Your sickness matters too

May 17, 2012

We all have problems.  That’s it.  Everyone has something difficult that they have to deal with.  It might be a health problem, it might be a relationship problem, it might be taking care of someone else.  We all have something.

If you have a severe chronic health condition, then the people in your life know at least a little bit about it.  No one really knows or understands what you go through, but they all know you have something, and they know a bit about the symptoms.  And because of that, some people get weird talking about their own health problems.  Have you ever heard “they’re nothing compared to yours”?  I bet you have.

A friend called today.  We hadn’t spoken in a while and we had a lot of catching up to do.  She didn’t know I had stopped working because of my health (yeah, it’s been a really long time) and she was sad to hear it.  Then we were talking about her job, and how she left it because of health problems.  She’d always been one of the healthiest people I knew, so I was shocked to hear about some of her troubling symptoms, all from the last several months.  On the bright side, they are probably stress-related, so she should be fine with some rest and relaxation (I hope!) Still, I wanted to hear all about it because as her friend I was (and still am) concerned.

That’s why was frustrating that every time we started to talk about her health, her response was that she didn’t want to talk about it because my health is so much worse.  I didn’t know how to make her understand.  Yes, I get annoyed when people complain about stupid things, when they act like a paper cut is the worst pain possible.  But I get upset from smaller things too.  I’m miserable when I have a bad cold.  I certainly feel the pain when I pull a muscle.  Yes, I can put these things in perspective emotionally, but it doesn’t make them less bad.  And I don’t begrudge anyone else their hardships.  I feel bad talking about my health with others who have worse conditions than I have.  My healthy friends feel bad talking to me about their temporary health issues.  But we have to remember that we all have problems and we all have to deal with them.  So I want my friend to tell me what’s going on with her.  It might not be as severe or as long-lasting as my issues, it may not have as big of an impact on her life as mine do on my life, but it is difficult for her and that makes it important to her and to me.

So I guess what I’m trying to say is, my illness doesn’t make your illness irrelevant, and vice versa.  Let’s support each other, not hold each other back.

Leave a Comment » | Educating, Expectations, Frustration, Isolation, Kindness, Rants, Support, Symptoms | Permalink
Posted by chronicrants

My hero: mom

May 15, 2012

My mother has been my greatest supporter.  Mother’s Day was a few days ago, but as I wrote then, it was a bit hectic, so I’m writing about my mom now.  Of course, I really don’t need a special day to write about her; she’s amazing all year round.

My symptoms started when I was 12, so my parents were of course a huge part of things.  My mother took me to every medical
appointment, held me when I was scared, and helped me in every way she could.  When I couldn’t hold a knife, she cut my meat for me (and wow did I hate that; what teenager wants their mother cutting their meat?)  She let me yell at her when I was upset and angry.  I’ve taken a lot of emotions out on her over the years.

When all the doctors were saying they couldn’t help me, she pushed for me to see someone new.  When the doctors, and even relatives and friends, said that my symptoms were all in my head, she never believed it.  After a while, even I started to wonder if I was just making it up, but I never saw her doubt that my pain was real.  It was 11 long years before a blood test finally confirmed that the pain wasn’t a figment of my imagination, and she never showed the slightest doubt in all that time.

Even now, as my mother is getting ready to retire and move on to new adventures, she is always thinking of me.  I know that mothers always think of their children, but it’s more than that.  She checks on me, asks about my health, and still lets me lean on her when I am scared, confused, or just need someone to listen.  She advises me and supports me, even when she doesn’t agree with my approach.

My mother is smart, strong, and beautiful both inside and out.  She is the most spectacular person I know.  I am thankful for her every day.

Who supports you?  Who do you admire?  Feel free to brag about them in the comments.

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

Sometimes “fate” intervenes

April 17, 2012

I wonder sometimes about timing.  Maybe if I had sat in the next subway car over that day I’d have run into a friend.  Maybe if I hadn’t been running late the other night I would have met a new business contact.  I don’t believe in fate.  I don’t think there’s some force controlling things.  But I do think that sometimes timing is everything.

After this weekend’s great walks, I decided to keep up the momentum, at least to some degree.  Ok, I won’t be walking 3 miles every day, but I know I need to do more than what I was doing before the trip.  So today I promised myself I’d take a long-ish walk.  A mile seemed like a reasonable goal.  But it was too hot.  So I ate some ice cream.  Still too hot.  I sat in front of a fan and watched tv for a while.  Yup, still too hot.  I ate dinner.  Ok, it had cooled off enough, time to get off my ass and walk!

I debated washing the dinner dishes, then decided to let them wait.  I don’t usually do that, but I wanted to get out before it got dark.  I could have changed my clothes or checked an email, but instead I rushed to leave so that I would be sure to take the walk.  What if I had delayed leaving for any reason?  On the walk, I slowed down to chat with a nice guy with a cute dog.  I’m a sucker for a cute dog.  What if I hadn’t slowed down?  I finished the big loop and ended up back at my building.  I could have stopped, but I pushed myself to also do the smaller loop that I had already planned to do.  What if I had skipped that?  At the far end of the loop, before turning back towards home, I decided to push myself and do a bit more.  I started walking a longer route home.  What if I had turned back when I planned?  But I didn’t.

And that’s how I turned a corner and saw a blind woman in the road.  It was a relatively quiet one way street, and the car had stopped and was waiting patiently.  The woman was in the middle of the wide street and she turned left, moved her cane, then turned right, moved the cane some more, then turned left again.  A guy across the street was watching this, clearly not sure what to do.  How many of us have been in the same position?  I’m guessing most of us have been on the receiving end of this internal debate: is it better to risk offending someone by offering potentially unwanted help, or to risk letting someone struggle by not offering potentially needed help?

I called out to the woman to ask if she needed help, and she gratefully said yes.  She was on her way to the T and had gotten turned around.  I led her back to the sidewalk.  She asked if I was going to the T and I said no, but that I was walking past it, which was true.  She immediately slipped her hand onto my arm and asked if I’d lead her there.  Of course I was glad to.  We joked and laughed about how we hold ourselves to high standards, trying to be perfect despite our disabilities.  She, of course, had no idea what mine were, but that didn’t matter.  We had a nice chat, and then I left her off at the door to the train station and continued on home.

There are dozens of ways we might have missed each other.  I don’t believe in fate, but I am so glad the timing worked out so that I could help someone else.  It is so easy to become absorbed in our own health issues, and it meant a lot to me that I was able to get outside of that to help a stranger.  I am sure she would have eventually made it to the station without my help, but I hope that I made her night a little better.

~~~~~~~~~~

If you can relate to this, please pass it along and share the camaraderie!  Let’s build a community!

Leave a Comment » | Educating, Expectations, Kindness, Raves, Support, Thoughtfulness | Permalink
Posted by chronicrants

Raising the bar on thoughtfulness

January 31, 2012

With all the shit forced on us all from CIs, sometimes a little thoughtfulness can go a really long way.

A close friend of mine had a baby about a week ago.  Leading up to the birth, I was so excited that she joked that her mother was the only person more excited than I was.  It was an exciting birth, but everything went smoothly and they’re all happy, healthy, and at home.

Unfortunately, the timing wasn’t great for me to visit – I had family flying in from all over the country just a few days after the birth, all coming to attend a bit family event this past weekend, so I had to delay my visit.  Finally, the day was approaching.  She lives two hours away.  Normally I visit for a few days at a time, but when her first child was born, I drove out for just a few hours, then drove home.  That was a very long day.  It was a Saturday, and I rested the next day and then went to work on Monday.  It was exhausting.  I did the same with her second child.

This time around I’m not working, but since I’m not feeling well, it will probably be more exhausting than the other visits.  Still, I can’t wait to meet the little guy!

Then yesterday my friend called – the older kids have colds.  The colds aren’t bad, but she wanted to warn me.  How thoughtful is that?!?  She’s juggling two little kids and a newborn infant, and she’s worried about my crappy immune system.  She’s just so sweet.

We’ve been friends for ages, since back when my only symptom was pain (ah, the good ole days), and so she understands better than most what I deal with, even though I hide a lot from the world (not just from her.)  And she knows that it’s not just about me being in a germy house – with little kids around, the germs spread more, and there’s no way I’ll visit without hugging the kids and playing with them.

It’s an easy solution – we’re just putting off the visit for a few days, to make sure everyone is healthy (oh, the torture of having to wait to see the little baby!)  But I know too many people who don’t think that way.  I see people shake hands when they have colds, cough into hands and then touch doorknobs, and generally be inconsiderate to the world around them.

How lucky am I to have a friend who is this thoughtful?  We all need to have someone in our lives like this.  She’s certainly set the bar pretty high for everyone else…..

Please share this on Facebook, Twitter, etc. This blog is new, and it would be great to have it passed along.

2 Comments | Educating, Expectations, Kindness, Limitations, Raves, Support, Symptoms, Thoughtfulness | Permalink
Posted by chronicrants

« Previous Entries
Next Entries »