Walk and Roll

I just got back from returning a few things at the mall.  I was in the mall for less than 30 minutes, and it was early enough in the day that I was still “fresh”, and yet here I am now, tired and wiped out.

It’s a gorgeous, sunny day today, and on the drive over to the mall, I could see many places where I used to hike, and other places that I wanted to hike (Hello, Mt. Diablo).  I get a glimpse of those places where I’m farther from the buzz of civilization, cars, people, etc.; where there are great views from hill top fields, and quiet paths through wooded valleys.  And I just can’t get to those places.  I mourn that loss on days like to day, especially.

All of this annoys me and frustrates me.  I’m trying to figure out work arounds.  I have a short path near my house that I love.  Within 50 yards of the parking lot, you can find terrific views out over the hills.  It’s relatively flat, and I can walk it when I need to be outside and trick myself into feeling like I’m somewhere far more remote than I actually am.

Getting out into the rest of the world remains difficult.  Sure, it’s possible to run quick errands or get myself to a doctor or chiropractic appointment.  But that trip to the mall – difficult.  Spending an afternoon shopping with a friend?  These days it would be nearly impossible to do without completely taxing my energy, if I could do it at all.  A street fair with the family?  It’s just not going to happen like this.

So, I’m trying to look for work arounds in this area, too.  Of course, I already do most of my shopping on line, (Again, fine for the little things, but it means that I can’t use shopping as a social outlet.)  What I’m thinking about now takes me well out of my comfort zone: getting a disabled placard for my car and getting some sort of walking support – rollator, transport chair, or wheel chair.

On one hand, I feel guilty about considering these options.  I mean, on the face of it, if you just saw me briefly, you wouldn’t think that I’m sick.  You wouldn’t think that I’m having trouble getting around.  But spend an hour with me outside the house and you might see it.  Even the thought of a disabled placard makes me feel guilty.  There are obviously people who are worse off than I am who might need those spots, too.

And then there’s the feeling that maybe I’m just giving up or being lazy.  Maybe I’m being a drama queen.  Maybe I just want attention.  (Wait, isn’t that what this blog is for?  🙂  I can walk a mile on a treadmill, why can’t I walk around the mall for a while?

I also worry about whether using a device would help or hinder my future self mobility.

But, what it all comes down to, is that I want to be out and about more.  And right now, I don’t feel able to do more than short, relatively local errands.  I don’t think that a placard or a walking aid would do much to help me go further abroad, but I do think they would allow me to do longer trips without totally wearing myself out.  And, for right now, it’s not something that I HAVE to use all the time, but if I had it on hand, I’d be able to use it when I needed it.

I would definitely appreciate any feedback, especially from people who have chosen (or had the choice made for them) to use a walking aid, or from people who’ve cared for someone who uses/used a walker, rollator, or wheelchair.

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Not able.

I feel a bit frustrated tonight. Miss M and I have an invitation to see a movie with friends tomorrow, and while trying to work that out, I haven’t been able to keep hold of the idea that she also has a birthday party to go to tomorrow. It keeps slipping away from me. My mind is like a sieve. I’ll remember something midway through doing something else, drop what I’m doing so I don’t forget the new thing, and completely forget to go back to the old thing.

I’m also agitated because I’d also been hoping to go to a quilt guild meeting tomorrow. I’ve been wanting to join a group, and the Saturday afternoon timing seemed like it would work well with my schedule. But then it turns out it’s in Redwood City, not Foster City, and that extra 10 miles or so each way pushes it from “it’ll be a stretch” to “I don’t want to risk it.” Plus, I’d planned to pick up our dinner stuff afterwards, but found that the actual meeting would end 2 hours before the pick up time. And so Saturday isn’t shaping up how I expected it would.

The other quilt group I was looking into is held on a week night in Oakland, so distance wise, it’s do-able, probably. But it’s in the evening, two and a half hours after my support group ends in Pleasanton. Lately I’m so wiped out after group, that I don’t think there would be time to get enough rest between travels.

I want to stand in the middle of the room, stomping my feet, crying “IT’S NOT FAIR!!!” I want to be able to do the things I used to be able to do – like drive 45 minutes to get to a meeting without worrying that I’ll over exert myself. I’m frustrated being stuck in a smaller sphere of living. I’m annoyed that even the little things wipe me out.

I’m doing my best to acclimate. I’ve been using Amazon for most of my non-grocery shopping needs. Waiting two days for a package is preferable to wasting my energy going to Rite Aid or the hardware store. I plan my days so that I have rest time between activities. I have to spend time planning so that I don’t waste my energy. I’m pretty sure that, if I contact people in the guild across the bay, I can find someone to carpool with to future meetings.

But I want to go tomorrow. And I just can’t find a way to make that happen. And it sucks.

I probably should go to bed.

Colors and Money

After more than a month of no payments, I finally received a deposit onto my state disability debit card.  (I’ve taken to calling it my cancer card, as in, “Honey, let’s let the cancer card take care of dinner tonight.”)  One of the first things I did upon noticing this belated windfall was make an appointment at the local tattoo parlor for a small bracelet tattoo.

I’ve been wanting a tattoo on my hand/wrist for quite a while, but it’s never seemed like the right time.  Getting this tattoo is partly a result of my 80 year old self getting loaded off of tequila shots and screaming “Let’s Party!” at the top of her lungs.  (Figuratively, people, figuratively.)  But I’m off the pazopanib (which slows healing) for a while, and there’s money burning a hole in my pocket.

I haven’t always made the best financial decisions, but I’ve generally tried to do the right thing financially.  The responsible thing.  The 45 year old me thing.  Seven years ago we dug ourselves out of $100,000 of debt (from school, cars, a bit of credit card debt, and some of those not the best financial decisions), and we have tried to keep in the black since then.  We save for retirement.  We pay cash.  We’ve put off certain luxuries for later.  Always later.

But now that we’re faced with the prospect that later might be sooner, some of my feelings about money have changed.  And, again, the 45 and 80 year olds in me are duking it out.  Do we pull money out of the house to finance a trip to Iceland?  – Something that once seemed frivolous, but now seems more reasonably like a family bonding experience and adventure.  How do we balance saving for retirement and the kids’ college needs, which were going to be partly funded by having me go back to work full time, with paying for the things, the experiences, we want to share with our kids now.

As interesting, fun or exciting as they might be, I still see these possible experiences in the same light as presents showered upon a child by their absentee parent after a divorce.  Something to assuage the parent’s guilt, but which never quite makes up for the loss the child feels.  A consolation prize.

And yet, what else can I give them but time with me now?

Not that a tattoo is time with me, or even something that my kids will find meaningful or at all related to them.  Because, of course, this for me, about me, only me.  My consolation prize for having to deal with cancer, the annoying side effects that require I stop my meds, and having to change my entire view of what the rest of my life will be.

And maybe it’s the prize I get for toiling through the emotional weeds, for reaching a bit of emotional solid ground, where I’ll be able to re-plan our life and our finances with all this new information.

Or maybe it’s just pretty and I wanted it.

Tattoo

Half a career

My career hasn’t gone completely as I had planned when I was in grad school to become a librarian.  I’ve had difficulties balancing being a mom with working, even part-time jobs.  I’ve sacrificed certain career paths for my family’s needs, and sometimes because of my own self doubt.  Since we moved back to California two and a half years ago, librarian jobs have been few and far between.  Last year I took a 2 day a week contract job at a university in my home town, almost 300 miles away from where I live now.  The work was challenging and I rose to it, but the commute was a killer.

When I found out I had cancer, I experienced a bit of relief – at least I won’t have to deal with more job search disappointment.

We’ve always tried to live off of only Reil’s income, with my income being used for extras and fun things. For the most part that’s worked, but we’ve been having difficulty with that recently.  In a time when we desperately need some fun, my income isn’t there to do its part.  Add to that a few unexpected bills (a $2200 supplemental property tax bill?  What?) and the stress just grows.

My response yesterday was to sign up for social security disability.  It is hard to think of myself as disabled. I mean, I hike every week!  I’m physically strong. I feel healthy.  But then I think about how I can’t manage to put a home cooked meal on the table.  The planning and prepping are too much.  I can’t concentrate on one thing for very long, jumping from one activity to another.  How could I manage the requirements of a job right now?

And will I be able to balance a job, even part time, with my family’s needs?  And where do my needs come in?  When will I have time to take care of myself?  Because there’s a lot that needs taking care of right now.

If this seems like a lot of self-justification, it probably is.  I know that if I were to meet someone in my situation, I would think it a no-brainer that they should get disability funds.  The social security folks seem to agree.  Kidney cancer which has spread beyond the local lymph nodes (yes, that’s me) is one of the conditions which is supposed to be automatically approved.

So why do I give myself a hard time about this?  An inappropriately strong work ethic?  I don’t know.

What I do know is that I long for the funds that will hopefully come.  I long for the relief of financial stress they will bring.  I long for the experiences they will buy.  I look forward to more freedom to heal myself, emotionally and physically, and I hope that they will eventually allow me to do meaningful work – paid or unpaid – that will help me leave behind a legacy of sorts, touching people’s lives in positive ways.