Stretching boundaries, hitting walls

June 21, 2016

Eeek! It’s been almost 2 weeks since I’ve written and I miss it so much! The funny thing is, for the past few days I’ve been at a loss as to what to write, but today I find myself with too 2016-06-12 10.08.47many posts on my mind. The rest will have to wait for another day, because today I want to talk a bit about why I was gone for so long.

I love Massachusetts. It’s a fantastic place to live. But sometimes I just want to get away. I used to travel a lot. Ok, not as much as some people, but it was rare that I was in the state for more than a month or two at a time. Then I got sick. So yeah, that changed things more than a little.

Last month I wrote about my frustrations with not being able to travel. Lucky for me, the states here in New England are small, so I can travel between them somewhat easily. And that’s how I was able to go to Maine this month!

I’ll skip the details, because you’d probably find them boring anyway. The gist is that I stayed in a rented house on the shore with a bunch of family, including my parents, extended family, and 2 awesome dogs.

So I’m sure you’re wondering, how’d it go? Well, it was mixed.

I felt great when I arrived! The drive was under two hours, then there was a lovely boat 2016-06-14 17.25.17ride. I was greeted by family and we all had a nice time and a fun dinner. It was later that I felt horrible. Really horrible. Please-make-it-all-go-away kind of horrible. I’ve felt worse, of course, but this was still lousy.

Somehow, I finally managed to sleep. I slept terribly that night, but I did sleep just enough. I woke up at 5:30am. To me, that’s not morning. Anything before 6am is still night. But I was wide awake, the sun was streaming into my room, and I should hear the roar of the ocean outside my window. It could have been a lot worse.

I spent 4 days in Maine. That first night was rough. There was also a lot of pain. There were a lot of stairs just to get into the house. And I didn’t figure out until 2 days before the trip 2016-06-12 15.15.17that the reason my feet had been hurting was that I needed new sneakers. And there was some family-related stress.

But there were also bright skies and blue ocean. Even the drizzle was lovely. There were jokes and laughter. There was puppy cuddling. There were board games and walks. Sometimes I wanted to go on a walk with folks but I couldn’t. Other times, I could, but they had to slow down for me, or cut the walk short. Once I turned back early. Sometimes I went on drives. And it was all ok.

It was frustrating that I couldn’t do everything I wanted to do. Everything they did. Everything I used to do in the same coastal town when I visited just a few years ago.

On the other hand, check out these photos. I can think of worse ways to spend 4 days!

I was exhausted when I got home. I spent the night resting, watching tv, and checking in with friends. I had to rest the whole next day, too. The following day I felt barely well enough to go out for groceries, then I collapsed on the couch when I got home. Still, the 2016-06-12 19.25.54recovery wasn’t too bad.

I pushed myself. But I pushed myself carefully. I felt crappy some of the time but good most of the time and even great for a tiny bit. It will never be perfect, and right now that’s ok. I’m just thankful that I got to go at all. And I got to sit by the ocean.

6 Comments | Expectations, Fatigue, Isolation, Limitations, Milestones, Pain, Rants, Raves, Relationships: Family & Friends & Dating & Sex, Symptoms | Permalink
Posted by chronicrants

Because I have chronic illnesses too

June 9, 2016

I have a problem setting boundaries. I know this, and I’m working on it, but it’s still a problem. The thing is, I like helping people, and that sometimes gets in the way.

Part of it is altruistic – I like seeing others benefit. Part of it is selfish: when I feel like there’s so much I can’t do in my life, it feels so good to do something that others find useful. But whatever the motivation, I have limitations, just like anyone else. I have limitations of time, ability, and energy. But on top of those, I also have limitations because of my health.

Lately this has come up a few times, and I’m handling it poorly. I know I could do better, but I’m not sure how.

We all have differently limitations and abilities, and that includes those of us in the chronic illness community. One person has more energy, another can climb stairs, another can walk more, another has greater cognitive function. It’s easy to forget that those abilities don’t preclude other limitations. I’ve been guilty of it myself. I see someone who walks a lot, and I forget that while they don’t have fatigue, they do have pain, for example. And now I’m on the receiving end of that.

I’ve been volunteering to help people in my chronic pain support group with a few things. I want to help, but I also have to be careful of my own limitations. I try hard not to commit to doing more than I can reasonably handle. The problem is, sometimes people ask for more. And that’s where the boundary issues come in.

Several times lately, people have assumed that I would do more than I had offered to do. I think they see me having certain abilities, and they forget about my limitations. Then when I say no, they ask why.

I offered to teach an informal class on using Facebook. There are so many great Facebook groups for people with all sorts of chronic illnesses, and I’d even set up a Facebook group for our support group. I knew a lot of people struggled with it, so offering a lesson seemed like a good idea. The problem was that several people said, “I can’t make it to that lesson, so when else can we meet?” I was stunned! I couldn’t give private lessons to everyone! Just that one class was exhausting. I didn’t leave the house for two days after that. But no one saw that part.

Finally I sent around an email saying that I’d be happy to give private lessons on a schedule that worked for me if people wanted to pay me. That ended most of the discussion, though one person still said she couldn’t afford to pay me but still wanted to meet because she needed help. I get that. I often need help that I can’t afford to pay for. So I don’t do it. I simply can’t help so many people. It’s not within my abilities.

I’ve been doing a lot of other tech support for the group. One person asked me to do some things and I finally said no, but that I’d be happy to show her how to do it. She asked why I couldn’t do it. I finally was direct: “Because I also have chronic illnesses and I don’t have the energy for it.” She said she’d find someone else to help.

I wasn’t trying to be rude or difficult or uncooperative. But I think people forget that doing seemingly easy things, like typing into a computer, can be downright exhausting for some of us. It can be painful for others. For some, it’s both. And just because I can do 10 things, doesn’t mean I can handle 11. Just because I can leave the house for 1 lesson doesn’t mean I can handle 5.

Many of my friends with chronic pain and chronic illness have visible illnesses. Mine isn’t visible unless you really look. You might notice a wince, a limp, or a stumble, but most of the time, I look just fine. So in some ways I understand why people forget and expect more of me.

Then again, when it’s someone with a chronic illness who asks me why I won’t do something extra, I just want to shout: BECAUSE I HAVE CHRONIC ILLNESSES TOO! JUST LIKE YOU!

Do you encounter this? How do you handle it? Please comment and let me know your experience!

2 Comments | Educating, Expectations, Fatigue, Frustration, Insensitive, Limitations, Pain, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms | Permalink
Posted by chronicrants

When will I see you again?

May 26, 2016

Every time someone moves away I wonder if I’ll ever see them again. It didn’t used to be that way.

I used to travel a lot. If I was home for a month, I got antsy. If I was home for 2 months I

Maine

That place in Maine

intentionally made plans to get away. Sometimes getting away was a short overnight somewhere nearby and sometimes it was a bigger trip. Twice each year I visited my grandparents in New York. Twice each year I visited my other grandparents in Florida. Once each year I took a week-long vacation for myself. I visited friends. I spent many lovely summer and autumn weekends in Maine every year. And to me, that was normal.

Sure, it was tiring. But it was manageable. I could always rest the next weekend, right? And money wasn’t an issue. I was working then, and most of my trips were really cheap. My grandparents paid for my flights to Florida. I stayed with family and friends almost everyplace I went. I probably spent $500-$1000 on travel each year and loved it all.

020BedouinCamp1

Yeah, I rode one of those

But that was then. This is now.

Now I can’t imagine getting on a plane. I used to fly 3-5 times per year (including business trips) and now I haven’t been on a plane in over 5 years, since January 2011. No matter how I think about it, the idea of flying seems impossible. Maybe, maybe I could manage it if I flew business class. But there’s the money issue, too. I’m not working. $500 is just too much to spend on a plane ticket for a coach seat, never mind the added expense of a business class ticket.

Local trips are also hard. I still visit friends sometimes, but only the closer ones. Even visiting my friends and family in NY feels too difficult. I can’t drive that far anymore (only 4 hours from here.) I want to take the train, but it’s not cheap. And what would I do when I got there? The subway stations all have way too many stairs. It’s a walking city. How could I manage it? Not to mention, if I took the train I wouldn’t be able to bring a lot of food with

Grand Cayman Underwater 24

Me petting a stingray – they’re softer than you’d think!

me, and that makes me nervous. I’d have to cook in a non-gluten-free kitchen! And with all of the travel, I don’t think I’d have the energy to do much once I got there. It would even be hard to get between friends in Brooklyn and friends in Manhattan. If I’d feel so miserable and could do so little, what’s the point in going? And that’s just a short trip to NY. That’s why I haven’t been down there in 2 years, even though one of my closest friends lives there. It’s why I didn’t visit my grandfather in the last year of his life. Thankfully, we had many fantastic visits in all the years before that. (My other grandparents are no longer alive, either.)

I used to love those trips to Maine. My guess is that I could still manage those. It’s a shorter drive and I could bring food in the car. But the house I stayed at was sold and I don’t have free accommodations anymore.

I do still visit friends who are fairly close, but not as often as I’d like. And that’s it. Mostly, I stay in town. I don’t get antsy. I’m too fatigued and full of pain to be antsy about it. Still…. I miss travel. I miss exploring. I miss the new sights. I miss the new cultures. I miss the adventure.

And mostly, I miss my friends.

It hit me again today. A friend, who also has chronic illness, is moving back to her hometown in England. Will I ever see her again? She said I should come visit her and have a nice long stay. I’ve never been to northern England and would love to see it. But could I manage the flight? I don’t know that I could. It’s a sweet offer. I’d love to go. But…

Coincidentally, in less than 24 hours a friend will be here. I haven’t seen him in years. We used to visit each other every couple of years, with me going to him more often because I used to live in that city and I still have many friends there. In fact, that last flight I took in January 2011 was to visit him and those other friends. I miss them all. Lucky for me, he’s coming to visit. But the others, for various reasons, haven’t visited. They keep telling me they’d like me to visit. I try to explain that I can’t, but they just don’t understand. I know they mean well, but their invitations are painful. I want to visit. I’d love to! But I can’t. Not without doing damage to myself.

I’d like to think that I’ll travel again some day. It might not be the same kind of travel that I used to do, but just quiet trips to visit friends would be lovely. I know that other people with chronic illness can do it. Then again, other people with chronic illness can work. They can climb mountains. They can eat whatever they want. We’re all different, and that’s the point. I can do things that others can’t and others can do things that I can’t.

I just wish I could visit my friends.

What about you? Do you travel? How do you manage it? What kinds of accommodations do you use to help with your symptoms? If you have fatigue also, I’d especially love to know how you handle that!

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

When fatigue becomes something else altogether

May 18, 2016

Well this is different. And I’m not sure what to make of it. It’s not bad, and I’d love to just

IMG_20160517_134701

Yesterday’s visit to the shore wasn’t thoroughly exhausting!

go with the flow and enjoy it. But that’s hard when I don’t know why I feel this way. Not knowing why means that I don’t know how long it will last, or what I can do to help it along.

But I’m getting ahead of you here. I should explain.

It’s common to have fatigue with chronic illness. A lot of people say that pain causes fatigue, but that wasn’t my experience. Yes, pain can be tiring, but there’s a difference between “tired” and “fatigued.” If you’ve never felt fatigued, it’s hard to explain. Have you ever had the flu? Have you felt so exhausted and drained, it was like something was sucking the life right out of you? Was it hard to muster the energy to sit up, much less walk across the room? That’s fatigue. That’s what I felt many days. But I had pain for 8 years before that ever started. So it wasn’t only from the pain.

I’ve had a lot of time to think about things, and I believe the fatigue started after a bout of mono when I was 20. It was minor back then. It got worse and worse over the years, but it wasn’t until my early 30s that it became disabling. I couldn’t work at all – even the idea of part time work was laughable. Some days I couldn’t shower. Many days I couldn’t leave the house. It was bad.

If you’ve read this blog for a while then you know I’ve worked hard to fix the fatigue. It’s improved bit by bit, not all at once. Each thing helped. My new diet helped. Reducing pain helped. Improving sleep helped. Various supplements helped. Changes to my lifestyle helped. More diet changes helped. More sleep changes helped. Everything helped a little bit, and it added up to more and more improvement. Life felt manageable. Then last month something changed.

I didn’t notice at first. I thought I was having a good day. But that turned into several good days. And then a good week. I used to have 3-5 recovery days per week at my worst. As I improved that number went down. But lately I noticed that I was having even fewer of those days. And when I did have one, I didn’t have to rest nearly as much. Maybe I couldn’t run errands those days, but I could often do little chores around the house.

Then I realized I was doing more per day. Whereas a short time ago I could only do 1 activity per day, suddenly I could run an errand in the morning and still feel up to doing something in the afternoon! What the….? Ok, this wasn’t every day, but it was more than once, and that was shocking.

Then the most shocking thing of all: in the last week I’ve been waking up naturally between 6am and 7am every day and I actually feel ok when I wake up! That has never happened in my entire life (except when I was on Prednisone, of course.) Until recently I rarely woke up before 8:30, and that was with an alarm. Now, after reading in bed for a while, I get up and feel…. not bad! Feeling not bad in the morning is a big deal when you have chronic illnesses!

I think I might know what’s causing this. I started a new supplement to help stabilize my breathing for the sake of sleeping better. This seems to have calmed my sleep apnea and I feel that I’m sleeping better. Even on the nights I don’t use my sleep machine as long, I still get more benefit.

But could that be it? It seems so…. simple. Of course, it isn’t simple at all. I’m sure it wouldn’t be working if I hadn’t changed my diet, changed my life, started using the sleep machine, started those other medications and supplements, and all the rest. Still, could that be it? I haven’t changed anything else.

But the fatigue isn’t all gone.

And that makes sense. It’s not that the fatigue is gone and I’m all better. It’s that the brutal fatigue is gone and it’s been replaced by something else.

I’ll use a cell phone battery to illustrate what I mean. Before, my energy was like a cell phone battery that wouldn’t fully charge. It would only go up to 30% many days, 50% others. But the higher it was, the faster it would drain. Cooking dinner would use twice as much battery as it would for a healthy person. Sitting upright and watching tv used up battery energy. Sometimes it would drain quickly for no apparent reason.

The most striking difference is that now I wake up with my battery at 80% every day! This is amazing! Watching tv doesn’t use up battery energy at all! Cooking dinner uses up the battery a bit, but not nearly as much as it used to. In fact, no activities use up the battery as much as they did just 2 months ago.

Before I would go to bed at night with the battery at 3%. I could barely drag myself to bed. Now it’s at 15%. I’m tired and sleepy. I’m ready for bed. But if something important suddenly came up, I could take care of it.

This is incredible! It’s a world of difference from where I was such a short time ago. I can do more in a day and it isn’t as hard to do things. I haven’t had that dragging feeling. I haven’t felt like someone stuck a vacuum into my side and was sucking out all of my energy. Sure, I haven’t experienced 100% battery (which is what I assume my peers feel when they’ve slept well and aren’t sick) but that’s ok!

It’s only been a few weeks and I don’t know how long this will last. I want to enjoy it, but I don’t want to overdo things. At the same time, while I have more energy, I also have more pain (hello, Spring!) I took a walk earlier. I had the energy to walk further, but my joints strongly disagreed. So be it. I don’t mind. I still can’t believe I took a short walk and didn’t have to collapse as soon as I got home. Instead, I was able to sit and write this way-too-long post!

Please wish me luck. I am really really hoping this is the start of a great new health chapter in my life! Changing the fatigue like this wouldn’t fix everything. But it would be good enough for me!!

7 Comments | Expectations, Fatigue, Limitations, Pain, Raves, Symptoms, Unpredictable | Tagged: , , , | Permalink
Posted by chronicrants

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