Up and down, down and up

December 4, 2011

I never liked roller coasters and I’m ready to get off this one right now.  Really.  No joking here.

I won’t say that I was ok with my illness fluctuations when they occurred over weeks or months, but at least I learned to handle them.  Having fluctuations every day, or even every hour, though, is so much more difficult.  Let’s take the last few days, for example.

Friday morning I felt blah, but I pushed myself to keep my lunch plans with a friend.  That cheered me up, and the fresh air helped a lot, and I felt fantastic for several hours.  By the time I got home I was completely exhausted.  I crashed on the couch for the night, watching tv and knitting.  So, that was a down-up-down-down day.

I felt lousy on Saturday, then felt worse, then felt much better for a while.  I pushed myself to go out.  Unfortunately, I wore myself out and spent the evening and night watching two different movies and knitting.  So that would be down-down-up-down-down.  Lovely.

Today was bad, but I was able to pick myself up for a while and keep plans with friends, then I felt worse, then better, then worse, then better.  So…. down-up-up-down-up-down-up.

How is anyone supposed to adjust that quickly?  Making plans with friends is getting harder and harder.  I had to leave a movie tonight partway through to rush to the bathroom.  This was worse because I was on a date!  I still haven’t figured out how to bring all of this up with him, but that’s a topic for a different post.  In the meantime, I’m just trying to figure out how to not constantly cancel on people.  Blah.

While I’m not working, I need to be busy every day so that I don’t get too lonely and/or depressed.  But it’s hard to make plans when I seem to feel lousy at some point every day, and most days I have a period of exhaustion where I don’t want to move at all.  Last night I didn’t even feel up to typing a quick blog post!

I didn’t like roller coasters as a kid at the amusement park and I don’t like them now.  I can’t wait to get off this one.

If any of this sounds familiar, if you can relate, please share it on Facebook, Twitter, etc.  This blog is new, and it would be great to share it.  

And if you’d like to get these posts emailed to you for free, simply click the “Sign me up!” button in the top right corner.

Leave a Comment » | Expectations, Frustration, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Yes you can: asking for help

December 2, 2011

A friend of mine had surgery this week.  This was planned in advance, so he knew when it was happening.  The recovery period is one month out of work, and then a few more months with certain activity restrictions.  He knew this would be tough, so a few weeks ago, he sent out an email to all of his friends in the area to ask for help.  What does he want?

He asked people to visit with him, by phone or Skype or in person.  He asked people to cook some meals.  He asked people to help him with some errands.  Simple, right?  We’re all very happy to help.  He set up a calendar on a web site that organizes everything, so at any time I can go on there and see which days he needs someone to come by.  I can’t do his laundry or lift things, but I can visit and provide company.  Other people can’t visit in person, but they’ll Skype to keep him company.  We’re all going to do what we can.

And this made me wonder, why do so many of us have trouble asking for help?

Now, the obvious reason is that chronic illnesses are ongoing, so we’d be asking for help a lot.  There’s no simple “recovery” period.  And after all, it’s not like we know when we’re going to have a flare, so we can’t predict when we’ll need help.

But aren’t those just excuses?  Yes, we need to be careful not to be burdensome, but if I were to ask a bunch of friends to collectively do 2 things for me each week, it would be months between asking favors of the same friend.  I’m sure they’d be thrilled to help.  Many have offered.  And let’s face it, even though something might feel huge to me, it’s probably minimal for them.

I’ve always been bad at asking for help.  When the pain in my wrists was so bad that I couldn’t cut my food, I’d just put a big piece of meat on my fork and bite of bits at a time.  I bristled when my mother offered to cut my meat (I was young and still living with my parents.)  I turn down offers of help from family and friends.  I guess I’m just too stubborn for my own good, but I’m working on that.  We all need to work on that.  Dealing with chronic illnesses is hard.  Why make it harder by trying to do everything alone?  Asking for help might make it a bit less difficult.  It’s worth a shot, right?

 

If any of this sounds familiar, if you can relate, please share it on Facebook, Twitter, etc.  This blog is new, and it would be great to share it.  

And if you’d like to get these posts emailed to you for free, simply click the “Sign me up!” button in the top right corner.

Leave a Comment » | Expectations, Isolation, Kindness, Limitations, Raves, Support, Symptoms, Thoughtfulness, Unpredictable | Permalink
Posted by chronicrants

I promise you, it’s no vacation

December 1, 2011

A medical leave of absence is work.  It’s hard mentally, physically, and emotionally.  I’m sure that some people who ask about my time off as if it was a vacation mean well.  They probably just don’t know how else to ask.  They feel awkward asking directly about my health.  But then others really do seem to think that it’s a vacation.  They seem to think I’m having a ton of fun, enjoying myself, living it up.  I’m so sick of those people.  I just want them to live in my body for a day or two, just so they’ll understand.  This is no vacation.  This is hell.  I would love for it to end.  I hate my job, but I would gladly go back if it meant I was feeling better.  But it doesn’t work that way.  I feel like crap.  When I find myself watching tv in the middle of the day, I start getting depressed.  I wish I could go out more and do more.  I wish this was fun.  But it’s just not.  No, this is definitely not a vacation.

If any of this sounds familiar, if you can relate, please share it on Facebook, Twitter, etc.  This blog is new, and it would be great to share it.  

And if you’d like to get these posts emailed to you for free, simply click the “Sign me up!” button in the top right corner.

Leave a Comment » | Educating, Expectations, Frustration, Insensitive, Isolation, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

The 1/2 mile decline: reaccepting old limitations

November 30, 2011

When I moved into my apartment, I didn’t even consider walking to the grocery store.  Even if I could have walked the 1/2 mile there, I knew I couldn’t carry groceries home.  So I drove to the store.

Over the years, I increased my walking.  I finally got to where I could walk that distance.  Then I worked on carrying.  The day I carried a quart of milk home I was ecstatic.  When I carried home 1/2 gallon of milk, I could hardly believed it.  I still drove to the store when I had to get a lot of heavy things, but when I just needed a few items, I could walk!  It even got the point where I didn’t think too much of the walk.  It was an effort, of course, but it was very doable.  As long as I was having a good day, I knew I could do it.

My recent decline has been tough.  I’m trying to continue to get at least some exercise, like short walks and running errands.  Today was 60 degrees and sunny with a slight breeze.  Perfect.  I needed just a few things at the store, so I headed that way.  Halfway there, I was exhausted.  I wanted to come home and get the car.  No, forget that.  I wanted to come home and sit on the couch!  I pushed myself, though, and made it to the store, stopping just before I got there to sit on a bench for a few minutes.  Walking through the store took much more effort than I’m used to.  By the time I paid for my groceries, they felt surprisingly heavy.  I sat on a bench again for a few minutes before I left the store.  Then it was time to trek home.

The walk home felt longer than I remembered it being.  Did the street stretch out?  I just kept putting one foot carefully in front of the other.  I stepped over the tree roots pushing up the sidewalk, felt bad for the 3-legged cat that was meowing piteously, thought about how much I wanted to sit down.  When I got home, refrigerated stuff when in the fridge, the rest was left on the counter, and my butt went to the couch.  I had to rest for a long time to get over that.

I’m glad I pushed myself (well, I say that today; I’ll have to see how I feel tomorrow.)  It felt good to get some fresh air.  My knees hurt less after I’d walked for a while.  I know it was good for me.  But emotionally, it was tough to realize just how much I’ve declined.  It took so long to build up to that simple walk, and now it’s been snatched away from me so damn quickly.  I’m not ready for that.  I could accept that I wouldn’t improve more.  I was ok with that, actually.  No, really, I accepted that years ago.  But I could not,  I can not, accept getting worse, especially not so soon.  I always knew it would happen “someday,” that mythological day in the distant future.  I’m not ready for it now.  Not yet.  So I’ll do the only thing I know how to do: I’ll accept it so that I can fight it.  I may fail, but at least I’ll try.

If any of this sounds familiar, if you can relate, please share it on Facebook, Twitter, etc.  This blog is new, and it would be great to share it.  

And if you’d like to get these posts emailed to you for free, simply click the “Sign me up!” button in the top right corner.

Leave a Comment » | Decisions, Expectations, Frustration, Limitations, Milestones, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

« Previous Entries
Next Entries »