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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Painful weather, like it or not

October 5, 2017

It’s October in New England, but you wouldn’t know it if you didn’t look at a calendar.

Every summer I count down until the third weekend in September. That’s when I know the weather will have finally shifted for good, and I’ll be feeling less pain, less fatigue, and less nausea. It’s truly a magical time.

But not this year.

This year we had cooler weather in August, and I was grateful for that, but I also knew it wouldn’t last. September was up and down. But surely October would be my time, right? Not so much.

When you have chronic illness, nothing is simple, and the unpredictable symptoms, flares, and other issues can make life hard to plan. Still, we do our best. For me, that means making more plans in the fall and winter, when I know I will feel better.

That’s why, even though a “simple” weekend away with my best girlfriends is incredibly hard, I felt I could do it if it was in the fall. My friends are understanding, and were perfectly happy to avoid planning anything in September, just in case. They get it. Every time we’ve had cooler, less humid weather, I get text messages and emails from friends saying, “This is your kind of weather! I hope you’re feeling up to enjoy it.” And I love that they understand.

So we planned for “safe” October. Who could have known? This isn’t our typical cool, crisp, wonderful New England autumn.

Thankfully the temperatures are cool enough, though way too warm for this time of year (upper 70s?!? Are you fucking kidding me?!?) My problem is the dew point. It’s supposed to get close to 70 this weekend! Even healthy people find that uncomfortable and for me, it will be near torture. But what can I do? The house we rented doesn’t have air conditioning – after all, none of us thought we’d need it. Higher on our list was finding a house with a working fire place. Last year we did this trip later in October and it snowed. We had a lovely time sitting by a roaring fire, and wanted to repeat that experience. If only.

I am in pain already, and it’s only beginning. Well yes, I’m always in pain, but this is worse, and I know it’s from the weather. My toes are swollen and painful. My knee is swollen and so painful that it’s hard to walk. My neck hurts. Everything is just wrong.

But I won’t stay home. I have been looking forward to this trip for a year. It is my one chance to do this. I will NOT give it up!

I will bring the medications that I can. I will be careful how I eat. And I will block out a lot of extra recovery time when I return. Still, I know this is going to be really rough. I will be in pain, nauseated, and fatigued. Thankfully, I will be surrounding by wonderful women, women I have known most of my life, the only non-relatives who knew me before any of my symptoms began, women who have always been supportive. And maybe most importantly, women who have always made me laugh, even at the worst of times.

So wish me luck. Because I want to be able to enjoy this weekend as much as possible. If only Mother Nature would cooperate.


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.


Going public is like coming out over and over

September 13, 2017

Once upon a time, no one knew I had health problems unless I told them. Ok, that’s not entirely true. There were signs. It’s just that most people didn’t pick up on that signs, or I could shrug them off as an injury or something. It was easy to lie.

Then I decided to write a book.* Now, when you Google my name, that book comes up. And it’s all about having chronic illnesses.

This has been such an interesting experience. It makes my journey public in a way it never was, because even though most people don’t Google my name, I know that they could. And that leads me to think and speak about my health in different ways.

Take last night, for example. I was giving a presentation in front of a group on a different topic entirely. Someone asked a question and I was answering it with a few examples. And then I mentioned medical stuff as a relevant example. There was was, in front of a small group, pointing at a screen, and looking completely healthy except for my knee braces. And I felt odd mentioning my health, but it was relevant. And I even said, “this is no secret – if you Google me, you’ll see the book I wrote on this topic.” And I saw some eyes move south to those knee braces.

It’s like coming out. I joined an online dating site a few months ago. I was taking a walk with a neighbor and she was asking me about it. We didn’t know each other well, but were friendly. She asked if I had met anyone and I said I’d met a couple interesting people. She asked about them, and as I mentioned the man, everything was normal. When I mentioned the woman, I saw her hesitate. I watched her brain churn as she processed that bit, and then we moved on. With other people, where there’s context, I might directly say that I’m bisexual. But no matter what, if the topic is going to come up, I need to come out over and over again, because whether I’m dating or single, no one will know I’m bi if I don’t mention it.

And every time, I wonder how the other person will react. Will they be accepting? Will they be jerks? Will they ask the same old tired questions?

Just like mention my health problems. Every time, it’s necessary to specify what I’m talking about. Every time, I wonder how they will react. Will they be accepting? Will they be jerks? Will they ask the same old tired questions?

Sometimes I want to wear a sign on my head, or print business cards to hand out: YES, I HAVE CHRONIC ILLNESSES AND NO, THE DETAILS ARE NOT YOUR BUSINESS. Except that now, with the book, some of the details are out there. So they could be your business. Still, it doesn’t mean I want to talk about it all the damn time.

But you see, there’s also the part we don’t usually think about: it’s freeing! Every time I start to question whether or not to mention something, I remember, it’s out there anyway, so why not talk about it? Is it ok to share this? Might as well. Is this a secret? Apparently, not any more.

Again, it’s like coming out. I don’t have to watch my pronouns anymore. I can just speak about past loves and lovers like anyone else would. Sure, I have to use my judgement for safety. Yes, some people will be jerks, but there aren’t any secrets.

That isn’t to say I don’t have limitations. I still write things on this blog, for example, that I wouldn’t say publicly. There’s definitely something to be said for having a pseudonym. Still, to be able to speak publicly and not question myself constantly is HUGE!

It also means more people in my life know about my health issues. I’m more open about it on Facebook because, after all, they see me promoting my book. There’s no question about it at all anymore.

Coming out about orientation, health, or anything else is a personal choice. This isn’t something I would have done even just a few years ago. I am so glad I have. For me, right now, this was definitely the right move. If it’s not right for you, though, that’s cool, too. You have to do what works for you.

Have you been public about your health stuff? How has that gone for you? I’d love to hear about it in the comments!

*It’s frustrating that I can’t tell you what the book is. I want to so badly, but that would defeat the purpose of having a pseudonym here.


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!


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.


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