Struggling to endure

December 6, 2017

Last week was a really good week. And that made Sunday so much harder to deal with.

2017-11-29 15.05.34

First I took a long walk around beautiful Walden Pond (and took this photo), stopping a bunch of times to admire the view. It was unseasonably warm, and sitting down to watch the water was lovely. I was able to clear my head and figure some things out.

I made plans. I worked through ideas that had been weighing on me. I made some tough decisions about my finances and my health. By the end, I was super excited to get started! I walked about 2 miles total and felt ok afterwards. I rested that evening, but that was it.

A few days later my mom came to visit. After a lovely lunch, we took a walk in a wooded area. The sign said it was a 1 mile loop, and that seemed ok to us. Well, I don’t know what went wrong, but the path never looped. We eventually made it back to the car, but we walked about 4 miles. I was surprised I felt so good afterwards. Tired, but good. Hmm. Maybe this was a new trend?

The next day I hung out with friends and had a wonderful time. I got home later than I expected and was too tired to go out to a friend’s house that night like I had planned. Too bad. I really wanted to go, but I knew that resting was the right move.

It had been such a fabulous week. I exercised, got fresh air, got clear on a new mindset, spent time with friends.

And then it all changed. I spent all day Sunday feeling run down. I never left my apartment. I cancelled all of my plans for the day. This sucks, but it isn’t unheard of. And I did a lot this week, so I couldn’t complain, right? I trudged through the day, mostly reading a novel and wishing I could do more.

That would have been ok. It would have been disappointing but totally fine. If only that was it.

Sunday night I got really nauseated. Sometimes I know what causes the nausea, but usually I don’t. I tried Pepto Bismol, which usually helps, but this time it didn’t. I tried medical marijuana, which usually helps, but this time it didn’t. The nausea was really bad. My pulse was racing (114 while I was still sitting) and I felt bad all over.

Over the years, nausea has because an emotional trigger for me. I don’t know why it has, when the pain hasn’t, but it just has. So as usual, I started thinking about how horrible this is, and when will it end, and why won’t it ever go away. Yes, I have these episodes a lot less often now that I’m off gluten, corn, and a couple others triggers.

But why does it still happen? Was it something I ate? Something I did? A delayed reaction to the 4 mile walk 2 days before? How will I handle another 50+ years of this? Why did I bother to make plans? Obviously it was stupid to think I could ever get off of benefits and support myself. I should just stop trying. Then I started thinking about how it might be easier to just kill myself and end this. Except that would be very upsetting to my family and friends. I couldn’t do that to them.

I started having those thoughts a few years ago. I know it’s temporary. I’m not too worried, because I only have them when I’m curled in a ball on the floor, too nauseated to do more than stagger to the toilet occasionally. I have never gotten to the point of really wanting to kill myself but even if I did, I wouldn’t be able to until the worst of it had passed, and I never think about wanting to die except when I’m in the worst of it.

So all these thoughts were floating around in my head, and then something strange happened: I started to cry. And cry. And cry. Before I knew it, I was sobbing. Big, ugly sobs. I couldn’t stop crying. I thought I should call someone. (If you’re new to this blog, I live alone.) I ran through a mental list of awesome people in my life, and finally decided to call a friend who lives in my apartment complex. I asked him to come right over and he did. I didn’t explain, but he must have heard it in my voice, because he showed up with his dog, saying the dog was for therapy.

The dog, of course, immediately started to nuzzle me and lick me. He’s that kind of dog. Very sweet. But what I really needed was a hug and some understanding, and I got that.

We sat on the floor while I cried and talked. I always sit on the floor during these spells – for some reason, it just works for me. I cried myself out and we just sat there for a while. Then for some reason, I started crying again. Still, having someone there was extremely comforting.

Eventually I wore myself out. My friend and his dog left (he mentioned leaving the dog, but I was too weak to care for him.) I fell asleep on the couch to an old movie that I often watch when I don’t feel well. I woke up less than an hour later and found the nausea had subsided enough that I could drink a little water. Lots of diarrhea and lots of crying can really dehydrate a person. Then I stumbled to bed. I slept fitfully, but got through the night.

Monday was a bust. I cancelled plans and ate almost nothing. But it didn’t get that bad again. Tuesday was better, and I even left the apartment. And today is better still (though it’s after noon and I’m still in my pajamas, so it’s not fantastic – I try to get dressed by noon every day when I can.)

So why am I sharing this? I’m sharing it for a few reasons. For one, amongst my friends with chronic illness, I’m often seen as the strong one. Strangers online (both through this anonymous blog and under my real name) say that I’m a role model. I have my shit together. I’ve got a good handle on all of this. I work my butt off to take care of my health, research new treatments, find the best doctors and practitioners. That’s all true. But that doesn’t mean I don’t have really bad times, too. I think we all need to remember that the people who seem to be great probably have bad times behind closed doors where we can’t see them. It’s important not to idealize people, but to see them as they are.

It’s a reminder that we all have our struggles. We struggle, and then hopefully we have better days, too. We don’t need to assume someone is perfect in order to have them as a role model.

I’m not perfect. I’m still continuing to fight every day for the best health possible. I want to believe that one day those episodes will end. Until then, I will just keep on trying. Because what else can I do?

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Reunion surprises

November 27, 2017

As so many people do this time of year, I recently went to my high school reunion. It was WEIRD! Of course, it was weird in the obvious ways (That person knows who I am? How could that person have forgotten me? Wow, she looks OLD! I don’t even remember him.) And then there were some chronic illness-related surprises. I thought I’d share a couple of them with you today.

First, there was my own perspective, which surprised the hell out of me. For the reunion 10 years ago, life was pretty good, if you didn’t count my complete inability to get into a healthy romantic relationship. But the rest was good. I was able to go to the reunion and talk about my good life.

Five years ago I was miserable. If you scroll through the archives for this blog, you’ll see that I was NOT doing well health-wise. That had a bit emotional impact, too. I was fighting to get disability benefits. I didn’t want them, but I needed them. Unfortunately, I was deemed “too healthy” for them. Fuck that shit. I felt horrible. I was house-bound multiple days every week. I didn’t think I had the energy for a reunion, and even if I did, what would I say? I wasn’t dating anyone, I wasn’t working, and the future felt bleak. Blah. I stayed home.

This year was different all around. First, I’m feeling well enough to attend a reunion! Ok, maybe not every day, but I rested up in advance and I managed it. I’m doing some very part time work, and when someone asked what I was doing for work, I mentioned that. There was no need to say it was part time. I talked about it like it was a full time job, because why waste time on details. This many years out of school, most of my classmates are married and have kids. I was one of the only ones who was unmarried. But I was ok with that. I mentioned to someone that I was writing a book, and when he asked about the topic, I said it was about chronic illness. I didn’t bring up my health stuff otherwise, and I didn’t dwell on it, but I also didn’t hide it.

I caught up with people and had a nice time. Because you see, I went into this reunion not trying to impress anyone. I didn’t care what they thought of me. Sure, there were a few people I wanted to reconnect with, but most I didn’t even bother to talk to because I didn’t care to find out what they’d been up to. If they asked me, then I answered, but I never worried about them judging me. For one thing, I figured most of them would be more worried about others judging them than about passing judgment. But also, what do I care what a bunch of people from high school think about me now?

My own attitude was perfect. It was freeing. And it shocked the hell out of me.

But there was another surprise. Over the years, I have become Facebook friends with a lot of former classmates. Facebook is weird. We’re not friends now, we weren’t friends then, but we’re connected and seeing things about each others’ lives. Go figure.

I write about a lot of stuff on Facebook: politics, cute dogs, crochet, my small business, and of course, chronic illness. Sometimes I share funny memes. Sometimes I share poignant blog posts. Other times it’s news articles. And occasionally, I write personal essays.

So I’m at the reunion, and this guy I wasn’t really friends with in high school, though we did share a few classes, came up to me. We’re Facebook friends now, but haven’t spoken to each other since the last reunion I attended, 10 years ago. He came up to me, looked me in the eye, and said he liked my writing about chronic pain. It got to him. Then he told me about a friend who was recently diagnosed with MS.

Of all the things I expected to happen at the reunion, that wasn’t one of them. This guy I didn’t really know told me that my writing about chronic pain had an impact on him. I was touched. And very surprised.

You see, we don’t know who will be impacted when we speak honestly about our situations. There’s a lot I don’t share on Facebook – they don’t need to know that I’m on food stamps or SSDI. They don’t need to know my embarrassing stories. But what I do share, I share honestly and from the heart.

This reunion was nothing like what I would have expected. It was fun and loud and interesting. And most surprising of all, my chronic illnesses were present, but not over-powering. That’s something that I hope to continue.


Forgetting when pain was scary

November 13, 2017

A friend mentioned that it’s frightening to wake up in pain. I paused, not sure what she meant for a moment. Then I remembered back to when waking up in pain was scary. That feels so long ago.

Don’t get me wrong, sometimes it’s still scary. It’s just that that feeling has become rare. After all, when I’m in pain all day every day, why would it surprise me to be in pain at night?

My friend was referring to a different kind of pain. She is pregnant, and sometimes wakes up with horrendous leg cramps. Before the pregnancy, she only had pain the way most people do: if she injured herself. So this is unusual. And we humans often respond to the unusual with fear. It makes sense from a survival perspective. And pain is a bad thing – it’s telling us that something is wrong. So again, it’s natural to have a negative reaction to it.

The thing is, when you’re in pain all the time, your survival instinct learns that this isn’t a threat. You can’t be always worried that something is wrong because it will wear you out.

Occasionally I have a burst of scary pain in the middle of the night. Usually, it’s a new or uncommon pain, and that’s what makes it scary. More often, it’s my same old pains. At their usual levels, I sleep through the pain; I learned to do that when I was 17 years old and thoroughly exhausted from the sleepless nights.

When the pain gets worse, I often wake up, think “that sucks,” move to a less painful position (if possible,) and go right back to sleep. I’m aware of it, but I don’t think much of it. It’s not scary at all. Even when the pain is bad enough that I can’t get back to sleep for a while, I don’t feel fear. Annoyance, frustration, and sometimes anger for sure, but not fear.

It has been so long since pain itself has been scary, that I forget what it’s like. Now when pain scares me, it’s not the pain that I find frightening, but the unknown cause and the fear that it could last the rest of my life, as so many new pains have. Will this ever go away? Will it get worse? Will it stop me from doing things I love? Those are the fears. But when I know the cause and that it will end, there’s no fear. My body’s instinct has shut down when it comes to pain, and I wasn’t even aware of it happening.

It’s easy to see the many ways that non-chronically ill people don’t understand what we go through, but it’s also true that we don’t understand what they go through. I don’t want to diminish my friend’s experience simply because I am in pain more often and have learned to deal with it, because my pain comes with a bunch of other (arguably worse) symptoms, and because mine pain will never go away. Yes, I would rather be in her position, but that doesn’t make it easy for her. Her natural instincts are still intact, and possibly heightened because she is pregnant. She is dealing with changing hormones and a changing body. That doesn’t sound easy to me.

My point is simply that it’s easy to shrug off what others go through as being no big deal, but I still try hard to have sympathy and empathy for them, as much as possible. Just like I want others to have for me.

This conversation happened weeks ago, but it has stuck with me: the confusion I felt (people wake up feeling scared of pain?), the realization of how much my perspective has changed, my instinct to shrug off her situation, and the awareness that that would be a crappy thing to do. Writing this is my way of reminding myself to keep that awareness. Because everyone’s pain is a problem for them, and that’s something we can all relate to.


Defining “affordable”

November 1, 2017

Only a few people know that I live in “affordable housing.” It’s not something that I want to publicize because of the stigma involved. One friend recently asked me what my rent is, and was shocked at the answer.

That’s because it’s not all that “affordable.”

And it’s about to get worse.

There are different types of “affordable housing.” The kind I live in works like this:

  • I live in an apartment complex.
  • At least 10% of the units need to be part of the “affordable housing” program so that the developers/owners get tax breaks.
  • The rents are set by the state, based on my region. It’s based on a percentage of local earnings or housing rates or something. I’m not sure, and it doesn’t really matter, because it works out the same way.
  • Every year, the state determines how much rents will go up in my region.

As my lease is coming up for renewal, I filled out the 25-page questionnaire that reminded me of the colonoscopy I once had. They need A LOT of information. I have to account for every deposit into my bank account so they know my income is within the affordable housing limits. Cash a check from my parents? That counts as income. Get a job? That counts as income. Sell shit from my apartment? That counts as income. It’s invasive and unpleasant, but I do it so I can live here.

When they gave me the form, I was also told when next year’s rent will be. It’s a lot. Cheaper than what my neighbors in this complex pay, but a lot. Over $1400, not including utilities. Now I live in the Boston area, so rents here are high. Still, this is tough for someone who isn’t able to work full time. (Actually, my income is below their minimum requirements. The only let me move in because I have enough money in savings so assure I can cover my rent. Sadly, a lot of people earn too little to qualify for “affordable” housing!)

The increase bugs the hell out of me for one simple reason: it is a 5% increase! Yes, my rent is low compared to my neighbors, but 5%!

Rents in the area have been skyrocketing for years. My social security disability payments will not go up at all this year. I get the maximum SNAP (formerly food stamps) benefits, and this year they went down by $2 per month because the maximum amount was lowered. None of my other benefits are going up. And let’s say I was working. I might be lucky enough to get a 2-3% raise. Maybe, and I mean maybe, a 4% raise. Maybe. But no one gets a 5% raise.

The cost of food is going up. Housing costs are going up. And benefits are going down. Politicians are saying that these programs cost too much, and they’re right. But instead of finding a way to fund the programs or fix the system, they are reducing benefits to people who need them.

And I am one of the lucky ones. I have enough money in savings to cover my costs for a while. My part time work covers some of my expenses. My parents help out a bit. It all works out. Sure, I almost never get to spend money on fun things, but at least I’m getting by.

I was telling someone that the waiting list for Section 8 housing is now 8-10 years. I am told I should expect to wait another 3-4 years to get into the program. Of course, I was told that when I signed up 4 years ago. She asked what people are supposed to do in the meantime.

And that’s the catch. The “safety nets” only work for people who aren’t truly desperate for them. Yes, people who are homeless get moved up on the waiting list for Section 8 (which is one reason why I get pushed down the list.) But it’s not enough. Someone shouldn’t have to be homeless before they get help.

These things are decided by people with good jobs earning steady paychecks. They presumably can pay for housing and food from those paychecks. So maybe they simply don’t understand what “affordable” means? I’d rather think they don’t get it, than that they don’t care.

Because raising rents based on what the community is earning or paying might sound good in theory. But a 5% rent increase is a lot for someone who wasn’t making ends meet before, and isn’t getting any sort of increase in their own income.

And I’m one of the lucky ones. What does that say about our system?


Fed up with fear

October 24, 2017

I remember the “old” me like it’s someone else. Someone else who took risks. Someone else who moved all the way across the country to try something new. Someone else who traveled overseas alone. Someone else who went scuba diving with sting rays despite her fear of open water (and yes, I was terrified of the open water! I was happy with the sting rays. Go figure.) Someone else who simply did things.

Grand Cayman Underwater 24

My hand, petting a sting ray’s nose. It was softer than I expected.

But no, it was me. Me before I felt this sick and tired and in pain all the time. Except not really. My nausea was much worse back then. The pain was just as bad (or worse), simply in fewer parts of my body. But the fatigue wasn’t the same. The food limitations weren’t so strict. The knowledge of how sick I was hadn’t reached me yet. I figured I was ok, just with pain and nausea, and so I did things.

And now I don’t.

I haven’t been on an airplane in almost 7 years. I miss travel, but I don’t do it. What’s the worst that could happen? I hate to think about it. But would it really be all that bad?

Why don’t I try new things that are fun and exciting? Sure, I do new things, but they’re boring things. I’m writing a book. I tried a new group through Meetup. I have started dog sitting. I might enjoy the things, but they don’t open me to exciting new experiences. They don’t expand my view of the world. They aren’t like scuba diving with sting rays.

For a long time I have been frustrated by feeling like I couldn’t do things. Now I question if maybe I could do those things, but my fear is what’s holding me back. I get different opinions from my doctors. No one tells me sure, it’s no problem if I want to fly to England to visit a friend there. But they also don’t tell me it’s a horrible idea and I shouldn’t consider it. I get a lot of, “you could probably do it if….”

And then I wonder if my fear is rational. I’m worried about having a lousy trip because I feel horrible the entire time. It seems like a waste to spend a lot of time, effort, and money on a trip that I won’t even enjoy. But I could risk that. It’s not what’s ultimately holding me back. No, what’s holding me back is a fear of setting back my health.

If you have been following this blog, you know that 6 years ago, I was struggling, but getting by. I worked a full time job and sometimes went out after work. I liked a fairly “normal” life. Then things got so bad that I was on bed rest 3-5 days a week. Now I am doing much better than I was a few years ago, but no where near well enough to work a full time job. I can’t even manage a part time job. Still, things have been slowly improving. Doing something big and exciting could set me back. And a backslide could take years to recover from. I’m scared to risk that!

And let’s be clear, I’m not only talking about travel. I would love to go ziplining locally, but what if I injure myself, or my adrenals can’t handle the excitement? I want to go to a party and stay out late and have fun, but whenever I try I feel horrible for days afterwards, sometimes weeks, so now I’m scared to do it anymore. I want to try a new type of food that’s free of gluten, corn, and the other foods I can’t eat, but what if it makes me sick? I could go on and on.

Some of these are reasonable and I should avoid them. But others….. am I letting fear hold me back too much?

Fear has it’s place. It protects us from doing things that will hurt us. But right now, I wonder if it’s stopping me from experiencing great things that I will love. Things that will make me happy. Because what’s the point of life if I’m not experiencing it? Then again, what’s the point of life if I’m always making myself miserable?

I don’t have an answer to these questions, but at least I have gotten to the point of questioning my own fears and whether or not they are valid. I’m frustrated that I don’t have answers, but I am glad to be asking the questions.

Maybe one day I will be able to answer: are these fears reasonable?

If you have dealt with similar fears, how have you handled them? Do you take the risks, or avoid them?


The power of a hug

October 14, 2017

Somehow, I did it. Despite the crappy weather that makes me feel horrible, I managed to not only survive the short weekend with my friends, but to enjoy it!

Ok, it wasn’t all great. I did feel like shit part of the time. But having friends there made it easier to handle in some ways.

Of course, having friends there also made it harder to handle. They went on walks when I couldn’t, and while someone was always hanging out at the house with me, I know they limited themselves to do it. I wanted to be carefree and have fun, but life isn’t always that way.

Not that the others were carefree. One was frustrated with a spouse, another had job worries, etc. You know, life. It’s easy to forget about that stuff when you live alone and can’t work, but health does not guarantee an easy, stress-free life.

So there we were on Saturday night, having a lovely dinner, when it hit me. Symptoms. Fuck.

I went to lay down on the couch. It was an open space. No one could see me because the back of the couch blocked their view from the dining room table, but they knew I was there, and I would sometimes speak up to join in the conversation as they cleared the dishes and put away food. I was nauseated and in pain, not that they knew what my symptoms were. They just went about their evening, because they know that’s what I prefer. No fuss.

And then it got worse. Resting on the couch wasn’t enough. I found myself breathing hard, face pressed to a pillow, willing myself to feel better. I wanted to have fun with my friends. I didn’t want them to know what was going on.

It’s lousy that we have this stigma in our society. These are my closest friends, but I didn’t want to tell them what was going on because I didn’t want to sound whiny, or like I was trying to make a big deal out of nothing.

How ridiculous. How common. How sadly natural.

And then suddenly, as if she knew, one friend came over, leaned over the back of the couch, and asked earnestly if she could do anything for me. I said no, while at the same time, wishing I could ask for a hug. She’s not the huggy type, and I felt ridiculous. Still, her asking was like a hug in a way, and it suddenly brought tears to my eyes.

I never cry when I feel bad like this. It wasn’t that bad, on my own scale of suckitude, after all. But having someone care to ask made me emotional. I’m not used to that. Usually when I feel horrible like I did that night, I’m at home. Alone. With no one around to even be aware that something is wrong, much less to offer help.

Then another friend came over and simply gave me a hug. And when I let go to pull back, she held on. She kept hugging. She hugged and hugged. And it felt amazing.

The next day I pulled her aside to tell her how much that hug helped. But in the moment, I just felt it and enjoyed it.

Amazingly, I started feeling better right after that. Well enough to at least get up for some more medical cannabis. That helped some more. And then, suddenly (though not really suddenly at all) I was able to get up and move around. Ok, my knee still had shooting pains, so I wasn’t walking well. I had to sit with my leg up for the rest of the night. But the nausea went away. The pain because bearable. And my heart felt happy.

Because for once, friends were there to offer help and give me hugs. And that made all the difference.

 


Painful weather, like it or not

October 5, 2017

It’s October in New England, but you wouldn’t know it if you didn’t look at a calendar.

Every summer I count down until the third weekend in September. That’s when I know the weather will have finally shifted for good, and I’ll be feeling less pain, less fatigue, and less nausea. It’s truly a magical time.

But not this year.

This year we had cooler weather in August, and I was grateful for that, but I also knew it wouldn’t last. September was up and down. But surely October would be my time, right? Not so much.

When you have chronic illness, nothing is simple, and the unpredictable symptoms, flares, and other issues can make life hard to plan. Still, we do our best. For me, that means making more plans in the fall and winter, when I know I will feel better.

That’s why, even though a “simple” weekend away with my best girlfriends is incredibly hard, I felt I could do it if it was in the fall. My friends are understanding, and were perfectly happy to avoid planning anything in September, just in case. They get it. Every time we’ve had cooler, less humid weather, I get text messages and emails from friends saying, “This is your kind of weather! I hope you’re feeling up to enjoy it.” And I love that they understand.

So we planned for “safe” October. Who could have known? This isn’t our typical cool, crisp, wonderful New England autumn.

Thankfully the temperatures are cool enough, though way too warm for this time of year (upper 70s?!? Are you fucking kidding me?!?) My problem is the dew point. It’s supposed to get close to 70 this weekend! Even healthy people find that uncomfortable and for me, it will be near torture. But what can I do? The house we rented doesn’t have air conditioning – after all, none of us thought we’d need it. Higher on our list was finding a house with a working fire place. Last year we did this trip later in October and it snowed. We had a lovely time sitting by a roaring fire, and wanted to repeat that experience. If only.

I am in pain already, and it’s only beginning. Well yes, I’m always in pain, but this is worse, and I know it’s from the weather. My toes are swollen and painful. My knee is swollen and so painful that it’s hard to walk. My neck hurts. Everything is just wrong.

But I won’t stay home. I have been looking forward to this trip for a year. It is my one chance to do this. I will NOT give it up!

I will bring the medications that I can. I will be careful how I eat. And I will block out a lot of extra recovery time when I return. Still, I know this is going to be really rough. I will be in pain, nauseated, and fatigued. Thankfully, I will be surrounding by wonderful women, women I have known most of my life, the only non-relatives who knew me before any of my symptoms began, women who have always been supportive. And maybe most importantly, women who have always made me laugh, even at the worst of times.

So wish me luck. Because I want to be able to enjoy this weekend as much as possible. If only Mother Nature would cooperate.


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