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

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

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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

My calendar says I’m recovering that day

April 19, 2016

I used to call them do-nothing days. Or resting days. Or dead days. Lately I’ve been calling them Recovery Days. Because that’s what they are. I’m not doing nothing, I’m recovering!Recovery Day

Our culture says that a day of watching tv when you should be buying groceries and cleaning and going to a job and and and…. is lazy. I say that if you have a chronic illness, sometimes it’s necessary.

I had a recovery day yesterday. I could have pushed myself. I had a long list of things to do. If I’d pushed myself I might have been able to get a couple of things done. But I wouldn’t have gotten far on that list, and I would have done things badly. Then I’d have felt lousy today and I’d have barely gotten anything done at all. Sound familiar?

I used to push myself. At the time it seemed like a good idea. Now I know that pushing myself too much just means I’ll eventually hit the wall and I won’t be able to do anything at all.

So instead I took a Recovery Day. I didn’t leave the apartment. I read. I watched tv. I heated up leftovers for meals. That was it.

And today I felt better! I was able to go out and run errands. I’m sitting in a chair and writing this now (not an easy thing!) For me, that’s a super productive day.

Sometimes my Recovery Days are predictable. I can look at my calendar right now and tell you that I’ll be taking a Recovery Day on Sunday, so that’s blocked out on my calendar. I knew I’d probably be taking one yesterday, too, but I wasn’t completely sure until around 10am. I could just feel it, and there was no doubt it’s what I needed.

I used to take Recovery Days 3-5 days per week. If I left the house for an hour, the next day would be a Recovery Day. These days I’m feeling better and I only need them 1-2 times per week – yay! Of course, even now I have bad weeks, too. Sometimes a Recovery Day means spending all day in pajamas and doing nothing but watching tv. Sometimes it’s multiple days of that. Yesterday I felt better and was able to read a novel for a while. All that really matters, though, is that I gave my body the rest that it needed, in the form that it needed.

I know I’m lucky. I don’t have children or anyone else to take care of. I’m not working (though that’s not exactly a good thing.) So I’m able to spend an entire day indoors. I’m able to rest when I need to. But there are other things I should do on my Recovery Days that I can’t. I accommodate myself the best that I can. That’s all any of us can do.

You might have noticed that I’ve been capitalizing Recovery Day. That’s because it’s IMPORTANT! I think we don’t give ourselves enough credit for how hard these days are. We let culture pressure us into thinking we’re not doing enough when in reality we’re doing so much. Sometimes, it’s all we can do to get through these days. I’d rather go to the gym for 4 hours than need some of these Recovery Days. But I don’t have a choice, and I accept that (but it took me many years to finally accept it.)

How do you feel about your Recovery Days? Are you willing to rest when your body needs it? What do you do? How do you handle it? Please let me know in the comments so we can learn from each other!

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

The reminder system all doctors should use

April 14, 2016

Sometimes it’s helpful to get a reminder about a medical appointment. But sometimes it’s just really annoying.

When they call at 8:30 and I’m still asleep, I don’t want that call. When I’m busy, I don’t want that call. When I have 5 appointments coming up and they all seem to call on the same day, I definitely don’t want those calls.

Except I sort of do. Reminders can be helpful when I’m dealing with dozens of appointments every year.

And that’s why I think my dentist’s reminder system is brilliant and I don’t understand why more don’t do this.

3-28-2016 12-40-29 PM

See this email message? How great is this?! As soon as I make an appointment I get this message. I click on one of the options. If I don’t want a reminder phone call I won’t get one! If i click to be reminded, they send another email a few days before the appointment. If I don’t click on any of the options in that message, they call me. If someone doesn’t want to give the office an email address, they call instead.

Yes, I’m sure this isn’t cheap for them. But then again, think of all of the staff hours they save by not having someone calling all of their patients! And instead of leaving messages on voicemail systems that might be garbled, they get to send a clear, simple email message.

And on my end, I find this so much better than a phone call! It’s not disruptive, I can easily see the date and time, and it’s quick and easy to respond.

A simpler version is the bland, impersonal, highly useful email I get from my naturopath a couple days before each appointment. I don’t know if she sends those manually or if they’re automated, but either way, they’re simple. They remind me of my appointment. They say the date and time. I don’t need to respond. I don’t have to do anything. I don’t even have to deal with a phone call.

Some people prefer phone calls, and it’s great that they still have that option. But it’s 2016 now. It’s about time more medical offices catch up and use email to confirm appointments. Then maybe in another 20 years they’ll be ready to use apps!

Is this unusual? What do your medical providers do? Please comment and let me know – I’m very curious!

10 Comments | Healthcare, Rants, Raves | Tagged: , , | Permalink
Posted by chronicrants

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