The never-ending guessing game of boundaries

July 25, 2017

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Having chronic illness means accepting limitations. For almost two decades, my limitations made life more difficult, and they prevented me from doing some things, but their impact was limited in its own way. Then things changed.

Today I want to go to the gym and ride the stationary bike at its lowest setting for 10 minutes. But I’m not sure if I’m up to it. That’s one kind of limitation. That bothers me, but not as much as the other kind of limitation.

I want to live life on my own terms. I want to earn a living and go out more with friends. But mostly I want to travel.

Yesterday a friend told me about a trip she is planning. She knows that it is beyond her chronic illness-produced boundaries, but she is taking a chance by going anyway. And it made me question, not for the first time, if I should take more risks.

Part of me thinks I should. My doctor thinks I could. And I’m tempted to just pick up and go. But then I get scared. What happens when I inevitably feel sick? I won’t be able to bring medical marijuana – the only thing that helps – with me. Is it worth taking a trip, when I will probably feel like crap for half of it, and feel horrible when I get home? Will I be able to enjoy myself enough for it to be worthwhile?

But then I wonder, what kinds of regrets will I have if I don’t go? My symptoms will probably get worse over time, not better. Now travel feels difficult, maybe not worthwhile, and scary. At some point it will be completely impossible. Don’t I owe it to my future self to take a trip today?

Sometimes I think I should try doing something small to test the waters. But those smaller trips feel boring. If I’m going to put myself through hell, shouldn’t it be for something fantastic? Sure, I could go to Washington D.C. for the 3rd time, or to Nashville (which I’ve never had any interest in) for the first time, but it would be so much more fun to go Sweden or Norway or Iceland! Those are places I have wanted to visit for years, and I would have so much more fun there. If I feel up to doing anything.

And of course, there’s also the money issue. If I had gobs of money, not only would I not stress out about money, but I could buy certain comforts: a first class seat in the plane, a nicer hotel room, a rental scooter for when I don’t feel up to walking. Instead, I question if I should take money out of my savings for a trip at all, even one without those extra comforts. Then again, I might regret it if I don’t. I probably will.

So these thoughts are spinning around my head for the millionth time. I know some people with chronic illnesses travel. I know others don’t. I know it’s a personal choice and I need to be the one to choose. But that doesn’t make it any easier.

Because in the end, it’s not about the trip itself. It’s about the fact that my world has become very small, and I feel the need to open it up. I need new experiences and excitement. I know that would sustain me in a million mental and emotional ways. I just wonder what it would do to me physically.


Feeling moody from pain

July 19, 2017

There’s an emotion toll to chronic pain that’s easy to miss if you have only ever experienced short term pain.

A banged finger will heal soon enough. A sprained ankle will cause frustration. Even a broken bone rarely leads to anything permanent, and so you just wait it out. But the chronicness of chronic pain means that you need to handle it long term, and that comes with a lot of emotions.

Over the years I have had many feelings about my pain. Working through them has helped me to deal with my feels now, and yet, I still struggle.

I have new pain. Just 2 short months ago my thumbs weren’t even on my radar. I used them without thought. Now, everything hurts. I cringe when I realize I have to go to the bathroom, because I know I will feel extreme pain when I pull down my shorts. Picking up a plate is difficult and painful. I wonder how long it will be before I break and drop something not from clumsiness, but because of the pain or weakness. [Side note: I say my thumbs hurt throughout this post, but more specifically, it is the joint that connects each thumb to my hand. Thankfully the rest of each thumb is ok…. for now. Since every movement affects that joint, I can’t use my thumbs without feeling the pain, though.]

I’m scared. This pain could be permanent. I might literally have it every day for the rest of my life. Or it could go away. Or it could go away and then come back at random times. There’s no way to know.

I’m frustrated. When I feel horrible, I spend some time on the couch watching tv and crocheting. That makes me feel better. But I was in too much pain to crochet. I always fidget, always need to keep my hands busy and my fingers moving. But now any type of fidgeting I do is painful, because I use my thumbs, or I use other fingers and that pulls at the muscles that connect to the thumbs. What on earth will I do if I can’t crochet or fidget? I can’t even begin to imagine.

I’m sad. So very sad. Because I know that my thumbs will probably never be the same. And because I know there are other joints in my body that I am taking for granted now in the same way I took my thumbs for granted two months ago. I want to appreciate everything now, while I can. I even want to appreciate my thumbs because I know all too well, from 26 years of joint pain, that things will probably get even worse and that I will look back on this time and wonder with amazement at how I didn’t realize how good I really had it, despite the pain.

I’m overwhelmed. My head swirls. Did the onset of summer cause this or exacerbate it? If so, maybe things will be better in the fall? The increased dose of my anti-inflammatory supplement, from 1/day to 4/day, hasn’t helped. I really hoped it would. When I started with 1/day last year it changed everything and made me feel so much better, but it seems no match for my pain-filled thumb joints. Or maybe it’s disease progression, and I need to go back to taking Plaquenil. I don’t want to, for many reasons, but I can’t deny that it has helped a lot in the past. I’m in so much pain that I almost want to try it now, but should I wait to see if things get better in the fall? Then again, what if they get worse? What if waiting just leads to more damage and makes it impossible to halt things? No one can make these decisions but me. I could see my doctors, but would they say anything I don’t already know? Besides, I just saw my rheumatologist a couple months ago and I have another appointment to see her in a month. It seems silly to move that up so soon. We can discuss it all then. But when every day is such a struggle, a month feels very far away.

I feel trapped. I feel trapped in my body, which is so filled with pain. And I feel trapped in my apartment, because the evil humid air outside makes my symptoms worse. I know that even a walk to my car will increase my pain and fatigue and will bring on nausea and diarrhea. I can’t go out there. But I need to move, to be distracted, to do something.

I feel cut off. Texting has slowly become a primary form of communication amongst my friends and the new person I’m dating. But texting is far too painful. I dictate messages into my phone, but I find that frustrating. And even just navigating to my messenger app is painful. I can do it, but it hurts. I am SO GRATEFUL that typing on my laptop isn’t too painful yet. But what happens when it is? I lived through that 20 years ago, but computers weren’t as vital for communication then.

Yesterday my neighbor stopped by for a visit with her puppy. I hadn’t left the apartment all day, thanks to the weather and my pain. Even just opening the door and feeling that wall of thick, muggy air for a few seconds wasn’t good. Having a visitor felt so good! And the puppy was a darling! Petting him hurt, but it was worth it. They left all too soon. I wish there was a visiting puppy program for the sick.

I am so fortunate. I have a lovely home, a caring family, wonderful friends, and enough food and medicine. But the emotions still engulf me at times.

Unfortunately, my mother called last night at the wrong time. When we started speaking everything was fine. But during the call the pain became worse, and by the end, I was moody and bitchy. I was too busy talking to her and feeling sad and frustrated and overwhelmed to take a step back and recognize and work through my feelings of sadness and frustration and overwhelm. So I took it out on her.

And my mom, being the amazing woman that she is, listened, expressed sympathy, and never blamed me for acting like a selfish child. She has chronic pain too, though it’s less disabling, and I think she understood.

Halfway through writing this post, my mom called. She said that she wanted to do something for me and I could not say no. She is going to come to my apartment one day and clean it for me. I can’t clean it myself, and the cleaners I hired didn’t work out, so I have been feeling stuck. She wants to do this to help me.

I have so many negative emotions right now. This thumb pain is upsetting to me in ways I haven’t been able to express to myself yet, much less write down here. But having my mom in my corner definitely helps. Even if sometimes I still get bitchy. After all, I’m only human. And I’m scared.


Oh summer, why must you torture me?

July 5, 2017

It is a bright, sunny, not-too-hot day. I should be taking a walk outside. Sitting in the sun. Enjoying the weather. Instead I had to cancel plans I was looking forward to so that I can sit inside and feel lousy. Again.

I don’t know what it is about summer. I just know that it kicks my ass every year. This year is actually not as bad as usual. I have been in better health, and I assume that’s why. Instead of feeling crappy starting in March or April, I made it to June! Of course, we had an unusually cool May, but still….

But not it’s July and I feel like I’ve been hit by a truck. I increased my adrenal supplement for a few days and that helped, but when I lowered it, the fatigue rushed back. I’m seeing my naturopath in the morning and I have a feeling I should raise that supplement dose for the rest of the summer. It sucks, because after many years, we had finally just lowered it a few months ago! I was so happy to lower that supplement. It’s not something I should be on permanently. The idea is to keep lowering the dose until my adrenals can do the job themselves. We want to avoid long term dependency.

So much for that.

Yesterday was a lovely day. It was sunny and not too hot – perfect swimming weather. Plus it was a holiday, so most of my neighbors were away. I had no plans at all. The perfect day to finally try out my building’s pool. But there was no way. I felt like shit. I texted my friends that I wouldn’t be joining them, and I spent all day in pajamas. I watched many hours of tv. I didn’t do the cooking I wanted to do. Or the laundry. Or the putting away of clutter. Instead I watched tv and crocheted and knitted. Thank goodness for my sedentary yarn hobbies!

Being stuck at home is nothing new. I can handle it. The hard part is that the summer is when everyone else is out and about! All winter I felt better, but no one wanted to take walks in the snow with me. And I don’t blame them. But now they’re all out doing things, and I can’t join in. I’m stuck inside. And I like being out in the sun! I love it, actually. But on the hot days it’s impossible and on the not-too-hot days I usually don’t have the energy for it.

My new apartment has a patio. I’m hoping to spend at least a few minutes sitting out there later. At least I would get some fresh air.

But taking a walk, going for a swim, or keeping my date for tonight? No go. Because even on a not-too-hot, not-too-sunny, not-too-anything-bad day like this, I still feel like crap.

Maybe one day my immune system will be able to handle summer. But not today.


When the best medicine is taking care of someone else

June 17, 2017

Today started out rough. I felt like I did too much on Wednesday. Thursday I did less, but probably should have stayed home to rest. By Friday I had no choice but to spend all day at home in my pajamas, watching tv and crocheting. So this morning, I was glad to feel better than yesterday, but I still didn’t feel great. And yet, I didn’t want to cancel all of my plans.

My evening plans had to be cancelled. I knew I had to get to bed early. But the afternoon plans – a friend coming over who I already cancelled on at the last minute last time – I didn’t want to cancel again. So I rallied and got dressed and waited for her to arrive, knowing it would be a quiet day and I wouldn’t have to leave my apartment.

When she came, she had the start of a migraine. Unfortunately, she had switched purses and didn’t have the over-the-counter medication that helps her. I didn’t have it either. I offered to go to the store, but she said no. So I messaged a bunch of neighbors. No luck.

I got her a cold pack for her head. I made her tea. I shut off the lights. Eventually, I insisted on going to the store for her. So much for staying home. But the funny thing was, I felt ok.

After taking the med she slowly started to feel better. I got her food and kept on eye on her, making sure she was doing ok.

I have noticed this kind of thing before. Obviously, there are times when I’m not at all able to care for someone else, or when caring for someone else will make me feel worse. But then there are other times, times like today. Times when I’m not doing great, but I’m not doing horribly either, and taking care of someone else gets me outside of my own head, distracted from my own condition, and eventually I even begin to feel better.

I feel bad my friend had a migraine. I wish that hadn’t happened. Still, it was a good reminder for me:

Sometimes the best medicine is taking care of someone else.


I want my time back

May 25, 2017

Back in the days when I worked full time, I felt like my job ate up all of my time. And it did, in a very obvious way.

Now I feel the same way, but it’s less obvious.

I’m trying to work, to earn some money, and it’s hard. It’s also time consuming. I’m doing this part time because that’s all I can manage, but even that feels like a lot.

And then there are the doctor appointments, the daily physical therapy, the extra time spent on food preparation, and just resting. The health stuff is its own part time job.

I’m constantly doing things and when I’m not, I feel bad because I should. Right now, I should be working on my new business, running errands, and exercising. There are so many shoulds, and not enough time.

I want to believe that I would gladly put in the time if I knew it would work, but even if the business succeeds, can I still maintain this level of input? What happens if I get a dog? How would I find time for him?

I am trying so hard to constantly work and be productive during my “good” times of the day, so I can rest during the others, and in that respect I’m succeeding. I get plenty of rest. But I also feel plenty of overwhelm. I don’t know what the answer is, or if there is one. I only know that I can’t do as much as I’d like, which is still only 20% of what I used to do, and it’s frustrating.


Why socks are stressful

April 27, 2017

My friends saw the socks lined up in my drawer and they laughed. I guess I understand. It does look odd, after all.

They had taken the drawers out of my dresser so the dresser would be easier to move across the room (because my friends are super awesome like that) so they noticed the socks.

I had only lined up my socks a couple weeks earlier and I was already loving it. Now it’s been more than 2 months and I’ll never go back. I can see all of my socks at a glance, and I can easily grab the ones that are right for that day. This is important, because choosing the right socks can be stressful.

Yes, I’m talking about socks. The things that go on your feet.

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One morning 12 years ago my toes were swollen and painful. It was hard to walk. I saw specialists, had tests done, and it was never figured out. The only thing that helped was Prednisone, and that’s not a long term solution. Over the years, the swelling and pain came and went, sometimes at random, sometimes obviously triggered by heat. Until a few years ago. A few years ago the swelling came and it stayed. I don’t know why. No one knows why.

The amount of pain varies. I wear special orthodics, the only shoes I wear are sneakers and boots, I’m super careful. But there’s only so much I can do.

The more swollen my toes are, the harder it is to wear shoes. Or socks. On cold winter days sometimes I can’t wear socks at all, so I sit in a chair and wrap a blanket very loosely around my feet to keep the warm. It’s not ideal, but what else can I do?

Some socks are tighter in the toe, others are looser. I try different brands, always searching for the “best” socks for my poor little toes. Summer socks aren’t too hard in general, but winter socks tend to be tighter, plus they’re thicker, which makes my shoes feel tighter. But I can’t wear summer socks year-round because it’s simply too cold for that. Thanks to Raynaud’s, the circulation in my fingers and toes isn’t good, and my toes get very cold very easily. I also have to be careful not to wear warm socks on days that won’t be cold, because my toes could easily overheat, and then they’d become even more swollen and even more painful.

We all have these calculations we make in our heads a thousand times every day. When to take pills, which foods to eat, whether my fingers can manage the buttons on that dress today, can I walk in the sun or do I have to stay in the shade. For me, which socks to wear is just another calculation. Still, it’s one I struggle with Everything. Single. Morning.

I became inspired to line up my socks as I was reading an organizational book. I put warmer socks together and cooler socks together. Then I organized them by how loose or tight they are around the toes. It’s been amazing! No more hunting through my drawer each morning looking for the “right” socks for the day. Now I just decide on the weather and how swollen my toes are. If it’s a cold day and my toes aren’t too swollen, I can go for those cozy red socks. If it’s a cold day but my toes are more swollen, the soft purple socks will do.

It seems silly to an outsider. But to me, it’s one of the thousand daily health calculations I make that’s been made easier. So it’s worth looking silly. Because it works.

 


Why am I having flashbacks?

April 11, 2017

Something happened the other day that scared me, and it finally occurred to me that I should talk to you guys about it!

I’m keeping this short and to the point.

For several years now, from time to time something will trigger me to very strongly remember a medical experience. The memories are strong, but they’re just memories.

Then the other day, it wasn’t just a memory. It’s what I’m guessing is called a flashback. I wasn’t confused. I knew I wasn’t in the doctor’s office. I felt like I was there. I could see the nurse standing over me. I could feel my arm outstretched as she looked for a vein (while in real life it wasn’t stretched out at all.) And I got all of the same symptoms I’d had at that time – the dizziness and jumpy vision among others, all while I knew it wasn’t real, it was a memory or something. Each flash was short, but then it would come back (the trigger remained for a while.) As soon as the trigger was gone, I felt fine. Shaky and confused, of course, but fine.

Afterwards, I figured out what triggered this. But WHY was it a flashback?

For years I have assured people I don’t have PTSD. I’ve read the descriptions many times and I don’t have it. But maybe I have something else?

I don’t have a therapist and I won’t have one any time soon. After all, this only happened once. And therapists are expensive. And my past therapy experiences weren’t good, so it’s not like I’m feeling like one will help me.

But the thing is, I want to know what’s going on. A label might help, because then I can look into ways to prevent it, or at least ways to handle it if it happens again. Coping mechanisms.

Has this happened to you? If so, what caused it? What do you do about it? Please let me know, so maybe we can learn from each other!


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