"I Don't Want To!" "You Can't Make Me!" Bangs feet and fists on bed while sleepily thrashing about. Yep, that's me in the morning. Every morning. Now that school is starting up again my 'morning' is going to become MUCH earlier. I have until the 22nd to get used to waking up long enough to get myself +1 together, be able to hold it together long enough for the 20 minute drive to school... Then the obligatory morning greetings to the other parents (while trying not to look like a serial killer with sloppy makeup and mismatched shoes) then the 20 minute drive home.
Once home I face the overwhelming wall of fatigue even though I've already gotten 57 hours of sleep the night before. Then the guilt hits. I really should do the dishes, clean this or that, play with my dogs, make dinner but WOW I'll just sit down for just a minute. 3 hours or so later I wake up with enough time to get the sleep out of my eyes and pick up my kiddo, 20 minute drive there, go into class, obligatory chat with parents, 20 minute drive home then the epic homework battle of the century begins.
Homework doesn't get done at my house unless I sit next to my child and ask her each question, one by one, remind her to write it all down, box in the answers, blah blah blah. I swear I went to elementary school already. I guess I get to go twice. Enter husband after long stressful day of work. Tufts of my hair are scattered around the table from me pulling at it, tear stained cheeks are the featured characteristic on my daughter from aforementioned homework battle, house still in shambles, no food is cooked, guilt and stress soaring at all time highs. Rinse and repeat this scenario Monday-Friday, and weekends too if there is homework to be done or if spouse has to work on the weekend.
Then I get into the 'if-only's' If only I could stay awake I could get some shit done during the day. If only my kiddo could work more independently, if only I didn't if only all over myself. So what do I do? I stay up after kiddo goes to sleep, I do chores then, I try to wind down some before bed, end up waking up 90 million times a night (except when kiddo calls for me- that's the only time I actually don't wake up). I think it goes without saying that I really am not looking forward to school starting. Yes, I love having my kiddo home, it's awesome! I'm also selfish. I can sleep in, I don't have to put on a fake face and mingle with parents (yes, I think it's important so that's why I do it.) I have an only child in a neighborhood with zero kids. Talk about bad planning. If-only I lived in a neighborhood that had kids! Maybe mine would know how to ride a bike! If-only the magic house fairy would fly in and give me a new house in a good neighborhood with lots of kids! It's not that I don't think I should have to work for things, believe me, I do. I live in perfect irony. I bet innocent people in prison think that too. The actual innocent ones.
When do you decide to accept your reality and give up on your dreams then? I have a shitty disease that makes it impossible for me to work. I worked in a field that makes it impossible for me to collect disability income. I could go back to work for 5 years and be eligible MAYBE. Back to the shitty disease that makes it impossible for me to work comment. That leaves my husband. He has a chronic disease and has spent the last 2 summers recovering from surgery. He makes 1/2 the income I made when I could work. If-only.
There are no easy answers here. The system in place is crap and one voice won't change it. Our family faces foreclosure, utility turn off, no food, etc. every single month. A stress free life is one of the major recommendations for persons with MS. You tell me. Is that stress free? I try to work from home, so I am doing something. The wall of fatigue stops me in my tracks. I can't market myself if I can't stay awake. It's super. If-only.
My brother travels and has medical issues, as does my sister-in-law. My father had a traumatic brain injury years ago that has left him like a guy that looks like my dad, but not much else. My mom is getting older and can't do everything in the world. So I get the call to please help with this or that because I'm the only person available. I live 45 minutes away. I load up the dogs and the kiddo and make the trek up there. I like it. It's tiring. If-only.
I am sharing this because I think people need to know what it's like. I don't want pity. I want this surgery! I want to work! I want to know that I can buy food AND pay the utilities AND pay for mortgage... If-only.
People my age are supposed to be at the top of their game. Made that climb up the corporate ladder and enjoying their families, taking vacations, going to school events, having BBQ's with their circle of friends, laughing! I fell off my corporate ladder in a fiercely competitive field that will now be impossible to re-enter. I enjoy my family, I do. We seem to all have a little something something with our health tho. Vacation? HA HA HA HA HA right. I have to figure out what not to pay this month so I can pay something else. Vacation for us is when we overdose on fiber and spend extra time in the bathroom. I go to school events. I struggle through them- trying to stay up. We have one BBQ a year. I love being social, I love having people over, I love it all. It's tiring tho. The husband isn't fond of crowds (he's cool if he knows everyone), they aren't free even if people bring something to share, and I've gone through a friend transformation. I laugh at everything. That will never change. If-only.
Today I haven't taken a shower yet. I will. I just haven't yet. Too tired. It's 2:33pm. I'll get there. Guess what kind of a role model that is for my kiddo. Guess who is also still in her pajamas? Yep. If-only.
I know you can see the irony in all of this. Incongruity if you will. Trust me, I have enough character, I really don't need more.
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