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!


Another season, another dog delay

April 18, 2017

I feel like I’ll never get a dog. It was almost two years ago, in June 2015, when I finally decided I was ready to get a dog. And here I am, dogless.

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If you’ve read this blog for a while, you know I came close. That was a year ago, and here I am, no dog.

After last year’s fail, I was shaken. I felt that I shouldn’t have a dog. Finally after many months, I began to feel almost ready again. Then my parents went out of town and I watched their dog for a week. See that fluffy cuddler in the photo? After a week with him I was SO READY! But I had been applying for apartments, I had no idea when I would move. What if I got a dog and then learned I had to move just a few weeks later? Even if the dog could handle it, I knew it would be too much for me. Even just the move alone felt overwhelming.

So I waited.

And waited.

Just a few weeks after cuddling with my parents’ lovebug, I was offered an apartment. That meant no dog until after the move. Once I moved, I had to unpack and get set up. I kept telling myself I should get fully settled before I started looking for a dog, but it was so hard. Before I knew it I was on Petfinder, Adopt-a-pet, and several local rescues’ sites. But it was no good. Most dogs weren’t a good fit, mostly because of my health limitations. When a dog did look like a fit, I applied right away, only to learn someone else had gotten there before me. I set up alerts on the various web sites, so I would get an email when a new dog was posted. I applied the same day, and still had no luck.

And then last week I had to face the reality that my dog search must be put on hold. It’s spring here in Boston, which means more pain and less energy for me. That would be hard with a dog, but I would manage. But with a NEW dog, it’s too much. The first few months of dog ownership will be incredibly difficult and tiring. I need to be at my absolute best. And during the coming months I will be at my worst.

Waiting until the fall is the smart thing to do. I will feel better. I will be more capable. But it means waiting another 6 months before I even begin to search again! And at that point, I might not find my dog.

People keep telling me to hold out, it will work. If it was someone else, I would be encouraging them, too. But right now, it just feels so impossible. I want my dog, my fluffy ball of love, and I don’t want to wait any longer. It’s been 2 years. Will I ever become a dog momma?

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When even medical professionals don’t get it

March 30, 2017

There are the medical people I know in my personal life: a distant cousin, an aunt’s in-laws, friends of friends. Sometimes it’s just a random person I meet to hears about my health issues and lets me know they work in the medical field.

Some of these people are awesome: understanding, supportive, helpful. And some make me want to scream by thinking they can offer me advice. People I barely know, or maybe don’t know at all, tell me what I should do for my health. Or worse, they don’t understand that I really am sick.

But then there are the worse ones: the medical folks I see for my own treatments who Just. Don’t. Get it.

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Usually I walk away. If they don’t understand, then I don’t want to waste my time. But this latest one is a tougher situation.

It’s my physical therapist. For one thing, she means well but she’s scatter-brained. She asked me if I’d tried a particular yoga pose. I said no, I was told not to do yoga. She was surprised. I pointed out that she told me not to do yoga just a few weeks ago. Things like that. When I walk in, she has no recollection of what we did last time, even though I know she writes notes after every visit.

She also does a good job overall. And there’s no one else to see. It took years for me to find her! I searched for ages for someone to do this particular type of treatment (easy) that my insurance would cover (almost impossible.) One of my insurances covers her and she’s giving me a break on the other. I really appreciate that. She’s been so kind about it. And she does a good job.

But then she wants me to exercise more, to make sure I build up a good sweat. I try and explain how adrenal fatigue works, how that could be dangerous. She wants me to talk to my other doctors to make sure I’m really not supposed to be doing it. You know, in case we hadn’t already had this conversation 80 bazillion times. In case I misunderstood. In case I don’t know my own body! So frustrating!

And then yesterday she grabbed my wrist for the millionth time. I know this is just a typical maneuver. I know she does this automatically because she’s done it so many times before with countless other patients. But she’s a physical therapist and she needs to take each patient’s needs into account and I don’t know how many more times I can tell her not to do this before I completely lose my shit.

Because I’ve been clear. I’ve said it hurts. I’ve explained that I have a long history of pain there. I’ve said that it upsets me. Yesterday I calmly talked about it after the appointment. I explained the emotional trauma a bit. She tried to say there was no need to explain, but I figured hearing it might help her to fucking remember! 

I don’t usually swear on this site, even though I do in real life. Not a lot, but enough. I can hold back when I think it will offend people. Usually. But not today, because this is SO UPSETTING to me!

I have 25 years of pain in my wrists. It was my first symptom. But that’s not the reason it upsets me so much. No, it’s because of how I was treated. Doctors did horrible things to that wrist and to me. I had to start off my explanation by saying, “I don’t have PTSD but….” Because while it’s not PTSD, I do have a panic response. I told her that there is no one in this world I trust to touch my wrist, and that’s true. There are some people I trust to touch near it, and some don’t make me panic as much, but I don’t trust anyone. Not even my mother, my best friends, my past lovers. And certainly not medical professionals!

So we’ll see if she listens. If not, I might have to take more drastic action. But for now, we’ll see.

I try to be patient but she’s a medical professional. She should know better.


Getting ready to date

March 20, 2017

I’ve been super busy. Well, super busy for me, anyway. I have fewer “good” hours in a day than a healthy person, and they get filled up way too easily.

Which makes me wonder how I’ll manage to go on any dates.

I have written about dating on here many times. It’s not my favorite thing. I want a relationship, but I don’t want to date. First dates are difficult, tiring, time consuming. They’re full of small talk and uneasy silences at worst, and uncertainty at best.

I used to date a lot, but for the past 2 years I barely have. There are a lot of reasons for this, mostly having to do with bad breakups, a lack of energy, and different priorities. If I’m going to spend my  energy going out with people, I’d rather go out with friends. After all, I don’t see my friends enough anyway.

The thing is, that leaves me single and alone. I don’t mind being single and alone overall, actually. It’s really very nice in a lot of ways. But sometimes I want a companion. I want a best friend. I want sex.

So I’m trying to get back out there. Last month I went to a singles’ event and met two very nice people. The first was funny and interesting and smart… and self-centered. He never asked a single question about me. I knew all about his hobbies, his job, where he went to school. He doesn’t know any of that about me.

The next was cut and sweet and kind and lovely and said she’d like to be friends. Ouch.

So now what? I have two choices. I can sign up for OK Cupid or another site, which I really don’t want to do. I’m not a fan for a whole lot of reasons. Or I can try to meet someone in person, which hasn’t exactly gone well for me (see above: almost no dates for 2 years – and I wasn’t turning anyone down.)

I need to learn to flirt. At some point I stopped flirting, and it’s like I forgot how. I need to dress better – not easy when the clothing budget is $0. I need to make an effort.

An effort.

As if I don’t already make an effort every minute of every day. As if simply getting dressed and putting on minimal makeup and driving to meet someone and holding up my end of a conversation isn’t effort enough. As if dealing with my health isn’t effort enough.

But if I want to date, what choice do I have?

So I’m going to try. I’m going to dive back into the world of trying to flirt on a first date while also debating whether or not to hint at my health issues. I’m going to skip out on things during the day so I can have a simple coffee date in the evening. I’m going to go back into the world of suggesting alternatives to all of the dates that someone suggests which I know I can’t manage, without telling them why I’d rather sit in a coffee shop than enjoy an outdoor picnic. I’m going to go back to avoiding kisses on the first date because I haven’t yet told my date that the gluten they ate will make me sick if our lips connect.

And I’m going back into the world of constant rejection. Because apparently it’s not enough that my body rejects me, now I’m courting it from others. Somewhere in the last 10 years, between my late 20s and my late 30s, I stopped turning heads. So I need to accept that passive rejection as well.

So please wish me luck, friends. Particularly when it comes to finding the energy and pain-free days to go on dates. And please offer me any tips you have. Especially on flirting. I need lots of help with flirting.

 


Desperately wanting to get off benefits

February 26, 2017

As I started to write this, it felt incredibly familiar. So I did a quick search and what do you know, I wrote this almost identical post a year ago! So much has changed, and yet so much has stayed the same….

My health has continued to improve. No one is more surprised than me! It’s not like I’m well enough to work a full time job, or even a part time job from home that requires set hours. But I’m doing some part time work from home for myself (doing some consulting) that isn’t paying much yet, but there’s some hope. Still, it’s hard to aim for a very specific amount of money, knowing that I can’t earn “too much” because I’d lose my benefits.

Lately I’ve been more desperate than usual to get off of benefits. I hate the feeling of enforced poverty, and I’m not even poor! The income is way too low, but I have a ton of savings from back when I worked, and by cutting out all of my unnecessary expenses and getting a bit of help from my parents, I’m making it work.

The thing is, I don’t want help from my parents. They’re lovely and I adore them and they never do anything to make me feel bad about needing their help. But I was financially independent the day I graduated college (they paid for it, bless them.) I had a job, an apartment, and savings from all of my previous years of work. They might occasionally give a generous check as a birthday gift, but that was. Now, they pay for my cell phone, pick up groceries for me, and do other little things, in addition to helping out in larger ways. I love them for it. But I hate it.

On top of that, I miss luxuries! I don’t need anything too fancy, but I’d love to go out to dinner without having to worry about it. I want to buy a sweater or two to replace the 5 that are threadbare. I hate that everything I spend beyond my rent is coming out of my savings, with the knowledge that I’ll never be able to replace it. Once I was out of work for a while, and I spent money from my savings. Fine. Because I knew that once I got a job, I’d put money back into my savings accounts, and I did. But this is different. If I stay on this path, I will never again be able to save any money at all. And that sucks so much.

My new consulting business is financial coaching. It’s something I started doing ages ago, back when I had a full time job, but now I’m trying to do more of it. It sucks to advise people on how to build up their savings when I can’t do that for myself. I read books and blogs about effective ways to save, thinking about which principles I’d like to apply myself, and then I remember that I can’t, and I never will.

I feel trapped. And lately I’ve been trying to escape from the cage. But there’s no way out.

I do the math over and over. After all, that’s my thing: calculating money. I figure out how much I would need to earn in order to support myself without Social Security, fuel assistance, food stamps, MassHealth (Medicaid), Medicare, or my new affordable housing situation. I multiply for taxes. I do the math and it feels impossible. But what if….?

And then just as I begin to think it might be worth trying, I remember that even if I can manage to work for myself from home for a while, chances are good that my health will take a dive at some point and I’ll be unable to work again. I could try applying for benefits, but it took over 2 years the first time, and I there’s a good chance the next time I wouldn’t get them at all.

If I’m going to get off benefits now, I have to earn enough that I can save huge amounts every year to defend myself against needing benefits again in the future. I have a lot of savings now, but not enough to last the rest of my life, which could be another 50 or even 60 years. I would be too nervous to go off benefits until I was saving large amounts of money. That would be in addition to the money I’d need to earn to pay my regular bills.

This isn’t impossible. My odds are better than 0. It’s just that right now, at this moment, it doesn’t feel that way at all.

Still, I’m aching to get out of this cage.


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