Sunday, August 18, 2013

What If I'm Just Lazy?

I don’t like to admit it, but every now and then thoughts about whether I’m just lazy creep in. 

Being sick for an extended period of time can make it hard to remember what being healthy feels like.  As the memories of having normal amounts of energy fade, I sometimes find myself doubting what my body is telling me.  I feel like I need to rest after doing little or even nothing, yet I question if I am being too careful.  Having forgotten what it feels like to not feel so exhausted, I wonder if I only imagined feeling normal. 

These thoughts eat at me, as I was always highly motivated and active.  I often end up pushing myself and crashing hard after letting these thoughts get a hold of me.  That’s one way to banish them.

I was lucky enough to have three really good days last month.  I don’t think I’ve had days that good since getting sick.  For those few days I almost felt normal and it was amazing. 

I have been in a constant fog since I’ve been sick.  I always feel like I’m half asleep or dreaming.  Then one day last month, I actually felt awake.  I had forgotten what that was like.  And by the next night, brushing my teeth and flossing felt like the simple tasks they are, rather than an Olympic feat.  I was ecstatic. 

I felt ready to do anything.  And of course I completely overdid it.  It just felt so great to be able to do things without that heavy feeling like someone turned up the gravity. 

Those few days reminded me of what I already knew, but was having trouble remembering.  If I could do more without making myself sicker, I would.  I’m not lazy.  Once I actually have energy, I have trouble stopping myself from doing everything I can.

Do you struggle with keeping such thoughts from creeping in?

Monday, March 4, 2013

A Difference in Treatment

When I wished more doctors believed it wasn’t all in my head, I didn’t want an avalanche of health problems; I just wanted nice black and white tests for the issues I already had. I guess I should have been more specific.

I was diagnosed with asthma about a year ago. I still feel out of place when the doctor who diagnosed me explains how important it is that I do this or that so I don’t end up with a life threatening problem. He warned me that I could end up with pneumonia, but I didn’t even give it a second thought. I’m clearly not used to having anything that is taken seriously.

In October I developed a fever—the first one I’ve had since right before I got sick 14 years ago. I also had a sore throat and a cough, but only the fever concerned me because I get the other symptoms often.

Luckily, I finally found a good PCP just months before. Turns out I had pneumonia. I was sent to the emergency room, where I was surprised to be treated like someone who was actually sick. A couple days later I was sent back because my potassium level had become dangerously low.

The pneumonia cleared a month later, but my asthma continued to flare and I was unable to gain back the weight I had lost while I was sick. Since I was underweight before getting pneumonia, I was put on medication to help me gain the weight back. I was also put on steroids for the asthma symptoms.

We managed to control my asthma, but I was still dealing with significantly worse than usual weakness, nausea, tachycardia, pain, and exhaustion. I couldn’t even make myself a sandwich.

Although I had spent much of my time before coming down with pneumonia lying down because of POTS symptoms, this was different. Before I could usually force myself to get up if necessary and push through the symptoms knowing I would pay for it later. I lost this ability to push through when I got the pneumonia and it wasn’t coming back.

I always appreciated not being completely bedbound and at least being able to do simple tasks if I needed to. I did not like this new feeling of complete helplessness.

I was able to gain back all the weight I lost and more, but it came on so quickly that they suspected something else was going on. My labs showed my cortisol level was extremely low and further testing showed adrenal insufficiency. I am waiting on more testing to figure out the exact cause.

Meanwhile, I’ve been put on hydrocortisone, which has finally got me feeling like I was before I came down with pneumonia. It was nice to hear that if I took this medication, I would feel better, rather than “we’ll give this a shot and see if it helps.” And it was certainly a relief to take a medication and not only have it work, but not have any crazy side effects.

Although it certainly wasn’t pleasant to having what felt like a bad flare for months straight, I will say that the difference in treatment was amazing.  

I’ve been treated with much more compassion. I have seen much less of that look doctors give you as soon as you mention certain illnesses, such as fibro. In fact, I only received that look once in the past few months and it was because I mentioned all of my illnesses during the trip to the emergency room for potassium. During the previous trip I was able to get away with only mentioning asthma, and I was treated better and faster. 

Have you experienced a significant difference in treatment depending on what illnesses you mention?