How many hours are in your day?

November 4, 2011

People say that we all have the same number of hours in a day, but I beg to differ.

These days, I can’t seem to get through the afternoon without needing to rest for a while or nap.  Even after I wake up, I’m not very productive.  I have been on a leave of absence from work for several weeks now.  I thought that by now I’d have cleaned up my apartment and caught up on email, but somehow, that doesn’t seem to happen.

Fatigue is a difficult thing to describe if you’ve never experienced it.  Even now, I know that I’m lucky, because I know that there are many people with much more severe fatigue than what I have.  Some sleep for 12 or 15 hours a day.  How do you accomplish anything at that point?  I don’t know, but I know it must be similar to what I have now in one way: you have no choice, so you find a way.

This is frustrating.  I want so badly to use all of my waking hours productively, but that’s just not an option right now.  The thing about fatigue is that extra sleep or more rest won’t fix it.  Exercise won’t fix it either.  It’s infuriating but true.

So now another day is over and I’ve accomplished much less than I wanted to, and that will have to be ok because I have no choice.  I’m angry and frustrated, but I can’t do anything about it.  I can hope that tomorrow will be better, but I just don’t know.

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

9 Things to Appreciate About a Sick Body

November 3, 2011

Appreciation.  If I had to choose something positive about all of this health crap, it would be gaining appreciation.

This is my 100th post to this blog.  It’s amazing to me that in less than four months I have written 100 posts.  How did that happen?  This started as a place to vent about frustrations and irritations.  I still do that, but I find that I’ve been branching out.  And today I want to branch into appreciation.

We all take things for granted.  I’m not suggesting that I appreciate everything I have and everything I can do.  I wish I did, but that’s just not realistic.  Still, there are so many things that I do appreciate about my body.  I’m going to share a few (but there are many more) with you in no particular order.  I hope this helps you to think of some of your own.  Feel free to add yours in the comments to inspire others.

  1. Sleep.  I don’t get as much as I’d like, but at least I get some.  The meds only disturb my sleep a little, and I can sleep through the pain most nights.  I’m so grateful for that.
  2. The ability to walk.  Some days I can’t walk, or walking is incredibly painful.  I definitely appreciate walking when I can do it.
  3. My knees.  Saying this always makes me think of this song (at 2 min, 20 sec).  I first heard this song early in college.  I thought I appreciated my knees back then.  I was wrong.  Little did I know that before I graduated my knees would be the source of a lot of pain.  Now, I’m so thrilled when they don’t hurt.
  4. Mild nausea.  This may sound odd, but it’s true.  I have had IBS since I was a teenager, but I had symptoms for many years before it was diagnosed and for many more before I got a handle on it.  I still have symptoms, but they’re not as severe as they used to be.  Now, when I have mild nausea or other symptoms, I’m incredibly glad that it’s not as bad as it used to be.
  5. My mental abilities.  There are times when I can’t think clearly because of a lack of sleep or because of medications or for some unknown reasons.  Most of the time, I can think clearly, and I am very thankful for that.
  6. Making dinner.  There have been times the fatigue was so bad that I couldn’t bring myself to make a meal, or even to boil water for pasta.  I live alone, so this means I don’t eat.  Now I’m so appreciative when I am able to make something, especially when it’s more advance than Ramen.
  7. Going to the gym.  I was never one of those people who enjoyed exercise.  Still, I was able to exercise back before things got bad.  Then for years I couldn’t do much at all.  My physical therapist even told me not to go to the gym because I was too likely to injure myself.  After a lot of PT, I was finally given permission to go.  I can only do a few types of weights and at very low settings, and only short amounts of time on the cardio machines and at low settings, but at least I can do it!
  8. Standing on the T.  There are times that I simply can’t stand on the T (our subway.)  If I’m in too much pain or I’m not balancing well then I need to ask someone to give me their seat.  When I’m able to stand, though, I’m just very glad that I’m able to do it.
  9. Lack of pain.  I have pain in some part of my body at some point every day.  There was a time, though, that I was in pain every second of every minute of every day of every year.  It lasted 9 years.  After a while, I forgot what it felt like to not be in pain, and this upset me more than the pain itself.  My biggest wish was to have just a few minutes without pain, just so I could experience it once more.  Then I tried a disease modifying drug and it worked; the pain went away.  No, the pain didn’t go away completely, but it did disappear for short periods of time.  Now I have minutes without pain, and hours where the pain is low enough that I can ignore it.  I can’t tell you what an amazing gift this is.  I could almost cry right now thinking about it.  The unending pain may come back one day, or maybe it won’t, but at least I’ll have had a chance to appreciate how amazing it is to not feel any pain, even if it’s only for minutes at a time.
Did you notice a pattern?  Each thing I listed is something I can do/don’t have today but that I couldn’t do/did have at some point in the past.  These are actions I can take or symptoms I no longer have.  I appreciate them because I know how it feels to not have these abilities or to have the additional symptoms.  Does this mean I’m healthy and symptom-free?  No, of course not.  And yes, there are days that I wallow in the misery of it all.  But I do try and remember all the good things that I’ve got right now.  I think it’s important to appreciate as much as possible while I’ve got it.
So what do you appreciate about your body?  Write down 5 things right now, and reread them at least once a day to remember what you’ve got.  After all, it couldn’t hurt, right?  And it may just help.

4 Comments | Educating, Limitations, Raves, Support, Symptoms | Permalink
Posted by chronicrants

Projecting a “healthy” image

November 2, 2011

A few days ago I wrote this post for Chronic Babe’s carnival on Behind the Mask.  I’ve been thinking about it ever since.  Are there other masks I wear that I’m not aware of?

I went to the gym today.  This was a huge accomplishment.  I haven’t been to the gym in ages, and the last few times I went, I felt horrible afterwards.  Now I’m not working, and I’m on new meds, and I did a minimal workout, so I’m hoping to feel ok.  Still, it was weird being there with masks on my mind.

One reason I go to this particular gym is that no one seems to be judging anyone else.  We all just do our own thing.  No one needs to feel bad about choosing the small weights, or for only doing the treadmill.  Of course, that doesn’t stop me from feeling awkward anyway.  I only did 7  minutes on the bike.  Now, a few years ago I couldn’t even do that much, so this was huge for me.  But what did other people think?  The person on the next bike had clearly been there for a while, and was still there when I left.  Did she think it was strange?  What about the 3 minutes on the elliptical machine?  Again, for me this is a lot, but to others it must have looked weird.  What were they thinking?

The funny thing is, I really don’t care what people think of me.  The reason I wondered was that I was curious how I was projecting.  I’m so used to hiding my illness, and then when I can’t do something, I’m never sure if people think it’s because there’s something wrong with me or if they chalk it up to some so-called-normal trait, like laziness.  I didn’t know anyone at that gym and I’ll probably never see them again.  I don’t care if they thought I was weak or lazy or whatever.  But I do care about controlling how they see me.  I can’t control much with my illnesses.  I can’t control how I feel, or sometimes how I look, and even sometimes how I act.  If I can project the image that I want, though, that’s the ultimate control.

So I’m back to the question from my earlier post: is it worth it?

Answer: I don’t know.  I’m guessing that some days it is and some days it isn’t, but overall, I just don’t know.  Is it worth it for you?

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

The healthful joys of no computers

November 1, 2011

Not having internet was fabulous.

I’m sure to some people it sounds like a nightmare to be away from a computer for three and a half days.  To be honest, I wish it had been longer.  I did have email on my phone, but I wrote almost nothing and never browsed the web.  It made me realize just how much time I spend on the computer (hint: way way way too much.)

So what did I do instead?  I had great conversations with my mother.  I played with the dog (her dog; sadly I don’t have one.)  I took long walks.  Yes, we watched tv, but we also went out into nature.  We enjoyed the quiet.  We watched the ocean.  It was perfect.  The first day we took a 4 mile walk.  We took a few breaks, but we did it.  At home I never do that.  At home I feel like I can’t do it.  But with the cool clean air, the roar of the ocean, and the peacefulness, suddenly it didn’t seem too hard.

Do you have a place like this?  I wish I had one that was more local.  This place is fantastic, but I won’t be able to go back until spring.  I’m glad I made the most of it while I had the chance!  I know I wouldn’t be happy living there, but it is a fantastic place to visit.  I have been going there for a long time, and I’ve noticed that I always feel better when I’m there.  Of course, I’m on vacation when I’m there, so that helps, but even a quick weekend has the most amazing restorative effect.  I get more exercise, I eat better, and I take good care of myself.  I do more physical therapy, I read more, I’m active when I need to be and I rest when I need to.  What could be better?

Am I completely healthy when I go up here?  No, of course not.  I still have pain and fatigue and other issues, but it’s all a bit less bad.  What can I say?  I’m in love with the place.

So now it’s back to “real life” and all that goes with it.  I extended my internet vacation a bit, so I’m sorry for not posting anything yesterday.  It was so nice to be away from the computer, and I wanted it to last just a bit longer.  I’ll try to cut back from now on, though; sitting in front of a computer for hours just isn’t good for any of my conditions.  And as soon as spring hits, I’m taking another computer break and heading back to that beautiful seaside nook.  I hope you find a fantastic place to visit, too.

Leave a Comment » | Expectations, Limitations, Pain, Raves | Permalink
Posted by chronicrants

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