THE TRUTH OF LIVING WITH A CATHETER ( part 2 )

so to carry on  from part one of the truth of living with a catheter.


INFECTIONS

any person can get a uti or a kidney infection but for someone with a long term catheter the infection rate dramatically rises and for someone like me who has had chronic infections from the age of 3 years old having a long term catheter makes things 10 times worse.

i am at my doctors pretty much at least once a week for antibiotics and then times i end up in hospital for iv antibiotics because my body cant fight the infections with oral antibiotics a lot of fowlers girl have had uro sepsis due to sever infections not clearing up.

some of us unlucky ones just like me are very rarely infection free in the past 6 months i have had 35 lots of antibiotics so thats a little about infections not to mention site infections in our skin around the stoma which is very painful and can turn nasty if not treated.site infections are very common with suprapubic catheters due to the location.

this is such a problem for me as i only have one kidney i had one removed in 2012 due to it stopping working so when i get infections they hit me hard and i get very very tired and most times feel very poorly and antibiotics on top of a nasty infection is not a good mix it really takes it out of you having one kidney and chronic infections.



BYPASSING AND LEAKING

some of us get something called bypassing urine some only get this with infections but some like me get a lot of bypassing and leakage the cause can be anything from a infection to we are just unlucky. some get small amounts
of bypassing urine and some  get a lot everyone is different but it sure is a pain in the arse especially been out and your in the middle of a shopping center and next thing you get a massive spasms and you try to get to the toilets while trying to stay stood up before your soaked in your own urine ( not a good fashion look )

its not a easy thing to deal with a lot of us carry spare clothing just in case.



SLEEPING

now sleeping for me is a massive issue due to pain from just having a tube going into your stomach and sometimes this can feel like a thousand knifes stabbing me in my bladder ( well for me anyway )

then there is been connected to a night bag some of us can just use a catheter valve but for me i have to use a bag which basically makes me feel like i am attached to a lead like an animal so that makes sleeping very uncomfortable not been able to just roll over fully to give your partner a hug its horrible and not sexy at all.

for me an average night is curled up in a lot of pain ( for me spasms are so much worse at night time ) and trying to get comfy till about 5 am till my body cant take no more and just shuts down then i struggle to get up in the morning ( no matter my sleep pattern i have tried everything ) even with sleeping tablets i cant sleep due to the pain sometimes i can be awake for 72 hours straight with sleeping tablets.most nights i get around 4 to 5 hours sleep at times i get so exhausted i cant talk right my balance goes i drop things.

i get so sleep deprived i get hysterical no matter what i do for my sleep pattern nothing works

SO PLEASE DONT SAY I NEED TO SLEEP EARLIER ITS THE PAIN THATS CAUSING THIS


EQUIPMENT

now i have a whole wardrobe in my bedroom just for catheter supplies having a suprapubic catheter takes a lot of medical supplies
such as.....

for the district nurses for when i have a catheter change


  • new catheter ( at least 2 spare )
  • syringes
  • needles
  • sterile water
  • dressings
  • numbing gel 
  • new leg bag 
  • notes


my supplies


  • nappy sacks for dressing changes
  • dressings
  • sterile water
  • leg and night bags
  • gauze
  • numbing gel 
  • gloves
  • saline & citric acid bladder washes
  • continence pads for bed
  • thermometer
  • urine sample bottles
  • cleaning wipes
  • skin protection spray
  • iodine dressings
  • alcohol  gel 
and probably more so you can imagine the cupboard is pretty full i then also have bags in my dads and best friends car with everything i might need if my catheter came out while out.


CLEANING ROUTINE

Now not everyone has the same routine when i get up i take off my dressing and always check my site i give it a good clean then i spray the site with a skin barrier spray to help stop my skin breaking down then i pop another dressing on. i do this in a morning and night at times a few times a day it varies day to day its very important to keep the site clean to prevent infections.


SOCIAL LIFE


iv never had loads of TRUE FRIENDS so i noticed even more how much my social life has disappeared due to my illness.

 I AM UNRELIABLE
MY BODY IS UNPREDICTABLE
I CAN NOT CONTROL MY BODY

i have lost so many friends because i am a let down one person who lives literally 5 minutes away from me is pretty much my best friend that no matter how poorly im feeling she is there for me even if we just go for a coffee ( or wool shopping ) or i go over to hers for a crochet night.

its safe to say fowlers syndrome has destroyed my life and social life its so hard to get not invited to something because you have to cancel often due to pain or been unwell. then people just forget about you WHICH IS HEARTBREAKING

so at times i feel so lonely and i have no friends so i am in the house a lot but one true friend i can always count on is tracy and her amazing little boy  shes always by my side to pick me up and help me through things. if we go over for a bbq she makes sure i am comfortable like the last time we had a bbq my feet and ankles were so swollen so she put my feet in cold water.

so even though i dont get out much and constantly let people down I DO NOT DO THIS FOR FUN I JUST PHYSICALLY CANT DUE TO PAIN AND FEELING UNWELL

i would love to go for a romantic meal with stephen ( my partner ) but the getting ready getting to the restaurant staying sat up and feeling so uncomfortable and in so much pain its making me feel sick.



PLEASE REMEMBER WE DO NOT DO THIS FOR FUN ITS BECAUSE WE PHYSICALLY CANT AND 9/10 WE FEEL SO BLOODY GUILTY IT EATS US UP FOR DAYS AND MAKES US FEEL A BIG MASSIVE LET DOWN


well there is the truth of living with a catheter so when you think having a catheter and staying home all the time is easy its not if yo have a friend with a chronic illness just remember a lot of illnesses are not visible


thanks for reading il be back soon

all my love
xxxxxx














































































































































































































































































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