Self care is *not* a vacation

November 24, 2011

Family gatherings.  They’re different things to different people.  With just one exception, I really enjoy spending time with my family, and today was no different.

For the first time in days, I got out of the house and had contact with people, which was nice.  I feel very lucky that family gatherings are generally fun and are usually not stressful.  I know that’s rare, or at least more rare than we’d all like.  Still, it wasn’t easy.  I put on a smile and acted like everything was fine around most people.  When a close relative asked how I’m enjoying my “break from work,” though, I had to say something.  I explained that this wasn’t a vacation, that I’m really not feeling well and I’m trying to use it to get better.  I said that the last time I left the house was on Tuesday, and that was only to get groceries for my Thanksgiving cooking.  Before that, I hadn’t been out since Sunday.  I pointed out that if I’d tried to go to work this week, I probably would not have felt up to attending the Thanksgiving meal.  So this “break” is allowing me to take care of myself.

I said it nicely, just to educate him.  Thankfully, he got it right away.  It’s frustrating to have to educate people over and over, but in this case it’s worth it; it means that next time he’ll understand and he’ll ask how I’m doing instead of if I’m enjoying the “break.”  Either way, I know he’s always going to be supportive, and I appreciate that.

I’m not going to do a big Thanksgiving article, but I will say that I am very thankful for my amazingly supportive family and extended family.  As we all know, many of us couldn’t get through this without the help and support of our loved ones, and I feel very fortunate to have a great group of relatives around me.

Life can be shitty, no doubt.  So when I’m having tough weeks like this one, I try hard to remember the things I’m grateful for.  After all, it’s not all bad.  The important thing is to remember that.

 

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.  And if you’d like to get these posts emailed to you for free, simply click the “Sign me up!” button in the top right corner.

Leave a Comment » | Educating, Frustration, Insensitive, Isolation, Kindness, Limitations, Rants, Support, Symptoms, Thoughtfulness | 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

Dissing discrimination

October 25, 2011

Are you discriminated against because of your illness(es)?  Have you seen it happen to others?

I read some tweets yesterday about people who are publicly discriminated against by strangers.  People spit on them!  I was horrified!  Now I’m wondering, is this common?  Have I been blind to it?

Most days I can “pass” as someone who is healthy, or as someone who appears to have an injury.  I have never been in a wheelchair for more than a few hours at a time (in an airport, at a mall) and those times have been rare.  When I was in a wheelchair some people were kind and held doors open, others were rude and verbally bashed me for blocking their path.  Many people were ruder than I would have expected, but I can’t imagine that they would do worse  But then, despite my cynicism, I still tend to give people too much credit.  Sad, isn’t it?  Anyway, most days I have a limp, or maybe have trouble opening a door, but for better or worse, most of my problems aren’t obvious to strangers.  I can hide them if I want to or need to.

So if this really happens as much as the tweeters implied, how have I not see it?  I know that I can be blind to many things in the world.  Sometimes I’m in my own head as I walk down the street, and don’t notice a friend walking the other way.  I drive someplace, and don’t remember how I got there.  I believe the tweeters.  I have no reason not to.  My main doubt is about myself: did I happen to not see a few incidents, or is some part of my brain intentionally ignoring the problem?  Are other people seeing it?  I’m guessing they don’t, or I would have heard more about it sooner.  Either way, it doesn’t matter.  Now that I’m aware of it, I’m going to pay more attention.  I hope you will too.  Have you seen this kind of thing?  Have you done anything about it?  Has it happened to you?

I hope you say no, that this hasn’t happened to you and you haven’t seen it.  But I know the reality.  It’s happened to someone.  My hope from now on is this: that it won’t happen anymore.  Let’s tell our friends and family and political representatives.  Society as a whole needs to have more respect.  It is not ok to treat each other like this.  We need to care about and support each other.  And we need to speak up when we see otherwise.  I know I will.

Note: When I mention speaking up, of course I recommend only doing this when it is completely safe to do so.  Please do not put yourself in danger in order to make this point.

2 Comments | Educating, Expectations, Insensitive, Intrusions, Isolation, Politics, Rants, Thoughtfulness | Permalink
Posted by chronicrants

Sharing… or not

October 23, 2011

I have to admit, I was feeling totally uninspired yesterday.  Sure, I could have written something.  I had plenty of topics.  I just didn’t feel like writing about any of them.  Then last night, I found myself getting plenty of inspiration.

I want to a small party where I knew some of the guests and didn’t know others.  Of course, a common question is, “What do you do?”  I had no problem answering that when I was simply unemployed.  For some reason, though, answering it now feels awkward.  I have a job, but I’m not working at it.  I was saying something about Friday and not being at work, and someone questioned me about it.  How do I answer?  My friends know what’s going on, but I don’t feel like discussing it with acquaintances or strangers.  Besides, the followup question would be to ask what health problems I have, and this is a party.  I really don’t want to talk about it at a party.  So I was vague.  Still, it felt awkward.

More awkward than that was the person who asked what allergies I have that cause me to ask about every ingredient in every dish.  I finally told her I have IBS.  It turns out, she has IBD.  Ok, similar but different.  She then proceed to tell me all about a book she had just read, and the diet it described.  Oh boy.  At least she has a similar condition, so that’s better than when people with no idea what they’re talking about decide to give advice.  But again, this is a party.  I don’t want to talk about symptoms and treatments.  I know she meant well, but it was too much.  I kept trying to change the subject, and she kept bringing it back around.  I think it’s worse when the person is well-meaning, because I don’t want to be rude.  Still, this is my life and my body and I really don’t need every Tom, Dick, and Jane advising me on it.

It was an interesting evening.  I had fun for the most part, but it was a good learning experience, especially for my new work situation.  In terms of the bigger picture, though, it was a huge success.  I spent over an hour baking, then rested, and was able to go to the party and feel good.  I was in pain from standing so much while we all talked, but I was able to do it.  I got down on the floor a bunch of times to play with the new puppy.  I didn’t have to leave too early.  Yes, this was definitely a successful evening!

Leave a Comment » | Educating, Frustration, Insensitive, Intrusions, Isolation, Job, Kindness, Rants, Raves, Symptoms | Permalink
Posted by chronicrants

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