Summer hibernation

July 31, 2016

When you have chronic illnesses, your body overrides the calendar. At least, mine does.

When summer rolls around here in Boston, everyone starts going outside more. They’re biking, hiking, swimming, or just strolling around. There are out concerts, outdoors Photo 1picnics, and ourdoors festivals. People stay outside as much as possible. Except me.

Then winter comes, and people are staying indoors (unless they’re skiing) and avoiding the cold and the snow. Except me.

Unfortunately, I’m on an opposite schedule. I love the long daylight hours of summer and the sidewalks that are clear of ice, but my body just can’t handle the heat and humidity. My pain gets worse, my fatigue gets worse, my stomach gets upset. I just feel crappy overall.

But winter is different. I hate the 4pm sunset. I can’t stand the snow and ice that make it hard to walk around. But I feel so much better! I can breath better. I have more energy and less pain. Life is better! Except for my social life, that is.

Because while everyone is going out now, they’re doing things that I simply can’t do. Even 2015-02-10 15.16.52the indoor things are a problem, because with the worse symptoms, it’s hard to get places and do things. In the winter I’ll be able to do more, but there won’t be anything to do – everyone else will want to stay home. I’ll invite them out, like I do every winter, and they’ll turn me down, like they do every winter. I don’t entirely blame them. I understand the desire to spend a snowy Saturday at home with a good book and some tea. The thing is, though, I have to make up for my lost summer months! And I need to get out while I can, before summer comes around again, all too soon.

I’ve written about this before, I’m sure. Every winter I’m frustrated when everyone stays in, and every summer I’m frustrated that I can’t go out.

Now it’s the latter. Today is a cooler day, but it’s humid, so I’m in more pain. Last week it was hot, so I stayed near the air conditioner. I miss people. I miss the outdoors. I miss taking a short walk. I’m an introvert and I do well on my own, but after 3 days, I want to be around other people. And I’ll be honest, I’m sick of my living room.

Sometimes I feel bad about complaining, but I know that many of you know exactly what I’m talking about. And anyway, this blog is called Chronic Rants, after all!

2 Comments | Fatigue, Frustration, Isolation, Limitations, Pain, Rants, Symptoms | Permalink
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Exactly the same and completely different 5 years later

July 27, 2016

birthday-cake-1320359_1280Happy birthday to us! Last week was the 5 year anniversary of Chronic Rants. And when I look back, it’s hard to believe how much has changed and how much has stayed the same over the last 5 years.

I still have the same symptoms as I did then, it’s just the severity and frequency of various symptoms that has changed. I no longer work full time at an office, but I am trying hard to start a small online business that I can do part time from home. I still encounter all sorts of ableist bullshit, though it’s usually in different ways than before.

I suppose the biggest change is my perspective. 5 years ago I was struggling, but I assumed that I would continue working. I assumed my health would continue to slowly get worse. Little did I know that just a few short months later I would be leaving my job for a “temporary” break that would become permanent. I had no idea my health would get so much worse so fast.

But this blog has also helped to change my perspective. Writing about my illnesses has taught me a lot. Talking to you through emails and comments has taught me more.

I stand up for myself even more than I did before.

I am more aware of other illnesses, other medical systems, other cultures surrounding illness and disability.

There are many chronic illness blogs out there. I read a few before I started writing my own, and I have found many more over these last 5 years. The online communities are so important for all of us.

Now I wonder where I’ll be in another 5 years. Will I have finally found my fur baby? (I’m really hoping that will happen in the next year!) Where will I be living? How will my health be? Will I be able to travel again? Will I be working? Will I be on benefits? Which symptoms will be bothering me the most? Which will be worse? Which will be better? I have so many questions, and all I can do is work to push my life in the direction I want it to go and hope it goes at least a tiny bit according to plan.

Thanks for joining me on this awesome journey!

6 Comments | Expectations, Milestones, Raves, Symptoms, Unpredictable | Permalink
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The pain of going to the movies

July 23, 2016

I think I went to the movies once last year. Or maybe it was the year before. When people ask, I say that I don’t like going to the movies because of the cost, or because there’s nothing good to see. Those things are true, but they aren’t the real reason. They’re just easier to talk about.

The truth is that even when there’s a movie I really want to see and someone else has offered to pay, I still decline. Because no matter how good the movie is, it won’t be worth the pain of seeing it.

To be fair, I haven’t tried the new reclining seats yet. Maybe those would be better. But regular movie theater seats are very uncomfortable. Plus, there’s the problem that I have to sit in one spot for over 2 hours!

Friends have suggested that I sit on the aisle so I can get up during the movie, but I can’t imagine that going well. The people around me would not be too happy if I was getting up, walking around, and stretching during the movie, and I wouldn’t blame them! I could sit in the back row on the aisle…. but only if the seat wasn’t already taken. I’d have to arrive really early to be sure. That would mean even more time in the theater.

And again, it’s just not worth it. Sure, I could arrive really early and sit in the back row on the aisle, even if the people I was with didn’t want to sit there. I could get up during the show to stretch and walk around. I could leave the theater and walk up and down the hallway. I would miss parts of the movie. I’d be distracted. And in the end, I’d still be in pain. So please remind me, why exactly would I want to do this? What would I gain?

I have missed a lot of “great” movies in recent years. And I don’t regret it at all. When I think about what’s missing in my life, “going to the movies” isn’t anywhere on the list. It doesn’t even come to mind. When I think about the things I’d like to do in the coming months or years, again, “going to the movies” isn’t on the list. There are too many other things I’d rather be doing.

I do watch movies, though. Sometimes I watch them on tv. I have a lot of dvds that I rarely even find time to watch. I can get movies from the library.

The difference is that I can watch them all from the comfort of my own home. I can pause them when I need a break. I can get up and move around as needed. I can sit more comfortably. I can reposition myself as needed. I can stop halfway through and finish the rest the next day. This all makes it totally worth it.

But going to the theater? Not at all.

[Side note: I’m going to the theater tomorrow to see someone I care about perform the lead in a play. I know I’ll be in pain, but I believe it will be worth it. Wish me luck!]

What about you? Are you able to go to the movies? Is there something similar that you skip out on altogether because you feel it isn’t worth it, even though people insist you should try anyway? Please comment and share your experiences!

Leave a Comment » | Expectations, Frustration, Isolation, Limitations, Pain, Rants, Relationships: Family & Friends & Dating & Sex | Tagged: , , | Permalink
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Missing fresh air

July 18, 2016

I hate summer. I do. I hate it with a passion. Really, though, I just hate the weather.

Like so many others with chronic illness, my symptoms flare in hot and/or humid weather. That means I feel worse when the weather turns. Air conditioning helps. It doesn’t prevent or fix the problem, but it does cushion it a bit. So I spend a lot of time indoors with air conditioning.

But that’s incredibly limiting. I haven’t left my apartment in 2 days. Before that, I hadn’t left in 2 days. I used to stay home for days at a time because I felt like shit. That sucked. This simply sucks in a different way. I feel decent enough that I’d like to get outside. And at the very least I’d like to get some fresh air. When I feel lousy in October and can’t leave the house, at least I can open a window!

But now if I open a window the air is thick and stale and unpleasant to breathe. So I keep them shut. I go from my apartment to my car to a building to my car to my apartment and feel like I haven’t really gotten any fresh air at all. And really, I haven’t.

I shouldn’t complain. I’m really very lucky. This is the least horrible I’ve felt in a summer in many years. And at least I have air conditioning in part of my apartment! I am super grateful for that!!

Still, I’m frustrated. I miss going outside. I had been working hard to exercise more and I was taking walks just about every day. Now, I’ve probably taken 2 walks in the past month.

I’m counting down. I figure the weather should improve enough that I can open windows and go outside again in about 2 months. 2 months. 2 long months. In the meantime, I’m texting with my friend with chronic illness, who are also trapped indoors. Maybe I should invite them over. At least then we could be trapped together.

Leave a Comment » | Expectations, Frustration, Isolation, Limitations, Rants, Symptoms | Permalink
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