My hopefully-realistic ideal

September 2, 2012

Like I said the other day, I have reason now to hope for improvement for the first time, but it worries me.  Still, I can’t help but think about the future.  So instead of thinking of it as “hope” I’ve decided to create “goals.”  The difference is that hoping for something better is a bit vague.  Goals are more specific.  And I know that the goals may not happen, but I can still hope to reach them.  Well, let me demonstrate:

I often wonder if I’ll be able to return to work some day.  When I left my last job, my health was pretty rotten.  I was working full time and not doing much else.  I wasn’t exercising, socializing, or growing as a person (except for my stomach.)  If I go back to work, I need to be in a better place, one where I can work and also do other things.  Crazy, right?  But what if….?

So that begs the question, what other things do I want to do besides work?  And here’s what I’ve come up with that I think is realistic:

  1. I want to be able to wake up an hour early every day and exercise.  I have never been a morning person, but in recent years I just couldn’t have managed it even with the best of intentions.  I want to be able to wake up and get out of bed within a few minutes, instead of spending an hour gathering the energy to get up.  I want to be able to do light exercise without first loosening up my muscles and joints for several hours.  I want to do physical therapy or take a walk to start my day.
  2. After exercising, I want to get ready for work, then go to work for a full day.  I don’t know yet what kind of work it will be, but my goal will be to avoid desk jobs.  This should be interesting, since I’ve always had desk jobs, but I want something more interesting, and I want the energy to do it, whatever it is.
  3. After work, I want to do something other than watch tv due to a lack of energy to do anything else.  In fact, I want to not own a tv.  Instead, I want to spend 1 or 2 weeknights each week meeting up with friends or going out on dates.  The other evenings I want to read books, work on hobbies, and learn new skills.  I have a few ideas for new skills, such as learning to sing, learning a new language, and learning web design, but I might end up doing something else.  I definitely want to do some form of self improvement, though.  I will also use weeknights to cook, do laundry, and take care of other chores.
  4. I want to walk more and drive less.  I’d really like to ride a bike, but I think that’s not so realistic for me, so I’ll stick to walking and public transportation as much as possible.
  5. On weekends I want to go out each day if I so choose.  A day at home should be because I want a day for myself, not because I am too tired to leave the house.  Weekends should be for the same things as weeknights, but more so.  I want to spend time with family and friends, work on hobbies, and learn new skills.
  6. Each night I want go to bed at a reasonable hour, then wake up 8-9 hours later and get right out of bed in order to exercise.  I want to get tired at night before I go to sleep, but at no point will I be fatigued.

I have been thinking about this for a very long time.  When I started writing this, I was worried that it wouldn’t be so realistic after all but now, seeing it all laid out at once, I’m realizing that this is the very least that someone should aim for.  Maybe my goals should be higher, maybe not.  I do believe that these goals are realistically achievable if my health improves, and I know that I will not go back to work unless I can achieve them, so for me this feels about right.  And I’m pretty sure of one other thing: if I do manage to achieve these goals, I will be happy and content.  I will continue to aim higher after I reach them, of course, but I will not be upset if this is as high as I can get.  To me, this looks like a pretty fantastic life.

4 Comments | Expectations, Limitations, Milestones, Raves, Unpredictable | Permalink
Posted by chronicrants

Suspicious of hope

August 30, 2012

We mourn the loss of our health the way we mourn other losses.  For me, I went through the 5 stages of grief back in my teens, when I realized the daily pain was going to be a permanent part of my life.  Then I went through them again at age 23, when I was diagnosed with an autoimmune condition for the first time.  These were different kinds of losses.  First I had to accept the current symptoms, then later I had to accept that things might get worse eventually.

About 10 years later, now I’m experiencing something new: hope for improvement.

At first, with the pain, there seemed to be no point in hoping for improvement.  After the initial rounds of doctor appointments, tests, and surgery, it was clear nothing would change.  I could accept that, because its effect on my life felt limited.  Unpleasant, horrible, obscene, but limited.  Later, with the autoimmune diagnosis, there still seemed to be no hope for improvement, and I foresaw a very difficult life ahead, but that was in the future and I was living in the present, so even though it was in a part of my mind, I tried not to focus on it.  More recently, of course, my life was altered drastically, and I didn’t feel anymore like I was really living my life, but more like I was just trying to get through it.  This is no way to live, but what choice did I have?  And that’s where the hope came in.

Now I picture my future as being better than my present and that worries me.  I worries me mostly because I have no idea if it will be true.  I picture a better future in part because I have some medical reason to hope, because I am pursuing new treatments and so far they have helped a bit.  But I also picture a better future because I refuse to picture a future like my present, or possibly even something worse.  I picture a better future because it’s what I have to live for, and I need that ideal.  But is it realistic?  Is it even possible?

I am scared to hope.  I am scared that I will get my hopes up and will then be crushed when I don’t improve.  My dreams are simple: to go back to work, to date, to travel a bit, to maybe even have a family one day.  But to anyone who has been ill like this, these dreams aren’t simple.  They aren’t easy and they aren’t a given.  Dreaming of these things could be a way of setting myself up for a huge disappointment.

How can I stop?  I honestly don’t know.  It isn’t as though I spend an hour daydreaming about what I’d do if I felt better; it’s much more subtle than that.  I hear about an interesting job, and wonder if that’s something I might want to do when I go back to work… and then I remember that I don’t work.  I remember a great trip I took and think about going back… and then remember that I can’t travel.  I think about how much I should save up for my next car… and then remember that I have no income to save.  I picture moving to a smaller apartment until I meet someone… and then remember that I’m not dating.  It’s hard to shut off these automatic projections of the life that I always assumed I’d have.  I suppose that in time, I’ll change my frames of reference, but I’m just not there yet.  So should my goal be to stop dreaming?  That’s a horrible goal.  And yet…

So a part of me is continuing to hope, even while another part wants to run away from any sign of hope.  And in the end, I just hope, desperately, that a little bit of what I’ve been dreaming of will come true.

1 Comment | Expectations, Frustration, Isolation, Limitations, Unpredictable | Permalink
Posted by chronicrants

Holes in the so-called safety nets

August 28, 2012

There’s this idea that the so-called social safety nets are just hanging out, waiting for us to jump into them whenever we feel like it.  To listen to the politicians speak, these safety nets are easily gotten, easily abused, taken for granted, and a huge waste of money.  If you don’t live in the U.S. and/or don’t know what I’m talking about, check out the links for explanations.

I can’t speak about every type of “safety net” because I haven’t tried them all.  And I can’t speak to all of the politicians’ points.  But I can definitely say that these services are not so easy to get!

In this fight for services, I have a lot going for me: I’m intelligent, I am well educated, I have unlimited internet access and my own private computer, I am well organized, and I used to deal with red tape and bureaucracy on a regular basis at a previous job.  So even while other people struggle, this should be really easy for me, right?  Yeah, right.

A couple weeks ago I made it very clear how I feel about Medicaid.  And I was thankful that at least in my state, I’m eligible to apply for Medicaid, called MassHealth here.  Of course, there’s a downside: I followed all the rules and it’s still not working out well.  When my former employer’s benefits office told me I was losing my health insurance in just two short months, they told me that it would take 3 weeks for my MassHealth application to be processed, so I should wait to apply.  If I applied too soon, my current insurance could get in the way, so I should time it to get MassHealth just as my insurance ran out.  I called MassHealth’s customer service line several times and spoke to three separate people.  Each person told me the application would take 3 weeks to process.  The automated system said that the current processing time is 15 business days.  Ok, so it’s 3 weeks; that’s not so bad.  But it turns out, it’s 3 weeks to process the initial application!  After that application, it takes 90 days to process the supplemental disability application!  The supplemental disability application states that this time can be speeded up by including medical records, so I included all of mine back to January 2011, even though they really only needed the 12 months..  Today I spoke to the office that handles those applications.  It was explained that they are still required to contact my doctors and to give them 30 days to respond with my medical records.  Yes, these will just be duplicates of the records that I already provided.  So what was the point of including those records?  None.  I did not save time, I just spent more on postage and wasted paper.  Fantastic.  So now I will have a 2-month gap between when my insurance ends and when I could even potentially be approved for MassHealth.  Of course, they could still deny my application.  And what am I supposed to do in the meantime?  Well, I can stop seeing doctors and taking medications, but that’s not entirely an option.  There’s one medication that I can’t stop without doing serious harm, and another that would do moderate harm.  I can either pay for these out of pocket myself, or I can spend $550 per month for COBRA.  Great options.  But I guess it’s my own fault – I followed the rules.

Services like housing vouchers and food stamps are shrouded in mystery.  Even though these are state and federal programs, they are handled at local levels.  It takes a few phone calls to find the right office.  This office will not provide information by phone and there’s nothing helpful online.  They do not make appointments.  They simply say that I should show up with my paperwork, then they’ll tell me which services I’m eligible for.  I don’t even know which services they handle!  So the only way to find out what I might be eligible for is to show up at this office, but of course showing up can be hard for people with health problems.  And I’m slowly learning about others offices that might be able to help with this kind of thing, but only by asking for advice from other people who have gone through this process.  As far as I can tell, there is no one central calling center or web site to provide information on what services exist for people with no income and an inability to work due to health problems.

And then there’s Social Security Disability.  Should I even discuss this?  I’ve found different statistics for how many people are denied the first time they apply, but the lowest number I found is 50%.  If these numbers are right, that means that more than half, possibly much more than half, of applicants are denied the first time they apply.  And quite a few are denied on appeal, too.  The application is long and arduous.  It feels nothing like a safety net and everything like a test.  Filling out the application is a test, waiting to hear back is a test, going through the appeals process is a test.  And if you pass?  You get enough money each month to pay your rent.  Maybe.  If you’re lucky.  Of course, there won’t be much money left over for frivolous things like food, but that’s what food stamps are for… if you can figure out how to apply for them.

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Posted by chronicrants

Remembering spontaneity

August 27, 2012

A friend called me up the other day and asked if I wanted to hang out.  He meant right away.  I didn’t hear my phone ring and by the time I got the message it was too late, but it really made me wonder: when did I lose all of the spontaneity in my life?

I remember a time not too long ago when I would find myself without plans on a Saturday, so I’d pick up the phone and call a few
friends to see who was around.  I remember a time when I’d decide at a moment’s notice to go away overnight.  It got to the point that I’d pack a bag and be out the door within 30 minutes.  Then I started keeping a toiletry bag always packed with spares of everything, so I could leave even faster.  A last-minute date?  A random outing with friends?  A local getaway?  Yes, please!

Now everything has to be thought through.  Do I have enough energy?  Do I need to save some spoons for tomorrow?  (If you don’t know what these spoons are, definitely click the link.)  What will I eat that satisfies the diet?  Can I tolerate the heat?  How much walking will there be?  Will it cause more pain?

These are all completely reasonable, understandable questions.  They make perfect sense.  And they’ve killed my sense of spontaneity.

I’m not suggesting that I have to be spontaneous every day, but it would be nice to occasionally do something that wasn’t completely planned out in advance.  I want to not know what I’m doing tomorrow (and not knowing if I’ll be watching tv versus reading emails doesn’t count!)  I can’t travel and that’s fine (well, it’s not fine, but I have no choice right now) but that doesn’t mean I can’t do something at the last minute closer to home.

I’m not ready to instigate something spontaneous.  I know that.  But I think there’s a glimmer of hope.  When I got my friend’s message my first reaction was that of course I couldn’t do something without notice!  But then I thought about it, and realized that, actually, I could, and I’d probably have a wonderful time.  When I looked at the clock, I realized I’d missed my chance (he only had a short time free,) but just remembering what it was like to make a spur-of-the-moment plan was fantastic.  Now I have to make sure I actually do that.  Soon.

9 Comments | Educating, Expectations, Limitations, Unpredictable | Permalink
Posted by chronicrants

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