Why do you judge how I use my food stamps? An open letter to “news” writers

October 29, 2014

Dear Judgmental “News Writer,”

Since I’m too sick to work, my financial situation isn’t so great. So I applied for SNAP, formerly called food stamps. A couple weeks ago I got the letter stating I’d received the benefit. I went to the grocery store and, lo and behold, food stamps covered everything I bought, just like they’re supposed to!

But apparently, this is evil and will destroy our society. Or at least, that’s what you seem to think.

As I mentioned a couple weeks ago, I wasn’t sure what I could buy with food stamps. Toilet paper? Toothpaste? Vitamins? No, no, and no, as it turns out. The SNAP web site answered some of my questions, but not all of them. So I turned to Google and typed in a few search terms. What I found was horrifying.

10-29-2014 10-58-16 AM

This screenshot is from the first page of search results. The first few items were all government web sites. The last one here is a very useful post by a blogger. And the three in between from “news” sources? Oy! I clicked on “11 Things You Didn’t Know You Could Buy With Food Stamps” thinking, oh-so-foolishly, that I’d find some helpful tips. Instead, what I found was an insulting, arrogant, judgmental article about the horrible things people like me buy with food stamps. “5 Surprising Things You Can Buy With Food Stamps” was more of the same. So were several other articles I clicked on. Apparently, it’s everyone else’s business what I buy and what I eat.

I want to pause for a moment to note that “10 Things You Can’t Buy With Food Stamps” is wonderful. It points out that, yes, SNAP benefits are meant for food, but things like toilet paper and toothpaste are necessities that aren’t covered. Take a look when you’re done reading this.

Now, I know that people feel they have a right to say what “their” tax dollars are used for. But that’s not how society works. I don’t get to choose whether “my” tax dollars are used to pay for a war, local schools that I don’t use, or road maintenance that I don’t particularly care about (actually, I do care, but that’s another story.) The idea is that society supports society, and then everyone benefits. So yes, my tax dollars support local schools even though I don’t have children, and that’s ok because one day the children who are educated in those schools will be our police, scientists, doctors, and teachers. You see how that works? Again, we all support each other, and then everyone benefits.

Unless someone is on food stamps or getting social security or receiving some other “benefit,” at which point they’re demonized by society. By you.

Apparently writers like you feel justified in calling out someone who buys a bag of chips or a pastry with their food stamps. Oh the horror! They aren’t being healthy enough! And the “N” in SNAP stands for “Nutrition” so this can’t be allowed! You get that this is sarcasm, right?

So who defines what’s nutritious? Is that sugary cereal you feed your child nutritious? Do you know how much sugar is in a glass of milk? Is there too much salt in a frozen dinner? What about a freshly cooked rotisserie chicken? Oh wait, that chicken isn’t covered by food stamps. Ok, well what about that carton of ice cream you like to dig into after dinner on a hot summer night? Oh, it’s ok when you eat junk food because you pay for it with your hard-earned money, but I can’t eat it because I’m on food stamps? Really? What if you’re a government employee and my taxes pay your salary? Then do I get a say?

And again, who decides which foods are nutritious? Maybe you have hypertension and need to stay off salt, so a mildly salted food is bad for you. But I have hypotension and multiple doctors have told me to increase my salt intake, so for me those foods are better. Then again, sugar is a problem for me, so I need to avoid that, while a small amount of sugar might be ok for you. They say red wine has health benefits, but it’s not covered by food stamps. Maybe that should change. And dark chocolate is good for you so does that mean food stamps should cover chocolate bars? What about chocolate cake? Who draws that line? Should it be you, cocky “news writer”? A doctor? A medical board?

Or, I don’t know, maybe me, the person who is eating this food?

And by the way, what happens when, after years of gorging on unhealthy foods with your hard-earned money and righteous attitude, you get sick? Who will pay for your medical care? Who will support you if you can’t work? And how will you buy food if you can’t work? You better come up with a plan that doesn’t involve any government support or “benefits” because you’ve made it quite clear how you feel about those!

Now if you’ll excuse me, I’m off to have some homemade chicken with apricots, rice, and steamed green beans. Followed by a bag of Cheetos. Because I want them and it’s my choice, not yours.


Re-learning what it means to have free time

October 25, 2014

The thing about not working due to illness is that “free time” is hard to measure. Back when I worked, “free time” meant non-work hours that weren’t dedicated to chores, like cooking or cleaning. It was simple then: either I was working (paid or otherwise) or I wasn’t.

But now I’m always working, in a way. Taking care of my health is more than a full time job. And on top of that, many hours that are “free” are spent feeling too lousy to do anything. I might spend an entire day at home, but I’m in too much pain to sort through these papers or answer those emails or call a friend. I left my job 3 years ago and I’m finally used to not going to a job, but for the first time, I seem to have so-called “free time” and it’s a bit of a shock.

After I left my job I was busy dealing with huge amounts of health research. I read, read more, and reread it all. I joined Facebook groups and Twitter chats. I took books out the library. I found new doctors. On top of that, I was dealing with long term disability, social security, and losing, regaining, relosing, changing, and once more losing my health insurance. There were doctors, lawyers, and more doctors. I changed my diet and tried new medications. It was exhausting. And of course, through it all, I felt like crap.

Finally, the long term disability insurance battle was over, I received social security disability, I got Medicare and Medicaid for health insurance, and I applied for a disabled subway pass, food stamps, section 8 housing, and fuel assistance. Last month, I had finally finished with the paperwork! At the same time, I was temporarily done with my medical research. There was one more avenue to pursue, but first I needed to deal with a few old issues. I had the right practitioners and I was pursing treatments, but only time would tell. Just as I reached this new plateau, I started dating someone and we spent a lot of time together. Then, my grandfather died.

And so now, at the end of October 2014, 3 years after I left my job, for the first time I’m finding myself with free time. The family issues have passed and things are settling at a new normal. The relationship is over, unfortunately. The health research is still on hold. The paperwork is still complete. At the same time, surprisingly (or maybe not?), I’m feeling a bit better these days. And suddenly, I’m able to do more!

The stress has been lifted. The anxiety is gone. I’m making plans for 5 or even 6 days each week! Some days the plans are small: a friend coming over to chat, a doctor appointment. Other days they’re big: going to a party, doing volunteer work for an entire afternoon. Still other days, I stay home and rest. I don’t do too many big things in a week, but the point is, I’m doing them!

Of course, that’s also why my “free” time doesn’t feel so free. I look around my apartment and see a lot of clutter. I have big projects that I’m not working on. I have errands that aren’t being run. I’m so glad to have the time and ability to go out, that I go out whenever I can. And that means that when I’m at home, I’m lucky if I have the energy to write a blog post. (On a side note, I hope to get back into a good writing groove now!) The projects aren’t happening.

It will take some time to find my balance. Things like my social security application were so important, putting them off wasn’t an option. Now I need to find a way to prioritize the things that aren’t so clearly ranked. I know I’ll figure it out. It will just take some time. And in the meantime, I’m so grateful to be having this problem at last!


Why I don’t have a wheelchair, and it’s not what you think

October 23, 2014

The other day I wrote about the freedom of a wheelchair. I wrote about how using wheelchairs allowed me to travel last weekend when I otherwise wouldn’t have been able to, and they also let me get out of the hotel room and have a little bit of fun. But last weekend wasn’t the first time I used a wheelchair, and I doubt it will be the last. So why don’t I have one of my own?

For a long time I didn’t need a wheelchair. It was rare that I had trouble walking, and when I did, I could usually manage to “power through.” As the pain and disability got worse, I occasionally had a friend push me in a chair at the mall, or use a chair in an airport. It wasn’t often, but I did it. But I told myself those were aberrations. I was feeling stubborn. I didn’t want to need a wheelchair.

More recently, as I found myself telling people more often that “I can’t leave my apartment” or “I can’t walk” I realized that the real limitation wasn’t my ability to walk, but my inability to find an alternative. Due to joint pain and instability in my wrists, I can’t use a cane, crutches, or a walker. I can’t use my hands to lean on anything. So when the pain in my feet or knees is especially bad, I’m stuck. I spend days at a time sitting on the couch or lying in bed, and hobbling to the bathroom or kitchen only when I truly have to. I can’t leave my apartment because it involves too much walking. The stubbornness has dissolved as I have been become a prisoner in my own home. But what if I could leave without walking?

Most of my friends think I don’t have a wheelchair because I don’t need one. Some others think it’s because I refuse to use one. They’re both wrong. The reason is sadly simple: money. I can’t afford it.

Let’s say I get a low-end electric wheelchair for $1500. That’s a lot of money, especially for something I wouldn’t use every 20120809_220808day, but I think it would be worth it and I could manage to pay for it. Unfortunately, that’s not the only cost. There are many accessories I’m sure I’ll need, even though I don’t know yet what they are (if you do know, please list them in the comments! I’m trying to get an accurate idea, in case I end up doing this at some point.) And I’m guessing there would be repairs and maintenance or the chair.

Now how will get that chair around? I need a van. Let’s forget for a moment about the extra cost for gas on a minivan (I drive a compact car now.) And let’s ignore the extra money for repairs, since I’d have to get a much older car, with many more miles, than what I have now. Let’s just look at the cost of the van itself. After trading in my current car, I’d probably spend about $20,000 for a used wheelchair van.

So that’s $21,500. That’s a lot of money! And as if that weren’t enough, I need to be able to get to the van. Right now, on the bad days, I can’t walk down the long hall from my apartment to the front of my building, or down the walkway from the front door to the sidewalk. And then my car could be parked a couple blocks away. I should really live in an accessible apartment. Those are incredibly hard to find in the Boston area. These are old buildings. The last time I lived in a place that was built post-1930 was 4 apartments and a dozen years ago when I lived on the west coast. In fact, I’ve only ever lived in 2 accessible apartments. 1 was that apartment on the west coast and the other was a place that I lived in for 1 semester in college. That’s it. Everyplace else has had stairs. Newer buildings are accessible. Newer building are also expensive. Not only would I be paying moving costs, but my rent would go through the roof. This is just not an option. More likely, I would need to move to another inaccessible apartment that involved less walking to get to my car. It would need to have parking, though, so my car would be closer. Chances are, I’d be paying my same rent or more. Probably more.

Still, let’s say I could move with just slightly higher rent, plus moving costs, plus the van, and the wheelchair itself. We’re talking approximately $24,000 for a wheelchair that would be incredibly helpful about 10 times per year. (Each time varies between a few hours or a couple weeks.) This just doesn’t make sense.

So for those who’ve wondered why I don’t have a wheelchair, even though there are obviously days that it would be incredibly helpful, that’s why. It’s about the money. Plain and simple. It sucks, but it’s the reality.

Have you had to give up using a wheelchair or other mobility aide because of cost? What’s your experience with wheelchair use? Are my numbers off in any way? Please comment and share your story!


The freedom of a wheelchair

October 21, 2014

Last weekend I went out of town for a family wedding. As regular followers know, traveling has been tough for me recently. I used to travel *a lot*! I visited family out of state at least 4 long weekends per year (2 of those involved flying.) I spent many

Connecticut trees from a train window

Connecticut trees from a train window

weekends and long weekends and sometimes a week in Maine each year. Then I would take a bigger trip each year, either overseas or to the west coast. If I was in town for 2 months, I’d get antsy. But that was before.

In the last year I have left town only once: to go to a family wedding in NY in July. And I was incredibly sick. My gastrointestinal symptoms were severe and the fatigue was terrible. So you can imagine my surprise when this weekend worked out ok, especially since it almost didn’t happen!

Last week I was in horrible pain. My toes were swollen and painful. I can’t use a cane or crutches because of the instability and pain in my wrists. Prescription painkillers barely help and the side effects are terrible. Cannabis takes the edge off, but that’s it. And I can’t use it on a train. Walking was difficult and painful on Monday, it was horrible on Tuesday, and it was nearly impossible on Wednesday. That’s when I started to question if I’d be able to go on this trip. I cried as I thought about missing the wedding of someone I care so much about. But how could I go?

I talked through every possible stage of the trip with my mother, a friend, and myself. All three of us came to the same conclusions. I needed the pain to improve. The train left Friday morning, the wedding was Saturday night. The dew point was set to drop on Friday, which meant I should feel better on Saturday or Sunday, but would that be enough? How would I navigate the train station? How would I even get there?

Thursday came and went, with pain similar to Wednesday’s pain. Thursday night my boyfriend broke up with me. It was not a good day. A neighbor took out my trash for me, since I couldn’t even make it to the basement where the trash bins are kept. I hobbled around my apartment packing. I rested. I hobbled and packed some more. I cried on the phone to my friends about possibly missing the wedding and about the breakup. I ordered a cab just in case I went, since I knew I couldn’t take the subway to the train station in my condition. I was ready for the trip, but would I be going? I oscillated for hours.

Friday morning at 6:30am my alarm went off. I never feel good when I wake up that early, but I ignored those symptoms and focused on the pain. It was still there, but it was better. Was it good enough? I showered. Could I make it? I dressed. It hurt, but not as much. Would it stop me? I packed my CPAP machine and other last-minute items. How bad would it be if the pain got worse again while I was out of town? Halfway through breakfast I finally decided to go.

I hobbled to the street and took a cab to the train station. There, I got a wheelchair and breathed a huge sigh of relief. The red cap took me right to the train and put my suitcase in the overhead rack. When I arrived at my destination, a red cap was waiting with a wheelchair. I was in pain when I arrived, but it wasn’t too bad.

The next day, the pain was worse again. While my family went out and explored a new city none of us had ever visited, I sat in the hotel room. At first, it was relaxing to read a book and rest. But I quickly got stir-crazy. The room didn’t get great light, and I wanted to get out of there. I called the front desk and asked if they had a wheelchair for guests to use, and they did! I called my mother on her cell, and she and my dad came back for me.

A little while later, we were strolling through a farmers market, sitting in a beautiful park, and then enjoying a nice lunch. It wasn’t fancy. It wasn’t the way I would have explored a new city if I was able to walk. It’s not what I would have done 3 years ago. But it felt so good to get out of that hotel room! I was so happy! The wheelchair gave me a kind of freedom I wouldn’t normally have had, even while I lacked the freedom to choose where I went, since I needed my parents to push me.

Thankfully, miraculously, my prediction was pretty accurate. By Saturday night I was up and about at the wedding. I kept most of my standing weight on my other foot and I sat more than I otherwise would have, but I also danced a bit (well, I planted my feet and wiggled my hips, because there’s only so much you can do when you’re in pain.) I walked around and socialized. I enjoyed myself, to my own shock and pleasure.

The next morning I was in pain again, but it wasn’t as bad as in previous days. Again, we borrowed the hotel wheelchair and my parents pushed me a few blocks away to where the entire family was meeting for brunch. We had a wonderful time!

The return trip went well. Again, red caps took me to and from the train in wheelchairs. I took a cab back to my apartment. It was Sunday, and the pain wasn’t too bad, but it was enough that I wasn’t about to wrestle with luggage on the subway. Yesterday, Monday, I woke up with almost no pain. I went out and ran errands. Today I’m fine. The timing sucked, but thankfully it all worked out ok.

But it couldn’t have worked without wheelchairs. I wouldn’t have been able to manage the train stations. And even if I’d made it down there, I would have been miserable and depressed at the wedding after a day of being trapped in a hotel room. I don’t want to need a wheelchair, but I’m so glad to sometimes have the option of using one when I need it!

Do you ever use wheelchairs as an occasional or part-time aide? How do you feel about it?


Yay for food stamps! Well, sort of….

October 14, 2014

Me: “Great news! I got food stamps!”

*pause*

Me: “Isn’t that great?”

Her: “Um, sure?”

A few years ago I wouldn’t have been excited for food stamps. But things change. They change and we have to go with the flow, and the flow leads me to be thrilled about getting food stamps!

My family and friends are trying to be supportive, but they see this as a bad thing. Let’s face it, there’s a certain stigma that goes along with food stamp benefits. My mother immediately said, “You aren’t posting this on Facebook, are you? Because people can be funny about these things.” That was her nice way of saying, “People can be assholes about someone getting the benefits they need.” She didn’t want me to get attacked online. Many friends have been unsure how to react. Except for my friends in my chronic pain support group, that is. Many of them also have financial difficulties due to their health, so they appreciate how much of a difference this can make. But the others just don’t feel right saying “Congratulations!” for this.

Last month I wrote about missing out on thousands of dollars in benefits because I didn’t know to apply for them. I immediately signed up for Section 8 and am now on the very long (3-4 years) waiting list. I applied for fuel assistance and will find out about that in 2 more weeks. And I applied for SNAP, formerly called food stamps. I gathered papers just 2 days after my grandfather’s funeral because I had already applied and the paperwork deadline was fast approaching. I didn’t want to miss out. When I had looked into SNAP a couple years ago, when my finances first took a dive after I realized I wasn’t going to be able to return to my job, I wasn’t eligible. They had an asset limit of $2000. I had saved up more than that when I worked, so I wasn’t eligible.

Last month, when my friend told me about benefits, she mentioned SNAP. I figured it couldn’t hurt to look it up and, low and behold, they’d changed the requirements! My assets no longer counted against me! I could use those assets to pay my rent, and still apply for SNAP because of my low income. What a surprise! I wondered when that change occurred. Could I have applied a year ago? Two years ago? Wondering didn’t help, but applying would, so I filled out the application and went through the process. And then I waited.

After not leaving my apartment for a few days last week due to feeling like crap, I finally went downstairs and checked the mail. And there it was: a letter stating that I’d been approved and was now receiving benefits! I went to the grocery store the next day and used my new card – and it worked! I got a receipt that included my balance. It was all there.

I keep my grocery costs low, thankfully, and this will just about cover my monthly food bills. They back-dated the benefit to 30 days before my application, so I have that money too. I’ll use it to buy things like toilet paper and toothpaste, if those are allowed.

Can I afford all of my expenses now? No. Not even close. I’m still using my savings to pay for quite a bit. But every dollar helps. And I’m incredible thankful for these dollars. So as much as I wish I didn’t need SNAP/food stamps, as much as I wish I didn’t come close to the eligibility requirements, the truth is that I do need it, so I’m thrilled that I have it!

Do you get benefits? How do you feel about it? How to people react when/if you tell them?

Update: Do as it turns out, I can’t use my benefits for toilet paper and toothpaste. But I’m sure I’ll use them on groceries over time.


…and he didn’t run away

October 8, 2014

Usually when I feel especially bad I avoid people, even people who want to help me. Part of it is that I don’t have the energy to deal with being around people. Even talking is too exhausting. Part of it is that I don’t want them to see me in that state. Sometimes it’s unavoidable, and that’s why several people have seen me when I feel especially bad. But I can count that number of people on my fingers. The other night, though, was probably the first time I voluntarily let someone see me that way.

I mentioned last month that I’m seeing someone. And it’s been going well. It’s been a long time since I’ve gotten this far into a relationship. We’d known each other before so he knew I had some health issues, but it was a vague knowledge, acquired from being in the room while I spoke to others about it. But on our first date, I brought it up and answered some questions. Since then, I’ve answered more. I canceled our second date because I felt too exhausted. Our second second date was just hanging out at my place and watching a movie because I didn’t feel up to going out. He was very understanding. We haven’t been seeing each other for very long, and until this week, that was the worst I’d felt.

The other day a lot of stress and activity caught up with me and I had a BAD day. You probably know the kind. It started terrible and then got worse. I was barely getting by. We had a date planned for that night. We were just going to hang out at my place, but I wasn’t doing well. I spent the morning reading, but that became too difficult. I spent the afternoon sitting on the couch watching tv, but that became too much. I spent the evening lying on the couch, alternating between watching tv when I could and just thinking when the tv was too much. I had emailed him to let him know that I might not be up for getting together. He told me that I could let him know at the last minute. He was completely understanding. And for once, I didn’t feel any pressure at all. I knew that if I canceled, he’d understand. This was so unlike most social situations and was a huge relief!

So there I was, lying on the couch, needing to go to the bathroom for about 2 hours but not having the energy to stand up. And I knew exactly what I wanted. So at the last minute we spoke on the phone and I told him the truth: I wanted to see him, but I wasn’t sure he should see me this way. He asked, “Is this the last time you’re going to feel like this?” and I fought my natural instinct to be vague and simply said, “No.” He responded, “If this is going to work, I have to be able to see you like this.” I was floored. He was right, of course, but still…. I pointed out that since this would happen again, he could see me like this another time, maybe in a month or two when we knew each other better, but he insisted there was no time like the present to see me going through this. And he came over.

It was a bad night. I rallied for a bit around the time he arrived, but that didn’t last long. For a little while I was able to sit up while we talked. We cuddled. He held my hand, which was all I really wanted. He asked about how I was feeling and what caused it and things like that. I explained the best I could. It was hard to collect my thoughts, and he kept having to wait while I tried to form sentences. The brain fog was thick that night. We talked about other things, too. It was a good distraction. Most of the time I had to lie down. I wasn’t just fatigued, but weak. So weak. Most of the time my eyes were closed. Keeping my eyes open was too hard. Processing visual stimuli was too exhausting. So I lay there with my eyes closed and we talked. He offered to help me with household stuff, but I told him that all I wanted was for him to be there with me and hold my hand. And it was true.

It was hard for him. I could see it in his eyes, in his face, felt it in the tenseness of his muscles. I kept checking in with him, asking him how he was doing. He just kept saying he didn’t like to see me in pain. I couldn’t tell if there was more to it than that or not. But it was hard for him, I knew that much. It was especially hard when, in the middle of a sentence, I stopped talking, had trouble breathing, and grabbed my abdomen. The pain was intense. In an instant it had jumped from a 3 to a 7 on my pain scale. It came on suddenly, or so it seemed. My guess is that there were warning symptoms that I’d ignored because of the fatigue. I wasn’t able to look at him during that, so I couldn’t see his face, but I’m guessing it was surprising for him. I’d mentioned pain, of course, but he hadn’t seen it have any effect on me. Not until that moment.

He stayed with me until that pain passed and I said I wanted to go to sleep. Then he left.

He didn’t handle it all perfectly, but I doubt anyone would their first time out. He told some stories that were probably meant as a way to make light of pain and discomfort, but just sounded like he was trivializing it. He didn’t hold my hand enough. I would have loved for him to stay until I was in bed. He wasn’t perfect, but he was pretty damn close. And he seemed to handle it all ok. Still, I was nervous.

I woke up feeling significantly better. My thyroid was still swollen, my adrenals were still struggling. I was fatigued, but not weak. I ate something for the first time in 22 hours. I emailed him to let him know I was doing better, and he wrote right back. He’s a good man, a strong man, and I was almost certain he’d stick around, but of course there was that little niggling doubt. There were the voices of all of those who’d had negative experiences of this type. So I held my breath and waited, and then there it was: he casually brought up our plans for Friday night. As if it was no big deal. As if it was assumed we’d keep those plans. And I guess it was. But what a relief.

So we’ll be going out on Friday. I’m doing better each day, and I think that by Friday I’ll be able to keep our plans to go out. But I know that if I need to stay in, he’ll be ok with that too. Actually, I think he prefers to stay in. I’m the one who’d rather go out! I’m looking forward to showing him that I’m back to the way I was when he saw me last week, before that terrible night. And I want to talk to him about everything, to answer his questions, to take his temperature on this. We all have baggage. I know that. He certainly has his, too. It’s just that mine is very visible and very hard to ignore, and he had to face it early on.

Still, it’s hard not to notice that we have a date for Friday night. So far, he hasn’t run away.


What did you do today?

September 30, 2014

To the uninitiated, it sounds like such a simple question: “What did you do today?” And really, it is simple. It’s the answer that’s complicated.

Some days the answer is complicated because the day was spent dealing with symptoms, but other days the complication comes from a reality that is so different from that of my peers. That’s how it was one day last week.

I’ve started dating someone, and I’m trying a new approach: honesty. Ok, filtered honesty, but I’m trying not to filter too much. The filter is limited to certain symptoms. There’s no need to mention pooping my pants at this stage of the relationship, for example. I’m trying to share everything else. But that gets complicated.

I asked “What did you do yesterday?” in an email this morning and he responded by telling me about getting together with some friends after work. Yeah, that’s what my answers used to look like, too. Not now.

When he asked me last week, I answered honestly: I bought groceries, did some medical research, pulled together paperwork for my food stamps application, and washed a bunch of dishes. I did a few other niggly things, but those were the main ones. Groceries and dishes are familiar to most of us, but medical research and food stamps? Um, not so much. He was surprised when I mentioned the food stamp paperwork (actually, it’s called SNAP now, but whatever.) But when he thought about it, of course he realized that if I don’t have much income coming in, then of course I qualify for and need food stamps. As for the medical research, he has no idea how much time I spend on that. I tried to explain a little bit. He loves that I’ve taken matters into my own hands by doing my own research. He just doesn’t understand how hard it is. He doesn’t know about brain fog. I’ve tried to explain it, but he hasn’t witnessed it (it hasn’t been too bad since we started dating, and I usually hide it well.) Besides, you can’t really understand brain fog unless you experience it yourself. He doesn’t see how exhausting reading can be. He doesn’t know that I don’t just read an occasionally newspaper article – I follow blogs and Facebook groups, I read news articles and web sites. I read entire books from the library. I spend so many hours on this, it would shock him. He’ll learn in time, I’m sure.

And that was just that one day. He hasn’t asked about today yet, but it’s a similar mix: I cooked (ok, I threw ingredients in the crockpot, but it counts, right?) I rescheduled two doctor appointments, I’m writing on this blog that he doesn’t know about yet, I prepared paperwork for my fuel assistance meeting tomorrow, I prepared paperwork for my medical appointment tomorrow, I looked up the best routes to get between the two appointments (I can’t remember the last time I had two appointments in one day!), I pulled my winter clothes out of the closet and packed away my summer clothes, and I rested. I rested a lot. Because all of that was exhausting! I still have so much more to do, but I know it won’t get done. If I can muster the energy, I’ll do my physical therapy exercises tonight. I have done them in a while – not since before my grandfather died. I need to try. Maybe in a few days I’ll find the energy to finish going through my clothes. Right now, my suitcase and duffle bags are are open on my bedroom floor with clothes spilling out of them. My drawers are too full. I have sweaters on top of the dresser because I haven’t found a place to keep them yet. I have pants on the bed that I need to try on. What I don’t have is the energy to deal with any of that.

And yesterday? Yesterday I straightened up my apartment just a bit, did a bunch of dishes, went to a doctor appointment, bought a new winter coat (yay!), and then came home and collapsed in exhaustion. Somewhere in there I also managed to write a blog post about the suckiness of this month and probably do a couple of other things that I have since forgotten about as those memories have been lost in the fogginess of my brain.

And those are just three sample days. Sure, some days I deal with less health-related stuff. But other days I deal with so much more. Friends are surprised when I mention yet another doctor appointment, picking up more meds, or any of the other random acts that I no longer consider unusual. Actually, what surprises them is not that I do these things – after all, they know about my health problems – but my nonchalance. They can’t understand my attitude when I mention getting bloodwork in the same way that someone else would mention picking up milk at the store. But that’s just it. For me, they are the same. Medical care is more than just routine. It’s like breathing.

No, wait, I was wrong. They are different.

I can’t drink milk.

Now it’s your turn. What did you do today? Or on some other typical day? And how to friends react when you mention it?


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