Vicky

Age at interview: 40

Brief Outline:

Vicky became paralysed after a skydiving accident in Spain when she was 31. She feels self-conscious about her leg bag and would welcome a newly designed catheter that does not need a leg bag. She had a urethral catheter at first and then a suprapubic.

Background:

Vicky is single and lives with a full-time carer. She is a trustee of two charities. Ethnic background/nationality: White British.

More about me...

Vicky was a healthy, active woman before her accident and worked long hours as a marketing development manager. She was sporty and enjoyed outdoor pursuits such as biking, climbing and skydiving. At the age of 31, whilst on holiday with friends in Spain, she did a skydive, something she had done on countless occasions in the past. This time, though, she landed wrong and couldn’t get up.

 

Vicky spent 2½ weeks in a Spanish intensive care unit. Her parents flew from the UK to be with her. She was catheterised urethrally but had no idea about this at that stage. She was given very little information about the extent of her injuries in Spain but, on her return to England, doctors told her that she’d paralysed herself permanently from the shoulders down. She would be unable to walk again or use her hands but had partial use of her arms. 

 

In England, Vicky spent 1½ years in a spinal unit, where she met other people in a similar situation. She’d been fitted with a urethral catheter initially, which she had for about 5 or 6 weeks, and was then fitted with a suprapubic catheter. 

 

After being discharged from hospital, Vicky lived with a spinally injured friend for about three years. She later moved to be closer to her family. She now lives with a full-time carer and meets up with her family regularly. 

 

Being paralysed was a traumatic life changing event. For Vicky, the hardest part was the continence issue. She dislikes having a leg bag strapped to her leg and is very self-conscious about it. At home, she drinks a lot of fluid, usually boiled water, and keeps as healthy as she can. When she goes out, however, she becomes conscious of not drinking too much in case her leg bag needs emptying. This often leads to infections.

 

Vicky said concerns about her catheter have led her to decide that she doesn’t want to have an intimate relationship again. Nine years since her accident, her opinion has remained the same because she would feel very uncomfortable showing someone the catheter and suprapubic site. She would welcome a newly designed catheter, one that would not need a leg bag and be better at preventing infections.

 

Vicky drinks about 6 pints of boiled water a day. She takes 1 oxybutynin tablet every morning, a medication used to relieve urinary and bladder difficulties by decreasing muscle spasms of the bladder. She has her leg bag emptied 3 or 4 times a day by her carer and her catheter changed every 5 weeks by a district nurse. She has tried catheters made of different materials and has found that a silicone catheter irritates her skin less than those made of other materials.        

 

At the time of interview, Vicky had been paralysed for just over nine years. She now does voluntary work and has given talks about her experiences. She is a trustee of a spinal injury charity and an Art Fair. She enjoys being a volunteer, though finds that the trips to London need a lot of planning and are tiring. 

 

 

Vicky said that having a catheter allowed her some dignity because at least she did not leak...

I’m lucky in that I don’t have a blocked catheter very often, so that’s no great issue. I think only once or twice in nine years I’ve had that problem, so that’s been good. But I think, as much as anything, it’s a self-image problem. Lots of aspects tie up with self-image. When I got paralysed, I decided I wasn’t going to ever have a relationship again, which might seem quite extreme really but the idea of actually having to show somebody a suprapubic site and the catheter and to have any kind of intimate relationship with somebody, I just couldn’t get my head around it. 

 

And nine years later, nothing really has changed on that score. I’m just very much happier not having to confront those kinds of issues really. So that’s something I’ve avoided quite determinedly.

 

The main thing is, as lovely as it would be for somebody to come up with a better solution, there is always this feeling that it’s a precarious balance of life. If things do work and you aren’t leaking and you don’t get the blockages, okay there’s still the infections but they are manageable, there is always this feeling that you shouldn’t really rock the boat or try anything too new or outrageous because you just don’t want to damage that fragile balance that you’ve got with this crude system that at least means that there’s some dignity.

 

The idea of having to leave a room of people who could be friends, or might even be strangers, and having to leave a room because you’ve leaked urethrally, is just so horribly humiliating that, even though this system does seem very crude, at least it does work. It’s certainly not perfect in any way but I think there’s always a slight fear of trying anything too new because of exactly that, not wanting to make anything worse really.

 

Vicky drinks less whenever she’s travelling long distance. This usually leads to infections.

If I do go to London for a day, it’s usually an early start and it’s late home, and it just about kills me. I feel like I’m jet lagged by the end of the day in London. But that’s where I found I probably pick up most of my infections because I go and, I don’t know where the disabled toilets are necessarily available, so I tend not to drink much. 

 

I don’t want to have a bulging leg bag and I don’t want to suddenly think, “Oh no it’s full, and I don’t know where to empty it and I’m starting to go dysreflexic.” One of the side effects of having an over full bladder with spinal cord injuries is autonomic dysreflexia, so that can be a problem. 

 

You don’t really want to be sitting in a room full of people, you know, and quite possibly some people you don’t and have to say, “Sorry, I’m going to have to go and empty my leg bag otherwise I’m going to have a stroke.” It’s a bit embarrassing. 

 

I don’t know, I just don’t like any of that sort of attention; I’d much rather it just wasn’t there. So if I don’t drink then I know I won’t get a full leg bag and I know I don’t have to struggle to find a toilet. I don’t have to worry about my leg bag being noticeable to other people and I don’t need to consider it at all. It’s silly because I end up with infections as a result but it’s more than just a straightforward health consideration sometimes.

 

Vicky dislikes having a leg bag. She feels self conscious, especially when she's out socialising....

I guess my feelings have always been about the leg bag and the catheter, that it’s an incredibly crude system really. And, in this day and age, I’m surprised that better solutions aren’t available. 

And, having talked to some people at the Institute, I learnt that the Foley catheter was designed in 1930. So when you think about what was available in the 1930’s, you barely managed to find a black and white television on the average street and how far technology has come and how still, we’re still living with these quite crude unsophisticated devices. 

 

Having a bag of urine strapped to your leg all day is really not a pleasant concept. And I have to say it’s something that I’m quite self-conscious of. And, when I’m in, I drink well and make sure I keep healthy and keep my bladder flushed. 

 

But, when I got out, I never ever want to go out and drink ‘cos I’m thinking, “Oh people are going to be able to see my leg bag bulging under my trouser.” And it’s just not a very nice prospect really. 

 

So I tend not to drink very much when I’m out socialising. And then I end up getting infections as a result of not drinking very much. So it’s a shame that, in this day and age, there isn’t a better solution and that infections are a big problem.

 

Vicky uses a flip flow valve but wonders if they have long-term benefits for people with...

I have a flip flow mainly because I was told as an in-patient that I should have one. That it was healthy to block off the catheter and actually let your bladder expand and to try and mimic that natural process. And then I know so many people that don’t know about flip flows, don’t use flip flows, and I think it would be interesting to know a bit more about flip flows. 

 

I went to a conference as a user and we did a panel. And one thing that came up in conversation there as well, does a flip flow actually do anything anyway? The idea that the paralysed bladder has any elasticity, is it worth bothering with etcetera? And that was quite interesting and, to this day, I will always use a flip flow because if it stops my bladder shrinking, stops me having to have any surgery to correct problems that have happened as a result of not flip flowing, then I’d always rather err on the side of caution and use one. But there’s so many people I know that don’t use them.

 

Nobody’s mentioned one before.

 

Right.

 

So that’s quite interesting.

 

Yeah. Even people who went through the spinal unit with me, some of them weren’t advised about flip flows and some were. There didn’t seem to be any great consistency. And it would be interesting to understand a bit more about flip flows and whether they do actually do what I think and hope they might do or not.

 

Vicky would like a newly designed catheter to empty completely and store urine internally. She’d...

The main thing is, as lovely as it would be for somebody to come up with a better solution, there is always this feeling that it’s a precarious balance of life. If things do work and you aren’t leaking and you don’t get blockages, okay there’s still the infections but they are manageable, there is always this feeling that you shouldn’t really rock the boat or try anything too new or outrageous because you just don’t want to damage that fragile balance that you’ve got with this crude system that at least means that there’s some dignity. 

 

The idea of having to leave a room of people who could be friends or might even be strangers, and having to leave a room because you’ve leaked urethrally is just so horribly humiliating that, even though this system does seem very crude, at least it does work. It’s certainly not perfect in any way but I think there’s always a slight fear of trying anything too new because of exactly that, not wanting to make anything worse really. 

 

In the ideal world, a new catheter, a new design, what would you like it to do?

 

I think it has to be very much more discrete. It would be nice if the urine was stored inside the body, rather like an ordinary healthy bladder would work, expanding and then emptying, rather than having something that’s external that attaches to you to store urine in. That for me, you know it’s a very crude solution. So really I guess mimicking the ordinary healthy human body in the way the bladder fills and empties. 

 

If something could be more inside the body and not so noticeable, that would be a huge positive. If I could manage it myself as well, that would be a huge positive. And if we can do away with all these things that continually cause problems, like the blockages and the infections, if there was a way of getting rid of all of those complications, and not having to take so many antibiotics and not having to go to the toilet and apologise to the PA who is emptying your leg bag, “I’m so sorry it smells so bad but I’ve got an infection.” 

 

It’s just all those things that make you feel very self-conscious. The fact that somebody might notice this tube going under the trousers and this leg bag that’s full and bulging underneath by the bottom of your leg. 

 

Vicky finds it easier having her catheter changed by the same few district nurses because her...

I feel quite sorry for the district nurses because my changes can be quite tough and they, for the first, I’ve been living here for four years now, and I think for the first year they turned up in pairs because they didn’t really want to come and deal with this change on their own.

 

But now they’ve got the hang of it, practiced enough on me, so they could do a pretty slick job of whipping one out and getting the next one in.

 

So at first it was a urethral catheter?

 

Yeah.

 

How long did you have that one for?

 

I had a suprapubic, probably after five or six weeks.

 

After so that was quite short term.

 

Yeah.

 

And you’ve had that since?

 

Yeah.

 

Yeah.

 

And I’ve had it re-sited once, the time when the district nurses came and took out one and couldn’t get the new one in, so I had to go back to a urethral one for a couple of weeks till I could go back to surgery and get the new one, a new suprapubic one reinserted. So just one reinsertion in nine years.

 

How have you felt with the district nurses? Is it someone different every time?

 

When I first left the hospital, I was living in a small village in Dorset and the district nurse team was just three or four of them. It was very small and quite often it would probably just be two of them that came, so that was easier.

 

Moving here into a bigger town, I found there was certainly a bigger team and more changes of faces. But actually now I don’t, they’re quite good and I tend to see the same few people within the team.

 

And I know the, I don’t know what’s she called, Community Liaison Nurse at the spinal unit. She came and did a bit of a teach-in on my catheter change because it can be a bit challenging. So I think we had about 11 community nurses appear and see how to change it.

So you know there’s plenty of them out there, but I tend to see the same few which I think is better in the respect that they get a bit more practiced and it does seem to be less problematic if I’ve got somebody that’s changed it a few times before. So that’s good.  

Vicky had a spinal injury after sky diving in Spain. She was catheterised urethrally in intensive...

Life before my injury was quite active. I worked as a marketing development manager and worked long hours, but also had quite a few pastimes that were very adventurous and outdoorsy. I used to mountain bike and climb and sky dive and did a lot of running. So I think it was quite an active busy life to say the least. 

 

When I was 31, I jumped out of an aeroplane. I’d done it three hundredish times before, but just had a fast landing. I was in Spain at the time for a long weekend and just had a fast landing. Nothing dramatic happened but I landed on my feet but fell over and couldn’t get up. So I had a horrible feeling that I’d managed to break something important and paralyse myself, and sadly was right. 

 

I was two and a half weeks in intensive care in Spain before I came back to the UK. So during that time I was catheterised urethrally, which I had no idea about. There was a fair amount of morphine going on and how aware I was, looking back, I don’t think I was particularly aware of a lot of things. 

 

When I came back to the UK after my two and a half weeks, it was only then that I was told that I had indeed paralysed myself permanently. And that I wouldn’t be able to walk again or be able to use my hands. So I broke my C5 vertebrae, which makes me paralysed from the shoulders down, and half my arms work but my hands don’t. 

 

Vicky gets blisters with some materials. A silicone catheter is ‘the least irritating’ to her skin.

I had a problem with the material. I don’t think I’m allergic to the materials but I think, where they’re in contact with my skin and where I might just lean forwards and move around a bit, during the day it just rubs my skin a little bit and I find I get blistered quite easily. 

 

And the same goes for the little piece of rubber that are in the middle of each leg strap to help it grip and stop it sliding down. That also will blister me if the straps are too tight, and I don’t have any strap to hold the tube in place on my thigh because I had to give that up. It just continually blistered me no matter how carefully we put it on, it just always blistered. 

 

The catheter is a silicone one, which seemed to be the least irritating to my skin. But still every morning we wrap it in a bandage to keep the material away from direct contact with my skin. And if it does, I think if we don’t do it quite carefully and there’s a bit showing through, I find I’ll have a blister by the end of the day. 

 

It took Vicky a while to adjust to having a ‘total stranger’ in the house, but when she found a...

Have you had the same carer over the years or does it change?

 

They do change, yeah. Usually I have a permanent PA [Personal Assistant] for as long as they stay. My current PA’s been with me for just over a year. And the two before that worked with me for two and a half years. But they have breaks so, while they’re away, I’ll often get an unknown face and sometimes somebody who might come a few times, which is nice.

 

How have you felt about the carers and care over the years?

 

It certainly takes a lot of getting used to. I think when I was first in the hospital, there was lots and lots of us, I guess 40. I think they have a 48 bed unit and not so many staff. And you think, oh wouldn’t it be nice if I’d got someone to help me all the time, and I can do this or do that, and that it’s going to be so much easier. Rather than trying to drag a nurse away from something to perhaps set you up with something so you can get on. If you can do something independently, like painting, if you attach a paintbrush to my hand and squirt some paint out for me in a palette I can get on. I’m quite happy for a while, independently doing that, but you need setting up to do it.

 

It’s like a lot of things in life; you need that help to get you to your point where you can move forward with a bit of independence. So the idea of having 24 hour live-in care was great when I was in hospital. I thought fantastic, I’ll be able to do whatever I want, and it’s going to be really great, compared to the compromises that you make in the hospital because they’re so busy the nurses.

And then I moved out and suddenly it dawned on me that I’m having this total stranger come to live with me and I don’t know anything about them. And this is it for the rest of my life. And it was a really hard adjustment to make.

 

When you’ve got somebody who is good, it’s brilliant. And you learn how to live with carers. You learn the way in which it’s easiest for you and what suits you and what doesn’t.

 

When you get a good carer, it’s great, because life is so much easier. And when they stay for a few years, like mine have, then it’s really good because at the moment I have somebody just for 8 days because my regular PA is on her break. And so for the last 8 days I’ve had to remember, “Oh don’t forget to tell that person what day the dustbin goes out.” Whereas the permanent PA’s know all of this. So it’s very much easier with a permanent PA and they know everybody in your life and they know every, the way your life runs and how things work and how things don’t work more importantly in some cases.

 

I’ve been just over nine years paralysed now and I think probably the first five years were just hideous really, not just care but just getting used to all of it, just felt like you know life had ended really. But after five years, slowly but surely creeping back into life a bit, you adjust. And now it feels a little bit, I don’t know some days I feel like it would be strange to be able to walk again and do things for myself.  

When travelling, Vicky didn’t know where to find toilets for the disabled. She drank less to...

If I do go to London for a day, it’s usually an early start and it’s late home, and it just about kills me. I feel like I’m jet lagged by the end of the day in London.

 

But that’s where I found I probably pick up most of my infections because I go and, I don’t know where the disabled toilets are necessarily available, so I tend not to drink much. And I don’t want to have a bulging leg bag and I don’t want to suddenly think, “Oh no it’s full, and I don’t know where to empty it and I’m starting to go dysreflexic.” One of the side effects of having an over full bladder with spinal cord injuries is autonomic dysreflexia, so that can be a problem. You don’t really want to be sitting in a room full of people you know and quite possibly some people you don’t and have to say, “Sorry, I’m going to have to go and empty my leg bag otherwise I’m going to have a stroke.” It’s a bit embarrassing. 

 

I don’t know, I just don’t like any of that sort of attention; I’d much rather it just wasn’t there. So if I don’t drink then I know I won’t get a full leg bag and I know I don’t have to struggle to find a toilet. I don’t have to worry about my leg bag being noticeable to other people and I don’t need to consider it at all, it’s silly because I end up with infections as a result but it’s more than just a straightforward health consideration sometimes 

 

And when you do go straight to London or other places, your carer is with you?

 

Yes.

 

Do you travel by train then?

 

Yes I do. It’s a very long day usually and I think it’s a tiring day for a PA if they’ve got to drive in and out as well. If we go on the train, at least they can relax on the journey so we tend to take the train.

 

Vicky didn't want anyone else to see her suprapubic catheter. She decided not to have any more...

 I’m lucky in that I don’t have a blocked catheter very often, so that’s no great issue. I think only once or twice in nine years I’ve had that problem, so that’s been good. But I think, as much as anything, it’s a self-image problem. Lots of aspects tie up with self-image. 

When I got paralysed, I decided I wasn’t going to ever have a relationship again, which might seem quite extreme really but the idea of actually having to show somebody a suprapubic site and the catheter, and to have any kind of intimate relationship with somebody, I just couldn’t get my head around it. 

 

Nine years later, nothing really has changed on that score. I’m just very much happier not having to confront those kinds of issues really. So that’s something I’ve avoided quite determinedly.

 

After Vicky’s sky diving accident, she spent hours talking to other people who were also trying...

So that was quite soon that you met other people?

 

Yes, it was about five weeks, five and a half weeks after the injury that I could sit up. So as soon as you can sit up then you start to chat to people, it’s very nice. It’s quite hard, when you’re in bed, when you’re acutely injured, even if people come to see you in a wheelchair they’re just that bit too low. When you’re lying on your side looking at somebody who’s not quite at the right place it’s quite hard to see people. And when you see them sat upright, you think, “Oh you look like that.” Totally different ideas when you see them laid down and in the chair. So that was really great as well. 

 

How helpful was it to talk to other people in the same situation?

 

Massively. I think that was the best part. I mean obviously being in a spinal unit you’ve got specialist care. You’ve got people that know exactly what you’re going through and they’ve seen it hundreds of times before. So that was great, but actually having the people there who were around you, who’d done the same thing and are going through exactly the same thing, you just, I think we probably did about oh probably ten hours of therapy every day it felt like, nothing arranged just all sat in the dining room, day room, visitors room whatever you want to call it, talking about, the subject was always about, “What I was”, and “I used to be able to do this,” and “I used to do that,” and “I was this etc.,” it was a whole sort of phase, almost like mourning of all these things that you’ve lost. And trying to get to grips with how on earth you’re going to move forwards.

 

It was very nice occasionally to meet some people who were further down the line. So you got a little bit of perspective because it’s quite hard to know what on earth life’s going to be like really outside the hospital. And I stayed for a remarkably long time. I was there for a year and a half, so I think the longer it went on the more I was thinking, “How do I,” “How am I going to cope when I leave?” Whereas actually now I’ve been out for seven and a half years and if I have to go back for anything I think, “Oh no, I don’t want to go back.”