Do over

I woke up on Friday with a cold.  I knew it was coming but everyone seemed to just get the mild onset symptoms and then it cleared.  Me?  Ohh you know my body and I don’t get along so well.  I got the mild onset then BAM!  Woke with a full on cold, chest, head, sinuses, cough, congestion.  My list of complaints goes on from there like the 12 days of Christmas song.  I’m in a moderate amount of pain (shoulders through fingertips and then a band around my chest from neck to belly button).  I’m trying to ignore it.  My major joints are also in a state of panic.  The cooler weather woke up that deep, aching pain in my knees, hips, ankles, wrists etc.  and they all added their complaints to the list.

I suspect what happened was something along the lines of my body trying to fight off the bladder infection (and the infection in my nose) when the cold virus hit.  I still have the bladder infection (nose is nicely clearing up) but it’s waning, finally.  I’ve got a few more days of antibiotics to take yet so I think I’ll be okay when that’s done.  Or, more okay anyway.

The doc upped my pain pills to double so I’m hoping those kick in soon.  I have to pick up my new scrip tonight or tomorrow and I had hoped to have a more stable testing field (aka my body) but, as things seem to go, there will be nothing stable about me.

We have collected our thoughts on the school situation as well.  D is finally considering moving Colt to a new school.  It was terrifying before…sending him into a new environment with no friends, but the way things are going it’s looking like he has no friends anyway.  Rather than have this fight with the school each and every year, only to resolve it somewhere near May, right before school is done for the summer, we’re going in full throttle.  We will be asking for a daily report indicating what work Colt completed that day, along with teachers comments.  Right now we have (Dun-dun-dun daaaa) NOTHING.  We get zero info, zero feedback (because he’s not doing anything!!!).  The teacher is going to hate us…so is the principal but this isn’t our first rodeo.  These folks want to start again at the beginning since they’re all new players.  Screw that…we’re pulling rank and if they don’t listen immediately, papers.  Lawyer.  Fuck it…I’ll go broke making this point if I have to.  I have never in my life heard of such a struggle put up over adequately supporting an autistic child.  !!  I’m starting a facebook page for him.  Maybe I’ll be able to get someone’s attention there.   *sigh*  I hate the world some days.

Wow I feel like crap.  I’m a little depressed too…can feel it tickling the edges of my mind. The issue with D’s dentist and Colt’s teacher (et al), my pain in the butt bosses and my disillusionment, courtesy of the health care system….the dismissal of my pain by all the different specialities and the medication trials…gaining weight and pain at the same rate….  the nightmares, the arguments with people…the dyslexic way I interpret and create friendships…  fuck.  Fuck!!!  Fuck YOU body/school/medical system/bosses/not-really-friends.

What do I do now?  Start over?  Sit quietly in my humility and try this all again?  I wonder if this isn’t an endless loop, just like the depression was.  I would dream of depressing things, wake depressed, lament over the depression and depressing dreams, write about the depression and depressing dreams…it was no big surprise that I ended each day depressed.  My body changed that on me…made the physical pain the most important thing.  I slept in pain, dreamed of pain, woke up in pain, begged for help, researched, wrote, asked a million questions…all about pain.  When it was the centre of my world, everything I was could be defined through pain.  The depression didn’t have a strong enough foothold to make itself more important than the pain.

So what now?  An unhealthy mix of pain and depression?  Ignore both until I can’t stand being alive any more?  I mean, this is what I’ve been left with:

There is no particular reason for my spine to be degenerating and, although it’s painful, there’s nothing anyone can do.  I will have to live the rest of my life in agony with no way out.   So…cope with it.  Cope with the pain and the depression…the anxiety and panic.  Cope with all of the ingrained reactions and confusing signals; cope with the fear without ever quite understanding why.  Cope with a disabled child who struggles so hard without being able to help.  Cope with the schools and the peers…the friends he doesn’t have…the birthday parties he doesn’t get invited to.  Cope with the job and the stress while in pain and so sick…..cope with the fact that you get zero recognition for doing so.

What is it that I need to do, do you think?  Do I need to start over?  A new job, a new attitude for the school board, a new place to live?  Will anything be different if I run?  (Sadly, I think it will end up the same no matter where I am).

Seriously.  I’m trying not to dwell on the negative.  I’m trying to be happy, forward focused, dedicated to a new way of thinking.  It’s just that I stand tall and feel okay about it but then WHACK!  Something crashes in to me and pulls me to the ground again.  I can deal with the school.  I can deal with the pain.  I can deal with the virus and the random issues the meds cause me.  I can deal with my asshole bosses and my job, I can deal with D and the stresses he faces, I can deal with Colt and the issues he faces….I can deal with my head and the issues I face….but really?  I’m not so into the eternal coping idea.  I feel, today, like it’s all just one big waiting game.  I’ll fight and struggle and cope until I drop dead on the ground and they throw me in the fire to spread my ashes (knowing my luck they’d likely just sweep me up and dump me in the garbage bin).  *sigh*
I’m not feeling well guys.  😦  Nothing inside me is feeling well today.

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About Grainne

My name is Grainne. This blog has been with me for years now and has served as a journal, a confessional, an outlet and a place for me to create and express my love of life. Thank you for stopping by and for becoming a part of this life long journey of mine. I appreciate every single one of you who takes the time to do so. :)

7 responses to “Do over”

  1. Mental Mama says :

    Would it help if you took a day off work during the week just for yourself? A day to take a nap if you wanted, or go out to do little things that you’d like to do? A real, honest to goodness chance to relax?

    You know that running won’t help, you know that. I do think changing Colt’s school might be a good idea – but that’s not running, that’s exploring another avenue for appropriate education for a child with special needs. And it sounds like he’s being completely short-changed where he is now. He can’t advocate for himself so you and D are all he’s got.

    Try to keep holding on. I know it’s hard, dear god is it ever hard. Just remember that you are way stronger than you think.

    • Grainne says :

      Thanks Mama. I’ve thought of taking a day off to myself through the week but every time I do that I just end up sleeping the whole thing through. I can sleep without stopping, I think. I just need a way to avoid that sleep switch. Maybe I should start drinking loads of caffeine or something. Ha.

      (hugs you)

  2. KittyHere says :

    I believe a school change could help. How much worse could it get? There are teachers out there that must know how to help Colt. Even if the teacher is not a specialist they have got to care.

    It is OK to to come to the conclusion that coping with everything on your plate is too much, that something has to change. Like Colt needs an educator who cares you too need someone standing on solid ground to help you. Exactly who I do not know but there has to some assistance somewhere.

    • Grainne says :

      Thanks so much Kitty. xx I’m struggling with the school change idea. I know it might make things much better but then he’ll be losing his babysitter and her awesome little ones who look out for him like he’s their brother. It’s difficult to weight. Definitely on the table though. xx

  3. Pete says :

    Wow what great advice from Mama and Kitty!

    Sometimes when things are all too much I take a day off and (‘relax with my meds’). We’ve talked about this before, so you know what I mean, but you do have to be careful.
    My pain specialist told me that no one in this world tody (within reason) should have to suffer chronic pain. He brought my pain down from a daily 6/10 to a 3/10 along with help my GP, so I’m glad your Dr upped your meds! I still have my shocking days as my nerves are crushed and my body is falling to bits but I am better off now than I was.

    As for Colt I think he needs a new start with teachers, or specialist teachers that pardon me “are going to give a shit!” Talk it out with D and Colt so he feels involved too.

    Pete x

    • Grainne says :

      *hugs you* Hiya. Thanks for the comments and (always) good advice xo. I really don’t want to move schools *only* because his sitter will have to change. Colt has no one in the world but D, me and the K’s house. Their three kids are like brothers and a sister to him…he’s grown up with them. The reason it works out so well is that two of her kids go to school with C…they ride the bus with him, keep him happy and smiling, and then watch out for him at school. It’s that stability I don’t want to break. He has no friends aside from these kids.

      I don’t know what to do. I really think that the family stability is more important than a good teacher right now. I may be wrong, but I’m not sure I’m willing to find out.

      • Pete says :

        Now I know that I can see that You are right Grainne. It’s so important to maintain stability, (as you know my sister has a child with Aspergers/Autism) and I think for now family stability is tantamount xx

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