The power of a hug

October 14, 2017

Somehow, I did it. Despite the crappy weather that makes me feel horrible, I managed to not only survive the short weekend with my friends, but to enjoy it!

Ok, it wasn’t all great. I did feel like shit part of the time. But having friends there made it easier to handle in some ways.

Of course, having friends there also made it harder to handle. They went on walks when I couldn’t, and while someone was always hanging out at the house with me, I know they limited themselves to do it. I wanted to be carefree and have fun, but life isn’t always that way.

Not that the others were carefree. One was frustrated with a spouse, another had job worries, etc. You know, life. It’s easy to forget about that stuff when you live alone and can’t work, but health does not guarantee an easy, stress-free life.

So there we were on Saturday night, having a lovely dinner, when it hit me. Symptoms. Fuck.

I went to lay down on the couch. It was an open space. No one could see me because the back of the couch blocked their view from the dining room table, but they knew I was there, and I would sometimes speak up to join in the conversation as they cleared the dishes and put away food. I was nauseated and in pain, not that they knew what my symptoms were. They just went about their evening, because they know that’s what I prefer. No fuss.

And then it got worse. Resting on the couch wasn’t enough. I found myself breathing hard, face pressed to a pillow, willing myself to feel better. I wanted to have fun with my friends. I didn’t want them to know what was going on.

It’s lousy that we have this stigma in our society. These are my closest friends, but I didn’t want to tell them what was going on because I didn’t want to sound whiny, or like I was trying to make a big deal out of nothing.

How ridiculous. How common. How sadly natural.

And then suddenly, as if she knew, one friend came over, leaned over the back of the couch, and asked earnestly if she could do anything for me. I said no, while at the same time, wishing I could ask for a hug. She’s not the huggy type, and I felt ridiculous. Still, her asking was like a hug in a way, and it suddenly brought tears to my eyes.

I never cry when I feel bad like this. It wasn’t that bad, on my own scale of suckitude, after all. But having someone care to ask made me emotional. I’m not used to that. Usually when I feel horrible like I did that night, I’m at home. Alone. With no one around to even be aware that something is wrong, much less to offer help.

Then another friend came over and simply gave me a hug. And when I let go to pull back, she held on. She kept hugging. She hugged and hugged. And it felt amazing.

The next day I pulled her aside to tell her how much that hug helped. But in the moment, I just felt it and enjoyed it.

Amazingly, I started feeling better right after that. Well enough to at least get up for some more medical cannabis. That helped some more. And then, suddenly (though not really suddenly at all) I was able to get up and move around. Ok, my knee still had shooting pains, so I wasn’t walking well. I had to sit with my leg up for the rest of the night. But the nausea went away. The pain because bearable. And my heart felt happy.

Because for once, friends were there to offer help and give me hugs. And that made all the difference.

 

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How a weekend away is a 2 week ordeal

October 2, 2017

I’m going away this weekend and I’m super excited!

I used to travel all the time. 2 months at home felt like FOREVER. I could pack an overnight back without even thinking about it. I got on a plane multiple times each year and did some weeks and weekends within driving distance. A weekend away in the Berkshires, less than a 3 hour drive away, would be no big deal.

But that was then.

And this is now.

Now I have to plan. I am being super careful about washing my hands and avoiding germs. I can’t get sick now!

I need to bring food with me. I will be with friends and some food will be safe for me to eat, but I need to bring other food. So I went to the grocery store today (Monday) and carefully planned out what I will make and which days I will make it. I also promised to bake cookies to bring, and I can’t do big cooking on the same day I bake, because I won’t have enough energy for that, but I can’t make anything too far in advance because I want it all to be fresh.

The day before the trip I will do some packing, but most of my stuff (my ASV (which is like a CPAP), my medications, toiletries, and more) can’t be packed until the day of. I need to ration my energy that day. Thankfully, I only have to drive half an hour to a friends’ house that day and then she will do the rest of the driving from there. Still, even being a passenger will be tiring and painful.

I am already thinking about how to handle my food and medications on the day of the trip. I always feel like shit the first night I travel. So I am being careful to bring everything I need to take it all at the right times: I will take something to help with the pain and the nausea when we start to drive, something else for the pain when we arrive, then something else for the nausea a few hours after that. Between medical cannabis and pepto bismol, the right foods and lots of rest, I am hoping really hard that it won’t be too miserable. Thankfully, I will be with friends who will understand if I can’t hang out with them that night.

I have scheduled my medical appointments around this trip. I was able to get a physical therapy appointment just a couple days after I return, so hopefully that will help with the pain from the long car ride and sleeping in a less-than-great bed.

My calendar is empty for the first 2 days after my return. That will give me time to rest and recover. I will get a lot of sleep, watch tv and movies, crochet, and read. If I feel up to it I will do more, and if not, that’s ok too. During my recovery time, I still need to eat, and I might not be up to preparing food, so I am making sure to cook and freeze food now that I can eat when I return.

I want to travel more. I really, desperately do. But then I remember what a trip like this is like. I can manage it ok, because it is only two days. I will leave at noon on Friday and be home by 5pm on Sunday at the latest. And I won’t be flying. I know it would be much harder if I was flying, for many reasons. It would be more painful. I might feel anxious at being “trapped” on a plan. Not to mention, I wouldn’t be able to bring any cannabis with me, and I can’t imagine how I would manage my symptoms without it.

At the same time, a friend and I are trying to schedule another weekend that I can visit her. The drive is less than 2 hours, but I would be driving myself. She would provide food I could eat during the entire visit, but aside from that, everything else would be the same. Resting for days in advance, blocking out days afterwards for rest, figuring out medications and other things to help alleviate my symptoms while knowing that I will almost definitely feel like shit the night that I arrive.

Sometimes it doesn’t seem worth it. But I know it will be in the end. Even thought it won’t be easy. It won’t be like it was before. But hopefully it will still be fun.


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.


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.


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.


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