5 things I wish I could do tonight

November 28, 2012

There are so many long term things I wish I could do, but sometimes I’m just very aware of the short term stuff that I’m missing out on.  Tonight, for example, I wish I could:

  • Get tired and sleepy at a decent hour.
  • Read a book without falling asleep too early.
  • Call up friends just to chat, without feeling awkward about the “So what’s new with you?” question. [Hint: absolutely nothing good is new.]
  • Go on a date.  Or have sex.  Or both.
  • Make plans for tomorrow that involve going to a job, volunteering, or otherwise using my time to help others and be productive.

For the next few hours I will sit in front of my computer.  I will type and read and learn.  Maybe at some point I’ll move to the couch and watch tv.  I will go to sleep later than I’d like, because even with supplements I just don’t get sleepy early.  Then tomorrow I will wake up tired, wishing I could feel more rested, and I will spend the day doing random things that don’t really add up to doing anything much for my community or for society at large.  Then I will do it all again.

Don’t get me wrong.  Some days I do more of what I want.  Some days I feel more useful.  Some days I don’t feel like I’m missing out.  This just isn’t one of those days.

2 Comments | Expectations, Frustration, Isolation, Limitations, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms | Permalink
Posted by chronicrants

That…you know…*feeling*

November 17, 2012

I was tired, but it was more than tired.  It was exhaustion.  It was like someone sucked my energy out of my body with a vacuum.

My muscles were tired, but that’s not really the word.  They were worn out.  They were heavy.  It was an effort to pick up my phone.  It was tiring to type or pull up the blanket or roll over.

Something hurt.  I don’t know what hurt, or where specifically, or what kind of hurt.  I just knew that something hurt.

I was hungry, but I was too tired to get out of bed for food, so I just lay there.  I tried to get up, but I couldn’t manage to exert that much effort.

And while I lay there, I thought about how to describe what I was feeling.  My doctors would ask.  A good description might help with a new treatment.  The problem was, I just didn’t have the words.  I couldn’t pinpoint the feelings.  If the vocabulary existed, I didn’t have it.

This wasn’t the first time I lacked the words to describe how my body felt, and I know it won’t have been the last.  I just hope that somehow I can find a way to convey it all to the doctors one day.  And to the nay-sayers.

2 Comments | Educating, Frustration, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

When “gross” takes on a whole new meaning

October 29, 2012

***Warning to those who know me in real life and to those who are grossed out easily: read this at your own risk!***

I did the saliva ASI test earlier this year.  Basically, you spit saliva into tubes and it gets tested for various things.  When I told people about this, they thought it was gross.  Really?  I guess my definition of “gross” has really been altered by all this health crap (so to speak.)

Last weekend a friend mentioned that her kid has a lot of wax in his ears and she’s always having to clean it out (he’s still a toddler.)  I commiserated, as someone with the same problem.  When I started to mention an example, she thought it was gross.  It turns out her kid’s earwax problem isn’t nearly as bad as mine, and apparently mine crosses the line into “gross” territory.  It’s not like I love cleaning the earwax off of my mp3 earbuds, but it’s just what I have to do.  It’s nothing, really.

Thanks to joint stiffness and limited range of movement, it is now hard to literally wipe my own ass.  Some days are worse than others.  Combine that with severe IBS (which is thankfully in remission!) and you can imagine the mess.  Yes, there have been times when I accidentally got some of my own shit on a finger or something.  I won’t pretend like I was thrilled with it, but what can you do?  I just used extra soap when washing my hands and moved on.  There was no point in dwelling on it.

As a child, I got frequent nosebleeds.  This is common in my family.  There were several times I woke up during the night to find a bloody nose and a bloody pillowcase.  At 3am I’d be washing out the blood.  So what?

Thanks to what I now know is PCOS, I never had a regular period.  I’d bleed for 3 weeks straight, then nothing for a week, then it would come back for 4 days, then nothing for several months, then 2 more weeks of bleeding, etc.  Since it wasn’t predictable, my period obviously caused some messes.  Again, more washing of blood, this time washing it out of my underwear.  Again, I just didn’t care.

Three times now I have crapped on a guy during sex.  The first time it was a small amount and I assumed I was sick or something.  The second time, years later and with a different guy, was not so small and was incredibly embarrassing.  He handled it fairly well.  I told my gastro about it and it helped her figure out one of my problems.  She had me take a supplement which made me feel much better overall.  Unfortunately, after that I kept getting nervous that it would happen again.  It’s hard to have an orgasm when you’re constantly worried about shitting yourself.  I eventually got over it and moved on.  Then, years later with a different guy, it happened again.  He couldn’t have been better about the whole thing.  Of course, I got nervous again about another recurrence, but it hasn’t happened since.  Then again, I also haven’t had much sex since (due to a lack of partners, not because I’m nervous about this.)  I don’t know, maybe it will some day.  I sure hope not!

These are just a few examples.  I can think of others, and I’m sure you have plenty of your own.  Feel free to share in the comments below.  Sometimes chronic illnesses are gross.  I’ve seen and heard about much worse than anything I’ve written here.

So spitting saliva into a tube?  Really not gross at all.

In case you’re wondering about the picture of the ducks, I figure that was a lot better than any picture that would have directly related to what I’m talking about today.  I’m guessing you don’t disagree.

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

Looking for the government-provided cheese

October 22, 2012

As I type this sentence I have been on hold for 1 hour 55 minutes.  No, that’s not an exaggeration or some sort of typing mistake.  I have actually been on hold for almost two hours.

I have spent a lot of time on the phone for health stuff over the last few months.  There have been a few minutes at a time with doctors.  There have been a few 20-30 minute calls with my lawyer.  Then there have been long wait times of 10, 20, 60+ minutes to deal with social security, medicaid, and long term disability insurance.  Getting help seems to involve hours and hours on the phone.

In hindsight, I sort of wish I’d kept track of the wait times.  I think it would be interesting to see.  When I tell healthy friends about what I go through, they’re shocked – and I have it easy!  I’m lucky enough to have the patience and skills to deal with this bullshit!  What about the people who don’t have that?

Although, my patience is wearing very, very thin…..

There’s this idea that there’s a ton of free government money just out there for the taking, and lots of immoral people are taking advantage of it.  I’ve heard that more times than I can count.  The reality is that there’s very little government support and even when you’re completely deserving and completely qualified, it’s almost impossible to get the support.

It’s a beautiful autumn day here in New England.  The sky is blue, the trees are yellow & orange & red, the sun is shining, and I’m still in my living room.  A friend and I were going to meet at her office for lunch and eat outside.  We cancelled that picnic because I was still on hold and didn’t want to hang up and miss out on my chance to get legal help to appeal my denial of state medicaid services.  Maybe I can take a short walk after I eventually get off the phone?  But there are more phone calls to make, more help to seek.

I’m thinking of a mouse in a maze looking for cheese, but I think that to make the comparison more accurate, we’d have to add a playful cat to the maze.  That sounds about right.  Because the government and private insurance companies are doing everything they can to avoid giving people the aid that they provide.  I’m just going to keep trying to dodge that cat.

And speaking of cheese, I haven’t even had lunch yet because of the long hold time!  Time to forage for food…..

4 Comments | Frustration, Healthcare, Limitations, Politics, Rants | Permalink
Posted by chronicrants

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