When the best medicine is taking care of someone else

June 17, 2017

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

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

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

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

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

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

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

Sometimes the best medicine is taking care of someone else.


I want my time back

May 25, 2017

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

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

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

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

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

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

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


Why socks are stressful

April 27, 2017

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

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

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

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

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

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

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

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

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

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

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

 


Why am I having flashbacks?

April 11, 2017

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

I’m keeping this short and to the point.

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

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

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

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

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

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

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


What is that ghost pain?

March 3, 2017

My physical therapist kept asking “Does anything hurt?” It was a good question, but I had no idea how to answer.

I felt pain that I knew was pain, and then I felt other pain that wasn’t real. It wasn’t in my head, exactly. It was more like my foot had fallen asleep, but instead of pins and needles, it hurt. And that spot on my leg. And my shoulder.

I have had so much pain for so many years, I’m good at ignoring it. Then when someone asks if I’m in pain I need to stop blocking it out, and it comes rushing at me all at once. PAIN!

This took it to a different level. I had acknowledged my pain, but by focusing on every movement, every massage, and trying to determine if it was causing more or less pain, I was too focused. It gave the impression that everything hurt. But there were different kinds of pain, and some were more “real” than others.

This isn’t the first time this has happened. But since I was lying on the massage table for a while, I had plenty of time to think about while I tried to figure out if that pain in my back was real pain or this ghost pain. And did my ankle really hurt, or was that more ghost pain?

I wonder if I’ll ever find a way to explain this to someone who hasn’t experienced it? “You see, there’s real pain, then there’s this shadow of pain that can pop up anywhere….”

Have you experienced what I’m talking about? If so, do you have any idea what it is???


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.


Tapping into my extrovert side

February 6, 2017

img_20161223_091955I’m an introvert. If I’d known that about myself and understood it, my teens and 20s would have been a lot easier, that’s for sure! It turns out, it’s ok to want to stay in and read a book on a Saturday night. Go figure.

I also happen to be a social introvert. I love being with people. I even feel like I need to be around people from time to time. And on the days I’m feeling more extroverted, I’m good at it. I can have pleasant conversations with good friends and with total strangers alike. As long as I get plenty of breaks for alone time so I can recharge.

The thing is, when you’ve got a chronic illness that creates so much fatigue you can’t work and can’t always leave the house, and so much pain that sometimes getting to the bathroom takes everything you’ve got, social time can be hard to come by. Friends sometimes come over, but not so much these days. As my friends have begun to have kids, visiting has become difficult or impossible. I understand and I don’t blame them. But it still sucks.

Six weeks ago I moved. I can’t believe it’s already been 6 weeks! I knew moving would mean that some friends would visit less often, since I’m not on public transportation anymore. Still, it’s not like I had that many visitors anyway. It was worth the trade-off, I figured. Little did I know!

This is the first time since college that I’ve lived in an apartment complex, but I’ve never lived in a complex like this. People are so nice and friendly!

First there was the complex-wide holiday party. It was less than a week before I moved in, and I should have been home packing boxes, but I knew it was important to meet people. So I got slightly dressed up, drove all the way out, and put on my extrovert costume. I met several people, including a few who lived in my building, and traded phone numbers with a couple of them.

After the move I made a point of talking to neighbors. I introduced myself to everyone I met. I knocked on doors in my hallway. I chatted with the woman clearing snow off the car next to mine, and the random person passing walking past me on the sidewalk. I smiled and was nice and friendly.

And it’s paying off. A neighbor and I have been taking walks in the evenings when she gets home from work. We have done this at least a half dozen times, and it’s really nice. Another neighbor invited me over for game night. That led me to meeting more neighbors. I hit it off with one right away, and we’ve now hung out a couple of times. Today I saw a neighbor I’d spoken to a few times walking by my patio door so I opened the door to say hi. She and her puppy (so cute!!) came in and I invited her to sit. We chatted for a bit as the puppy sniffed around and then returned to me for petting. As she left, I saw another neighbor who I knew, so I invited her and her pup in, and they hung out for a bit.

None of these are life-altering per se. But they matter. On a day when I wasn’t going to socialize, I socialized. It didn’t last long, but it happened.

I have spent many days being home alone and feeling lonely and sad. I know I will feel that way many more days. It sucks, but that’s my reality. A lot of the time I won’t want visitors. But on the days that I want to see people but don’t feel up to going anywhere, how amazing that I have neighbors right here who I can hang out with! It might not happen every day, but that doesn’t change the fact that it’s always possible. In time, I will get to know more of them. Some will become friends and some won’t. Just having people to say hi to, though, makes a huge difference.

I knew this was a good move for me. This just makes it 10 times better.


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