why am i waiting

so a lot has happened since the last post I have been in a very dark place and I'm not going to lie I feel like I'm hitting rock bottom so here is whats gone on.


SATURDAY 7TH APRIL 2018

I woke up about 9am with such awful stomach pains in my bladder I looked at my night bag and was hardly anything in it. My heart felt like it skipped a beat because I knew my catheter was blocked so I tried to flush it several times and nothing moved so we got the nurses out at this point my anxiety is reaching breakpoint I panic even scheduled changes because I knew how much it will hurt the nurses had me on my back flat on my side and stood up but still wouldn't come out the pain just from the nurses pulling was so bad I was nearly sick a few times. Anyway, the nurses had to stop because of the pain and they didn't want to keep pulling without better pain relief I wanted to knock my self out at this point so they sent me to A and E and now I'm freaking big time having multiple panic attacks and the pain was out of this world

I wasn't waiting long before I saw the doctor but it felt like a lifetime bare in mind my bladder is killing me so the doctor comes in and asks some questions puts a line in and gives me IV MORPHINE he also says he will give me gas and air to change the catheter and am terrified I'm begging Stephen to take me home and to make it stop so as the doctor said " WE WILL DOPE YOU UP ON THE GAS AND AIR BEFORE PULLING" and now I just feel like im flying but still in agony and hyperventalating .

So he starts pulling and I'm in such a state I cant talk Stephen had to take over for me he was absolutely amazing was on 10mg iv morphine and a shite load of gas and air and I was still screaming. Next, the A and E doctor cut the balloon port off the catheter to see if any water was stuck inside now I'm begging him to stop the pain was so bad I wanted to die he stopped and said he will need to get urology down I'm worrying so much that they will keep me in. The doctor left the gas and air with me so I was more comfortable but I got the giggles big time but I was crying too as the laughing was so painful I also turned and said to Stephen my feet look like unicorns and we should go fly ha ha ha so Stephen decided to bloody film me.

https://www.youtube.com/watch?v=ptkqfC9wwIY
https://www.youtube.com/watch?v=iDYhzs_sqhc

the on call urologist came she was lovely although any time she mentioned urethral catheter I would have a huge panic attack same as if sedation or general was mentionedi was panicking so much I could breath i wanted to die i didnt want to feel the pain I was about to feel I felt like I was losing it I grabbed stephens arm gas and air in the othere hand taking deep breaths to keep my stomach muscles relaxed the worst thing you can do is tense up although is not easy to relax when your going to be in a world of pain.

She grabbed the catheter right at my stomach as close asa she could and began to pull and I really thought I was going to pass out from the pain it was so stuck stephen siad he could see how much it was streaching from her pulling it took a bit but it eventually popped out sweet lord the pain ripped through me I wanted this to end so badily the catheter was just covered in tissue the urologist was shocked how stuck it was in 4 weeks I got home that afternoon laid there praying my specialist could help me as I cant d this no more


MONDAY 9TH APRIL 2018

Still very sore from the catheter change but I saw my urologist and here is whats happening

• I AM ON THE LIST FOR THE MITROFANOFF NOW.
• I NEED TO BE 70KGS SO I NEED TO lose ANOTHER 16KGS.
• I CANT HAVE IT UNTIL I HAVE HAD ANOTHER SURGERY NON BLADDER RELATED.
• IT WILL BE A VERY LONG WAIT.
• THERE ARE NO GUARANTEES.
• JUST WAIT NOW THE WORST PART IS HE CANT DO ANYTHING TO HELP IN THE MEANTIME
• 
  

This messed my head up badly I felt numb, sad, angry, disappointed a big failure I felt I have let everyone down I'm still a mess.I don't feel strong enough to keep doing this every day my mental state is a mess I'm not ashamed of it my GP told me to do whatever I can to distract my self so loads of crochet and colouring for me do love new colouring books so that's what happened head still isn't right and still struggling with life.there is so much more going on in my life theat most people dont knw about because people say im doing the wrong thing or telling me im stupid for doing it I need support not to be jugded I feel so bloody alone and I hate this feeling I just dont care anymore.

BUT I WILL KEEP FIGHTING


A MESSAGE FROM STEPHEN  

AS TIAS PARTNER I DO THE BEST I CAN TO HELP HER WITH HER ILLNESS AND SUPPORT HER THROUGH EVERYTHING. HER RECENT UROLOGY APPOINTMENT WAS VERY DIFFICULT. IT WAS GOOD THAT SHE HAS BEEN ADDED TO THE WAITING LIST BUT TO SEE HOW UPSET SHE WAS ABOUT HAVING TO LOOSE MORE WEIGHT AND BEEN TOLD THERE IS NOTHING ELSE THEY CAN DO FOR HER BROKE MY HEART, ESPECIALLY AFTER HOW BAD HER LAST CATHETER CHANGE WAS.


I WISH THERE WAS MORE I COULD DO TO HELP HER AND WISH SHE DIDNT HAVE TO GO THROUGH ALL THIS PAIN BUT MOST OF ALL I WISH TIA COULD SEE HOW STRONG SHE IS AND BELIEVE IN HER SELF THE WAY I DO. TIA IS SUCH A KIND, LOVING AND CARING WOMEN AND SHE DOSENT DESERVE ANY OF THE HORRIBLE THINGS SHE HAS TO GO THROUGH NO ONE DOES.

SO TO ANYONE READING THIS AND GOING THROUGH THE SAME THINGS ALL I CAN SAY IS YOURE STRONGER THEN YOU THINK AND TO KEEP FIGHTING.