The “almost” feeling

November 20, 2011

Do you ever get warning symptoms before you get sick?  What about before you get a flare?

For good or bad, having a chronic illness forces us to be much more aware of our bodies than a lot of us would otherwise be.  I’m pretty sure I would have ignored the way I felt first thing this morning, but after years of dealing with these illnesses, I’ve learned that a sore throat isn’t always just a sore throat.  For me, it’s a warning signal.  This is my body’s way of saying that something bad will happen soon.  If I don’t get some sleep in the next day, I’m going to get sick or get a flare or both.  Fun.

Now, on the bright side, getting sick would get me out of some unfortunate holiday obligations this week.  But it would also cause me to miss some fun holiday stuff too.  I guess I better pay the bribe and get some sleep.  If only it was that easy.  I fall asleep as soon as my head hits the pillow, but for some reason I’ve been waking up about 7 hours later, for no good reason.  Still, I can’t risk it, so tonight I’m taking a Benedryl, turning off my cell phone, and getting some sleep.  I hope.  12 or 14 hours should do the trick, based on past experience.

Yep, I’ve got the sore throat and the weakness and some fatigue and I know what it means.  I know what this means now.  The thing is, 10 years ago, I didn’t know what it meant.  And I’m pretty sure that even now I’m missing signs from my body.  Maybe there’s something I could have done yesterday, or maybe there’s more I could do now.  I think that a key part of treatment should be learning how to read our bodies.  Does anyone even teach this?  Maybe a doctor once told me to start paying attention, but I don’t remember it.  Autoimmune diseases can be frustratingly unpredictable.  Even a 12 hour warning is helpful.  I just wish I knew better how to recognize it.  I wish we all did.

 

If any of this sounds familiar, if you can relate, please share it on Facebook and/or Twitter.  This blog is new, and it would be great to share it.

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

Being two people

November 13, 2011

Sometimes the dichotomy amazes me.

I spent the day yesterday indoors.  I read email, watched tv, and did a bunch of other things that at the moment I can’t remember.  I was very aware of the pain I was in.  I was generally unproductive.  I got no exercise (aside from some minor physical therapy.)  It was a gorgeous fall day.  I knew I should have gone outside, but I just didn’t want to.  I suppose I’ve been a bit depressed lately.

Then last night I went to a friend’s party.  I’d been looking forward to this for a long time.  I met some great people and had a lot of fun.  I forgot about the pain.  I wasn’t depressed.  I had a wonderful time and felt great and, aside from avoiding certain foods and being careful how I distributed my weight as I stood, I completely forgot that I had any health issues.  It’s was great.

It was like I was two different people yesterday.  I know that I need to make more of an effort to be that second person.  For starters, I will leave the house before noon every day.  I might just take a walk around the block, but I will get fresh air every morning by leaving my apartment.  I will make more plans with people so that I leave the house.  I will actually do the things on my to do list each day, instead of moving them to the next day (or week.)

That won’t fix everything, but it’s a start.

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

The community of a support group

November 11, 2011

After 20 years of symptoms, today I went to my first support group.

There are a lot of reasons I never went to a support group before today.  When I was a kid and the symptoms started, no one suggested it.  Later, I didn’t know where to look (this was in the olden days, before Google.)  After a while it was more that I was stubborn and scared.  I’m still not entirely sure what I was scared of.  I guess I was scared that I wouldn’t fit in.  So many support groups are for specific diseases, and I don’t have rheumatoid arthritis or lupus or multiple sclerosis.  What I have is similar, but not the same, and it doesn’t have a name, so I figured I wouldn’t be welcome at those meetings.

Earlier this week a friend forwarded me an email about a chronic pain support group just one town over.  The regular meetings are in the library, but this one was at an assisted living facility.  I pictured myself seated with 70- and 80-somethings who would think I didn’t belong.  And anyway, pain isn’t my worst symptom, so why bother?  I made excuses and had doubts up until the minute I arrived, but I pushed myself and went.  What I found was a group of warm, supportive people.  The guest speaker, a RN specializing in chronic pain management, was fantastic.  He clearly understood.  There was a teenage girl and a couple of elderly people, but most were in their 40s, 50s, and 60s.  Sure I was one of the youngest, but no one cared.  They welcomed me immediately as one of them.

I hope to keep going, even though they meet on Friday mornings.  I hope that when I go back to work in a few months it will be part time, and I’ll try to get Friday mornings off.  I can’t believe it, but I want to go back!

For a long time I didn’t understand the point of support groups.  I didn’t want to be around a bunch of people whining about their symptoms (that’s not what this was.)  I didn’t see how they could help, since they couldn’t get rid of the pain.  Now I understand.  The group won’t get rid of the pain, but it might help me find ways to reduce the pain.  And reducing the pain would give me more energy to deal with my more pressing symptoms.

But the biggest benefit of the group, the one I should have predicted from the start but never did, is the community.  For once, I was in a room of people who understood what I was going through, and I didn’t have to explain it to a single person.  I didn’t have to say a word.  Now that’s support.

 

If any of this sounds familiar, if you can relate, please share it on Facebook and/or Twitter so others know it’s not just them, that they’re not alone.

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

Being unique but not alone

November 9, 2011

I started this blog so that others going through autoimmune issues, with all of the weird symptoms and situations, would know that they aren’t alone in their frustration, anger, and fear.

I read other blogs by people with autoimmune conditions so that I remember that I’m not alone either.

Today I was reminded just how lonely it can be.

My grandmother has been dealing with pain for several years now, but it has recently gotten much worse and she is having difficulty walking.  Using a walker was a difficult transition for her when she did it years ago.  Now she’s facing using a wheelchair.  She knows that once she begins using a wheelchair, she is unlikely to ever walk again.  Sure, she may walk around the apartment, but beyond that, she’ll be dependent on the chair.  It feels much more limiting than a walker ever did.

She is clearly scared and frustrated and mad and feeling isolated.  I want so desperately to say “I know how you feel,” and “You aren’t alone.”  I want to make her see that she can get through this.  But the truth is, I have hated it when people have said similar things to me.  That’s why I like blogs and Twitter: they’re passive.  I take what I want and ignore the rest.  And as much as I understand a lot of what she’s going through, I know that she really does feel alone in many ways, because no amount of understanding will make this anyone else’s situation but hers.

I also have to admit that I don’t truly understand.  I know what it’s like to be in pain.  I know what it’s like to need a wheelchair.  But everyone’s pain is different.  And my using wheelchairs has always been temporary.  Plus, anything will be different at my age in my 30s than it will be at hers in her 90s.  Still, I hope she allows me to provide support, but I know a lot about how this feels.

She is a strong woman and I admire her a lot.  When she finally agrees to use a wheelchair as needed, I hope she can find peace in her decision.  It is not an easy one.  And while her situation may be unique to her, she knows that she has a very supportive family and that we will all do whatever we can to help.

So for the days that you feel alone, remember who your support network is.  Talk to them, laugh with them, cry with them, and feel a bit less alone.

If any of this sounds familiar, if you can relate, please share it on Facebook and/or Twitter so others know it’s not just them, that they’re not alone.

Leave a Comment » | Educating, Expectations, Frustration, Insensitive, Intrusions, Isolation, Kindness, Limitations, Pain, Rants, Support, Symptoms, Thoughtfulness, Unpredictable | Permalink
Posted by chronicrants

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