Remembering to ask for help

September 19, 2011

I’m spoiled.  I know that.  I have a fantastic support system.  Just knowing they are there if I need them makes me very lucky and very spoiled.

I’m not good at asking for help.  I never have been and it’s possible that I never will be, but I’m a ton better than I was.  After 20 years of symptoms, I’ve learned that there are times when it’s important to ask.  I still don’t ask for help as much as I should, but I do it more than I used to.

After throwing my laundry in the basement dryer last night, I ran into a neighbor on my way back to my apartment.  She was diagnosed with Parkinson’s a few years ago and I have offered many times to help her with errands or tasks around the building.  She has never asked for anything, but when I see her in the building I hold doors open for her and I help her carry things.  Last night, she asked if I could pick up something for her at the grocery store.  I told her that she had great timing, because I was planning to go after work today and I’d happily pick up anything she needed.  She seemed apologetic, kept asking if I could really manage it (she knows I have health issues too), and then started to offer an explanation.  I waved off her explanation and assured her it wasn’t necessary.  She looked uncertain, but finally believed me.  I think she was hesitant to ask for help from someone who also has limitations, but at the same time, she knew I understood.  I understand the way most people don’t.

My neighbor has friends.  I know they help her.  But I also know how hard it is to ask the same people to go out of their way constantly.  I’m so thrilled that she finally felt comfortable asking me for help.  I hope she asks again.  Some days I won’t be able to do it, but on the days I can, I’ll be only too glad to.  And I’m glad she’s accepting that it’s ok to ask.

 

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Posted by chronicrants

How do you explain “it”?

September 13, 2011

I came across this video today, and it got me thinking about the different levels of understanding that other people have.

 

Of course, the people who best understand what it’s like to live with chronic illnesses are the people who have chronic illnesses themselves.  If you’ve got them, you probably have a pretty good understanding of the difficulties, the unpredictability, the social isolation.  Yeah, fun stuff, right?

 

I’d say the next layer are the people who knew me back before the illnesses/symptoms.  These are the friends and family who don’t have CIs themselves, but they’ve watched me go through it.  They’ve been there for me, supported me, seen the ups and downs.  I may not tell them everything, but they know more than anyone else possibly could.  And they know what to expect.  They don’t get upset or even question if I have to cancel plans at the last minute.  They ask in advance if I need to sit down, if I need different food, if they can help in any way.  These people make it all more manageable.  Thank you.

 

Then there are the strangers who just assume they understand.  They don’t get it.  On good days, I try to educate them.  On not-so-good days, I just ignore them.  I’d love to educate everyone, but some days, it’s just not worth it.

 

Hardest of all, there are co-workers, acquaintances, and new friends.  These are the folks like in the video above.  They honestly want to understand, they truly try, and most often, they miserably fail.  They equate my illnesses with their recent bout of flu, they think my pain is like the time they sprained an ankle, they assume my exhaustion can be cured as theirs can, by going to bed early for some extra sleep.  They don’t see why my health problems are so different from theirs, why I can’t just push through the symptoms.  It’s harder to educate them because they are close enough to really care, so they offer too many unhelpful suggestions.  It’s important to educate them because I will keep coming into contact with them over and over.

 

Over the years I’ve gotten better at explaining my symptoms and limitations, but I still haven’t found a way to truly convey it all.  If anyone has any suggestions, I’d love to hear them.  In the meantime, I’ll just keep trying to get my point across, a little bit at a time.

 

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Posted by chronicrants

How much do you know?

September 12, 2011

What’s the biggest outside influence on your health?  I’d argue it’s politics.

 

It’s easy to get a bit self-absorbed when you’re sick.  That’s fine to do occasionally.  Then when you want to reach out, you probably turn to family and friends, right?  That’s good too.  But I hope everyone takes some time to educate themselves on local, state, and federal politics, because they do affect you.

 

Massachusetts has a lot of potential ballot questions coming up next year.  Some will affect me more than others, and I don’t know which.  Some of the questions could be about medical marijuana, doctors prescribing life-ending drugs, and changes to state health insurance regulations.  I’m sure each of these will eventually have an effect on me or on someone I know.  What are the laws in your state?  Is anyone looking to change them?

 

I’m not suggesting a Big Brother role here, but politics affects all of us.  Some of us may end up on Social Security Disability Insurance one day.  Some of us may need to stop working and rely on food stamps.  If you’re reading this, I’m pretty sure that health insurance matters to you.  Of the many health insurance changes that could come about as a result of President Obama’s plan is stopping health insurance companies from excluding someone based on a preexisting medical condition.  That means I could get health insurance anywhere in the U.S.!  For someone reading this in Canada or Sweden, that may sound strange.  For anyone in the U.S. with a health issue, it sounds like a fantastic safety net.  We’ll still have to pay for it (unless you qualify for Medicaid) but at least we’ll have it!  And what about legalizing medical marijuana?  I know that’s controversial.  I also know that when I took some in California last year, it was the first time in years that I wasn’t queasy.  I could even eat without feeling queasy!  That was a fantastic feeling, and one I’d like to have again from time to time.

 

My point is simply that politics affects us all, whether we want it to or not, so we might as well get educated and learn what is about to have an influence on our lives.

 

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Planning for the unpredictable

September 10, 2011

The air is cool and clear, the sun is shining… it’s a gorgeous day here in Boston.  It’s a day to be outdoors!

So I guess I shouldn’t have been surprised when my friend called me up and asked if we could switch our plans from being indoors this afternoon to taking a walk around a pond.  It’s a great idea, actually.  I bet it’ll be beautiful, and I’ll love watching her little girls run and play.

I give a lot of credit to my friend.  She was very careful to make it clear that we could stay closer to home or do something else if I didn’t feel up to this.  She’s really great that way.  We’ve been friends a long time, and she “gets it.”  The problem is, I want to do this.  And I do feel up to it right now.  I just don’t know how I’ll feel afterwards.  I might be completely exhausted.  And I have plans to celebrate a friend’s birthday tonight, something I’ve been looking forward to for a long time.  So if I walk around the pond, will I be too tired later for anything else?  I won’t have much time to rest in between, unfortunately, because of how things time out.

I’ll just have to take a chance, and try to do both, and hope I don’t regret it later or tomorrow.  I hope this works out!  It would be so nice to be able to predict these things, but that’s just not possible.

 

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