CRASH!

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I crashed.  Hard.  Thankfully, I have insurance.  Unfortunately, I get so tired of being my own advocate.  I can not pinpoint what triggered this one but it has been bad, really bad.  Today, Thursday, is the first day this week that I’ve not been predominately bed-bound.  The other days I’ve woken up with migraines, swollen lymph nodes, unrelenting pressure on my face and unspeakable fatigue.  I have refrained from ALL exercising and the proof is in the pudding of my ass.  Strangely, my ass and other body parts have not gotten smaller as a result of little food and a near vegetative state.   I have these great leggings formerly known as running pants and now known as secret jammies for public.

Meanwhile, I’ve felt neglectful as a mom.  My daughter, only 12, has taken a swift turn toward adolescence and has distanced her self from me significantly.  She has always been very independent, but now it’s as if she genuinely dislikes me.  I imagine this is a tough time for any parent, sick or well.  I find it especially hard because, before I got sick, I KNEW that I was a good mom.  I felt secure and confident in this role.  Now, however, I can’t help but feeling somehow to blame.  She’s gotten in some minor trouble in school for the first time ever and I wonder if it’s because of my lack of vigilance.  Even though it is not my fault, being sick on bed for days feels like a form of neglect (like an addict mom or one with too many boyfriends).

I know that I should ignore the guilt and that I shouldn’t care about what anyone thinks, but it’s hard.  Once I was generally well-liked and active in the community and now I am the flake.  When I’m sick and in a fog, it’s as if I don’t exist even within myself.  I lose time and my memory.  I am on a volunteer theatre sewing committee and just got reprimanded for not reading all the way through an email.  I didn’t defend myself and tell her that I was wrong and she was right because I don’t recall EVER reading ANY of the email!  I pretended that i had overlooked it and apologized.  Its just easier that way, but the email?  Gone.  Poof!  Nothing.  Sorry, sorry, sorry, sorry, sorry.  That’s me.  Thats ME.

It’s a beautiful day today.  Warm but not hot, birds having parties, big sun, green grass and blossoming everything.  I guess I should continue going to Stanford.  There’s really nowhere else to go and I do believe they are the closest to understanding this cunning and evasive thug of a disease.

Sometimes, I do further research on the internet, hoping to find some connection, the connection, but last time I just read that those with ME have an abbreviated life span and more likely to develop non-Hodgkin lymphoma (part of the immune system, so no surprise) and die prematurely from heart disease.  Well, please understand, that my mood will lift in time, but for right now I wish there was something, ANYTHING that might give me and millions of others our lives back.

I wouldn’t wish this on Trump!  WOOOPs, did I say that?  Sorry, I don’t remember.

 

 

 

 

5 thoughts on “CRASH!”

  1. I am so terribly sorry you had such an awful accident. I am so glad it was not any worse than it was! As hard as I know it is, try to not be so hard on yourself. You are doing all you can and sometimes things happen that we just can not control.
    I imagine dealing with the issues with your daughter is hard, but it is not your fault. She is so close to being a teenager and you know they tend to act out just to test the waters and see what they can get away with. Teenagers also tend to have unique types of attitudes which can be hurtful, but she loves you! I think she is just trying to figure out who she is and that takes time.
    I have to say, I love the Trump comment! I would wish a lot of really really negative things on that insane buffoon! I guess on a positive side, we have less than 3 years left and hopefully not even that long! Take care sweet girl! You are doing a great job and you need to take time for yourself!

    Liked by 1 person

  2. Aw, come on. Can’t we wish this on Trump for at least 1 day? Just to teach him a bit of humility, perhaps? Can you tell I can’t stand the man?

    You were in an actual car crash? I’m so used to hearing the word “crash” in relation to overdoing it, I wasn’t sure at first what you meant. But that car looks terrible, and if you were in it…that’s plain scary.

    I can’t imagine dealing with ME/CFS and raising a daughter. A challenge, for sure. I’m sure she knows you love her, and that is the most important thing. Take care, and keep writing.

    Liked by 1 person

  3. Has Stanford been helpful? I was hoping to get an appointment but there is a year long waitlist. I am a mom of two and I can totally relate to how you feel. This has been the hardest thing I have ever had to deal with. I have FM and suspected ME/CFS.

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    1. Alison, thank you so much for responding. It totally SUCKS. Parenting is challenging enough right? Stanford has helped measurably but a big part of the protocol is slowing down and it’s really hard to do that with kids -mine is now in middle school and though it’s not physically as taxing it is emotionally very challenging. At least at Stanford, they know what the h%ll they’re talking about-more than anyone else by far and I’ve been to Enlander in ny and Lapp in nc both of whom are now retired. They do RESEARCH and it’s current and they admit what they don’t know AND they are passionate about finding treatments and a cure. When I crash, I feel sad bc I know I’m seeing the best already and I’m pretty much powerless over the rest of it—one day at a time kinda thing. Pls don’t hesitate to contact me anytime:). Your friend in solidarity!!—Colette

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