So Very Tired

I am so tired.

I keep saying that to people. At work, at home, at the doctor’s office. I can’t even help myself from saying it sometimes.  But here’s the thing I know, and maybe it’s why I keep saying it: I know that none of these people really understand what I mean.

I remember, vaguely, back in my healthy days how it felt to be tired. Sometimes I’d even be exhausted. I have kids, after all, so there were sleepless nights and long days. So sure I was tired.

It’s not the same now, and I wish there were a better word for this kind of fatigue.  When I say I am tired now it means that I wake up exhausted.  I can sleep for eight hours straight and wake up and feel like I haven’t slept at all.  It means that my body feels like it is carrying around a whole extra person, because my body just feels that heavy, that over-extended.  It means that thinking about my day makes me want to cry because I can’t figure out how I am actually going to get things done.

I am tired to my core.  And I don’t know what to do to get through this.

I guess I should back up to say that I’m in a flare, and have been since January when I caught a cold.  The cold passed, but here I am, swollen and tired and in pain.  About a week and a half ago, I finally emailed Dr. K and asked what she thought I should do.  She said I was probably still bouncing back from the cold (she said something I had never heard before, that it can take us 4-6 weeks to recover from even minor viruses- crazy!) and that I should try increasing my prednisone for 10 days and then we would see where things were. I really thought that was going to fix things.

I called to make a follow-up appointment on day 7 because I still felt awful.  Pain and fatigue hadn’t really improved, despite the extra prednisone.  I went to see her yesterday, and she said, yes it looks like something is going on.  She ordered labs, and pending results, I will likely be increasing the MTX and switching to injectables because there’s no way my stomach would be able to handle the max dose.

Hearing all that just made me more tired.  It will be weeks before an increased dose kicks in and makes a difference. During those weeks I have to stay at the higher prednisone dosage.  It took me months to get myself down to 6 mg and now I’m back to 15. Yeah, I know it could be worse, but I wanted off of it. I feel like that will never, ever happen. My last visit with her I was feeling so much better that we were talking about what we could do once I got off the prednisone. We were talking about lowering the MTX, or getting off the naproxen.  We were talking about progress.

But no. Here we are again. Going the opposite direction.  And I am so very tired, so very discouraged.  And I know that I need to say to my work, to my family, to everyone- I need a break. I need to rest.  But I just can’t. There’s no time to do that, no way to do that now. I have to keep going to work, and keep plodding along, and trying to not be the worst parent in the world, and I just don’t know what to do.

In my head, I know that I have been here before. I know that things will get better and that this is the way of chronic disease. There are ups and downs.  I know all of that, but today, and all the days lately, I feel defeated by this disease.

And I’m just tired.

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And I’m Back

 

I haven’t blogged in so long.  I wish I had a good reason.  Mostly, I have just been busy.  I went back to work part time, and balancing work and home has been tricky.  I had a brief period of feeling a lot better, so I tried not to think about being sick during that time.  And then, the rest of the time, I guess I have still been trying not to think about being sick.  It depresses me.

But I guess that’s the way it goes.

So, an update: I have been completely unable to get off of prednisone. I actually haven’t been able to get below 10mg a day, which is pretty scary.  So, several weeks ago we added plaquenil to the mix.  Then we did my labs to check on where I am with things, and my inflammation numbers were still really high.  My pain was pretty high too again.  So, I went to the doctor about a week and a half ago, and we discussed options.  Dr. K recommended we add Enbrel once a week, and hopefully it will work well enough that I can get off the prednisone.  Here’s hoping.

I don’t know what else to say, honestly.  I am trying to be “normal.” I am trying to do chores, and go to work, and enjoy my family.  I am trying not to let pain consume things, but there are days I feel so completely defeated by pain, by the idea of pain, by the prospect of my life being this way.  I feel….tired.  It’s so hard to think about, and it’s so hard not to get discouraged by your body when your body doesn’t like you.

But, I am hoping the Enbrel is the fix.  Or at least helps enough to make it easier to be normal.  We shall see!  I will try to be better at updating here.  I’ll try not to hide away too much, from myself or from you all!

 

 

One Step Forward, Two Steps Back

Even though I know that life with chronic illness is a series of ups and downs, a whole lot of trial and error.  I know this.  But, I let myself lose sight of this as a process.

The last couple of weeks, I had been feeling a lot better.  I was able to walk more, to use my body more.  I started cleaning around the house (the kind of cleaning that ends with big garbage bags of unneeded stuff).  I felt good.  Not great, not pain free, but I felt decently good.

Last Saturday I started my prednisone taper, with the help of my acupuncturist.  The first day was awful- I was nauseous, achy, miserable.  But after the first day, things started to be ok, and by mid-week, my taper withdrawal effects seemed to be pretty much over.  I was psyched.  I started wondering if I could actually move down to the next level (5 mg) sooner than next month.

And then the pain and swelling started.  First in my hands, which were stiffer than they had been.  Then, I noticed my feet were swollen. But hey- I can handle a bit of swelling.  No problem.

Then yesterday, the horrible pain started.  My shoulders and elbows hurt when I moved (though acupuncture helped those); my hips hurt when I walked.  There’s a stabbing pain in my foot.  This is a problem.

Because I know that swelling in my joints means that things are not where they need to be, means that there may be permanent joint damage in the works, I reluctantly emailed my doctor.  I told her about the pain and swelling, that even though I know some of it is related to pms, there is more pain and swelling than there should be; I also added that I really want off the prednisone.  Is there something else we can do, I asked?

Her answer: increase the prednisone back to the 15 mg until my pms pain is over.  And increase the MTX, from 15 to 20 mg a week.

I know this is all a process.  I know that this is normal.  But I can’t help but feel like I went backwards. Taking the extra prednisone this morning, I am just so discouraged.  At the same time, I am willing to risk the moon face and weight gain, if it means being able to function again.

So I guess we’ll see.  I’ll wait a bit and then try to taper again.  I’ll hope for the best with the MTX dosage increase (please, don’t let the nausea also increase!).  We’ll see where it goes, and hope that we keep moving forward.