When friends have chronic illnesses too

August 8, 2017

The first couple of years in my chronic pain support group, I got a lot of knowledge and support from the group. But now, what I get out of the group more than anything else is friends who understand.

It started slowly, with a couple of conversations after the group ended. Eventually, two of us decided to get together. Then we kept hanging out. That emboldened me, so I invited another potential friend to hang out. Then another. I haven’t stayed friends with all of them, but the ones I have kept in touch with are now valued friendships.

It’s not all rosy. Having friends with chronic illnesses can present its own challenges. We cancel on each other constantly. I invited a group over to my place. 6 were going to come. 2 showed up. Everyone else didn’t feel up to it at the last minute.

And speaking of logistics, it’s so great to have people to hang out with on a weekday! Being home so much can be isolating. Not working is lonely and makes me feel unproductive. Having a place to go and someone to see, even just once or twice a month, makes a huge difference.

Now on the flip side, when I’ve been the one to not show up because I don’t feel well, I know they understand. I don’t have to explain, make excuses, or apologize. It’s totally fine. And that’s awesome.

Of course, we don’t always understand. No two illnesses are the same, even when you have the same diagnosis. We share what helps us and what doesn’t, which is great. But sometimes there’s a bit of envy, frustration, and defensiveness, too. Why is she complaining about having trouble walking when I can’t walk at all today? Should I tell her about my pain when I know hers is even worse? I wish I could work/travel/have kids/have dogs/go to festivals/whatever like she does. I have had all of these thoughts and feelings and more. I try to go with it. It’s natural and ok to feel it sometimes. I just make sure it’s not all the time.

One friend I especially like is someone I think I would have been friends with if we were both healthy, too. When we hang out, sometimes we discuss our health problems. More often we’re busy with the other things in our lives – talking about my dating status, tossing a ball for her adorable dog, playing board games, comparing our latest crochet projects. Just stuff. Because we have interests in our lives besides our health, and that’s important. And yes, we talk about health stuff too. We give each other tips for handling certain symptoms. We provide an ear when the other person just needs to talk. We bounce idea off each other.

These friendships mean the world to me.

Not all friendships are in person. I have been amazed at the friendships I have cultivated online, too. It can be hard with this blog, since it’s anonymous, but I am also online in the chronic illness community as me. Through this blog, I have had some great email exchanges with folks. Through my own profile I have met amazing people both online and in person.

If you don’t have friends or community with chronic illness, and you feel lonely or misunderstood, give it a shot! Just remember, chronic illnesses shouldn’t be the only aspect of your friendship. Do other things, talk about other things, focus on other things. From time to time it’s nice to have someone to complain to about all of this health shit, but that won’t be the basis of a solid friendship.

Do you have friends with chronic illnesses? If so, how does that affect your friendships? Please share in the comments!


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.


Have you called your senator today?

June 29, 2017

HELP!

In the chronic illness community, there seem to be two groups of people:

  • People in the U.S. who are terrified of losing their healthcare or of it becoming completely unaffordable.
  • People outside the U.S. who are wondering what the hell is wrong with us.

These are some scary times.

If you don’t know what’s going on, here’s the basic summary. Our political system has become incredibly divisive. It’s been divisive for a long time, but there are no longer congresspeople working with folks from the other party. Politicians go out of their way to hurt the other part just for the sake of hurting them. Even if politicians from different parties agree with each other in private, they won’t do it in public.

When Obama became president, the Republicans vowed to do whatever it took to prevent him from being reelected. But he was reelected. Still, they could destroy everything he had accomplished. For 7 years they talked about repealed the healthcare plan he put into place. They talked big. And then the day came when they had to actually do what they’d said.

So now here we are with a Republican-majority congress and a Republican president. They have no excuse for not repealing Obama’s healthcare plan. The thing is, they suddenly realized that wasn’t so easy to do. People like it! They use it and rely on it! They need it.

But after talking big, the Republicans can’t just say, “Oops, turns out we can’t come up with something better that will make our richest supporters happy, so we’ll just keep what we’ve got.” No, they have to get rid of it. And the plans they have been coming up with instead are cruel.

Yes, cruel. That’s no exaggeration. The House’s plan would cause 23 million people to lose health insurance. The Senate’s plan would cause 22 million people to lose health insurance. Preexisting conditions could cause your rates to skyrocket. A “preexisting condition” could be anything from cancer to lupus to migraines to pregnancy.

The Senate’s plan would remove access to free birth control, abortions, and maternity coverage. That’s right. So you won’t have any monetary help avoiding pregnancy, ending a pregnancy, or getting medical treatment during a pregnancy, never mind actually giving birth to a baby. Cruel.

Both plans cut billions – yes, BILLIONS – of dollars from Medicaid. Medicaid is the government-run healthcare program for the poor and disabled. You know, the folks who most need the help.

As for “regular” folks with jobs and steady incomes, they’re safe, right? Not really. Predictions are that their premiums, deductibles, and co-pays will go up, even while the covered services (like contraception, abortion, and maternity care) are reduced.

So who benefits? The rich will get huge tax breaks. Insurance companies will also save money.

Um…. Yeah, I’m usually speechless at this point. For about a minute. Then I start yelling again.

Remember, these bills are hugely unpopular. But they can still pass. Because the Republicans would rather do something unpopular than nothing at all.

As for me, I currently have two different health insurances. My primary insurance covers 80% of each bill and the secondary insurance – Medicaid – covers the other 20%. If any of these bills pass, I will likely be able to keep the primary insurance, but there will be limits placed on it, so it won’t cover as much as it does right now. There aren’t any details yet. I don’t know if it will still cover the CPAP-type machine that I need for my sleep apnea, the many doctors’ visits, the blood tests, or the MRIs.  I would lose the secondary insurance. I might or might have access to other secondary insurances that I could pay for myself. Right now, those cost about $250 per month – money I don’t have available. But that’s right now, and those prices will go up under these new Republican plans. How would I pay for it?

Shit.

This is bad. Horrible. Catastrophic.

Cruel.

So what can you do? I’m so glad you asked! Here’s what you can do:

  • If you are in the U.S., call your Senators! Tell them to vote against these bills! Tell them you want to keep the Affordable Care Act just the way it is. If you can’t call, send an email. Their contact information is right here: https://www.senate.gov/senators/contact/
  • If you are in the U.S., call other Senators! There are many who are on the fence, and we need them with us on this!
  • No matter where you are, ask your friends in the U.S. to call their Senators!
  • Post about this on social media. We need awareness! Too many people don’t realize what’s happening or how it might affect them. And that’s a problem. On the other hand, if the 22 MILLION – that’s 22,000,000 people! – all called their Senators, and each got a friend and/or family member to call also, there’s no way the Senators would vote for this. They wouldn’t want to risk losing the next election, after all.
  • [Edited to add on 7/5/17:] Attend any town halls that you can and make your voice heard! These town halls have a HUGE impact, not only in the media, but on the senators themselves. If they get a lot of feedback at these town halls, they might very well switch their votes to be against this heinous bill.

I’m sure my Facebook friends would be sick of my myriad posts on this subject if so many of them weren’t also concerned. Many are in much worse situations than me. Some are just as disabled, but will lose ALL of their health insurance coverage if this passes, and they don’t have any savings to manage without it.

Remember, 22 million people will lose health insurance if these bills pass. But how many of those 22 million will survive? Because people will die. That is a fact. And while I have no doubt that history will prove me right on this matter, I don’t want to be right. I want to be alive. How about you?

What are you waiting for? If you feel up to it, take 5 minutes RIGHT NOW to call your Senators, call other Senators, ask your family and friends to call Senators, and post on social media. Because unless we take action, millions of people will lose access to healthcare.


There’s no such thing as a quick swim anymore

June 26, 2017
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I wouldn’t mind being able to do this!

When I moved to a new apartment a few months back, a lot of friends were excited for me that I now had a pool. They were a lot more excited than I was.

I lived in a building in a pool once before. It was about 15 years ago. I was living in sunny Los Angeles, where pools are more common, and I was in much better health. I swam regularly during the months when I had less work (and more time.) It was lovely!

But this is not that. This is different. My new friends in the building often invite me for a quick swim. They have no idea what that really means for me.

  • Driving to the pool seems silly, but it’s 1/3 mile away, which is sometimes too far to walk, especially in the summer air.
  • If it’s too cool, no one wants to swim.
  • If it’s too hot, I can’t be outside, even in the pool.
  • If it’s too humid, I can’t be outside, even in the pool.
  • I must bring a lot of water and snacks, even for a “quick” swim, to stay hydrated and keep my strength up.
  • I will be in a lot of pain afterwards.
  • I will be in a lot of pain the next day.
  • I will be exhausted the next day.
  • I might have to cancel all of my plans for the next day so that I can rest and recover.
  • I won’t be able to cook that night, so I need to have leftovers available for dinner.
  • Obviously I can’t swim if I have plans later in the day, because I’ll need to rest.
  • I need to take extra meds if I’m going to swim, which means I have to know about swimming far enough in advance to take the meds.

There’s more, of course, but this gives folks a good idea of why swimming for me isn’t the relaxing, care-free, spontaneous, fun activity that it is for my neighbors. There are many things in our lives that get ridiculously more complicated, painful, and exhausting once chronic illness enters the picture, like grocery shopping. The big difference is that swimming is completely optional. Sure, skipping the pool hurts my social life a bit. But it helps my LIFE life a lot!

I’m not saying I won’t go swimming at all this summer. Only that the logistics have to be just right. I need to know the right people will be there so I’ll have, I need to be feeling good that day and not have other plans in the next day and a half, the weather has to be just right.

It’s not easy. But then, few things are when chronic illness is involved. So yes, I will be the “spoil sport” who skips the pool. I can live with that. Because I’ll live better for it.


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.


The importance of community

June 15, 2017

Last week I saw my primary care doctor for my annual exam. At the end of the visit, he brought up the fact that I was on disability. He said that only 5% of people ever manage to get off of disability benefits. He said that it was important to find activities to keep busy and productive. Then he talked about the isolation that can come when you don’t have a job to get you out of the house, and you don’t feel up to going out a lot. He said it was important to have community, and it’s important to make an effort to create that community.

He’s so right. (And I love that he’s having this conversation with his patients!)

I assured him that I have community. If he only knew.

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I have worked hard to make friends and build community. It doesn’t come easily or naturally to me. I’m an introvert by nature, and my health issues have made me even more of an introvert. Not being able to go out often doesn’t help either. But it’s important to me to have friends and community in my life, so I made it happen.

For me, the key has been to go for quality instead of quantity. I don’t have hundreds of friends, but the ones I have are good ones. Acquaintances are often happy to help me because they see me helping others.

That’s why when I needed to borrow a wheelchair recently, I had 3 offers to lend me one, plus 2 other folks suggested local organizations that lend out medical equipment for free. When I needed someone to push that wheelchair, I was able to post on Facebook and get some offers from friends and also from acquaintances I barely know. Because I have that community.

Sometimes it’s hard. I put myself out there, which means I’m often asked for help and I need to say no. Thankfully, most people understand my limitations. And they appreciate it all the more when I volunteer. A friend is going out of town and leaving her dog at home, with the dog walker coming by many times each day to walk him. It’s not perfect, but it’s the best they can do. I said that if she gives me her key (which I am getting today), I’ll pop in to visit him a couple times, just so he has someone to cuddle with. She was amazed. To me, this is just a nice thing to do for a friend. I won’t go by every day, but on the days I’m in the neighborhood, I’ll bring a book and read while her dog gets some important snuggles. It won’t be the first time I’ve done this for a traveling friend. (And let’s be honest, while it’s an inconvenience, I certainly won’t hate doggie snuggles!)

I belong to a chronic pain support group. Having people who really understand the struggle makes such a difference. It was one of those members who ultimately lent me her wheelchair, and even put it in the car for me because I couldn’t. I do a lot for that group, too. I created and run a Facebook group so we can communicate easily between meetings. I do other behind-the-scenes tasks, too. It doesn’t take much time, but it helps people. And they notice, and want to help me in return.

It’s so easy to become self-involved these days, and more so if you’re in pain or fatigued or dealing with other symptoms all day every day. Believe me, I know. And so many people lose their friends and their families when they become sick. So I am hugely grateful for the incredible people in my life. My parents and other relatives are super supportive, my childhood friends have stood by me and help when they can, and newer friends are ready to step up and help. Acquaintances do more than I would have expected. Even strangers offer to help, thanks to all of my work in the chronic illness community online (both this anonymous blog and a lot of work under my real name.) I am so fortunate that I began building that community long before I needed it, and that I still have it.

I think we all need to heed my doctor’s words and find a way to build community. It will look different for everyone. Some people will reach out to friends, others will go to events through meetup.com (I’ve built some great community that way, too!) and others will do it all online. Whatever it looks like for you, I hope you are able to build the community that you need and that will support you, just as you will support them whenever you can.

What about you? How do you build community? Please share in the comments so we can learn from each other!


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