March 29 Journal- Moon- A Peek into the daily life of Moon's World

Tried to write a daily journal but hurts more to holding a pen seems to be something I can only do in small spurts and cramps my hand/fingers,, leaving the writing nearly unreadable- so decided to keep one on computer- that way when the typing gets to be too much - I can hit save and finish it later..... and have it still be readable later.

I went to bed at 12:00 p.m. last night- felt so miserable...dizzy, headache, you name it - it hurt. 
Woke with a jolt at 4:00 a.m. with another pain streak.  How can that be with the amount of medicines I am on? 

It isn't time to take my medications yet.  But I can take one of the breakthrough pain ones so am doing that and writing this while it gets to work.  Hoping it will be enough to hold out until 8 a.m. when I can take the other meds to help with deeper pain.

I figure taking a shower may help soothe the muscles/bones so attempt to get morning shower done.  What a chore this has become.  Takes me so long to do things anymore. 

Using a cane - I hobble around getting belongings- underwear-camisole-shirt-pants-nylons- towels-washcloth-shampoo etc.  I place them in the wheelchair seat so I can roll it to be near the shower for easier access when I am done in shower.  I place the towels on top of it all.  The shower has a small step over ledge and I have to remember which foot to put up and over first due to left knee not bending.... actually I end up getting in backwards.  The ledge is not that big but seems huge to me when I'm trying to get in the shower.

I use a shower seat due to not being able to stand through the length a shower would take- I am able then to put legs up on the little ledge that is normally used for soap/shampoo etc.  I use a showerhead with a hose .  After getting situated and getting water to the correct temperature- gotta make sure its not too hot or too cold or more problems occur.  Its nearly impossible to wash my hair without wincing .  I couldn't even begin to guesstimate a length of time it takes me to shower.. and getting out - dried off and dressed is another whole experience in itself.  I reach to get the towel while on the shower seat and do most of my drying off while in the shower stall.  I can't place a towel around my hair -tuban fashion- as I used to- hurts too much to hold arms up that long so I just pat it as dry as I can.  Forget blowdryers- takes too much effort and am no longer able to hold any item the time it would take for it to be of use anymore anyhow.    After drying self as best as I can- I attempt to put my clothes on- which is a pain even though I choose clothing without buttons/snaps/zippers.  I get the camisole on then sitting on the shower seat yet- because the one knee doesnt bend properly I have to work my left foot through my underwear and then put the right leg in which of course is pretty lifeless so takes effort to get that leg in as well- same steps for nylons- only these take forever but are a must medically- it is getting to a point though that one day I will no longer be able to do those either.  I can't even describe the amount of effort and time it takes to get those buggars on.  They are support hose and trying to get them on two painful legs using fingers that tend to not bend the ways they need to bend in order to help pull them on and up is yet another huge part of my day.

When finally dressed- pull on shirt- pull on pants- its time to brush teeth.  Making my way over to the sink by using the wheelchair for balance - I turn the water on and try to get toothpaste on my toothbrush without getting frustrated enough to just say ' Forget it !'

Again- trying to hold something small in my hand - the toothbrush- and the toothpaste tube- my fingers are having a heck of a workout and creating nothing but pain for me.  The toothpaste tube has become one of my worst enemies.  I make  a mental note - like thats going to be of much use- with the fog that is in there , by the time I get to where my store list is- I most likely won't remember it anyhow.- but I make a mental note to write down - toothpaste in pllastic stand up bottle.  I work at getting toothpaste out of the tube and onto the toothbrush.... its almost impossible- ugh- its something so small yet causes me such big problems..  I even lay the toothbrush on the counter and try to lay the tube of toothpaste down so that I can maybe work some toothpaste out by using both hands - pushing on the tube to get some out... when even a mere amount is out- I go with it.  No sense of fighting with a toothpaste tube!  All that strain for just a little dab  - how irritating... if it weren't for hygiene and health- I'd be almost willing to pitch it in the trash and not bother with it anymore.

Before leaving the ladies room, I try to get all that needs done done- takes too much effort going back and forth to have to return for some little forgotten item.  At this point with wet hair, I just leave it that way to dry.  I have problems using the ( toilet ) as it seems someone adjusts it lower and lower each day.... How to get in the proper position with a knee that doesn't bend and a leg that takes brain power to make go the right way.  I end up finally getting there but geesh what a lot of work just to go to the bathroom.

Its going to be a scooter day it appears-or at least until the medications are able to make their way into my system at 8:00 a.m. - I crave a cup of coffee - so use the scooter to get out to the kitchen.  I use the cane to get to the scooter and have to get in it just right ... if I get in it on the wrong side, I end up having to get back up again and going to the other side.... knee doesnt bend-  I place the cane between my legs and hit the button to go out into the kitchen but can't reach the sink- ugh!  Another struggle to stand- get water- put the filter in the coffee pot- ever try to get those filters to seperate without finger trouble? ha... its triple the time trying with sore fingers- the scooter has a basket and I use a cup that has a lid on it so I don't spill it- if I am using the scooter  I put the cup in the basket and then head to wherever I am going- if I use cane - I don't spill it as easily - ok - some drips out - but only a small amoount ? by holding cane and trying to walk with a cup of coffee.

It still isn't time to take the pain meds and the breakthrough pain med is not really helping yet ... but I figure if I rest for a while that maybe the pain will lessen some.  I decide to read some e-mail ... I can never seem to get comfortable.... After about 15 minutes, I  have to get up and move a bit but cant stand for longer than a minute it seems before the pain worsens.. I sit back down for a bit and of course during sitting time- its  a matter of deciding if it feels any better with legs up on a chair or down- its something I just keep trying to get comfy and with them up on the chair it seems to help cut back on some of the swelling in my legs.

Soon it will be time to get Dakota who is 11 up so he can get ready for school.  I have to keep myself occupied so that he isn't late.  So I keep going through the above measures until I hear the alarm clock go off.

Finally- I managed to get through the time and get Dakota on the bus- I go through such a sad spell after I see him leave on Mondays- as there is an issue that has really wronged me but I basically have done all in my power to change and get no where.

I won't see him until Thursday night and only from the time school gets out until 8 p.m.  unless there is a half day of school- or no school- or he comes down with some type of problem such as a belly ache etc.

Stress really wears me out and makes me instant tired.... as if I could fall asleep at the snap of a finger....... the boys arguing does that to me as well but losing one child ( Kenny ) and then having to see Dakota forced to live with Ken when its definitely unjustifiable really wears me .  I have taken my medications now and will finish my coffee and go back to bed. 

My head hurts, my stomach is nauseaus and I just all around hurt and really want to just cry where no one can see me.... I hate me sometimes........ hate the fact that there are so many - I can'ts in my life now- but I try to keep my chin up and not focus on the what I can not do any more- even though it takes much energy from me. 

I am off to lay down now- am feeling worse by the second- Good night.

Never fails- the medications only seem to work for a small amount of time- I can finally get to sleep and end up shooting out of bed with sharp pains...... never know where the pain is going to be...... sometimes its legs- sometimes its arms- sometimes its colitis/ulcer- sometimes its severe headaches- just never know........ Doesn't really make a person  look forward to waking up....... And as for pain shooting you out of bed- talk about a complicated situation when you can't 'shoot' across the room to try to walk off leg pain or cramp because your legs won't allow you to stand for longer than a minute before it starts taking on severe pain as well.......... I almost feel like Im just doomed at this point.------- I reach around for the cane that I try to keep near me at all times- but that thing is a danger sometimes by itself- it has fallen on me- etc........ if it were to hit me- it could cause severe problems too- just like when that cell phone just barely knicked me.  Can't believe all these thoughts run through my mind and I feel like I'm definitely not going to make it to the restroom on time...... how can I?  The pain is too high.......  I am finally in standing position but know if the floor has anything on it , like a little wad of paper or something the cat or kitten has played with and I happen to step on it I will be thrown out of balance......... not liking hospital stays too much- I tend to be careful......... with the use of the cane I slide my shoes on......and begin to hobble to door- and then to the rest room............. and barely and I do mean barely get there in time.!

The amigo is in the hall so I decide to get on it and make it to the office door where I can take another breakthrough pain reliever and perhaps do some e-mail or a bit of web design to help ward of the pain level in my mind......... it doesnt work........... so I decide to chat with a few friends for a little bit, but its gotten to a point that I really can't last too long at that either....... I end up having to place legs/up down, stand- sit...... its so frustrating.......... I want to be able to sit and do a website all in one sitting and I just cant do it any more!  My fingers will ache and make it maddening to even try to linger at the desk too long......... 

I feel constantly tired- but can not sleep as much as I really need to.  I look at the clock and realize - I haven't eaten and feel I better do so- especially with all the medications in me...... I can't eat before noon- or I end up having an appointment with the toilet as my colitis and ulcer are not agreeable for me to handle food before then.  I get back on the scooter....... remembering to save time of standing/fussing by putting legs in the right way the first time ( rarely do I get it right the first time around )  ...... If John is home - he will cook something like sizzle steaks or hamburgers..... but when he isnt here - I end up going for something microwavable.

It is very hard for me now to grasp anything out of the freezer..........  I can barely handle my hand being in there......... its sooooooo cold........ I hurridly pick a t.v. dinner or budget gourmet and slap it on the counter - just barely missing the edge- encountnering yet another almost mishap....... had it fallen, it could have hit me and yet another disaster.... but I cant hold on to the frozen dinner long enough to not slap it on there as such as it is too cold and my fingers hurt from the way you have to hold it........  I work at the task that most people can do in five seconds of tearing off the box....... I can't guesstimate the amount of time it takes me to get the box off and then peel off the plastic.........  sometimes - I feel this isn't worth it and just leave it set there in frustration ...... and just go back to another room....... after I finally get it all off- I stick the dinner in the cart of the scooter if it will fit......... if it doesnt- then on my lap.......... I do not care for that idea too much.......  Thank God the microwave is just at a height i can push the button and throw it in and being digital there are really no buttons to push but using thumb I turn it on for approx 12 minutes.......  feeling like I finally did accomplish something so minor to others but major to me- I head back to the office hoping to get some more e-mail done as I wait for that t.v. dinner.........  I am feeln dosey from the medications I guess......... barely able to keep my eyes open...... my back is starting to hurt now too.....

I look around the office and see a pile of bills that need paid-  so many things that need done and I want to accomplish........ I used to write down a list of to do's and not stop until I had each thing crossed off...... there is no way to do that now...... none at all.........  I can not tell one minute from the next if I will have the energy or how severe the pain level will be to even try to accomplish all that needs to be done.

I have finally got most of my bills payable online so that when due I can just push a button and do it that way rather than try to grip a pen and write out a check....... but still- even though made somewhat easier, my eyelids get so heavy - depending on pain level and medication reaction that sometimes I get to the url and thats about it ......... I no longer have the power to do what I went to the url for.

The buzzer goes off on the microwave........ " oh yeah- my dinner......."-------- good thing it has a buzzer - or most likely I would forget I even had stuck it in there .  back on the scooter and out to the kitchn...... grab a pot holder out of the microwave and put the plastic container on it and pray while its either in the basket or on my lap that I will make it to the table without spilling it....  I sit at the kitchen table and look out the window - watching cars go by and missing the fact that I cant drive....... and also thinking about summer- hoping with the scooter- I will at least be able to get out there this summer for a small ride and get some fresh air...... 2 years of being in a house can get pretty drab!

Most times I can't finish the dinner - so I stick it in the refrigerator for later.  ( On the amigo - of course )  Tad bit complicated to get the fridge door open/shut while placing that in there..... I try to get what items I will need - diet coke etc and place them in the basket and head back to the office- still hoping to get through some e-mail or bills......... but the muscle pain and leg pain, heck lets just say all over body pain is too much to bear today and even with those medications..... I feel like I have a foggy head and the meds are just not touching the pain.  I give another shower another thought- so much work to do so though........ do I want to do all that for that again?  Most often not but I will anyhway with the hopes that it makes me feel some better.

Even sitting here - typing this, I almost can't keep at it...... I have moved up down- feet up down- stand , sit- nod off.......... etc........ I am even wondering If I will get this done and  I so badly want to - so its understandable what a day in the life of TJ is like.  Its pretty much depressing and makes tears stream down my face at times to think about all the stuff I used to do and no longer can do.  Only thing that keeps me going is thinking about how bad someone else is....... there are definitely people worse off - yet I've went from hyperactive and hardly ever being home to basically being in this house from day to day........ outings consisting of dr appointments and hearings......... I can't sweep- I cant vacuum- I cant do laundry- I cant do dishes....... I can't even make my own bed......

I give up- I am going to go lay down again.......... this is just too much to handle........ maybe if I lie down again....... I can write some more later. 

Funny, even laying down isn't comfortable.......  I can't stand a blanket or sheet over my leg that has hardly any feeling......... which makes no sense to me- so I cover up best I can and try to think of good things......... my boys- my parents- Jesus- my friends that I have made online....... how would anyone get through 2 years of this without these people in their life?  Just wish so badly I could do more- more for each and everyone of them.......

Sometimes the wheelchair seems the better way to go but it is such a pain on my arms........ I really think someone needs to perfect those things, talk about uncomfortable.

Great- Ive struggled to get into this bed and yet again, this time Im tired but can't sleep......... pain worsens if I lay here and can't sleep......... I gotta stop that........ I need to get back up and try to do something to keep my mind off it.

I hold back tears when I see the schoolbus go by and realize my baby wont be coming home tonight....... he hates it when I call him baby , but he is and always will be my baby.  He can be such a handful yet it is so wrong that he was forced to live with Ken and all the pain from that memory plus the fact that I am this ill and cant be with my own child?  Just makes me sick.......

I do not get into watching t.v. since my son passed away in 1997 - its just too hard for me- as he and I had many favorites and I just can't sit there and keep realizing he is not here- its too hard....... just too hard......... so I spend more time trying to make a memorial for him on the web................ I look at the basket of yarn and wish I could attempt crocheting again but things fly out of my fingers now as it is and I realize crocheting would only cause me tremendous pain.......

The room is starting to spin again and my eyes are droopy....... the pain just never stops ughhhhh so irritating........ I watch the clock to see when the next dose can go in and give me a bit more of a relief........  Once again I try to sit and do some e-mail and maybe get some sites started or at least one photo uploaded.......  I want so badly to spend time chatting with the wonderful friends I have made and also to put some time into the Online Ministry I built a while ago but  I can't...... only for small intervals.

Saddens me that it makes most worry- but I can't console anyone by being where I just cant be due to the pain level.........

I read through some of the EDS groups and don't feel so alone as there are others with the same symptoms and problems......... some can do more than I , some are about the same as I.  It does kinda bring some relief to mind to know that there are others you can confide in and they are going to know what you mean.

Supper time rolls around and I decide to try some soup- as my stomach doesnt feel it can handle much more than that..... I once again get on the scooter and head to the kitchen......... but guess what?  I can't open it !!!!! Grrrrrrrrrrrrrrrr- it makes me so angry.........  I holler up the steps for my 16 year old to come open the can so his mother can have some soup.  He , of course - opens it in a flash and with no problems....and I stick it in a bowl that I can reach and just heat it up- its the type that you don't even need to add water to .

Try getting a bowl of soup to the table in a regular size bowl without spilling it on a scooter or even in a wheelchair or with a cane.......... nearly impossible.... so I use those bigger bowls.... like cool whip ones....... that way if it wants to splatter then so be it.......

The rest of the evening is spent pretty much like the morning- one thing I embarrassingly mention here- is using the restroom- I know it is not good for anyone to "hold" it in but when it hurts so much to get from the scooter-cane-wheelchair and onto a ' toilet'...... one tends to put that matter off as long as possible.........

My days are all like this......... and have been for 2 yrs or better now............ I had pains, leg cramps, spasms, bleeding, bruising easy as I grew up too but never did anyone diagnose it with anything and now it makes sense....... 

Each day is the same as I've stated- but there is usually a surprise or two- and those being-
looking down and seeing blood piles on the floor......... not really knowing where they came from.......... thinking they came from a cat - someone else getting hurt- and it isn't...... after checking the pets out- I find out the blood is coming from me. 

I sometimes feel I need to wrap myself up in a bubble......... some type of protective coating......... I am barely moving around due to pain yet somehow I get hurt each day.

I had planned to make this a 3 day journal but there is nothing I really can add here- everyday goes this way- with the exception of some new 'hurt'. and/or stress that makes my skin just bleed........

I hope this helps give insight in how a person with VEDS lives in Chronic pain........