Being me really pisses me off

I’m going to tell you the truth: I am really pissed off.

I am pissed that my body hates me, that I can no longer eat sweets, or fries, or bread, that I can’t control the tremors in my hands, that my mind doesn’t work the way it should anymore.  I am pissed that I am no longer the person I used to be, that my looming unemployment is doubling frightening because I have so many limitations, that no matter what I can’t seem to get all of my illnesses in check at the same time.

I am just pissed.  And there’s nothing I can do about it any of it. I know I need to accept who I am and find a way to see the good in myself and my life.  But what I really want to do is throw an epic temper tantrum and then hide in my bed under the covers.

Today I just don’t know how to pretend to be “normal” because today I want to answer honestly when someone asks how I am.  I want to spew the truth and tell everyone what is like to live with a chronic illness (or three, in my case) that controls your life.

But I can’t. I know I have to function, I have to say “I’m fine,” I have to find a way to make peace with myself.  But wow, I am pissed today.


Being Selfish: Learning to be a Parent Who is Chronically Ill

I have three children, ranging from age 8-14.  I have been a single mother for a large chunk of the youngest’s life, so I know a whole lot about self-sacrifice.  I know a lot about having to put their needs before my own.  I have had years of practice.   There were times I absolutely gave them too much, put myself too far into the background.  But for the most part, I think I struck a mostly healthy balance of their needs and mine (with mine, nearly always, in the background).

I can’t do that anymore.

Don’t get me wrong.  They are still at the top of the importance scale.  I still make sure they are tended to, that all their needs (and many of their wants) are met.  My partner does the same.  But I am no longer a distant fourth to them.  I am pretty well tied for first.  And that’s a huge, difficult adjustment.


This morning, I drag myself out of bed and start my morning, which includes eating breakfast, taking pills, and trying to survive the morning pain and stiffness.  The kids have gotten themselves out of bed (too early-grrr), gotten their own breakfasts and gotten ready for school.  Youngest comes out from brushing her teeth and says to me, “My throat hurts and my head hurts.”  My first response (and one I unfortunately said out loud): “Crap. You can’t get sick.”  Because I am selfish.  Because I can’t take care of another sick person right now.  Because I absolutely can not run the risk of getting sick myself.

I feel so guilty that I no longer seem capable of completely selfless responses.  I feel guilty that I can’t seem to be able to just put my own feelings in the backseat.  At the same time, I am totally aware that right now, it would be bad for everyone if I did put myself last.  The truth of it is: I need to get better.  I need to do all of the things I am doing right now to feel better, so that I can be their mostly selfless mother again.  I need to feel better so I can take care of them, and enjoy being with them.  And I have to take care of myself, have to put myself near the front of the line, in order to feel better.

I feel so so guilty, so much like a bad mother (even though deep down, I know I am not a bad mom. Maybe just not a great one right now). But I keep reminding myself of something that my best friend says when we as parents are making a choice for our kids (usually it’s deciding whether to buy some odd toy or whether to take them to, say, Chuckie Cheese): “You have to love yourself, too.”  That has helped me steer clear of so many toys that would have made me crazy, so many choices that I would have hated, and my kids have survived every one of those decisions intact.  So, now, when I am struggling with the guilt of making my health a priority, I remind myself that I have to love myself, that I have to do this for myself, for my sake and for theirs.  It makes it just a little easier to live with the decisions I make each day.

You have to love yourself, too.  A lesson for all of us, not just the parents.  A definite lesson all of us with chronic illnesses need to learn, to remember, to believe.

You have to love yourself, too.