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.

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I told me so

November 28, 2011

It was hard to admit that I needed to take a medical leave of absence from work.  A part of me knew it was necessary, but another part kept questioning if I really needed to do it.

When my doctor asked me how long I thought I’d need to be out, I said 2-3 months, but hopefully only 2.  I said that to everyone: hopefully only 2.  I even said that to myself.  I was trying very hard to ignore the little voice in the back of my head that was saying I would need at least 3 months.

We talk about the “masks” we wear, the image we try to project for the sake of others.  But what about the lies we tell ourselves?  Denial is a powerful thing.  I have been in denial over many things in my life, from my own health, to the health of loved ones, to job conditions, to sexual orientation.  Denial is powerful, and lately it has had a lot of power over me.

Yes, I knew I wasn’t getting better as quickly as I expected.  Yes, I knew I wasn’t where I needed to be at this point.  I thought about these things, but I didn’t accept them.  That little voice was pointing them out, but I kept ignoring it, trying to believe that the little voice was exaggerating everything, that my symptoms really weren’t that bad.

This evening I spoke with my doctor.  The short term disability insurance renewal paperwork is due next week, and she wanted to see when I would be returning to work.  The original goal was January.  That is looking very unlikely now.  Even typing this out, it’s hard for me to admit the truth.  Telling her everything was extremely painful.  I had to admit my lack of progress, my increasing pain, my difficulty sleeping, my weight gain…. all of it.  Finally, the denial was gone, and I had to admit the truth.  That conversation was excrutiating.

When I got off the phone I cried.  Actually, I sobbed.  I was probably a month overdue for that crying session.  I don’t cry often, but this was a good time for it.  And in the back of my mind, there was that little voice, reminding me that I had really known all of this all along.  It had told me so.  It knew.  I knew.

Goodbye denial.  Until next time.


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Political interference

November 27, 2011

Politics affects all of us.  It has to.  Government builds and maintains infrastructure (roads, mass transit) and regulates taxes.  Government creates laws and enforces them.  Government controls the big picture and also a lot of minutiae.  It must play a role in our lives, but I question how big of a role.

Because of my illness, I rely on my government to create and enforce non-discrimination laws, to keep the roads and sidewalks passable, and to ensure that the medications I take are safe for consumption.  These are all important.  However, I feel that sometimes government goes too far in “protecting” its citizens.  I will write more later, but for now, think about medical marijuana and assisted suicide.  How involved should the government be?

In the United States, one big problem is that some states have legalized each of these, but the federal government does not recognize them as legal.  That sets patients and doctors up for potential problems, and that’s not fair.  It must be decided once and for all whether or not states can regulate either of these areas.

As far as marijuana goes, I won’t get into whether or not I think it should be legal for general use.  However, for medicinal purposes it should be treated like any other drug.  There should be studies to determine its efficacy, then it should be subjected to an FDA approval process to ensure it is safe for medicinal use.  Why not do this?  After all, it is no more harmful to a person than alcohol, cigarettes, or many prescription medications.  It is not dangerous to non-users as long as second-hand smoke is avoided (it could follow the same rules as cigarettes) and people do not drive under the influence (it should follow the same rules as alcohol.)  I would happily accept government regulation of medical marijuana so that I could trust that it came from good sources.  I can not accept, though, that the government will not even consider it.  Given the choice between the side effects from marijuana or the side effects from prednisone, I’ll choose pot, thank you very much.

Now, as for assisted suicide, the idea that suicide is illegal is ludicrous.  A person who wants to commit suicide should get proper counseling, of course, and be of sound mind.  But if a terminally ill person is in a lot of pain and wants to end their suffering a few weeks early, why shouldn’t they be allowed to make that choice?  And if they are going to end their suffering early, shouldn’t it be done with the aid of a doctor, so that it is done in the least painful way possible?  I simply can not imagine why people have a problem with this.  And I certainly can not see any reason why the government should be regulating it.

These are just my opinions, of course.  Everyone needs to do their own research and their own thinking.  For me, though, the answers seem very clear.  My opinions are strong, so I will definitely be elaborating on these in later posts.  For now, I just needed to vent a bit.

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My personal cure-all

November 26, 2011

We all know there’s no such thing as a cure-all.  If there were, we’d all know about it and be getting it.  Still, I’d like to think that everyone has something that will make them feel at least a little bit better.  It might be a certain movie, a piece of artwork, or a friend.  For me, it’s dogs.

I’m not suggesting that dogs cure me.  That would be ridiculous.  But if I feel good, dogs make me happier.  If I feel bad, they make me feel a little less bad.  This has been a tough week, but spending the evening with a sweet dog who I love, plus a new puppy, made me feel so much better.  No, I’m not completely well, but I’m better than I was before seeing the dogs, and I’m certain that I’m better than I would have been if they weren’t there.

There’s one dog in particular who is amazing.  He’s very intuitive.  When someone is ill, he comforts them.  My parents are very lucky to have him.  When I have been at their house while ill, he will stay by my side.  He’s often a lap dog, but eventually he wants to play.  When I feel sick, though, he just curls up by my side, his little furry body radiating warmth and love, and I start to feel better.  He just stays there until I start to improve.  There are studies that say petting a dog or a cat can lower a person’s blood pressure.  I don’t need to read a study.  I feel it every time he jumps into my lap.

So yes, I am the absurd 30-something who will stop strangers on the street and ask to pet their dog.  But why not?  It makes me feel better, it makes me happy, the dogs love the attention, and the owners love hearing strangers say how sweet their dog is.  Everyone wins.  We all need something that makes us feel better, and for me it comes in a furry form.  I can’t have a dog of my own (I’m not well enough to care for it) but I’ll spend time with others’ dogs whenever I can.  They are amazing animals.

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Self care is *not* a vacation

November 24, 2011

Family gatherings.  They’re different things to different people.  With just one exception, I really enjoy spending time with my family, and today was no different.

For the first time in days, I got out of the house and had contact with people, which was nice.  I feel very lucky that family gatherings are generally fun and are usually not stressful.  I know that’s rare, or at least more rare than we’d all like.  Still, it wasn’t easy.  I put on a smile and acted like everything was fine around most people.  When a close relative asked how I’m enjoying my “break from work,” though, I had to say something.  I explained that this wasn’t a vacation, that I’m really not feeling well and I’m trying to use it to get better.  I said that the last time I left the house was on Tuesday, and that was only to get groceries for my Thanksgiving cooking.  Before that, I hadn’t been out since Sunday.  I pointed out that if I’d tried to go to work this week, I probably would not have felt up to attending the Thanksgiving meal.  So this “break” is allowing me to take care of myself.

I said it nicely, just to educate him.  Thankfully, he got it right away.  It’s frustrating to have to educate people over and over, but in this case it’s worth it; it means that next time he’ll understand and he’ll ask how I’m doing instead of if I’m enjoying the “break.”  Either way, I know he’s always going to be supportive, and I appreciate that.

I’m not going to do a big Thanksgiving article, but I will say that I am very thankful for my amazingly supportive family and extended family.  As we all know, many of us couldn’t get through this without the help and support of our loved ones, and I feel very fortunate to have a great group of relatives around me.

Life can be shitty, no doubt.  So when I’m having tough weeks like this one, I try hard to remember the things I’m grateful for.  After all, it’s not all bad.  The important thing is to remember that.


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When even the predictable becomes unpredictable

November 23, 2011

I have left the house twice in the last four days.  Well, that’s if you don’t don’t a trip to the basement of my apartment building.  Trust me, that wasn’t so exciting.

As I said before, I haven’t been feeling right over the past few days.  I noticed it early, and I did the right thing by staying in the house and resting.  That seemed to work, so yesterday I went to the grocery store.  This was a small trip.  I drove my car, I parked close, and I know the store well, so I just got the things I needed and then left; I wasn’t wandering around.  Still, I knew immediately that it was too much.  I stayed in last night and watched a movie.  I didn’t exert myself, or even open up the computer to write.  Still, I woke up this morning feeling off again.

This happens sometimes.  The timing tends to be unpredictable, but at least the treatment is predictable.  Or at least, it was.  Every other time this has happened, by the third or fourth day (today) I would either be really sick or completely better.  I don’t know why it’s dragging on this time.  I guess it just goes to show that we can do our best to take care of ourselves, but even the predictable can surprise us.

I’m glad that I’m not working now, because it means that I didn’t try to go to work like I normally would.  Instead, I turned off my alarm and slept late, which definitely helped.  I cancelled my plans for today (and I had been looking forward to them!) and I rested.  I have no doubt that I’d be doing much worse if I was pushing myself.

The big question mark is tomorrow.  I’m not hosting Thanksgiving, but I am supposed to provide the only veggies on the table, so I hope I feel up to cooking them.  Besides, if I don’t cook, what will I do with the 4 pounds of brussels sprouts in my fridge?  As hard as it is, especially for a control freak like me, I know I just have to relax and rest tonight, and wait to see what tomorrow brings.  If I can do it, that’s great.  If not, so be it.  We all have our limits and these are mine.  How do you handle yours?

In the meantime, I’m getting really sick of watching tv.  And this is coming from a self-described couch potato.  I really need to get out of the house.  Hopefully soon…..


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The importance of self-care

November 21, 2011

There’s the stuff we do almost every day.  It’s almost habitual after a while.  There’s certain exercises and certain diets and monitoring movements and adjusting for pain.  And then there’s the out-of-the-ordinary stuff that messes up any semblance of a schedule we might have had.

Yesterday I wrote about feeling almost sick.  I did the right things to take care of myself: I got a little fresh air and exercise and spent the rest of the day resting.  I took something to help me sleep and managed to sleep almost 10 hours with only a few interruptions.  These days, that’s fantastic.  Still, I woke up today feeling horrible.  I’m not sick sick.  I don’t have a fever, my stomach is fine, I’m not coughing or sneezing.  My only real symptom is that I feel lousy.  I spent the morning watching tv.  Then I took a nap for 3 hours.  Then I watched more tv.  I was going to read, but I fell asleep before I even found where I’d left off on the page.  Doing dishes and typing on the computer are the most activity I’ve had today.

Now, this all sucks, no doubt.  I wish I felt better.  There are things I was going to do today.  Then again, I’m so glad I was able to do this.  I’m not working right now, so I didn’t have to worry about upsetting a boss or missing project deadlines.  I know that when I really need a day like this to rest I shouldn’t worry about those things.  I know that.  But I still worry about it, and sometimes I push myself to go to work when I shouldn’t.  Of course, that only makes the symptoms much worse.  So yeah, today really wasn’t all that bad.  I lost a day that I could have spent doing other things, but it’s worth it.  Hopefully I’ll feel better in time for Thanksgiving.  And if not, well, there’s only so much that any of us can do about our health, right?

There are some lessons I have learned very well from the illnesses.  Accepting my situation when it means a major disruption to my life is not one I have learned well, and it’s one I have to keep relearning over and over.  Today has been a good reminder; my health is what matters.  Jobs and friends and errands and everything else can and will wait.  It is more important that I take care of myself.  Now, I just have to be sure to remember that next time, too.

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