I am probably in one of the more vulnerable states that I have been in. Probably, not the best time to blog. Probably, not the best time to share. It is in these raw moments of life that I find my writing to be the most real and alive, however. And, for this reason, along with the idea that I want to maintain a certain degree of authenticity and transparency, I will write. Sometimes, it is hard looking back at times I have failed big and and pressed “publish.” I wanted to delete, but I didn’t. I chose to stack stones and I am glad I did.
Yesterday I got my first full dose of Ocrevus. It is my drug for my MS. I feel pretty gross today. I did not expect this. I am super busy at work. Memorial Weekend.
I was in wet grass, traipsing up and down the fields of graves at the Rosedale Memorial Gardens this morning early. The sender doesn’t have a clue where the grave is and there is no one to help. So, you do what florist’s do and you hunt. It can be super fun, really. When it is windy, cloudy, you’re hung over from a heavy dose of medication, and you have one flat grave to find in a sea of flat graves… grave hunting isn’t as fun. I am walking without my cane, but I am very slow and I am limping to some degree throughout the day. If I stop moving at all, for any amount of time greater than a minute, and start moving again, I will need some warm up time. I am in pain in my right leg almost always and I am still not told what the cause is, if it is not MS. I was in a lot of pain this morning. It was then that I got a message that my husband was already headed out of town to Boise for an unexpected work trip. Something about losing my guy for the day, really blew me over. The kids first day off for summer break, not wanting them to already acclimate to screen time 24-7, and just feeling the added pressure to perform well at work. I realize quick that there is more and more I “can’t handle.” Emotionally, mentally, physically.
Silly things, like hair and make-up are a big chore with tired shoulders. Arms are heavy. I rarely load or unload the dishwasher because bending over and repetitive tasks seems to really cause spasms and fatigue in my torso, back, and limbs. My mom got us a new dish washer for Christmas. I seriously do not know which buttons to push. I pay the girls each $100 a month to do dishes, vacuum, and some other chores around the house. Laundry is another tough one. Folding is not my jam. I can do it, but it comes at a cost. Toby is the laundry dude. I have been a gardener since I was a little girl, but I haven’t planted an annual blossom in years. Digging in the dirt is a lot of work. This was one of my favorite hobbies.
Hobbies are few. I was super embarrassed to admit that to my nurse yesterday at the hospital. So, they lose a vial of my medicine, right? Like, a $15,000 vial of medication is just missing. And, they poured a vial, so… you have twenty four hours to use the medicine once poured and I need two, not one. They had to scramble and find a replacement vial in Meridian and the hour to get it, took two hours… My nurse and I got to stay late and chat because after the 4 hour infusion, you have to stay an hour. It was not my favorite day. But, she runs. She’s a runner. 8-10 miles a day. I wish I did something good and healthy and productive with a hobby.
I guess this is a hobby. But, it’s not like a real hobby. Right?
My husband has always had hobbies and his thing. He’s always into something pretty heavily. Right now, for instance, he is training for a Spartan race. It’s this really ridiculous obstacle course for adults. He is all in. That’s how he do. He will probably win a medal or some random trophy will be made up in his honor when he competes. He is that kind of a guy.
It is hard to be married to someone so loved and able and amazing as Toby, when you’re someone like me. The contrast in our lives is dramatic. Like, first of all, we’re totally becoming the awkward couple because I am getting squishier and uglier, and aging quite like regular lazy Americans and he is all, “I want an eight pack for my 40th birthday.” If people saw us together, we wouldn’t be pegged as “together,” ya know? Bring in the fact that I mentioned I rarely do make-up or hair. Ugh.
He reminded me today that he works very hard to do the things he wants to and sets out to do. It doesn’t all just come to him. I’m on the other end of the spectrum, like a hamster in a wheel trying to work, but getting much less out of my effort, than someone like Toby.
We are the weak and the strong. The able and the not able. The favored and the forgotten. The good and the bad. At least, most of the time now, that’s how my brain sees it. I am very bad. There is just so little self worth at this point. Very little confidence. Very much just bad. Lots of bad and dark days and difficult times.
Taking care of my pain is a 24/7 job. I think the unrelenting pain, no doctor to help, not enough faith to be healed… all of these things have contributed to my low self-worth. I can hardly keep my head in one direction for any amount of time, my shoulders burn with fatigue and pressure, my neck is worn. There is no pillow, no position, no pill, no massage to provide comfort. Bending over is a serious chore. Turning around to give my seven year old a kiss after I’ve already walked away, irritates me because it is more work. I went to help the play day at the school for a few hours and could hardly walk back to the car. My legs are the biggest cause of pain. It is nonstop. From mild aching – like what you would expect with the flu – is what I feel all the time. Throughout my whole body, but absolutely my legs. If not the aching of the flu, a major muscle strain, cramp, spasm, to sheer stabbing. It is in my right thigh, hip, groin, and now the same thing is under my knee. It makes walking unbearable. It is like my leg is somehow totally stiff and totally weak all at the same time and the pain is just my muscles trying to “keep it together.” I do not know. And, nobody else does either. It is hard to know how badly I feel, to keep on going, and to know that everyone expects so much of you. When you know that if your children or spouse or employees felt this awful physically, you would change expectations. It’s just enough to bother me and completely interfere with my life, but not enough to actually get helped. It’s very hard.
I am very unhappy. I think that feeling sick all the time makes one unhappy. It makes my heart hurt to type this with so much honesty.
I am such a nuisance and burden to my family. They have become worn. I don’t recall any of them asking me how I felt last night or today, from the medicine. Normally it would be a big deal, but now it’s just part of my crap. It’s my burden. I can’t blame them. I really can’t. I constantly need help and need more.
With that in mind, I have made the decision to sell my shop! I priced it high last time. This time I will try significantly lower, but without a realtor, and see what happens. With my health seemingly deteriorating, with no answers or solution in sight, no guarantee of good things to come, I think this is the best choice. I am part of the product that has made my try at the store successful. Training someone to be me at the store, is going to take more work than I am willing to put into it at this point. If I could have invested into it with a building, and really made it into a package deal with all the growth potential I see, I would have loved to try. But, the bank did not see things the same way! That was a tough day. It’s been months ago, but still hurts pretty big.
The shop is now just a burden. To my body, to my family, to my spirit, . To know that it will never be a good family business with something to retire on, I think I would rather let it go. If I would have had resources to help elevate the store with the passion I could see, it would have been more helpful in working through the pain to make something beautiful. As it is, I have to surrender.
I guess the point of today’s blog is to one, give me a voice. I can vent. I can be honest. No one can delete me or tell me to stop talking in my own space. And, two, sometimes it’s just helpful knowing someone else is going through what you’re going through. Facebook is a totally fake form of social media that depicts one side of a person that they want people to see. It is not real life. It is not pain and struggle. People do not treat you in real life how they treat you on Facebook. Nobody wants to hear you complain, they just want you to be happy. I think I am a little FB done, eh?
I want to let that one other person out there who is really struggling, to let you know that I am with you. I feel suffocated. I want heaven more than anything. Except, lately, I am really scared to make my account to God. He will be utterly disappointed. I thought when we got to heaven we were IN. And, it looks like scripture says we have to give an account of our lives to God. With tears welling up from the depths of my soul, I have no clue what I will say to God on how badly I messed up my try at life. I just couldn’t figure it out. I flunked at church. Who flunks at church, right? I just couldn’t get it together. What if he doesn’t like my account? Am I out? Can we just skip the accounting? Does he get the chance to reject what Jesus let in? Why the account when we were already made clean? Why make me go through how bad I am, when I am supposed to be in the place of no suffering? I don’t understand.
Until then, I think maybe there is someone out there who may need to know that someone else out there gets that life sucks, a lot. And, we just keep breathing. And keep putting one foot in front of the other. And keep hoping that Jesus has us even when it feels like he does not.