Stigma

It's been so long, but I'm back!

I've been massively busy with university work lately and should actually be essay writing now. However, a couple of things have happened lately that have got me to thinking.
Number 1: the stigma. I was out with a couple of friends when I started to tell them about my OAB, I didn't go into massive amounts of detail but got greeted with "TMI, too much information." If I had another condition that affected me every day then I'd be able to talk about it. My friend has eczema, she's allowed to discuss that freely. Why can't I talk about this if I want to? It makes me feel better to tell people, it helps me to relax and then I'm not worried.
Somehow we need to stop this stigma. it's the bladder, everyone has one, it's a muscle and when it's overacting it's a muscle spasm. If OAB isn't allowed to be discussed, should we all zip it when we get cramp? When you think about it, it is ridiculous.

Today I saw an article on the Independent online (http://blogs.independent.co.uk/2013/03/13/living-with-an-overactive-bladder-i-was-feeling-so-degraded-and-embarrassed/) I read the article and then read some of the comments. Some were so ignorant. One person has written this:
"Stay away from GPs and urologists. Just use pads and relax. Your condition is very common in both men and women. It's more pronounced in cold weather or if you have to be outside in the cold for long periods. It's perfectly natural. You are not ill and should not be seeking a "cure".

"Just use pads and relax" This individual is clearly completely ignorant to the effect on a persons confidence and sense of pride. "You are not ill" another good one. No, we're not ill in a life threatening way. However when the quality of your life is this severely affected we should be seeking a cure. We deserve a cure. I sincerely hope that this person finds themselves in a very public place and suddenly, without warning pees themselves. Then they will have a right to comment. I didn't respond to them on the website, because I don't think they're worth talking to, but I'll happily discuss it on here where I feel I'm amongst people who know the realities.

One comment that I did respond to was from someone pointing out that the article was sponsored by Astellas. Personally I don't see the harm in that. Overactive bladder is being discussed on a big newspaper's website, they are telling the story of a man who goes through what so many of us go through. They are not plugging the brand particularly, and they're certainly not trying to sell it to the general population. It's encouraging people to go to the doctor if they feel like we do. It's important that people do that.

Aside from everything else, I am continuing to feel better. I find keeping positive the best way to go about it (as well as keep taking the pills). I think me and my bladder have a trust issue, but maybe we'll resolve that.

Sorry to moan to everyone (yet again) and would also love to know how others suffering feel about the comments left on this article. Let me know!

Light at the End of the Tunnel?

It's been such a long time since I last wrote anything on here. The reason being that I think I'm starting to feel a bit better. Over Christmas my Mum was very pleased that I was back to being my "cheeky old self" as I demanded to be waited on hand foot and finger (although sadly my demands were not met). I feel like I can do a bit more now. Yesterday I even invited myself along to a seaside trip my cousin is planning for the Summer, something that previously I would have avoided like the plague. I like the thought of going out a bit more and I am back to being a tea addict, something that I stopped drinking when I was ill and didn't know what was wrong with me.

I think all this has been down to me relaxing over Christmas and really just taking some time to not worry about anything. Although us students don't exactly have the toughest of lives, it can be a bit stressful when there's so much to do work wise on top of trying to cook and clean etc for the first time. I have also had my daily dosage of Vesicare increased. This, I think, has been the main difference. It's taken about four weeks to really kick in, but I feel like I'm starting, and I stress starting, to feel a bit more like me.

I've always been shy but nothing has ever knocked my confidence like developing an overactive bladder. I suppose in life we all have our challenges and I finally feel like I have a chance of winning this one. Dwell on the good days and put the bad ones behind you.

I hope that anyone reading this and really suffering can see some light at the end of the tunnel. Without sounding like an emotional wreck, there were days, not even that long ago, where I thought my whole life would be dark and miserable. I won't let it be.

Home Time

Tomorrow I'm going home from university for Christmas. Don't get me wrong, I love home, I love the fact that when I go home I get to see all my family and friends and I really do get treated like a queen. But it's the journey. Two and a bit hours in a car is like torture for anyone with an overactive bladder.

I used to love any kind of journey. I'm one of those people who does actually enjoy just sitting and looking out the window. I enjoy my own thoughts. I don't even really listen to my iPod or anything much. I used to happily sit and look out the window for hours, just watching the world go by. I'm just not easily bored. Then overactive bladder hit and instead of thinking "oooh that's a nice house, but a little close to the road" I think "need to pee, need to pee, need to pee" I have definitely mastered the al fresco wee. Stopping off at any field/lay-by is fine by me. I used to be a proud person, who would only pee in a nice clean loo, and now I find myself stopping off anywhere and everywhere.

I have to continually try to distract myself because I'm always so panicked that I believe I need to go even when I know that I can't possibly. I have discovered the powers of the puzzle book. Just doing something like that does at least distract me until I really do need to go.

I don't know what it is about cars/trains/buses, I think it might be the jolty motion, certainly the panic in cars is that there's no on board toilet to use and you have to rely on there being somewhere to stop off.

If only we could teleport, people with bladder problems would be the first to buy into teleportation. We could zap ourselves to free toilets, we could go wherever in the world and actually enjoy life without worrying. One day maybe, one day!

I would also like to take this opportunity to say thank you to anyone who has read any of my blogs. I've reached nearly 100 people now in just under two weeks. I think it's amazing that people even click on a link to read my warblings! I hope it helps everyone to see that there are people out there with the same fears, worries and bladder centric thoughts. It's become really clear to me that whilst this is not a normal thing for your body to do, it is so common! We are not alone here and we should not be embarrassed or try to hide it. It happens to young and old, professional people and those without jobs, it happens to men and women. We have to live with it and that is a pain, but we shouldn't suffer alone!

Hope everyone's Christmas shopping is going better than mine (I've bought my mum some socks and that's about it :s) All the best for the festive season!

15 Stone Babies

Just a short blog/rant today. Sometimes I see things on the TV or read things that, thinking as I do (with my bladder), just make me a little bit angry. Here is a prime example:

The other day Channel 4 aired a documentary called "15 Stone Babies". It follows the lives of adults who behave like babies, not because they are incapable of adult life pr they have anything physically wrong with them, but because they want to.

I have no problem with adults wearing baby grows, I mean they look pretty comfy, or acting like babies in any other way for that matter. I'm pretty laid back and I usually just let people live as they want to as it doesn't really affect me. I did however find myself having a major issue with the fact that these people, these, grown, healthy, adults wore nappies and purposefully weed and pooed themselves so that someone else could change them. These are people without any bladder or water works problems that choose to do that. I have to try so hard and I'm continually stressed out about the fact that I often feel that I may accidentally pee myself. Why do it on purpose? I honestly found myself offended by it.

They said it wasn't even a sexual thing, just catching up on their missed childhoods. Having had a very happy childhood I can't really comment on how it might make you behave in later life, but I know people who haven't had a great time and they manage to control themselves.

I don't even really know why it got to me so much. These are people who are obviously not enjoying a happy, healthy adult life, so why does it bother me so much? I think the bit that really got to me was when an adult baby was waiting for a delivery of nappies and he said that if they didn't come soon there would be lots of puddles on the floor. I just thought, no, you have the physical capability, go to the toilet.

It was because of this, and this alone, that I could have absolutely no sympathy for them. When there are loads of people out there with actual physical problems who have to really try to get any control at all, and these people would rather sit and poo in a cot instead of using their adult body as it should be used, I just couldn't have any kind of pity for them.

They seemed to switch it on and off as well. They all had jobs, one woman was a psychologist, who after a hard day of analysing people and trying to make them feel better, went home to her controlling boyfriend/ "Daddy" and pretended to be a six year old. Another hadn't even told his wife he was an adult baby, they'd been married for years and when he finally went to a "nursery" for adult babies, the "mummy" there couldn't believe that he'd changed his own nappies for so long. Of course he'd changed his own nappies, he's a grown man who makes a choice to pee himself. Why the hell would anyone else ever change his nappy?

What a bizarre world we live in.

Acceptance

I was recently in the tricky situation of a job interview. Anyone with an overactive bladder will understand why this is tricky. How long will it last? Will they mind if I have to leave? What do I say when I have to go?

The job I was applying for was a Christmas temp job, six hours a week at the weekends. I'd already filled in a form online so I thought they'd want to look at me see that I'm presentable and friendly and then they'd make up their minds. I was both naive and mistaken. An hour. It took an hour. She was going over question after question. What would you do in this situation? Tell me an experience when this has happened? There was even a role play involved. I just waffled some rubbish thinking 'need to pee, need to pee, need to pee'.

Eventually after 3/4 of an hour I had to go. My interviewer genuinely looked shocked. It was awful. I didn't want to tell a complete stranger that I have a condition as that would be embarrassing and probably cost me the job anyway, but without saying anything it just looked like I was really impatient or something, couldn't wait fifteen minutes to go.

I didn't get the job, I do put this down to overactive bladder. I probably looked bored, constantly looking at the time. I probably seemed uninteresting, naming the same experience over and over again to answer the endless questions. I probably looked a bit weird shifting in my seat all the time. I definitely think I'd have had more chance without overactive bladder, but how do you tell a stranger about it?

I have since come up with a plan for these situations. My new line is this: 'Just to let you know, I'm currently receiving treatment for a bladder condition so I may have to pop out at some point. please be understanding.' If they can't understand that then I'd be no good working for them.

I think in hindsight, I should have asked how long the interview was likely to be so I could have mentally prepared myself. I should have used my line before the interview. I should have made more of an effort to engage with the questions and not think about my bladder.

We all learn from our mistakes, maybe I'll have better luck with the job hunt soon :)

Overactive Bladder and Me

I'm not a natural born blogger, nor am I a person who enjoys a massive over share of info. However here I am doing both of those things. The reason I'm doing this though is because I feel it's important.

Recently I was diagnosed with an overactive bladder, something that one in six adults across the UK suffer from, but something that people take an average of seven years to see a doctor about. All that's happening with an overactive bladder is a muscle spasm, the bladder is a muscle and it has a spasm which makes you feel like you're going to pee yourself. I've been suffering from this for seven months and this blog is my story. It's, hopefully, accurate information about the disorder and also my own personal experience as I get treatment for it.

I went to the seaside in April. I love the seaside, but it's two hours away on a good traffic day. Not a problem, got in the car in the morning and off we went. Arrived at the seaside and was fine, noticed that I needed to pee a bit more throughout the day, but I'd had fizzy drinks etc, so I didn't think anything of it. After a great day we went home, about an hour into the journey, I needed the loo. Nothing wrong with that, I could hold it, or so I thought. 5 minutes later, so so so so so so so so desperate. Driving over the bumpy road made it worse. I was so desperate that I was saying to my boyfriend "You'll still love me if I pee in your car won't you?" hmmmmmm romance isn't dead. Never have I been so angry as the moment when he missed the turn for the service station. Eventually he had to pull up on a slip road and I had to pee at the side of the road, an experience that was both embarrassing and I got prickled by the bushes, not fun.

After this little jaunt I started to go to the toilet every 40 minutes, sometimes more frequently. There was no way I was living like that, so I went to see the doctor, something I REALLY hate doing. Without a lot of questioning, she gave me trimethoprim, an antibiotic for water infections. I was a girl in my early twenties, I'd got a boyfriend, there's a history of infections in the family and therefore it must be a water infection. I took the three day course, they didn't work, test results came back, not an infection. Back to the doctors, same story, not an infection but they gave me trimethoprim again. Back again, I told him it was not an infection, but he gave me more trimethoprim. He did send me for an ultrasound on my bladder though.

After waiting weeks for an ultrasound, I finally went and found the hospital staff fairly unhelpful. You have to go with a full bladder, but when your body is telling you your bladder is full when it isn't, that's fairly tricky. I had to explain over and over again that that's why I was there, I can't tell. They made me drink a jug of water and eventually did the scan. The scan was to tell if my bladder was emptying properly, which it was. No further action.

By this time it was summer, no change in my situation. I went back to the doctors again, not an infection, by this time every time I heard those words I would genuinely cry. I so wanted it to be an infection. What else could it be? No other avenues had even been mentioned. This doctor said that I should make sure I'm washing myself properly, something that I have always done, but ok, anything to make myself better. He didn't suggest I dump my boyfriend, but he was just saying that his daughter had a similar problem and when she changed boyfriends the problem went away. Thanks for that helpful information, Dr.

I give up. I couldn't face it anymore. It wasn't an infection, I knew that, therefore it seemed like I'd just have to live with it. Problem was, I have a life to lead, I'm 22, I'm a student, I have two hour lectures to sit through, I have a big pitch coming up. I had to tell my lecturers that I had this problem. That's embarrassing, but they were so understanding and supportive. One of them told me not to give up and to go back to the doctors one more time. I did and finally I got some help.

He suggested that it was an overactive bladder, he told me it was common. Please please please, if you are suffering like I was, suggest to your doctor that maybe it could be an overactive bladder. If it's so common they should really be suggesting that to you, but if they don't, just drop them the hint. I got referred to the urologist (took weeks, but at least I knew I was going to see a specialist who might be able to help me). It took minutes for him to diagnose me with an overactive bladder and to give me some tablets and some bladder training exercises for it.

I've been on Vesicare for three weeks now and they take up to six weeks to work, I have good days and bad days, but after seven months and all that struggle, even though they're not working amazingly yet, I know where I can go for help. I know that there are people out there who can help. And I know that what I have has a name, is treatable and is common.

Overactive bladder shatters your confidence, you worry constantly about where the next loo is. You don't think shall I go out? You think, if I go out there might not be a close toilet and there could be a queue (queues become your nemesis along with any sort of journey and the cinema (all those people looking directly at you thinking she's gone to the toilet twice during this film already, because of course everyone is really bothered about the frequency that you go to the loo and not the film))

I've found that the best thing to do is enjoy life. Force yourself to go out, don't be afraid to tell people that you've got a problem (don't shout it from the roof tops, but don't think that no one else has ever had an embarrassing problem). Be persistant, go to the doctors, go again and again and again and don't be afraid to suggest seeing a urologist if that doctor doesn't know what the problem is. Do not put up with the problem, there is help available go and find it and enjoy your life!