My New Calling, Hermit by Jean Marie Keenan-Johnston

I feel as if for some I’ve fallen off the face of the earth.  I’m sure that’s the way others are looking at me lately.  Honestly, I can’t even recall the last time I posted on here, and my own blog has become a dream put on a back burner so far back, it feels totally beyond reach.  It’s an stovetop that’s so large I can’t even see the burners in the back!  I’m so rarely seen by friends on Facebook that I’ve accumulated messages from them asking if I’m okay, where have I been, should they be worried.  My hermitage seems to extend beyond the home and on to Facebook because I haven’t even been able to write to each of them to assure them I’m here and okay…which makes me feel terrible, but I then remind myself that the delay isn’t intentional.  My daughters and I haven’t attended a play date in months.  And my free time these days seems to be the errands I’m able to get out of the house to tend to…sometimes in the middle of the night because it’s the only time I can leave my house.  Just the other week I was at the local Giant between the hours of 2am and 4am because that was THE only block of time grocery shopping worked for my family and me.  Crazy, right?

Now that school has started (we attend a virtual public school), I’m hoping things will improve somewhat.  Actually I would like our situation to improve a TON, but I’m trying to not be too hard on myself or stress myself out too much over all of this.  I truly miss blogging…I feel it’s my calling in more ways than one to not be just my own advocate but help others to learn how to do the same for themselves.  Suffering from fibromyalgia for the past eight years and now rheumatoid arthritis the past year, I’ve learned the hard way how crucial it is to maintain such a focus in one’s life.  And it feels good to know there are times I say things that help others to learn to live such a commitment to themselves.  Blogging also gives me the only outlet I have psychologically and emotionally to let off all the steam that builds up within me living this crazy life I call my own, and I really do feel it when I’ve been away for so long. Being disabled, it may sound sad but Facebook many days is my social outlet.  So imagine how I feel when I can only find those few fleeting moments to check in with everybody on there.  (Is it too personal to say it’s been limited to bathroom reading and those times the dog can’t seem to make himself potty outside quick enough for me to run out and right back in with him allowing me a few extra moments staring at Facebook on my cell?)  For my girls’ sake as well as my own, I am hoping we can get out more with our friends.  My youngest started Kindergarten this year.  (J. actually started a week late because all the craziness around here made me late with her registration!)  She’s watched her older sister, K., attend field trips through school for two years now, enjoying the same fun times as her sister at some pretty cool field trips her school set up (they actually schedule a LOT which is one of the many benefits of attending virtual school!  And a huge plus for disability budgets and unreliable social calendar scheduling that comes with parenting with disability).  Now J. is a student there too, and I worry that if she can’t attend as many field trips as she knows we signed up for during K.’s first two years at virtual school, she won’t be as motivated with the rest of what the school year brings to the table.  She’s definitely the type of child who marches to her own orchestra, so I worry she’ll need added motivation that would easily come with these field trips…a good reason why I need to make these trips work!

What’s the change causing all of this you ask?  I now find myself one of the many in this day and age who is both caregiver to children and caregiver to parent…and I’m drowning.  My mother moved in with us this June.  She fell in her home, the house I grew up in, way back in February.  And after a timeline that’s so complicated and full of difficult moments I won’t even share them all because you’d never believe everything we’ve been through to get where we find ourselves today, I am living a reality that makes me more housebound than my disability ever made me (which is pretty bad), busier than parenting ever made me (how did I handle everything on my shoulders BEFORE???), hurting more than my previous responsibilities ever made me (how is that even possible?), and more stressed than everything we’ve been through COMBINED – financial struggles that come with disability, chaos that comes with parenting, worries that come with life after cancer, stresses everyday life brings with it.  It was our goal as my mother’s children to keep her out of a nursing home after we were told she was unable to live alone anymore because she’s a fall risk.  I’m the only one not working, and my children attend school at home.  So I thought if I could just hire help to make up for my deficiencies created by my own health problems, everything would work out for the best for everyone with her here.  But it hasn’t been that easy in SO MANY WAYS.  My to-do list of things I still need to handle for her is so long I try to forget about it because of how overwhelming it feels.  Despite doing my best to manage all of this with the most positivity possible, my body has been telling me I’m not doing a very good job keeping myself calm…new health problems, symptoms of things I once dealt with and haven’t had to worry about in years, are now resurfacing.  Maybe that’s why I finally put off the many things I hopes to accomplish tonight and sat myself down here to post…my body, heart, mind and soul are depending on it for the sake of my health and sanity.  I need to feel like I can breathe again.  Even though I feel pulled in many other directions, I fought a good fight and sat here the past hour typing away.  Part of me still feels stressed anyway because the many tasks I wanted to have done for tomorrow will probably still be there.  But then I remind myself of how many nights I gave myself a short break on the couch after seeing to everyone’s needs, hoping to get up in ten or fifteen minutes only to wake instead around 4 am realizing I was so exhausted I passed out on my couch.  So there really is no guarantee it would get done…meaning I must have done a good job giving myself permission to take this time out for me.

I’m hoping this is the first of many steps to make this whole situation work better for the four of us in my little family and my mom too.  I’m hoping we find ourselves more successful with every part of making this a happier, less stressful situation for all five of us…with lining up help so we aren’t housebound every time my mother is, with figuring how to finally have the routine we always wanted that I was never able to figure out due to how much my disability shakes things up, with finally finding some answers that alleviate our pain so we can care for Mom better and not have her feeling like such a burden because of knowing how much the extra activity hurts.  All that and so much more need to be figured out and, I feel, fast.

So now you know where I disappeared to.  Please continue to do what you all do best…send positive thoughts and energy my way to let me know I’m heading in the right direction…capable of continuing to head in the right direction…and able to be more than “just” the one who runs around like a crazy person taking care of the needs of mother and spouse and kids and pets…that there is still hope for me to figure out how to include ME in the picture.  I need the day to come when I can find a way to do for ME again…even if it’s just a matter of finding that one hour every week to post here with all of you.  Although a LOT more me-time would be truly GOLDEN!!!

Thank you for your understanding, support and online friendships!  You are ALL very, VERY much appreciated!!!!