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

The futility of “You get what you pay for” in healthcare

May 15, 2016

It started as a normal health conversation. I was talking to someone I knew who just got her license (like a prescription) for medical marijuana. She was talking about how great her doctor was, and how I should see him.

I had just started the process to get a license myself. I pointed out that I had already seen a doctor and I wasn’t about to see another. She said I should see hers when I have to renew my license (in 6 months, per state law.) I pointed out that my doctor is cheaper. And that’s when she said it.

You get what you pay for.

I was stunned. First, that’s obviously not always true. My smartphone, for example, was one of the cheaper ones out there, but it’s been running perfectly for 2.5 years. I have plenty of friends with phones that cost twice as much that haven’t lasted as long, or with shorter battery lives. More expensive is not always better.

But more than that, she knows about my financial situation. So even if she’s right, why would she suggest that I spend an extra $100-200 per year unnecessarily? How insensitive!

To be fair, I don’t think she fully understood what she was saying. She became unable to work before she ever reached the age to work. But at a young age she also moved in with the man she later married. He has a good job that easily supports them both. Funds aren’t unlimited, but they take the occasional trip overseas, have 2 dogs, live in a nice apartment, and can afford extras that help her health-wise like massage appointments and laundry service. That’s the only adult life she’d ever known.

So she doesn’t know what it’s like to know that every penny you spend is being pulled out of limited savings. She doesn’t know the fear that if you spend too much, you will run out of money, and then what?

I shook off that comment. I was too surprised to coherently answer, and I knew it wouldn’t matter anyway. Still….

You get what you pay for.

Maybe she’s right? I’ve thought about it a lot in the last two days. Maybe I should have seen that other doctor. In theory, I got what I needed: the license. But her doctor did sound helpful. He gave her personalized advice: which strains of cannabis to buy, how much to take, etc. Then again, it’s too soon to know if his advice was accurate. Maybe it was, and maybe it wasn’t. Maybe my doctor’s more generalized advice will turn out to have been more useful.

In 6 months I will need to decide if I should see the same doctor I already saw, or try hers. I’m not sure what I’ll do. What I do know is that line rubbed me the wrong way.

People are constantly offering suggestions of things that will help my health: acupuncture, massage, Alexander Technique, etc. Many of these will and have helped – but who’s offering to pay for them? No one!

So from now on, I think that will be my response. When someone says, “You get what you pay for” or “You should try X” (and of course X isn’t covered by insurance) I’m just going to say:

Are you offering to pay? Thanks! I’d love to try that!

What about you? Have you encountered comments like these? What do you say? Please comment below! I’d love to know!

5 Comments | Frustration, Insensitive, Intrusions, Limitations, Medication, Rants, Relationships: Family & Friends & Dating & Sex, Support | Tagged: | Permalink
Posted by chronicrants

Confronting the ghosts of medical experiences past

May 10, 2016

Two weeks ago someone I know through my chronic pain support group asked if anyone could give her a ride to an appointment in a town that she can’t get to by public transportation. I volunteered. Little did I know.

It wasn’t until after I volunteered that I thought to ask where in that town her

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Where I walked after confronting today’s ghost.

 

appointment was. It turns out, it was at the same medical center that I went to for my entire childhood. It’s the place where I was treated badly over and over and over again.

My first reaction wasn’t a good one. I pictured the ride up that elevator. I remembered the waiting rooms. I flashed back on the parking garage. And I got really anxious.

And that’s while I was still sitting in my living room!

If figured I could drop her off, find someplace else to wait, and then pick her up. But I was still worried about how I’d react when the time came.

Then someone else in the group volunteered to take her. I told her that if she didn’t mind, it would help me out if she could go with the other person. I never told her why – why cloud her opinion of the place? I was incredibly relieved, but still, the entire thing brought back a lot of memories I’d managed to block out.

Today was different. When a friend called and said she was anxious about an appointment and asked me to go with her, I asked where it was before I answered. I’d learned my lesson. It wasn’t until we arrived at the office (which I’d never been to) that I saw the name on the door. Oh my!

This was the surgeon who messed up my treatment when I was 18. On top of that, he was a real prick. I never call anyone that, but he was. He was a jerk. An asshole. He told me that I shouldn’t complain about the pain I was in because the Olympic gymnasts (it was during the Olympics) were in worse pain (who would he know?!) and look what they could do.

If I was better at standing up for myself back then, I would have pointed out that they had a choice. I didn’t. And I would have pointed out that he was a real jerk for talking to a 17-year-old like that. And I would have never seen him again.

But I didn’t say any of that. Instead, I returned to him and let him perform surgery on me. What was I thinking?

And I saw him today. My friend asked me to go into the appointment with her. I put my feelings aside and acted like I didn’t know the guy. I supported my friend. I took notes. I asked questions.

And now I’m not sure how I feel. I went to a pretty wooded park and walked around for a bit after that. I pet a couple of dogs that people were walking (because any day I pet a dog is a good day!) But I didn’t think about that doctor at all.

Maybe I’ve moved past it. Maybe I dissociated from that guy. Maybe I’ll have nightmares tonight. Maybe this will catch up to me in a week. I don’t know.

All I know is that right now, at this moment, I’m feeling ok. I’m focusing on that. And I’m going to try extra hard to avoid horrible doctors and terrible buildings from past experiences, but I know that might not be possible. After all, I’ve seen a whole lot of doctors in over 20 years of living with chronic illness in Boston. I guess it was inevitable that I’d face some of these ghosts again. I just hope it’s the last time for a while….

Have you had experiences like these? How did you handle them? How do they make you feel?

2 Comments | Frustration, Healthcare, Rants, Relationships: Family & Friends & Dating & Sex, Support | Tagged: , , | Permalink
Posted by chronicrants

My fertility isn’t your business

April 29, 2016

Why do people keep trying to convince me that I’m able to have kids?

Ok, I know the answer. It has to do with them wanting to give me hope, them not wanting to see someone give up on something wanted, them not wanting to admit that they might also fail to have the children they want… them them them. It’s not about me.

But it still bothers me.

When I was in my late 20s I decided that I didn’t want to pass on these genes. I had an entirely unhelpful diagnosis of Undifferentiated Connective Tissue Disease. That roughly translates to some-sort-of-connective-tissue-disease-but-we-don’t-know-what-or-how-to-treat-it. I was looking at 60 years of pain ahead of me and I wasn’t happy about it. No, I couldn’t pass that on to my kids.

But even as I said it, I still hoped I’d somehow have kids. I might adopt. I might marry someone with kids. Maybe I’d marry a woman who wanted to get pregnant. But it still hurt that I’d never be pregnant myself. I’d always wanted kids.

When we had room for an elective in high school, my friends took art and drama. I took a child development class. I started babysitting at 12 and continued to babysit regularly for many years. I was a camp counselor for 6 summers. I always loved kids and always assumed I’d have some of my own. And I didn’t just assume it because that’s the societal expectation (though I’m sure that was part of it,) but because I really wanted kids. The question wasn’t if. It was simply how many and with whom?

So this was a major change in thinking, and it really didn’t help to have people constantly suggesting that I should still have kids. They’d tell me that there was no guarantee my kids would have what I had (and they’d conveniently forget there was no guarantee my kids wouldn’t have it!) They’d say someone might find a cure. Right.

As I moved into my 30s, that conversation stayed about the same, it just became less frequent. My friends knew where I stood, so there was no point in talking about it. No one else brought it up.

But in the last couple of years, something shifted. It’s probably my age. Now that I’m at the do-or-die stage (so to speak) people are asking if I plan to have kids, because if I don’t have them soon, I never will. Ok, I get that. And I don’t really mind that question. What I mind is that they don’t accept my answer!

If I say no, they ask why not. I sometimes say I’m too old, because that’s a convenient answer. But it doesn’t work. I then hear about how their sister’s friend’s coworker had a baby at my age. I point out that their sister’s friend’s coworker was probably married at my age. And already trying to get pregnant. And ready to have kids. And she probably carried the baby for around 9 months before that. I see them look surprised as they do the math. Yeah.

The truth is, I’m single, and I have no intention of having kids alone. I also never wanted to be an older mom. There’s nothing wrong with it, but it’s not for me. I don’t want to be 60 when my kids go off to college. I don’t want to pass along these genes, but that doesn’t bother me as much as it used to now that I have some diagnoses and some treatments that would have worked great if they’d been used 15 years earlier. But I’m still in my late 30s and I’m single, and that’s a problem. Plus I have fertility issues that – funny thing – I don’t go around telling everyone. So even if I can get pregnant, and we don’t know if I can, there’s a good chance it would take a few years.

I think it’s time for some math. Let’s say I meet the love of my life tomorrow. Unlikely, but let’s pretend. We date for a year and then get engaged. I don’t care about a big wedding and let’s say they don’t either, so we’re married 6 months later. Then we start trying to get pregnant immediately. It takes at least 2-3 years to get pregnant. Then 9 months of carrying the baby. We we’re talking around 4.5 years from now. By then I’d be in my 40s. That’s a hard time to get pregnant even for someone who’s healthy!

And that’s if we don’t consider the other reason I can’t see having kids: my symptoms. I can barely take care of myself right now. I struggled to take care of a dog. How the fuck would I take care of a baby?!? Or a young child?!? I’m exhausted after an afternoon with my nephew. I visit my friend and her family for 3 days, she does all the cooking, I stay home half the time she takes the kids out, and it’s still more than I can handle. I couldn’t do that every day without doing real harm to my body. Other people do it. Plenty of you are parents. And I applaud you! But I don’t see myself handling that well right now. And it would break my heart to not be able to pick up my child. But that would be the reality.

And then of course there’s the pregnancy itself. My hormones, my joints…. I don’t see them faring well.

And as if that’s not enough, there’s the part where I honestly don’t know if I’ll ever find someone I want to marry, much less make that happen this year. But see the math above – this year would already be too late for me.

These are all very legitimate reasons to assume that I won’t be having kids. But why should I tell strangers and acquaintances all of this? Why isn’t it enough for me to say no, I won’t be having kids unless I marry someone who already has kids? Why can’t people just believe me and move on?

Probably for the same reason they can’t let it go when I say, “I’ll never be cured.” But that’s a subject for another day.

What about you? Do you deal with this? How do you handle it? What do you say? Please comment and let me know!

4 Comments | Educating, Expectations, Frustration, Insensitive, Intrusions, Limitations, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Tagged: , , , | Permalink
Posted by chronicrants

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