Fighting against fowler's

hi everyone sorry been so long had lots on so here's whats happened in the past few months. so below is me and Jen another fowlers girl and we have a bit of a story for you and lots of exciting news  on Monday the 10th of July me and another amazing fowlers girl Jen went on STV2 LIVE AT FIVE show to talk about fowlers syndrome this was the very first-time fowlers was talked about on tv. that day was crazy full of emotions. it was the first time me and Jen met I felt so honored she asked me to go on with her even though didn't really know each other. we got on so well like we had known each other for years. we were both terrified about going on live tv but we just kept telling each other we are doing this for the Fowler's girls. Jen was absolutely amazing she said exactly what she wanted to say to get some awareness out. we had some amazing hours before the show it was just like talking to your sis...

So all of us fowlers girls have a big list of things that are different now we are chronically ill this list is some of mine and other fowlers girls input to so here we go. you can say and spell medical words and medication. you know what happens in most medical procedures. you know whats wrong before the doctors do. the GP surgery staff know your voice on the phone and check you in as soon as you walk in without saying anything. the GPS phone number is in your favorites in your contacts the pharmacist talks to you like a friend. A & E staff and paramedics remember you and your problems. people come to you for medical and medication advice.  you have medication and medical equipment all around your home and friends and family's home. most of your true friends have the same or similar conditions  you know the names of the ward staff and know about their family you know what hospital food to stay aw...

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...

so living with a suprapubic catheter isn't as easy and simple as you think. yes, it is basically saving our lives but sadly it comes with its own problems and for a lot of us fowlers girls it effects our daily life. it stops us doing the things we love like going for a walk, going out with a friend or simply just getting up and getting dressed. so I'm going to tell you some of the problems you have to deal with when you have a suprapubic catheter. CATHETER CHANGES Catheter changes for a few are pain-free but for unlucky ones like me, they are extremely painful. some of us have to have them changed under general anesthetic/sedation and gas and air for me I have to have a high dose of diazepam and lots of morphine before mine. the catheters can sometimes get stuck like mine and they basically need to be yanked out and I'm gonna say this really ***** hurts and leaves me stuck in bed for hours to days the changes also set the bladder into spasms we often get bladder ...

so iv been doing this blog for a while now and it came to me i actually havnt explained what fowlers syndrome is so in this blog i will do my best to tell you. fowlers syndrome was first recognized by professor clare fowlers in 1985 until 1985 women in urinary retention was just thought to be hysterical . so fowlers syndrome effects women in their 20s and 30s usually. who infrequently  pass urine with an intermittent stream or for some like me full urinary retention. normally when your bladder starts getting full you get the sensation to go to the toilet but a women with fowlers syndrome have little to no sensation of a full bladder and for me its no sensation in my blaader at all i havnt passed a drop in over 2 years.                                            ...

Waiting for your appointments to come through the letter box and it's effects on your mental health. When you have ran out of non drastic options and it's now left to the BIG SCARY LIFE ALTERING OPTIONS you pray each day you will get a letter from the hospital asking you to come see a consultant but as each day passes and nothing comes it really effects your mental health especially when your in so much pain your bed bound most days you start to think will it ever happen and will you ever get rid of the pain will things ever get better. You get so depressed and numb with it and no one will or can help you. You want to give up so badly and you have no idea how you can carry on because this illnesses had destroyed your life you have lost your friends because you just mess everything up you can't do what you dreamed of doing with your life your stuck in one place just waiting and trying to get through a day and you just feel like you have lost everyone and everything. ...

So with any chronic illness we all suffer with depression at some point Me I have suffered since I was about 14 I'm now 24 and my depression goes up and down with all the pain and not sleeping and medication there is no surprise you get depression but we have to think of good things and things that make us happy . This is what makes me happy  1. Having cuddles with Stephen 2. Seeing my friends Tracy and aiden  3. Having cuddles with my babies ( my cats)  4. Going for a drive with my dad and Stephen 5. Doing my hobbies ( crochet / knitting / colouring / scrapbooking and many more ) I hide my depression because I find it hard to talk about I find it hard to tell someone how I'm feeling and recently I did a very big thing for me I talked to my gp about it I am now waiting for therapy which I am terrified about but I need to do it to help me cope better this is very hard for me to openly tell people but in doing it.  Depression is nothing to be ashamed ...

hiya everyone so I want to try and explain the type of pain and how much pain I actually have which is very hard for me because I hide my pain very well and especially from other people so here goes. this is hard because the pain goes from one kind to another in a matter of seconds I wake up whenever due to not sleeping at night due to pain so when I eventually wake up the first thing I do is reach for my pain meds. if I decide to get out of bed which the past month iv spent most days in bed as I am more comfortable in bed I  don't lay in bed and sleep which people do think I sleep all day ( I WISH ) I lay on top of the bed with a blanket and attempt to get comfy and I continue to take meds all day the last few weeks the pain has increased a lot on a daily basis i take 30/500 co-codamol 900mg gabapentin 10mg oramorph and sometimes diazepam and some days all that doesn't even take the edge off the pain that's why I end up laid on the bed with my ...

So it's been a while since my last post I have had so much happen on the 15th March 2017 I had my second sacral nerve stimulation trail which was a awful experience the anestatis decided to give me hardly any sedation so I felt and was aware of every thing it was extremely painful they had to give me gas and air in theater but didn't work and because of all this they could only get 1 wire I'm my back is extremely sore and brused I go back on the 3rd of April to get it taken out urology nurse has siad it's nit looking to good. 17th March I saw my other urologist to see if they can do anything about my infections and other possibilities if this sns dosnt work he basically siad nothing will stop the infections and if the sns dosnt work it's a catheter for life this didn't go down to well it's really hit me heard there is no way I can spend the rest if my life with a suprapubic catheter he also siad I should talk to my other urologist about a urostomy ...

So I want to tell you about a very special friend of mine who has been by my side all th way So me and tracy met on a support group for another illness we talked a lot on Facebook then once I was in hospital and she came to visit me this was the first time we met and we have literally been inseparable since she's been there when I'm sad and when I'm happy she's took me to the hospital and doctors she's been there after I had surgery. She's picked me up when I'm down and made me stronger we go out a lot she always makes sure I'm ok and not struggling . It is so important to have a friend like this when you have a illness like mine that understands exactly what your going through we have had so many laughs and so many days out with her amazing little boy who is just like is mummy he always makes sure I'm ok tell first time we met was in hospital her little boy sat on the end of my bed and rubbed my feet first time meeting and now we are also ...

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...