P.A.I.N.

August 31, 2016

It’s one of those days. Well, it’s one of those weeks, actually. For now. Because of course I don’t know how long this will last. It could be months or years.

The thing about chronic pain that a lot of people don’t understand is that it isn’t necessarily consistent. For me, I have different kinds of pain to different degrees in different parts of my body at different times.

Maybe one day my knees are brutal but the rest of me feels ok. And another day my toes hurt so much I can hardly stand up and my wrists are just sore. Maybe my knees are on fire while my neck is throbbing. Some of it is predictable and some of it isn’t and that’s just the reality.

For several years now, the variation has always fallen within a certain range. My toes hurt up to a certain point in a certain way, my knees hurt up to a different point in a different way, etc. I got used to that. I knew how to handle that.

I don’t know why, but something changed. My knees have hurt a lot more lately, and in a different way from before. There’s a sort of stabbing pain followed but what feels like a loss of structural integrity, though I usually manage to not fall but shifting my weight briefly.

Even worse, my wrists have started to hurt in an all-too-familiar way. This is the pain that I had 24 hours a day, 7 days a week for over 9 years. It isn’t quite as severe as it used to be, but it’s the same type of pain. Occasionally (maybe 1-3 times per hour) it gets worse for a few minutes. The only thing that ever helped was a medication that I’d rather not take, but I will if this continues. But it did help. That was 15 years ago (the first time I took it) and 7 or 8 years ago (the second time I took it.) It’s only been about a week, so I’m hopeful it will go away.

Maybe it’s the weather? Maybe I did something to trigger it? Is it a coincidence that my knees and wrists got worse at the same time? Are they related?

All I know is that I’m in a scarier type of pain than I have been for a while now. That’s the thing: it’s emotional. The pain in my knees is bad, but I can walk through it. The pain in my wrists isn’t much worse, but for some reason it’s limiting what I can do. And for many years it limited my ability to write, to type, to cut my meat, to brush my hair, to wipe my ass…. I’d understandably rather not go back to that place.

So now I wait. I wait and hope. I hope that the pain diminishes.

Because I accept that I will be in pain, but I don’t want to be in this level of pain, in this type of pain, in this part of my body.

Advertisements

Why I prefer the virus

August 25, 2016

A few days ago I wrote about some symptoms I was having, but I didn’t know why. Now I know.

When I felt fatigued, brain fogged, and just “off” for the first couple days, I assumed I was just having “bad” days. After 4 days I was concerned. What if this wasn’t just my typical “bad” days? I wasn’t getting better. What if this was a long-term issue? That happens all the time, after all. I get a new symptom, or an old symptom becomes worse, and it stays that way for months or even years. Crap crap crap!

On day 5 I was fed up and I emailed my Naturopath. It was a Sunday, but I felt better having reached out anyway.

The next morning she wrote back: there’s a virus going around with my exact symptoms. I wrote back that I don’t have any other virus-like symptoms. No runny nose, sore throat, or upset stomach. She assured me this is what the virus is. Extreme fatigue. I decided to accept that. And then something interesting happened.

I rested.

For the first few days I had tried to continue my normal life. That means trying to “be productive” and “get stuff done.” Sure, I might be doing a lot less in a day than a healthy person, but I was doing it nonetheless. I was working on blog posts for this and another site, I was thinking about doing my laundry (though no actually doing it,) I was trying to clean up around the apartment. But I was failing at all of it. I just couldn’t manage.

Then I spent a couple days not doing anything and feeling guilty about it. I’d accepted that I needed to rest for a few days, but there were so many things I should be doing. I even went out briefly one day to get a prescription and some groceries. I felt bad about canceling plans with friends. It sucked.

Once I was told I had a virus, though, I rested without guilt! It was lovely! I watched tv, crocheted, listened to audio books, and read. My only responsibility was to keep myself fed, and I did that with simple meals: eggs, leftovers from the freezer, sandwiches. I washed dishes only as needed.

If I’d rested from the start, the virus probably wouldn’t have lasted so long. It was 8 days. Today is the first day I feel 100% over it. But I probably would have felt better days ago if I’d only rested from the start.

The thing is, when you have chronic illness you can’t rest every time you feel bad, because you’d never do anything. Even when my fatigue was at its absolute worst, I did stuff. Or I tried to do stuff. Or I felt guilty about not doing stuff. Because I felt that way every day, so pushing through was the only way to get shit done.

But a virus is different. It’s temporary, and we know it’s temporary. Resting with a chronic illness, only feels good in the moment, but resting with a virus means overall improvements in health. It’s worth resting if it means I’ll get better, right? So I rested.

And on top of that, there’s the sympathy! Family and friends were checking on me every day. That doesn’t happen with chronic illness. And I get it. Checking on someone every day for a week is one thing, but you can’t check on someone every day for the rest of their life. Still, it felt good to know people were thinking about me and wishing me well in the moment.

So given the choice, sure, I’ll take the virus every time! I felt only slightly worse that usual, and in exchange….

I got to rest without guilt!

What about you? Do you feel guilty when you rest? Do you find it easier to have a virus that you know will go away? Or are you the opposite? Please comment and let me know how you feel about it!


Many possible causes, no answers

August 20, 2016

When someone who’s generally healthy feels bad, they can usually tell you why: they drank too much last night, they haven’t been sleeping enough, they’re under a lot of stress, they’re getting sick.

When you have a chronic illness, it isn’t always so clear.

I was doing unusually well over the last few weeks. I wasn’t feeling as good as I do in the fall and winter, but as far as summer goes, my pain and fatigue and other symptoms weren’t too bad.

Then I started feeling unusually bad. I was more fatigued. I was depressed. I was in more pain. The symptoms ebbed and flowed but were always around. What happened?

I weighed the possibilities:

  • Maybe it’s the weather. But I’ve been staying in air conditioning. And it’s hot and humid, but not nearly as bad as it was last week. There’s no reason I should feel so much worse now.
  • Maybe I’m getting my period. Thanks to my PCOS it’s entirely unpredictable and rare. That was an option for a couple days, but I didn’t get it (and if I was going to, I would have within 2 days of the start of the symptoms.)
  • Maybe I got glutened. After all, it started just a couple hours after lunch at a restaurant. The symptoms weren’t as bad as a typical gluten reaction, but maybe it was the tiniest amount of contamination. This seemed possible at first, but that was 4 days ago. I would be feeling better by now.
  • Maybe it’s some new, unknown thing. That happens sometimes. Unfortunately, there’s no way to know.
  • Maybe I’m getting sick. That would make sense. My body could be working extra hard to fight off some tiny little bug that most people wouldn’t even notice.

And of course, I don’t have an answer. Except for a quick trip to pick up a prescription and some groceries yesterday, I haven’t left the house in 4 days. These days, that’s a lot. I’ve been going out most days, even if it’s only briefly, and I’m rarely home for more than 2 or 3 days at a time.

The weird part is, I have no desire to go out or do anything. I know there’s stuff around the house I need to do, and I want to do it, but I just can’t bring myself to even get started. I’m not depressed, I just don’t have any spark. I’m too tired. I’ve been sleeping well enough, and I feel ok when I wake up, but my energy just remains flat. I think I’m going ok and I try to walk around, and my foot hurts too much. Or my knee hurts. Or something else. My stomach bothers me occasionally, not in any ways I haven’t felt before, but this time there aren’t any reasonable triggers. The pain feels like it’s coming from the humidity in the air, but what about the fatigue and stomach issues? Maybe those are too?

The frustrating part is that I don’t know, I can’t know. I won’t have any answers. Even when I eventually feel better, I probably won’t know why this happened. Just like when I have good days, I don’t know what causes them. It’s a big, frustrating mystery. And it affects my entire life.


What if this symptom is different?

August 16, 2016

How am I supposed to answer the question, “What causes X symptom?” The thing about the kinds of autoimmune illnesses I have is that the symptoms can vary a lot. My Hashimoto’s leads to fatigue and difficulty adjusting to temperature changes. Someone else with Hashi’s might not have those symptoms and might instead be overweight and have no eyebrows. And I have multiple illnesses like that.

Even better, some of the illnesses have overlapping symptoms. The pain could be from Hashimoto’s, Celiac, or connective tissue disease. So when the doctor asks, “What’s causing the pain?” I just shrug. Sometimes I can tell. Sometimes I can’t. So be it.

But this also means that when there’s some new symptoms, I just assume it’s because of these illnesses. I make that assumption even when I probably shouldn’t.

Blood when I poop? That’s probably the Celiac. Pain in a new place? That’s probably the connective tissue disease. Except I could be wrong.

I often have new symptoms that are strange enough or severe enough that most people would see a doctor. Sometimes it’s clear what the cause is, but sometimes it isn’t. And I don’t want to be rushing to the doctor every time. It’s tiring, it takes time, and my doctor is too likely to stop taking me seriously.

The thing is, what if it’s serious? I wonder about this sometimes. A friend had symptoms that her doctors attributed to her chronic illness. She pestered them to run more tests. It turned out to be cancer. A friend without chronic illnesses recently had severe pain out of the blue. He went to the emergency room and had all sorts of tests done. It turned out to be nothing much. It could have also been nothing important. When is it worth running the extra tests? When isn’t it?

I wonder if other people with chronic illnesses have these concerns? I’m I being to cavalier? Should I take certain symptoms more seriously? If so, which ones? And would my doctors also overlook my symptoms and automatically attribute them to my chronic illnesses?

What do you think? Do you ever wonder about this? How do you handle it? Please comment and let me know what you do.


Because it can never be simple

August 9, 2016

The appointment went well. The doctor was great as always: smart, personable, and though always busy, acting like he has plenty of time to talk to me and answer my questions. Yes, I like this guy a lot. His new fellow (it’s a teaching hospital) seemed really good, too. I left with a plan.

The next step went better than usual. Instead of waiting 6 months or more for my 3-month followup, I actually got an appointment in just 3 months! I was told they had hired new residents and that freed up some of my doctor’s time.

I happily went for blood work. They usually stop taking patients at 5:15 and it was 5:20, but they said they were happy to squeeze me in. Good thing I’m an easy draw!

Yes, everything was going smoothly. Until it wasn’t. Because apparently I can never just simply have a good, smooth, simple appointment.

I felt the needle moving around my arm. Then it moved more. It wasn’t slipping, it felt deliberate. I didn’t look – I never do – but I asked what was wrong. The phlebotomist told me the vein was moving away from the needle, and that that can happen with overuse.

Overuse. Sheesh! Well, it was probably true. I’ve gotten A LOT of blood drawn over the past 20+ years since the doctors first took my symptoms seriously. And it was almost always in my left arm, because I have so much more pain in my right. And it was usually in the same spot on the same vein, because that’s the one that pops right out, practically asking to be stuck. So yeah, I could imagine overuse was a possibility. This would suck. I’d have trouble doing it on my right. But what could I do?

She offered to try a different vein in my left arm but I said no, to just do my right. I didn’t like the way that needle had felt in my arm. It had made me a bit queasy. I just wanted this over. Then I felt funny.

Then she was running into the room with water. Wait, hadn’t she been standing next to me? Apparently I’d lost a minute somehow. She was calling out, “Bring me some juice ASAP!” I drank the water. She put a cool wet papertowel on the back of my neck. The room was swimming. My face was tingling. I felt foggy-headed. I drank more. I was having trouble sitting up straight. There was juice in front of me. I drank it. She said my color was coming back. I hate to think how bad I must have looked before that, because I doubted I was looking so hot at that moment. I drank more juice. There was a nurse in the room. A doctor came in. They all looked concerned. Oh boy.

The room was steady now, but I felt a bit shakey. I walked around a bit, because they wanted me to prove I could. Thankfully, this was one of the only times I hadn’t driven to the office; I had taken the bus so I could avoid rush hour traffic going home. I was worn down, but generally feeling better. But I was confused. I wasn’t foggy-headed, just confused. What the fuck just happened?!?

The staff kept reassuring me, saying that this was common. Maybe it’s common to them, but not to me! I was seconds away from fainting and I don’t faint. Ever. Ok, once, but I had lost a lot of blood that day without eating anything and that was 19 years ago. This made no sense! Once last year I had 9 vials drawn as a fasting test and I just felt a little light-headed afterwards. I drank water, ate a granola bar, and was completely fine. I’ve never had anything like this! And besides, she hadn’t even drawn blood!

The staff was great. I left the office after drinking more juice, eating a bit, and promising to eat more when I got home. Good thing I always carry food with me, because all they had was gluten-y food! I wasn’t hungry in the slightest, but I forced myself to eat.I promised them I would take an Uber home instead of the bus. Luckily I had just used Uber for the first time a couple weeks ago, so I had the app on my phone and knew how to use it. The doctor gave me her cell phone number and made me promise to text her so she’d know I got home safely.

Waiting on the street corner for the Uber sucked, but he finally came and we made it home. I was in the office so long that by then, ironically, traffic wasn’t so bad. The minute I got home I pulled off my clothes and put on something comfy, texted the doctor that I was ok, grabbed some juice, and got on the couch for some light tv. After several hours of lying down, watching tv, and feeling like crap, I suddenly started to feel better. Thanks to my chronically ill body, of course, I still felt fatigued the next day from the whole experience, so it took another full day of resting on the couch before I felt decent enough to leave the house. And then finally I could think about all of this.

The phlebotomist, nurse, and doctor who had crowded around me all mentioned something with a “v” that I couldn’t remember. When my doctor and his fellow heard about what happened, the fellow called me. We talked for 20 minutes. She felt it was most likely a vasovagal response. Ah hah! That was the “v” word the others had used! Today I saw my naturopath for a checkup and she also felt I’d had a vasovagal response.

Basically, it’s the body overreacting to a trigger. Often the trigger is the sight of blood. The sight of blood doesn’t phase me in the least. The feeling of a needle moving around in my arm, on the other hand….

So that’s the theory. And there’s no way to know if it will happen when I return next week for that blood draw again. Or if it will ever happen again. Maybe it won’t. But with my luck healthwise, that’s probably too much to hope for.

So much for my simple appointment.


If only I didn’t have to shower

August 5, 2016

There are so many things I took for granted before the chronic fatigue set in. Showering was one of them.

I’m lucky to have access to a shower. I have clean running water any time I want it. The

shower-653671_1280

Wish mine was this fancy!

thing is, I don’t always have the energy to utilize it.

Baths aren’t an option for me. Getting in out and out of the tub is too hard, too painful, and too likely to lead to a fall. Besides, with my low blood pressure, I’ve been warned away from hot baths.

I keep a stool in my shower, and helps that I can sit when I need to. Still, some days even sitting in the shower takes too much energy.

It’s exhausted for my body to try and adjust to different water temperatures. It’s tiring to dry off afterwards. Then there’s the shower itself.

Thankfully we’ve gotten some cooler weather, and I’ve skipped showers several times this week. Showering every other day has been fantastic! But I haven’t showered in 2 days now, and I’m stinky. It’s cooler out, but it’s still summer, and I’m sweating.

I know I need to take a shower. I need to wash my hair for the first time in over a week. I need to wash my body. If I’m ambitious, I might even shave.

Then I’ll need to lie down to rest a bit, because I have to take the subway and a bus to my doctor appointment in a couple hours and that’s going to be exhausting.

There was a time when I didn’t think twice about taking a shower. None of my friends do. Most people don’t understand what the big deal is. But I know. And I’m guessing you do, too. Sometimes taking a shower is exhausting.

Which is why I so often wish I didn’t have to do it.


%d bloggers like this: