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.


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.


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.


The many masks of chronic illness

October 26, 2011

This week’s Chronic Babe carnival topic is “behind the mask”.  The full description is at the end of this post.

Hiding.  I am amazingly good at hiding.  But we all wear masks at least sometimes, right?

I do it in plain sight, of course.  I’m standing right in front of you and you have no idea who I really am.  I’m often told I don’t “look Jewish,” whatever that means, and so people assume I’m not, even though I am.  Supposedly I don’t dress in a particularly queer way, so people assume I’m straight, even though I’m not.  And at a glance I appear to be healthy, so people assume that I am, even though I’m not.  In the first second of meeting me, people make all of these assumptions, and I don’t always bother to correct them.

Sometimes I feel threatened.  If I overhear a homophobic comment I’ll say something if it feels safe.  If the person appears violent, of course I keep my mouth shut.  With my family and friends, though, I’m completely open.  With the illnesses, it’s entirely different.  With that, I never let my guard down, not even around my closest family or friends.  Some of the reasons for this are obvious and some aren’t.

For one thing, I don’t like to worry anyone.  This may sound silly to some, but it’s really big for me.  I feel horrible when people worry about me because there’s nothing they can do.  If there’s a way for them to help, I’ll ask for it.  If they can’t help, then why should I upset them?

Then there’s the hypochondriac issue.  I have so many health problems that if I talk about all of them, people will think I’m making them up.  No, really, they will.  It’s a bit ridiculous.  So I keep my mouth shut.

The Office Mask

And of course there’s wanting to appear like I can do everything I’m supposed to do.  This really only comes up at work.  I got over the desire to “appear strong” a long time ago.  I don’t mind people seeing my weaknesses.  The one exception is my boss.  She clearly doesn’t get what I’m going through.  I let her see little bits and pieces so it’s obvious there’s really something wrong and she’ll approve the accommodations I ask for, but at the same time I want to make it clear that I can get the work done.  That was going great, until I needed to take a leave of absence.  But even up to the day I left I wore the mask as much as possible.  I didn’t know how to do it any other way.

The Stranger Mask

Walking down the street, I try to keep it together.  I don’t care too much what strangers think, but I feel like a big limp makes me a target when I’m alone late at night, and looking haggard is just unpleasant.  And it won’t help my dating situation (I once got picked up in the grocery store; it can happen.)  But when I really feel lousy, I just don’t bother to hide it.

The I-sort-of-know-you-but-not-really Mask

Then there’s acquaintances.  At social gatherings I wear a huge, thick mask.  I try to act like everything is fine.  When someone questions my obvious food restrictions, I brush it off as allergies.  My limp?  Just a small injury.  My wince of pain?  Oh, just a sore back.  I must have slept funny.  The truth?  Not a chance.  I don’t want to talk to strangers or acquaintances about my health unless there’s a really good reason, and letting on that I have even a small problem usually seems to segue into the full deal.  Who needs that when you’re trying to have fun?  Having fun is so much easier when people don’t think of me as “poor Ms. Rants” or “the sick one.”

The Huge Family & Friends Mask

The biggest mask of all, the one I really can’t seem to put away, is the one I wear in front of the people I love most.  Like I said, I don’t want to worry them.  I also don’t want their concern to color our relationship.  I don’t want it to be all about my illness.  If I’m having a really tough day or week then I let on, and they’re always there for me.  But the rest of the time, it’s more of a background thing.

I recently had a friend get on my case for it, actually.  She can tell when I’m hiding something, and then she worries that it’s something really horrible.  So I’ve tried to open up and tell her more.  The crazy thing is, after all these years, I don’t know how!  I’ve been wearing masks for so long, learning to fake it through pain and fatigue and nausea, that I can’t remember how to share it all.

Pulling the Mask Off

My health problems started as a child, and even then I learned quickly I had to be careful who I told and how much I told.  Now, twenty years later, my first instinct is always to cover things up.  And when I’m alone, the mask is still there, only now I’m hiding my emotions from myself, and only occasionally I’ll take it off.  I’m very aware of the physical problems.  At home I’ll collapse on the couch and watch tv for hours or take three hot showers a day to try and warm up.  Alone I don’t try to hide the limp or the bags under my eyes or my pale, haggard look.  I just try to hide from the fear.  Every now and then, very rarely, I’ll allow myself to face the fear, the uncertainty, the permanency.  And sometimes, very few times, I’ll cry.  And that’s when the mask is truly off.

Coming up….

In tomorrow’s post I’ll talk about the real carnival topic: what’s behind the masks.  Who am I when the masks come off?

 

This week’s Chronic Babe carnival topic is “behind the mask”.  As they write:

We know you are doing everything you can to cope with a life with illness and showing your co-workers, family, friends and neighbors that you can manage it. But when you are all alone and your guard is down, who emerges from behind that super-coping ChronicBabe you present to the world? Who is she and what is she most concerned about?