HOW TO LOSE YOUR FRIENDS AND PEE YOURSELF
So this blog is about how to loose friends when you have a chronic illness.
to be honest before i got more ill i never really liked going out much i preferred to stay in with my knitting and watch some movies. on the rare days i do go out i do struggle and i push my self to keep going for a few reasons.
1. to get me out of the house so i don't go even more crazy
2. to see friends and some family
3. to create memories that i can think about on a bad day
a lot of people think i am lazy and that i just cant be bothered but this isnt true yes i dont go out much but this is due to a number of things like ( pain ) im not overreacting i am in about 90% of the time this is no joke my pain can varey from a mild ache to i cant get out of bed recently its been more of i cant get out of bed i try not to let pain stop me from doing things but its very hard with a suprapubic catheter the stoma is a few intches above the belly button and there is a thick tube that goes in to the stoma to get to the bladder and this tubes goes threw all your stomach muscles. imagine when you have a really bad cought and your muscles hurt from coughting well i have that pain all the time and on top of this i get bladder spasms this is where the bladder is trying to push the balloon out some women have siad this is more painful then child birth. and then there is pain from infections which i pretty much have one constantly. so you can see why we have a lot of pain and the pain from the site is the worst ever it feels like someone is stabbing you everytime you take a step. some times u just end up bent over double in pain. so thats the pain part covered.
next is (tiredness ) now this plays a big part in our life yes everyone gets tired but we get exhausted from been in pain it is so tiring putting up with pain all day and night and then trying to live a normal life which is pretty much impossible for us but we give it a big go some times we try to much. so as you can imagine with been up most of the night with pain and not sleeping in the day and with all our pain medications we do get very tired easy and after not sleeping for a few days we feel like we are going a little crazy i am lucky if i get 5 hours a night and i do not sleep in the day the only time i sleep in the day is when i am very ill. so even just getting out of bed is tiring and i am not making excuses for staying in bed all day for most of us this is the only place we can get a little bit comfortable so you can see why this stops us from going out much.
next is (anxiety) and once AGAIN this is another big issue in our lifes. for someone my age (23) and i know younger women with fowlers its a very embarresing subject for us to talk about i remeber when i starting doing intermittent catheters i really didnt want to go out anywhere and then when i have the urrethral catheter and a leg bag strapped to my leg id be so scared to go out incase i had a accident my urology nurse gave me a flip flo which is a vavle yoou put on the end of the catheter so you dont have to have a bag on you just opening it every few hours and drain it in to the toilet so i thought yes this will be brillant no more leg bag for me so off i went to the shop with my partner stood in the line for the till and bang my flip flo comes off and falls on to the floor of the shop luckily i had empyted my bladder just befor we left but this left me scared to go out incase it happened agaiin. so i pretty much stayed in the one day i decided to go to a knitting even as i love to knit i thought right i pop my leg bag on and il be fine now this event was in a church so im sat with friends and my knitting i was having a lovely time kitting and chatting away then all of a sudden my leg felt warm and i thought o shite i ran to the toilet and yes you guessed it my bag came off and i peed everywhere i was soacked and so embbarested so i popped the the bag back on and cleaned my self up as i always carry wipes and dressings with incase but i had another issue my leggins were drentched in pee i had no spare trouseres with me so i got some tissue and dabbed as much off as i could and sprayed my leggins with body spray to hide the pee small i was about 2 hours away from home so i had to spend the next few hours walking around in pee soacked leggins so not many people can say they have peeed themselves ina church.
i have had many many accidents to the point everytime my leg feels warm i panic or i panic if i am out for more then a few hours.
i try to make a joke of it and say watch out i like to pee my self
so you can imagine why we dont like to go out much and why this would make us loose friends becuase we either dont want to make plans or we make plans and have to cancel at the last minute due to been poorly as we can be fine one minute and be spetic from a infection an hour later.
so please if you have a friend with a chronic illness like fowlers syndrome please understand they are not doing it for the fun of it and they really do want to be able to gout with there friends
all my love tia xxxx
to be honest before i got more ill i never really liked going out much i preferred to stay in with my knitting and watch some movies. on the rare days i do go out i do struggle and i push my self to keep going for a few reasons.
1. to get me out of the house so i don't go even more crazy
2. to see friends and some family
3. to create memories that i can think about on a bad day
a lot of people think i am lazy and that i just cant be bothered but this isnt true yes i dont go out much but this is due to a number of things like ( pain ) im not overreacting i am in about 90% of the time this is no joke my pain can varey from a mild ache to i cant get out of bed recently its been more of i cant get out of bed i try not to let pain stop me from doing things but its very hard with a suprapubic catheter the stoma is a few intches above the belly button and there is a thick tube that goes in to the stoma to get to the bladder and this tubes goes threw all your stomach muscles. imagine when you have a really bad cought and your muscles hurt from coughting well i have that pain all the time and on top of this i get bladder spasms this is where the bladder is trying to push the balloon out some women have siad this is more painful then child birth. and then there is pain from infections which i pretty much have one constantly. so you can see why we have a lot of pain and the pain from the site is the worst ever it feels like someone is stabbing you everytime you take a step. some times u just end up bent over double in pain. so thats the pain part covered.
next is (tiredness ) now this plays a big part in our life yes everyone gets tired but we get exhausted from been in pain it is so tiring putting up with pain all day and night and then trying to live a normal life which is pretty much impossible for us but we give it a big go some times we try to much. so as you can imagine with been up most of the night with pain and not sleeping in the day and with all our pain medications we do get very tired easy and after not sleeping for a few days we feel like we are going a little crazy i am lucky if i get 5 hours a night and i do not sleep in the day the only time i sleep in the day is when i am very ill. so even just getting out of bed is tiring and i am not making excuses for staying in bed all day for most of us this is the only place we can get a little bit comfortable so you can see why this stops us from going out much.
next is (anxiety) and once AGAIN this is another big issue in our lifes. for someone my age (23) and i know younger women with fowlers its a very embarresing subject for us to talk about i remeber when i starting doing intermittent catheters i really didnt want to go out anywhere and then when i have the urrethral catheter and a leg bag strapped to my leg id be so scared to go out incase i had a accident my urology nurse gave me a flip flo which is a vavle yoou put on the end of the catheter so you dont have to have a bag on you just opening it every few hours and drain it in to the toilet so i thought yes this will be brillant no more leg bag for me so off i went to the shop with my partner stood in the line for the till and bang my flip flo comes off and falls on to the floor of the shop luckily i had empyted my bladder just befor we left but this left me scared to go out incase it happened agaiin. so i pretty much stayed in the one day i decided to go to a knitting even as i love to knit i thought right i pop my leg bag on and il be fine now this event was in a church so im sat with friends and my knitting i was having a lovely time kitting and chatting away then all of a sudden my leg felt warm and i thought o shite i ran to the toilet and yes you guessed it my bag came off and i peed everywhere i was soacked and so embbarested so i popped the the bag back on and cleaned my self up as i always carry wipes and dressings with incase but i had another issue my leggins were drentched in pee i had no spare trouseres with me so i got some tissue and dabbed as much off as i could and sprayed my leggins with body spray to hide the pee small i was about 2 hours away from home so i had to spend the next few hours walking around in pee soacked leggins so not many people can say they have peeed themselves ina church.
i have had many many accidents to the point everytime my leg feels warm i panic or i panic if i am out for more then a few hours.
i try to make a joke of it and say watch out i like to pee my self
so you can imagine why we dont like to go out much and why this would make us loose friends becuase we either dont want to make plans or we make plans and have to cancel at the last minute due to been poorly as we can be fine one minute and be spetic from a infection an hour later.
so please if you have a friend with a chronic illness like fowlers syndrome please understand they are not doing it for the fun of it and they really do want to be able to gout with there friends
all my love tia xxxx
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