The little stuff can still get to me

January 31, 2015

Sometimes I’m really calm in the face of annoying problems. I deal with big picture, major issues on a daily basis, so the little stuff just isn’t worth stressing over. Like the new pain I’ve been having recently. It’s been easy to stay calm IMG_20150131_111719over that. But every now and then something gets to me. And today it’s my broken wifi router.

When my router broke last month I was annoying. It was inconvenient. But it’s not like I could do anything about it. And anyway, those things usually only last 2-3 years, and mine was 5 or 6 years old already, so I couldn’t ask for more, right? I threw it out, ordered a new one online, and 2 days later I was plugged in again.

Then today I woke up to a broken router. What the….??? So now I have my computer plugged into the internet. It works. But my phone can’t access wifi, and neither can my TiVo. So I need to avoid using data on my phone, and I can be online or watch tv, but not both. It’s not horrible. It’s truly a first world problem. But it’s getting to me. The router is new, so it’s an avoidable problem, and that irritates me.

Pain and fatigue, not being able to earn a living, relying on others for help with everyday tasks…. it all puts life in perspective. It makes the small stuff matter less. But it doesn’t make us all immune to the small irritations in life. For me, internet access is often my one link to the outside world when I can’t leave the house. TV is my entertainment when I’m too tired to go out, read, or even talk on the phone. I need these things. And I’m pissed they’ve been temporarily taken away.

So please excuse me while I go figure out the router company’s return policy…..

Does the small stuff get to you? What kinds of things get you riled up?

6 Comments | Expectations, Frustration, Isolation, Rants, Unpredictable | Permalink
Posted by chronicrants

Blizzard days are like chronic illness days, so don’t panic

January 27, 2015

If you’ve looked at the news in the U.S. at all in the last day, you know that the northeast is getting hit with a big blizzard. Even though it’s not unheard of around here, this is of course causing the usual panic. For me, it’s just a Tuesday.

snow

Snowstorm January 2005 – 10 years later and people are still panicking

I wanted to pick up a few groceries yesterday because it was time for my weekly shopping. Everyone else in the long lines was stocking up for The Storm. You see, the idea of being indoors for 2 days due to The Storm causes panic for most people. They suddenly need milk and bread with a kind of desperation that isn’t usually seen on a typical Tuesday. I just don’t get it.

Now, obviously for some people there’s good reason to worry. For example,

  1. If you just moved here and you’ve never been in a snowstorm before, you might be unsure of what to expect.
  2. If you’re physically disabled or otherwise in need of medical attention and rely on assistance from others, you might be worried about people not being able to reach you or vice versa.

That’s about it. I can’t come up with #3. Obviously storms like this can be dangerous. Your house could get flooded if you live near the shore, you might be worried about a flood-related fire, a tree could fall on your house or car. But if you live in an area where these things are likely, then you either know how to prepare, or you know you can’t prepare and you just have to wait it out. The other major danger, of course, is shoveling-related injuries, so I hope that anyone at risk for a heart attack, back strain, or other injury is getting help with their shoveling. And yes, you might lose power. But you should already have plenty of blankets, candles, matches, and bottled water in the house anyway, because that’s just good sense.

Look, we’ve had storms like this many times before. So we know that it will end on Wednesday and by Thursday people will be out and about again. By Friday we’ll have forgotten about The Storm as we prepare for the next one. So why buy a month’s worth of groceries when you’ll only be indoors for 2 days?

I suppose most people don’t like feeling stuck at home. I get that. I don’t like it either. But I know how it really works. You see, I get stuck at home for days at a time on a regular basis. It happened last week. And the week before. And the week before that. And it’s ok.

One big difference is that everyone else is stuck at home too, so you’re not the only one canceling plans. The other big difference is that when you’re stuck at home for a blizzard, you feel ok and can do things. When you’re stuck at home for chronic illness, often you feel like shit and can’t do much beyond stare at a tv screen. Thankfully, I feel ok today, so while I watch the snow outside, I’ll do the kinds of things I think everyone should be doing today. Here are a few ideas for you:

  • Clean up the clutter around the house.
  • Cook.
  • Bake.
  • Have some quiet time with your thoughts.
  • Call a friend you haven’t spoken to in a while. If they’re in the same city and they’re not an emergency worker, chances are good that they’re home too.
  • Read that book you’ve been wanting to read.
  • Work on your creative hobbies – knit, paint, write, etc.
  • Play with your kids and pets (I would if I had any.)
  • Watch a movie.
  • Daydream.
  • Exercise. I’ll do my physical therapy, but you can also do plenty of at-home exercises like lifting weights, sit-ups, push-ups, jumping rope.
  • Finally empty out that email inbox.
  • Take a hot relaxing bubble bath (it’s not my thing, but it might be yours.)
  • Do all of those other things around the house that you say you never have time for.
  • Be incredibly grateful that you’re indoors today and safe.

I do some of these things when my illnesses keep me at home, but many I can’t do. Today is sort of a treat – I’m home *and* I feel somewhat ok!

So the next time you hear someone panicking that The Storm is coming, remember that being stuck at home for a day or two is something many of us go through on a regular basis, and suggest that they relax and enjoy the time at home. And point out that they might want to keep a few bottles of water in a closet all the time, because standing in those long lines is just silly.

2 Comments | Educating, Expectations, Frustration, Isolation, Limitations, Rants, Symptoms, Unpredictable | Tagged: , | Permalink
Posted by chronicrants

Could a new pain be isolated?

January 14, 2015

Sitting at my computer has become more painful, now that I can’t find a comfortable position for my foot. I didn’t fall or trip or do anything else to it, but one day it started hurting. Usually my pain is in joints or in more “common” areas like my back and neck. The top of my foot was a new one. So I waited for it to away.

But it didn’t go away. I meant to mention it to my new podiatrist when I went to get examined for new orthodics, but I was so excited about the orthodics that I forgot to mention it. When I went to pick up the new orthodics 2 weeks later, I still had the pain, and this time I remembered to mention it. She said that the area I’m pointing is actually related to joint. Immediately, alarm bells went off in my mind. A joint?? Could I really have a new joint acting up?? She explained that there was a ligament there that had probably gotten stretched too far some how. She said it should fix itself within a few weeks, but it had already been a few weeks. The next step would be to immobilize the foot. Um, no thanks! Well ok, I might have. But first she wants to see if the new orthodics help. I sure hope they do!

But in the meantime, I’m left to wonder if this new problem is isolated or if it’s part of my connective tissue issues. It’s possible that it’s isolated, right? Right? I mean, if an otherwise-healthy person can have this problem, then I can too, right? Right?

But it’s also possible, even likely, that it’s an extension of the pain that I already have in my wrists, toes, knees, fingers…. Every few years I get pain in a new set of joints and it doesn’t go away. It can’t be “healed.” I haven’t had any new joints join the list in several years so I’ve been lulled into thinking this might be it. But I should know better. Despite all of my hard work and all of my improvements, I still have the same autoimmune diseases, whatever they are, that caused the problems in the first place. I’ve always assumed that sooner or later all of my joints would succumb to this. I just hoped it would be later rather than sooner. And when I pictured it, I didn’t picture this particular spot of pain that I never knew existed in relation to a joint.

This isn’t the end of the world. Actually, in my world, it’s relatively minor. The pain isn’t actually what’s bothering me at this particular moment. What’s bothering me is that I don’t know how to proceed. If the orthodics don’t help (and with my luck, they probably won’t) then should I bother to immobilize the foot? That wouldn’t be good – I wouldn’t be able to wear my new orthodics, it would throw off my balance, it would probably aggravate my hip, and it would be a real bitch to deal with in the cold, snow, and ice that come with Boston winters. And it probably wouldn’t do a damn bit of good. But then again, if there’s even the tiniest chance that it could help, that I might be preventing future pain, don’t I owe it to my future self to try?

Or would I just be deluding myself by thinking there was a chance this could possibly be an isolated condition?

Sadly, it’s a situation that we with chronic illness have to deal with far too often. Every pain, every extra-tired day, every ear infection or sore throat or sneeze or…. we have to question it all. My foot is simply today’s question.

6 Comments | Educating, Expectations, Frustration, Healthcare, Pain, Rants, Symptoms, Unpredictable | Tagged: | Permalink
Posted by chronicrants

What a difference a year can make

December 30, 2014

As I made plans for New Year’s Eve this week, I suddenly remembered last year. The difference is startling.

Last year, I didn’t want to go out. I had no exciting plans, but even if I’d had them, I probably would have skipped them. I was sad, anxious, and overwhelmed. My grandfather had just passed away. I was still reeling from the passing of my grandmother almost exactly one year earlier. My financial situation was precarious. My hearing for social security benefits was still a few weeks away. My long term disability claim was about to be reviewed and possibly denied. My health was lousy. I was trying so hard to get better and I just couldn’t seem to make the progress that I wanted to make. I had no desire to celebrate the end of such a crappy year, and I wasn’t filled with hope or anticipation for the coming year. I dreaded attending any sort of celebration with happy, optimistic people. So when friends invited me over to hang out, making it clear it would be an early night, that sounded perfect. We talked. We played board games. And when midnight rolled around I was at home in my pajamas, watching the fireworks alone on tv.

By January 2, life had resumed as normal, and I continued plodding along.

This year is difference. I’m not looking forward to some wild, crazy night. But then, even with perfect health I probably still wouldn’t be. I guess that’s what age does to you. I don’t feel the need to celebrate, but I also don’t mind it. Some friends want to get together for a low key evening of talking, drinking, eating, and playing board games (we all love Settlers of Catan) and that sounds just about right to me. We’ll all toast the new year in together, but we won’t stay out too long past midnight. 2 couples have young children who will wake them up early and the other person will get up early for bird watching the next morning. So even if I didn’t need to get to bed at a reasonable time, everyone else will probably be leaving by 1am anyway.

But it’s more than the logistics, of course. This year I saw such improvement. I recently lost another grandparent and that has been difficult, but his final weeks and days were not as horribly painful as the others’. I lost my long term disability insurance coverage but I gained social security. More than that, I no longer have to worry about either one. The lack of worry has had an enormous impact on the improvement of my health. On top of that, I have stable health insurance for the first time in years. With the ability to see doctors and try new treatments, and with the lack of stress, not to mention with another year of the previous treatments under my belt, I’ve seen some huge improvements in the last year. Sure, I still have big health problems, but they’re more manageable and I have more reason to be hopeful.

I still have health-related problems that I’m trying to figure out. I want to see some doctors that don’t take my insurance. Social security disability doesn’t come close to paying all of my bills. I’m still not sure what’s causing some symptoms. I’m still reacting badly to some medications. But overall, I feel better enough that I can be optimistic that I’ll figure out ways to handle all of those issues sooner or later.

It’s not perfect, but it’s better.

One year passes quickly, but it’s really a long time. 365 days. 52 weeks. 8760 hours. It’s going to pass no matter what, so the best we can do is hope that as it does, our lives will be good and our health will improve, or at least not get worse. Then we need to do all we can to make those hopes a reality.

I don’t know how I’ll be feeling 1 year from now. Maybe better. Maybe worse. Maybe the same. But I sure as hell hope I’m doing better. And I hope you are too.

As we welcome 2015 and those 8760 hours begin passing, I will be hoping that you and I all see some good times, some improvement in our health, and some ways to manage the difficulties we face.

Here’s to us.

7 Comments | Expectations, Healthcare, Isolation, Limitations, Milestones, Raves, Symptoms, Unpredictable | Tagged: , | Permalink
Posted by chronicrants

« Previous Entries
Next Entries »