Fun in the sun or sleeplessness and pain?

January 14, 2013

While Australia is battling wildfires and California is dealing with frost, here in New England we’re dealing with our own weather oddity: warmth.  Last week it was in the 30s.  Later this week it should be in the 30s.  Yesterday and today were in the 50s.  And it was sunny.  Go figure.

Aside from all of the concern over climate change, I have another worry: my body doesn’t like severe climate changes.  It especially does not like sudden temperature increases.  And it really doesn’t like more than one day of said increases.

I woke up feeling very hot.  I always sleep better in a cool room, and since it was so warm, I’d gone to sleep with both windows Boston sunshine
wide open and a fan on, but I was still hot.  I looked at the clock: 4:44am.  Yeah, it really said that.  I was not amused.  I got up to turn up the fan and check that the radiator wasn’t running.  While I was up, I got water.  Then back to bed.  No sleep.  I tried reading for a while.  Lights off.  No sleep.  At 5:37 I finally had a good idea.  Just a couple days ago I was cleaning up my living room and feeling frustrated that there was no good place for the box fan that was in a corner of the room.  I stumbled to the living room, noticing the pain in my foot.  Huh, that wasn’t there when I got water, was it?  I haven’t felt that specific type of pain for a while, probably close to a year.  I got the fan, set it in the far window, and went back to bed.  No sleep.  After a while, I switched the fan to the closer window.  Somewhere around 6:15 I finally fell asleep.

It was a miserable hour and a half.  My mind wasn’t racing.  There was nothing mental or emotional to keep me awake.  I just wasn’t responding well to the temperature.  I noticed pain during that time.  A lot of pain.  But that wasn’t keeping me awake either.  I was too tired.  I’m just glad I was able to sleep eventually, and that I didn’t have to get up early.  It wasn’t as much sleep as I usually get, but it was enough to get through the day.

Too bad the first thing I noticed when I got out of bed this morning (at the more appropriate time of 10:30am) was the pain in my foot.  Then later I noticed the pain in my wrist.  And other areas weren’t feeling too good either.  And I was HOT.  I opened all of the windows in my apartment and that helped.  I wore a t-shirt (in January!)  I wore my cooling neck band and that helped more.  But it wasn’t until the temperature began to drop this afternoon that I started to feel better.

Things are continuing to improve, but I’m still dealing with a lot of extra pain.  I’m at Mother Nature’s mercy, and so far, it’s costing me.

So while everyone else is loving this weather, getting outside without heavy coats, throwing balls and frisbees, taking long walks, and getting some sun, I’m counting down the hours until the cooler weather returns, with the glorious 30-something degree days and even colder nights.  For someone who dislikes winter, I’m really anxious for it to return!

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

Why would anyone want to date me?

January 13, 2013

I wasn’t going to write this post because it is too painful, but then I remembered that it’s because this is so painful that it needs to be written.  It’s the tough stuff that we don’t talk about, that we try to ignore, that we bury deep down, which we most need to talk about.

Today I was listening to someone talk about her cousin and how he has a new girlfriend.  The other person was surprised.  “Good luck to her!”  “Why would anyone want to date him, with all of his [health] problems?”  I quickly changed the subject.  I don’t think they knew how I heard their comments, how I related them to me and to my situation.

Before I go further, I should be honest and say that my health issues are just one reason I don’t open up to people dating-wise.  I also have trust issues.  I know this, I just haven’t figured out how to move past it.  I have been in love twice.  The first time, we were together 2 years when he told me he didn’t love me anymore.  The second time, we were together almost 3 years, had rented an apartment together, had bought furniture together, had shopped for engagement rings, and had discussed how many kids we wanted to have, when he walked out.  So even if someone says they love me, how can I believe they mean it and will stick around?  So yeah, there’s that.

Now, when it comes to the health stuff, I often find myself wondering why anyone would want to date me once they know about it.  The big relationships I had were before I was so sick.  I believe a relationship may be possible now, but how can I get to that point?  After all, there are plenty of not-so-sick people out there who they could be dating.  And yes, I know I have plenty of great qualities to offer.  And I’m not just saying that, I really do know that I have some terrific qualities.  The problem is, my dates won’t know that!  It takes some time to get to know someone, and in the meantime, while they’re still learning about my odd sense of humor and my desire to help everyone I know, they’ve already seen my limp, observed my odd eating, noticed that I don’t do many fun activities like hiking or skiing, and been cancelled on twice.  I am a pretty fantastic person in so many ways, but I don’t expect anyone to learn that until, or unless, they’re willing to look past all of the health crap.

I see other CI folks with spouses and I wonder how they do it.  Obviously some of them met before the CIs set in, but some of them didn’t.  Some of them met and fell in love knowing full well what they were getting in to.  I suppose I could meet someone like that.  I just can’t imagine how it could possibly happen.  And if I do meet someone that’s willing to look past the health crap and see me for me?  I guess that’s someone worth holding on to.

And maybe that will be a person worth trusting.

How do you handle dating?  I’m on a dating hiatus while I focus on health treatments, but I hope to be dating again within the year.  How do you get past the fear?

14 Comments | Educating, Expectations, Frustration, Isolation, Rants, Symptoms | Permalink
Posted by chronicrants

Daring to dream

January 8, 2013

I’ve come up with yet another career plan.  I’ve made so many plans in the last few years.  This one seems as plausible as any… if I go back to work someday.  As my health got worse in recent years, it seemed more and more important to have alternative plans because I knew I couldn’t keep working the way I was.  Then when my health got really bad, I felt too lousy to bother trying to figure out a plan.  And now I’m back to planning.

Dreaming

The specific plans don’t matter.  They generally involve consulting in different fields where I have knowledge, part time work in areas that would provide benefits, and jobs in fields that I always found interesting but that won’t take too much extra training.  And they all have something in common: they require me to be in better health before I can attempt any of them.

My naturopath told me yesterday that she thinks it’s a good sign that I’m so antsy to prepare for the future.  I know she’s right.  I’ve been thinking the same thing lately.  When I felt so horrible that reading a chapter in a book was a chore, of course I wasn’t thinking about returning to work.  But now that I’m feeling somewhat better, I’m anxious to feel completely better so I can do more!  It’s a strange in between zone, where my brain is jumping ahead and my body isn’t ready to follow.

Of course, this isn’t just about jobs, but I think that jobs are the easiest thing to focus on.  My friendships are awesome, so there’s no need to work on those.  My family is great, except for the sibling I don’t get along with, so there’s nothing to work on there.  I want a relationship, but that means dating, and more than that, it means being open to being vulnerable.  While my health is stopping me from dating, it’s my past experiences that’s stopping me from being vulnerable.  I’ve been hurt so many times, and I’m not ready to go through that again.  Now that I’m having sex again, I don’t mind waiting to date.  I really want to be able to do more in a day, like get a haircut and see friends and do laundry all in the same day.  I dream about that a bit, but the idea of “more” is so nebulous, and so hard to imagine, that I don’t dwell on it much.  I worked at a job as recently as late 2011, but doing “more” without feeling horrible was a long time ago and it’s harder to remember.  So I think about jobs, careers, possibilities.

And obviously there’s the money part.  I don’t know where I’ll be living in a few months, and it all depends on the insurance appeal decision.  I haven’t been buying new clothes, even new winter socks without holes, because of the money.  I fantasize about being able to buy new slippers without worrying about the money.  So earning an income would be fantastic.

The cognitive aspect is important too.  I miss using my brain.  Of course, I’m still having cognitive problems…. it took me a long time to think of the word “cognitive” as I was starting this paragraph, actually.  But if I can work, then I can use my brain more and give it exercise, and if I’m working then it means that I’m able to use my brain, and how fantastic would that be?

I know that returning to work, to the “normal” world, to the world where I don’t dread the question “what do you do?” is pretty far off.  It could be months, it could be years.  It may never happen.  But right now I’m dreaming.  I’m making plans.  Because if it does happen, I want to be ready.

Leave a Comment » | Expectations, Frustration, Isolation, Job, Limitations, Raves, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Even mourning is more complicated with a chronic illness

December 29, 2012

Someone close to me passed away this week.  It has been a difficult time, but it has been made a bit easier by the support of my wonderful family and friends.  They make all the difference in the world.

With everything that has been going on, I have neglected my blogging lately, which I’m sure you understand.  I did want to write today, but I will keep it short, as I will be leaving soon to spend more time with my family.

And that’s my point today: there is just so much to do when someone close to you dies, and it is made more complicated by chronic illnesses.

This week has been difficult and exhausted for even the healthiest members of my family.  For me, it’s just a bit more so.  Spending long stretches with family means bringing extra doses of my medication with me at all times.  I also need to bring meals and snacks, since my special diet means that I can’t eat the food that has been prepared for everyone else.  Of course, it’s also a strain on my adrenals, which are already struggling at their sub-par levels.  There is a lot of driving and a lot of walking, which my back and the rest of my body aren’t enjoying.  The stress doesn’t help my already-poor sleep.  And all of it adds up to make my fatigue worse.

And yet I don’t want to cut back.  I don’t want to stay at home.  I want to be with my family while we grieve together.

There is no perfect answer here.  I will just do the best that I can, just as we all do in difficult situations.  For me, this means ducking out occasionally for some quiet alone time in a separate room, being careful to eat good, healthy food at regular intervals, always carrying my medication with me, and taking time when I’m alone anyway to relax, meditate, read, or otherwise reduce my stress.

I hope to return to more frequent writing in the new year.  Until then, I hope that everyone is as well as possible during this holiday season.

2 Comments | Expectations, Frustration, Isolation, Limitations, Rants | Permalink
Posted by chronicrants

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