Fighting against fowler's

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...

Ok guys so iv not done a posy in a while as you know I moved which really took it out of me I had infection after infection the  a chest infection the shingles it was never ending iv not been sleeping much at all so ov ended up on sleeping tablets which I really didn't want to happen but I really needed to sleep just a few hours Had loads of other things going on which I'm it ready to talk about yet in till I know what's going to happen I am going to start doing more posts soon once I'm more mental able to We are settling in very nice in to our new home and my furbabies love it so much it's so quiet and relaxing here and great views Also wandered if anyone is reading this blog and if it's worth keeping it going il decided if anyone comments as I don't know if it's doing any good  at all Il leave it there for now Xxxxxx

ok so this will be my last blog for a while for those of you that dont know im moving to a new flat which will be better for my health and as my fellow folwers girls know moving home with fowlers is not a easy thing to do. so people say to me dont you be doing to much and tiring your self out but there is no way i am sitting back and just letting my partner do all the work its not just me in this illness its my amazing other half just as much as me hes the one that has to come to the out of hours with me or sit in a and e for hours while i lay in a bed. he goes to all my doctor appointments with me my chemist know him just as much as they know me. so yes i understand people dont want me doing much but i cant just sit and watch my partner tire his self out to hes such an amazing guy he puts up with everything he says im a great girlfriend but honestly im not im in pain most days so cant do much at all but he puts up with it all and tells me he loves me every single day i really am b...

So once again I'm laid I'm bed unable to sleep due to pain and the nob head of neighbour below me banging doors and shouting to someone I have got a new flat just waiting to move in which I will be so glad about. Not been able to sleep is horrible is horrible you just go round and round in circles you ask for help they give you a leaflet about how to relax but when you have a 5mm tube Sticking out of you and pain it's not easy to relax. They say don't go on your phone or watch anything but if I lay in bed and do nothing I go crazy I hate silence so a few things I do are 1. Read 2. Do my blog 3.look at kitting patterns 4. Funny jokes and photos are always a great way to relax 5. Think of ideas to talk about on the blog 6. Do puzzles Everyone had there own thing to help them relax I tend to do a lot of thinking at night time and always come up with great craft ideas at night ( normally by morning I have forgot lol ) just wanted to let people know there not alone if...

Ok so I have been talking about what I want to talk about now I want to know if there are any subjects anyone else would like me to talk about not just people with fowlers but others who want to know what a certain part is like so please comment any subjects you would like me to cover All my love tia xxxx

So today I went out with a friend for breakfast which was a all you can eat and it was amazing we sat there drinking tea an coffee just having a really good chat which I really needed we talked about everything even helped me with some ideas with my blog then we went to home bargins as I am moving to want some nice new things for our new place she also helped me with wallpaper as I have never decorated in my life so I was very great full for this she is such and amazing women she's been there for me so much in the past 1 and a half its the small little things like going for coffee and have a good chat and that changes your whole mood and makes me feel so much better so I just wanted to let you know we do have good days they may not me all the time but when we do have them they are even more special Keep an eye out for the next entry xxxx

so us fowler's girls know all about antibiotics but i will quickly explain them to you so antibiotics are used to treat or prevent some types of bacterial infections they work by killing bacteria or preventing them from reproducing and spreading. since January 2016 i have had 43 lots of antibiotics i seem to have infection after infection which have a suprapubic catheter doesn't help as you risk for infection is higher with a catheter and then i have been having utis since being 3 years old so i I am very prone to infections 9 times out of 10 I leave my gp with a prescription for antibiotics every time   i go  and let's face it to many antibiotics really are not good for us they have horrible side effects yes we need to take them but many times iv been to the gp they have tested my pee and say I have a infection so give me antibiotics and then when I phone for my results it's clear so I ha taken a good few days of antibiotics for nothing thus has happened so many t...

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 g...

So going out for lunch is so easy for loads of people but people with chronic illness is so much hard work with getting ready making sure you have your medication for the pain and make sure you have everything you might need for your catheter for if it leaks which happens way to much and to find comfortable clothes that you won't feel to uncomfortable in and trousers you can have your leg bag on So I'm off for lunch Talk soon

Talking about uncomfortable things fightingagainstfowlers 28m ago So moat of us are scared to tell people how we really feel o know I am and with a chronic illness it’s even harder especially with such a degrading illness like fowlers syndrome we have no privacy or dignity with the hospital trips and district nurses but we can’t be afraid of what someone might think it’s our body our life we can do what we want and if people don’t like it then your better off without them Visit hello fightingagainstfowlers Aug 11, 2016 so this is my first post just want to say hello and introduce my self i am 23 called tia i live in glasgow moved here 6 years ago from sheffield my mum younger brother and two younger sisters and step dad are still in sheffield my dad has recently moved up to glasgow to be near me which helps so much with me been poorly. i love with my partner stephen and we have 2 cats cleo and miko stephen is my life line i would be buggered without hi...