So basically i play crazy online. i like to type and do it a lot. its easier for me to type my thoughts and feelings out then to talk out loud about them. i hate talking. life hasnt been easy for me. crazy childhood, abusive marriage, eating disorders, and the worst of all, the death of my child. Jack was my reason for living and im kind of floating around in space now. i also have MS-multiple sclerosis. which is a whole other kind of crazy to deal with. i swear a lot and i ramble. so if you are brave enough to read or follow be prepared for both.
rock bottom. i hit it. the drs and my parents were waiting for it. so was i in a way but i thought i could fight it. thats why it took so long for it to happen. i havent had a true meltdown since jack died. like flat out lose your shit meltdown. i got through christmas ok, was sad but i handled it. something snapped in me january 1st. i got super tired and sad and emotional.
i literally slept january away. like i was sleeping 20 hours a day. some cause i was really that tired, some was thanks to pills. i wont deny that. ive probably taken too many pills the past 5 weeks. see, when i sleep i dream of jack. and i would get so sad and emotional when i would wake up cause he wasnt here. i was doing anything i could to sleep. to be with him, to find him, to just look at him alive again.
if i wasnt sleeping, i was crying. the tears just wouldnt stop. as soon as i would wake up they would start till i fell back asleep again. when i was awake id over eat and deal with my bulimia. ive managed to put on 10 lbs in 5 weeks. 10 lbs i didnt need to gain. my legs got deconditioned and ive had a hard time walking cause i was off them for so long. my whole body aches from being in bed. day light hurts my eyes cause ive been in the dark for the most part. i kept my blinds drawn and all my lights off. i rarely turned my computer on. i wasnt even checking facebook.
ive managed to get to my drs appointments. it was such a struggle and im pretty sure they wanted to commit me. they changed some medicine and took away some. i see two therapists in addition to 2 ms doctors. they all tried to talk me down off the ledge. we’ve finally come up with a game plan to get me out of bed and back into the world. i have to reset my bodys time so it tells day from night. im restarting physical therapy again to help with my legs and hips. i have a detailed program im going to be working on at home which included a new diet and exercise program, cause seriously, and this no joke. its not me coming down on myself its just true fact. im so fat. its making things so difficult. i cant bend over, im not fitting in chairs, i barely fit behind my steering wheel. you know those pictures i post? yeah thats just my head and part of my upper body at an angle. theres no way i really look like that. but it makes me feel good that i can get a picture like that and lets face it no one wants an ugly profile picture.
i have a long ways to go. things just arent magically better cause im talking about it. bottom line is its up to me to DO what needs to be done. whether i can do it is to be seen. im gonna try. but if i cant, then ill just keep trying. unless youve lost a child, the pain is something you cant even imagine. i feel like my heart has been ripped out of my chest and i have a big gaping wound there that only i can see. it doesnt get better. it doesnt even get bearable. a part of you is gone forever. theres no replacing that part. and while you try to get by day by day, and you do hopefully, it still forever haunts you. in your dreams, in your quiet moments, when you see something that reminds you of them. that big gaping hole makes it hard to breathe. and sometimes the world goes dark for awhile.
has been a snooze fest…literally. ive been asleep more then ive been awake. i just cant shake this weight off my shoulders. i dont want to deal with anything. nothing. i havent read facebook in days or checked my phone. i tried looking at my phone yesterday and managed to answer a few texts but i quickly lost interest.
i have no interst in life. i dont care what day it is. what the weather is doing or the lastest gossip. today is the longest ive been up. my mom did her im really worried and gonna cry voice if you dont get up. so i got up and showered and ate a sandwich. she begged me not to go back to bed when i was done. so ive sat up and watched the seahawks game and tried to get interested in facebook.
ive just sat here spacing out. and really want to lay back down. but im forcing myself to stay up. i dont know what my problem is. i just feel so sad and so depressed and am so not looking foward to anything. i have no plans, no concerts to look forward to. im always alone. and let me tell you my company is lame. why shouldnt i sleep? i have nothing else to do.
the part of my brain that is reasonable realizes there is a problem. but the other part of my brain just doesnt care. im not hurting anyone by staying in bed. my house is clean, my laundry done.
the snow doesnt interest me. and i love the snow usually. i was fine last week its like when it hit midnight on the first boom it hit me. i thought i got through christmas ok. it was difficult as usual. but i made myself do stuff. i was social and did stuff with friends and families. i was ok talking about jack. now im just totally blah about everything.
with some good, must come some bad i guess. the shrinking of the lesion on my spine is incredible. they went in expecting to find more, but instead found one of them shrunk. my ms dr told me this is very rare. sure they’ll stay the same. but rarely do they get smaller. so its a win. shes not sure what may have made it shrink. but we’ll take it.
the not so good news is there looks to be about 5-7 lesions now and there are 3 grey spots that look like are forming new lesions. it could take years for them to develop or they could want to make their broadway debut next week. theres no way to tell.
thats the thing with ms. you cant predict it. one day you can be fine. the next day you cant walk or talk. then the next day you may be fine again. you might sleep for a week or you might get by on 2-3 hours of sleep a night for a week. i never know how words will come out of my mouth. or when ill forget everything. but remember weird facts about george washington. i might randomly fall over, or asleep for that matter.
there is a major issue with a new disorder i have developed. im going to start some meds and hopefully it gets it under control. its called trigeminal neuralgia. ill post the long medical version, then tell you how it really feels. lol
Trigeminal neuralgia (TN), also called tic douloureux, is a chronic pain condition that affects the trigeminal or 5th cranial nerve, one of the most widely distributed nerves in the head. The typical or “classic” form of the disorder (called “Type 1” or TN1) causes extreme, sporadic, sudden burning or shock-like facial pain that lasts anywhere from a few seconds to as long as two minutes per episode. These attacks can occur in quick succession, in volleys lasting as long as two hours. The “atypical” form of the disorder (called “Type 2” or TN2), is characterized by constant aching, burning, stabbing pain of somewhat lower intensity than Type 1. Both forms of pain may occur in the same person, sometimes at the same time. The intensity of pain can be physically and mentally incapacitating.
(i have both kinds)
The trigeminal nerve is one of 12 pairs of nerves that are attached to the brain. The nerve has three branches that conduct sensations from the upper, middle, and lower portions of the face, as well as the oral cavity, to the brain. The ophthalmic, or upper, branch supplies sensation to most of the scalp, forehead, and front of the head. The maxillary, or middle, branch stimulates the cheek, upper jaw, top lip, teeth and gums, and to the side of the nose. The mandibular, or lower, branch supplies nerves to the lower jaw, teeth and gums, and bottom lip. More than one nerve branch can be affected by the disorder.
now what it really feels like…it feels like my skin has been pulled back and every nerve is exposed and everything hurts. wind, water, pillows. it hurts to chew and i have brain freeze all day long. i cant sleep or eat well. i can feel my nerves pulsing. i want to claw my face off.
i just have to go with it. and the drs are satisfied that im doing the best i can with what im doing. i make it to my appointments and therapies. i drive to seattle sometimes 2 or 3 times a week. i take all my meds as needed and do everything they tell me to do. they are happy with my progress. my insurance not so much. theres more that can be done but they wont pay for more. so i have to just take what i can. i feel over all im handling it all well. yeah i appear to be crazy, but i only play crazy online. i actually have my shit together pretty good. unless its laundry. thats not happening. 😉
the last few sessions of ptsd therapy have been super bad. with this last one leaving me a sobbing, snotty mess. and me questioning whether im strong enough to do this. am i gonna end up in a straight jacket if i keep going?
this last week i had to write out the event. from start to finish. so from when jack entered the hospital to when he died. ive talked about it before and ive even written about it. its not something new. this time i had to put as much detail into sensory things as i could. sounds i heard, smells, the feel of the isolation gowns, how jacks body felt as he was dying. stuff ive kinda glossed over in my talking/writing about it.
then i had to read it out loud. that was the hard part. i was sobbing by the time i got to the end. some of these things i wrote ive never said out loud. i was reassured my reaction was normal and that the therapy was working. but now i had to rewrite it again with even more details. colors and more specific details. seriously, again? im not so sure i can do it again.
it took a lot of out of me. my appointment was monday. its now wednesday and ive been awake for 3 hours now, which is the longest ive been awake for since monday evening. ive been forcing myself to sleep. sometimes with the help of meds. it hasnt been restful sleep. lots of nightmares and weird dreams. i just dont want to deal with life right now. christmas stuff every where. i just want to escape from it all.
i guess one positive note is monday i was in a bad head space. i wanted to binge so bad. it was the strongest urge ive felt in a long time. i had to go into safeway so i was planning what i was going to buy to binge with. i got to the store and realized it wasnt going to help anything, so i didnt buy anything but pineapple. how i was able to stop im not sure. ive never been able to before.
im just completely thrown off. i need to get my shit together though cause the next few weeks im hella busy with christmas stuff and i have to put on my normal, im ok, not ready to lose my shit, face. which is getting harder and harder to find.
what is it about a simple christmas tree that manages to make me such a wreck? i tried last year to put it up and i took it down in 5 mins cause i wanted to set it on fire. and the mind set i was in its a miracle that didnt happen.
this year i felt the urge. i like my tree, its pretty. its white with white lights and i add pink lights to it and pink ornaments; i basically make it look like someone puked pepto on it. but i like it. pink is my color. for me to have any other color tree would just be weird at this point.
i got it out today and i had to get into the closet with all of jacks stuff to get the ornaments. it immediately made me sad. i dont open that closet very often cause i swear i can still smell him when i do. in fact i have a dresser in front of it so it cant really be opened. but if i was gonna do this tree thing i had to go in it.
i got the tree set up and the pink lights added to it. but i cried the whole time and my heart just feels so heavy. i dont want to set it on fire, but i dont think i want to do anymore to it. at least right now. baby steps right?
i feel like im betraying jack by putting it up. he loved christmas and that boy loved santa something fierce. and he LOVED sleeping under the christmas tree. it was so precious. he’d pull his blanket and pillow under it and just stare at the lights till he’d fall asleep.
but while i feel like im betraying him at the same time i wonder if i need to do this to deal better. it will be the 3rd christmas without him. since he passed just before christmas. i dont know what to do with life. with my life. it might seem so simple to others looking at it. just put the tree up. or just dont do it if it upsets you. its only a tree. but to me i feel the tree represents something bigger for me. and i have to find some way to handle this.
its been 2 years since jack passed away. some times it feels like it was 2 mins ago, sometimes it feels like it was 2 zillion years ago. i miss him so much, words cant describe how bad. i miss his laugh and smile. i miss his hugs and cuddles. i miss his messes and i miss his ornery attitude. i miss the jumping and stemming. i miss cooking and shopping for him. i miss making him brush his teeth. i miss getting him dressed and hunting for shoes that would fit him. i just miss being a mom. i miss being jacks mom, i dont want to be anyone else’s mom. im forever just jacks mom.
we put a lot into dates and anniversary’s. but today is no different then yesterday. the pain, sadness, anger, grief and depression is still just as much as it was. a date doesnt change that. its forever with me and while sometimes are worse then others, i never know when it will all come back. it can be something as simple as a word or smell. or i see something i would normally buy him. clothes he would wear or books he would like. it never leaves my mind and invades my sleep every night. i wont cry for a week, then i spend a week crying. or im super angry for a week, then im super sad for a week. it never ever leaves my thoughts. i feel like my heart is crushed and is just sitting in my body.
i know so many ppl thing i should be “over it” and get back to normal. but its just not that easy. nothing will be normal again. i dont even know what normal is. i spent 14 years taking care of a very sick child. i dont know what its like to go out, have adult time. im still uncertain the few times i go out to dinner or hang out with friends. i never know what to say and i feel like a burden, like ppl watch what they say around me and i make social situations uncomfortable. cause i do mention jack. if something comes up that applies to him ill say it. just cause hes physically gone doesnt mean hes gone from my thoughts. but i know im always the odd one out. i think thats why i dont do anything. i had so many offers and ppl wanted to be with me after he died and now i can go weeks without talking to anyone and months without doing anything. everyone seemed to disappear. it gets very lonely. after being so busy with jack, my life is very quiet now.
its a different world for me. i dont know how to navigate it. and some days i dont know if i want to try. but ive made it this far. and all i can do is take it day by day. but i really, really miss jack. with every breath i take i miss him.
what a week…seriously what a fuckin week. its a miracle i havent had a stroke or something. i got a text monday afternoon on my way home from seattle after my 2 appointments that my dad had fallen and hit his head and was in the emergency room and only my 17 year old sister was with him. i was still at least an hour and a half away at this point.
first lets remember im suffering from PTSD due to the death of my jack and being isolated in a hospital for so long.
anyways, i get there and try not to puke when i realize hes in a room jack had been in before. i made myself walk in. he was in a lot of pain. he had a massive concussion that much was obvious. and he was dizzy and couldnt walk. so they admitted him. figured it would be an over night thing but tuesday he took a bit of a turn for the worse. he was having seizure like activity and blood pressure problems in addition to still not being able to walk or stand up.
there was one moment when a code was called cause he was so out of it and shaking and stuff. all the trauma staff came in and was asking a million questions and asking my advice on what they should do. i stood there trying not to panic. i was thrown back into jacks hospital room and the same thing happening to him. all the smells, sounds and questions. i felt dizzy and i started to sweat. i kept telling myself over and over…this is a different hospital, this is a different room, this is dad, not jack. it was so overwhelming to me. it felt like i was free falling from a plane and my whole life was flashing before my eyes.
we all managed to get through it. how the hell i did i have no idea. hospitals are a real problem for me. all the beeping, the smells, the looks on ppls faces. even the hand sanitizer going off over and over again from ppl using it. ME using it to go in and out of the room. in my PTSD therapy the plan was to bring those sounds and smells to me when i was ready. so needless to say i jumped about 5 steps ahead in therapy without my therapist to help me. its been very hard on me. i just feel like i could lose my shit, start screaming and not stop. sometimes i just stand there and feel like im having an out of body experience.
my dad is going to be ok. hes still in the hospital. he really hit his head hard. hes super dizzy still and cant walk yet and is having some blood pressure problems. so hes probably gonna be there a few more days. and ill be there. cause really at this point if i was going to lose my shit i would have by now.
oh, and the 2nd anniversary of jacks death is tuesday the 17th……
i knew i didnt want to do this. i havent cried in awhile, idk why. i just stopped crying. but this week the water works have started again. i dont know if its this ptsd crap, halloween or the anniversary of his death, but i cant stop crying. every one is making me talk about it. every which way i turn i have to talk about my feelings and how i think i failed. my nightmares are even worse and i keep having flashbacks during the day. i space out and im back in that hospital room. ill lose minutes at a time. someone will be talking to me and i space out, not having any idea what the person said. i kinda feel like an asshole about that. they werent kidding when they said this would get worse before it got better.
the first session we just went over what we’re going to do over the next couple months. as of right now ill meet with the counselor every week in seattle. i had some paperwork to read through and an “assignment” which i couldnt remember what i was suppose to do. thats how scattered i am. so i just winged it. but turns out i did it right. i had to find my “stuck” points. what it is thats making me not able to cope properly. mine is, i didnt do enough to save jack. and i gave up too soon. it was hard writing that out on paper and seeing it, then having to read it out loud. those have mostly been inside thoughts. i rarely say them out loud.
the second session i had to talk in detail about our life together. and everything that led up to him dying and the time in the hospital. i was a sobbing mess by the time i got through it. but apparently i had the “proper” reaction. which she said means there’s hope. whatever that may mean. i talked about my regrets and how i feel i wasnt a good mom and could have done so many things differently. i just feel like a total failure.
my homework for this week is called an ABC worksheet. talking about beliefs and consequences of those beliefs. i guess thats what its about. im having a really hard time remembering anything. so ill probably just wing it again. cause really there is no wrong way to do this. at least im trying is how i look at it.
Post-traumatic stress disorder (PTSD) is a mental health condition that’s triggered by a terrifying event — either experiencing it or witnessing it. Symptoms may include flashbacks, nightmares and severe anxiety, as well as uncontrollable thoughts about the event.
Many people who go through traumatic events have difficulty adjusting and coping for a while, but they don’t have PTSD — with time and good self-care, they usually get better. But if the symptoms get worse or last for months or even years and interfere with your functioning, you may have PTSD.
but shawna, you havent been in a war, or a terrorist attack, or something similar. how can they say you have PTSD? no i havent been through those things. but i was locked in a hospital room for 7 weeks and watched my son slowly die before my eyes and wasnt able to do anything. all i heard for 7 weeks were beeps from machines. all i saw were nurses, drs and janitors. as i sat in this room i could hear other children crying, i could see them walk past the room with their little iv’s and shaved heads. id see life flight landing with another sick child. i had long deep discussions with drs that used big words and scary phrases. i saw tubes being put in my son, iv’s, picc lines, cathitors, needles and meds. the whole time with no results, he wasted away to 97 lbs before he passed, he was 6’5….. just imagine that.
i can talk about these things, but i havent dealt with them. i know this. but i dont know where to start. i have so many regrets and i wish i would have done things differently. im scared to go deeper, cause im not sure i can handle it. i just start trying and the panic attack starts. but they say i need to. that this wont be easy, that it will be harder before it gets better. but what if it doesnt get better? and more importantly, do i want it to get better? is this my punishment for not doing things better? for giving up? maybe im supposed to feel this way.
my nightmares are severe. i barely sleep an hour at a time before i wake from some twisted nightmare. they are so graphic, so horrific, i cant even talk about them. and they are only getting worse. at the same time all i want to do is sleep cause i do see jack in my dreams. sometimes he talks to me. other times its the hospital all over again just in different scenarios. i can do the guided imaginary before i go to sleep. listen to soothing sounds, think of a safe place, it doesnt matter. the dreams are still there.
i hear something beeping and it makes me anxious. i watch a tv show with hospital monitors and i float right back to the hospital room and im standing there in front of the monitors again begging them to improve. every hospital and drs office i walk into now cause of my MS brings me back to that room. i smell soap and it reminds me of the janitors coming in to clean. i fight off these feelings every day. cause as soon as i start to go back, i start to freak out. i cant breathe and my mind starts screaming “you didnt do enough” “you gave up too soon” “how could you let him die?”
yes im in therapy. i see 3 therapists actually. not one of them does a damn bit of good. one of the therapists is now going to focus solely on the PTSD from jacks death. its going to get brutal. ive already got one “assignment” and thats to write out what happened. and my feelings about it. every time i pick up this piece of paper to start i get light headed and feel sick. i dont see how this is going to work. and i dont know what the outcome is supposed to be. ill never be ok with what happened. they even said that. so whats the point?
this first week i have to write down why i think the ‘event’ happened.- this is what i wrote.
-i think jack died because i didnt do enough. i didnt get a 2nd opinion, i didnt ask more questions. i put my blind faith in the drs. i should have been proactive with the meds i was suppose to give at home. i should have been more forceful about giving them. i should have waited longer before agreeing to end it. i just should have fought harder.-
now you see what im working with here.
halloween is bitter sweet for me now. this year im handling it much better then i did last year. last year i cried all day and drug myself to sleep. this year while it stings i havent completely lost it. ive even made plans. ive handled going into the stores and seeing all the stuff and i can look at other ppls pictures without sobbing.
jack loved halloween. it was by far his favorite day of the year. he’d get happy about his birthday, but halloween had nothing on it. he’d even say trick or treat. for the month leading up to halloween our house would be nothing but halloween. decorations, candy, book, movies. we’d make cookies. it all focused around halloween. it just made him so happy i wished halloween was year round. he was everything from elmo to elvis. he was superman like 3 times cause he loved him so much. but batman was in there, so was jack sparrow, he was a taco once. spongebob and tigger. i still have almost all his costumes.
even while jack was in the hospital that last time we celebrated halloween. i put up decorations around his bed, got him a bucket full of stuff he could stem with that was halloween related. on halloween he had to have some tests done and he wanted to wear his superman cape. so down the halls jack rolled in his superman cape not giving a flying fuck who saw him. it was like its halloween bitches!! he wore the cape all day long. he knew what day it was.
this year ive been trying to focus on the good memories and times i had with him. it seems to be helping….that or im so drugged im numb. whatever works, we’ll go with it. halloween just wont ever be the same for me.