here’s a round-up of the last few days. i’m going to write it here because i want to share it with you. i want to remember it. i want to be able to look back on it so i can remember where my head was when i made certain decisions. i don’t want to forget it. i want you to be encouraged if you are ever in this place. and i want to look back and be encouraged too. because i know i’ve been here before. and i always get out. but sometimes that’s hard to remember.

sunday was a nightmare. but i should back up. (make a screeching noise here kind of a cross between a car accident and film being violently rewound. there. now we can start.) two appointments ago, i left my neurologist with a handful of prescriptions, most of them refills of stuff i have already been on, but a few newbies he wanted me to try to help me with some new problems and some exacerbations of old stuff. as i left he said cheerfully, “make me proud!” and winked- very sports coach to star athlete and i ate it up. because i AM that star athlete! i AM that star patient! even though i always fail, even though my body and my brain NEVER respond like they’re supposed to, even though i come in with my own research and my own ideas, which most doctors hate and are threatened by, at my core, i do want to be that star patient- the one who the doctor loves and dotes on and gives extra time to and brags about to the other doctors. i want- oh you have no idea how much i want- to be that star patient. so when i left his office and he said that my eyes were glistening and i was like, “ok. i’ll try!!” and i really did.

i really did.

one of the medications had to be gradually increased. he told me to go up every week (hmmmmmmm- the PDR said to go up only every 2 weeks, but the patient leaflet did say every week, and so did he…) so i did. 100 mg, no biggie. 200 mg liking it but no real results. 300 mg. do the screech noise again, but this time it should sound like the needle scraping across a record really hard. like a car trying to avoid hitting a toddler. like your pain receptors being stretched past their limits of tolerance.

i thought maybe i just had a hard day. so i did 300 mg again. and the next day was worse.

but i was just at the doctor. and he was so nice. and he was really trying to help me. and i really don’t want to be a pain in the neck. what if he drops me and i have to start all over agin to find a new neurologist after all the hassle of finding him? especially when i feel so horrible?

by the weekend i could barely get out of bed. i was too cold to take off any clothes to get into a hot bath, but all the layers of clothes i was wearing made it even harder to move. i sat on the kitchen floor while one of my daughters rubbed my neck and tried not to cry. when i finally made it to bed i decided that i would stay there rather than go to the bathroom, because it hurt too much to move. the only thing that hurt more than my bones were my muscles and the only thing that hurt more than my muscles were my bones. i took a boat load of pain meds.

i couldn’t  lift a pot of water to bring it from the sink to the stove because it weighed 8,000 pounds. i tried to take some laundry downstairs but dropped the entire basket in a cascade of dirty laundry down the entire stairs. i just stood there and watched it, wondering how in the world i could grasp that many individual items to get them into the laundry room. i think *h came and saved me. i took more pain meds.

i wanted to spend some time with the chickens, but i couldn’t get outside, so i just sat at my window and watched them. i called a friend to ask if i could borrow some pain meds.

i checked the PDR and it said that one of the side effects of this medicine can be breakdown of muscles. you can get a blood test to verify it, but if you have extreme muscle pain and fatigue, that’s what’s happening. since waking up for half an hour meant that i had to go to bed for another 4-1/2, i thought that might just be accurate. even typing on the computer hurt my wrists and fingers and was so tiring i had to keep taking breaks. more pain meds.

found out that to get my scrip filled for the medical marijuana (which we are calling m&m’s -ugh, the apostrophe!- or medical mashed potatoes) i need to get a washington ID. tried that once but was at the wrong branch, where they only did other state business, and have to go to a different branch, so i still have my michigan ID- so i would take care of that, but oh- i hurt too much to drive right now… *%#@#*$^&%^)^

i have started weaning down from the horrible neuro med, and since it has a half life of 58 hours, most of it should be out of my system by thursday afternoon.

the pain has been gruesome the kind where you lay in bed going over the reason why your family would probably be better off without you. i think that’s it’s so easy to forget how vicious pain really is, and that’s a blessing, because otherwise we’d all be curled up in balls hiding under our covers. i don’t think human beings can withstand that intensity of pain for long periods of time and still maintain their humanity.  you just can’t manifest compassion or dignity when you are suffering so acutely and so severely.

i was thinking when i was laying there, and the time does funny things. it distorts, where an hour will go by in minutes, and i think you doze off without even realizing it- the effects of all the pain meds, no doubt- or the time stretches out endlessly, and gives you time to torment yourself in your thoughts too. i was thinking about metaphors for pain. and they are all true. and i couldn’t think of any new ones. and i was thinking about how people who have suffered before me have really been able to encapsulate the experience and i am jealous in a way that i couldn’t think of any new way to express what was happening to me.

it felt like my bones were swelling and pressing outward (still does, but thankfully not as bad). my muscles are heavy and hard and knotted and my joints are stiff and rough and like when you try to screw the wrong size fitting on a screw and it goes on but it won’t tighten and you have some contact but it won’t hold and get the job done so it is just there but it’s wobbly and uneven. but it hurts. like that but not.

and i wish i could be eloquent and poetic in ways that would make people go,”oh wow- so THAT”S what it’s like” and they could see it without being there. because i don’t want any of you ever to be here. but i want you to know. because i want to bear witness for everyone who can’t speak up. because i don’t just want to lay in bed and suffer and then feel better and function and then get sucked into life and then be busy doing so many things that i just forget.

and i want my kids to know when/if they read this blog that mommy isn’t just a big pile of lazy good-for-nothing who lets them down and dumps her work on them. who doesn’t take them places and do stuff with them. who stays in bed and sleeps too much and gives them too many jobs in the house and sucks at homeschooling and sucks at mothering and sucks at being a role model of a wife. and just sits and types her blog and then goes back to bed to rest and takes too much medication and reads too many medical books and why can’t you be normal like other mothers?

right now all i want to do is feel better. i want to take my kids all the places they want to go and i want to have energy and be able to push past the pain and not feel like i just got shot in every part of my body. i want to be able to take my daughter to the dentist at 2 and not have to start getting dressed at 1 because it hurts so much to move. i want to be able to go buy milk at the store that’s 1/4 mile away without having to decide if it’s too much for me to handle (it is. but maybe i can drive there and have my kids run in. did i mention that i suck as a parent?).  i want to go on a date with *h and not be so smashed with exhaustion by the time i get home that i am almost crawling into the house (did i mention that i suck as a wife too?).

by the way, i never use the word ‘suck’ in real life. i think it is totally unclassy and uncouth. i tell off my teenagers if they use it. just had to say that here for CYA purposes…

in any case, i should be grateful that the pain is letting up a bit, and i should be looking up to bigger and brighter things. but i don’t want to forget. because i think it’s important to remember.

does any of that make any sense?