitive, Rants, Support | Permalink
Posted by chronicrants

“Don’t let the hormones make you think that you’re crazy”

April 8, 2019

I’m an over-thinker. I always have been, I just didn’t realize it was possible to be any other way. In more recent years, as I have had a lot more time to think and a lot less ability to do other things, I have found myself thinking things through even more. This can be incredibly useful, and has allowed me to research my health condition, for example. But it can also lead to trouble, like when I worry about what certain things mean.

I read a lot, too. I read books, blogs, news articles, Facebook posts. I read about chronic illness. This reading means that I find useful information, but I also learned about things I would probably be better off not knowing. I often wish I could unlearn things.

One thing I wish I didn’t know what how much sicker and more disabled some people are than me. Obviously I knew this in an abstract sense, but being involved in the chronic illness community makes it a lot more real. I also see the high rates of mental illness among those with physical chronic illnesses. I worry that one day I could develop some of these issues. I could become more disabled, develop new physical chronic illnesses, develop mental illnesses, or all 3. This isn’t something I worry about all day every day, but it comes to mind a fair amount.

Last week I had a horrible bout of anxiety. I was nervous about the upcoming iron infusion, and the closer it got, the worse I felt. By the evening before, I was a complete wreck. I should have used some medical marijuana, but for some reason that didn’t even occur to me until the next day! I did everything else I could think of: I messaged some close friends, told them I was anxious, and asked for distractions. The kid videos, cat video, stories about their lives, etc. were very helpful. I read the questions my therapist had suggested I ask myself to determine if my anxiety is founded. I ate comforting foods while still having to avoid inflammatory foods, thanks to the food reaction a week earlier. The next day I stayed busy as much as possible. I was annoyed but managed not to panic when I got my period, only 3 weeks after the last one. I had a friend come with me to the infusion. But I was still a wreck.

On the way to the infusion, I told my friend who it would work. It’s a very short thing, but they keep patients around for a while afterwards because there’s a not-insignificant chance of a potentially fatal reaction. “No wonder you’re anxious,” she said. As I responded, “Oh, that has nothing to do with it” I realized how strange that was. I wasn’t worried about a horrible reaction. So why was I so anxious? I couldn’t figure it out.

Several days later I went to my therapy appointment and I immediately brought up the extreme anxiety. It was worse than just about any I’d had before – it rivaled how I felt the night before my food surgery several years ago, and that made no sense! We talked it through for a while. Eventually she pointed out that I have been hypothyroid lately, right? Yes. “Hypothyroid can cause anxiety. In fact, any psychiatrist who has a patient with anxiety will test their thyroid function.” (I pointed out this unfortunately isn’t the case and she said, “If they’re any good, they’ll do it.” Boy do I like her!) Then she pointed out I had unexpectedly gotten my period that morning, and I usually get more emotional a day or two beforehand. Of course, I hadn’t connected the two because I hadn’t known my period was coming. And then she said it:

“I know you worry about developing mental health problems, but don’t let the hormones make you think that you’re crazy.”

And I instantly knew she was right. I worry so much about developing anxiety (yeah, I know, totally counterproductive, right?) or depression but so often, the worst of my anxiety, depression, or other similar feelings are related to my hormones. When I was feeling down last fall it turned out to be a problem with my thyroid medication. When I suddenly feel like crying for no reason at all, it’s always my hormones. At that moment, that was exactly what I needed to hear.

So yes, in this case I would have felt anxious anyway, no doubt about that at all. Medical procedures worry me for a lot of legitimate reasons, and the last time I got iron infusions it didn’t go well, but I wouldn’t have typically felt this anxious by any means. On a scale of 1-10 I would have normally been a 5, not the 8+ I had been experiencing.

I immediately felt better. It was the hormones. That’s all. I have no doubt about that now that I have had some time to think about it (and my period has ended.) It was horrible timing, but there you go.

Could I one day develop horrible anxiety or depression or something else that has nothing to do with a hormone imbalance? Absolutely. Anyone could, but also, my paternal grandmother, father, and sister all had/have depression; my mother and several of her first degree relatives have anxiety. But that also doesn’t mean that every instance I experience is the sign of something chronic. It could just mean that my hormones are temporarily messed up.

Let’s face it, odds are good that I will eventually develop a new chronic illness. It could be physical or mental, and either way, I will have to deal with it. I worry about both, because I feel like I can’t handle anything else, yet I have felt that way before and have somehow managed to handle each new thing. For now, though, all I can do is keep trying to deal with my current health problems the best that I can, while attempting to not worry too much about what may or may not come in the future. And reminding myself that when I find myself feeling overly-emotional, it’s probably due to my hormones.

Leave a Comment » | Expectations, Frustration, Healthcare, Raves, Support, Symptoms, Unpredictable | Permalink
Posted by chronicrants

« Previous Entries