Fighting against fowler's

hi guys so i haven't siad a word since my sns trail so on the 18th of January i had my sacral nerve stimulation device fitted outside of my body i have photos which will be added it was a very long day with a 5am start then traveling across Glasgow i had sedation in theater and i am not going to lie i cried the whole procedure it was awful but i got through it i had some sensation in my lower back kind of like a tapping sensation around the tail bone area nothing to painful but a very sore and stiff back from lots of needle sticks trying to get the wires is so i was sent home to let the wires do there work herre are some photos from the day on the 25th of january my urology nurse phoned who deals with the sns wires like the remote and wires ad battery we had a talk and after no passing urine and no sensation in my bladder i was told the trial had failed im not going to lie my heart broke it hit me like a brick wall i was out in town with a friend at a classic car show and ...

so we have all been there waiting and waiting for a hospital appointment to come through for treatment meIi feel like im stalking the postman every time something gets put through the letter box run to the door but then when it donst come we start to think it will never come and it will never happen. than you get a phone call asking if you can come in the net day for the treatment and bang it hits us like a brick wall we dont know what to feel. we want to cry, scream, laught and hide and then we think this could be the best thing ever and pray this is the new start you have been hoping for. So tomorrow I am going in for my sns trail ( sacral nerve stimulation ) which will hopefully make me pee again all on my own I am not going to lie I am terrified mainly about it not working but I'm hopeful  I will be having thin wires placed into my back near my tailbone which will be connected to an external battery for 2 weeks and this will send small simulatio...

So most of us love Christmas and the build up to it we look forward to spending time with family creating memories presents the food and seeing our family just smile. But been chronically ill at Christmas we dread chrostmas day we worry so much that we will let people down instead of looking forward to all the things above we dead and pray that we have the strength to get out of bed on Christmas day we pray we won't be in to much to enjoy our self's and spend time with family and friends. And the one thing we pray most for is not to end up in hospital or bed bound yes it's only one day but it takes so much strength and energy to just get up and get ready I only went to the pub for Christmas dinner and I was exhausted from it from the pain the sitting yes it was worth it but I was paying for it. We put a smile on our faces and day we are fine because we don't want to ruin our family's day we want them to be happy. We just want to feel normal and enjoy this on...

So there isn't long till I fond out if I need a hysterectomy and to be honest I'm not feeling sny better about it at the moment I'm just going to go in woth a open mind and see what is siad all I know is its going to be a extremely difficult day and with this time of year it really dosnt make it any easier harder if anything everyone getting ready for christmas with their family and children but it's just ment to be a suppose I will keep you all up to date at the moment I'm suffering from a God awful  uti so pleof rest for me 

This really has taken me a lot of guts to post this so please share as much as possible to tell everyone about this horrible condition and no matter what age you are you can have poor health So I want to tell you a bit more about me and my life fowler’s syndrome is just a part of what else is going on in my life right now. I have always had problems with my periods since I started them with heavy bleeding and horrible pain which at one point I would have to be admitted to hospital for pain relief every month. It came to the point where I had to have injections that induce a fake menopause to stop the bleeding and pain and this did work for a while but the side effects of the injections were horrible hot flushes , mood swings and just feeling awful and not like a women at all. The  in 2015 I started the injections again and this time I just kept bleeding so my gynaecologist decided to do exploratory surgery to see what was going on and to rule out endometriosis and to do a t...

im going to tell you about a good day then a bad day you will be able to tell they are very differnt.   a good day with fowlers  I can get up before 11am  i can get dressed i can change my dressing and clean my site on my own i can do things in my house  i can cook meals i can change a bad  i can leave the house i only have to take a few painkillers i can get in the shower on my own i can go for a walk i can spend a few hours out of the house i can go for lunch with a friend  i can feel like a girlfriend  i  can get comfy in bed and sleep i feel pretty  i feel mentally normal  a bad day with fowlers i struggle to get up before 11 am i dont get out of my pjs i need help changing my dressing and cleaning the site i struggle to do more then 2 things in the house i cant get out of bed i cant get off the sofa i dont leave the house i am constantly taking medication i end up in hospital i need help getting ...

So like a lot of people with fowlers I am on lots of medication I have a clothes draw full off the stuff. A lot of people go oh just go to the doctor and get some antibiotics then you will be all better but believe it or not most of my medications make me feel so poorly with side effects like neasua , vomiting , dry mouth, constipation and insomnia and that's just to me ton the nicer side effects. Being on medication won't make us better over night and it may never make us better but it can help us feel more comfortable or stop us from dying and I'm not being over dramatic a few months ago I had a usual uti and over 3 or 4 days that turned into a kidney infection which then lead to sepsis I had no idea I had sepsis till I got to the hospital and was nearly admitted to hdu with a stupidly hight heart rate I got pumped full of medication through a iv and it did get very scary at one point it was messing with my blood pressure I kept vomiting I felt like death warmed up and...