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 wa, 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

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.

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.

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.

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.

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.

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.

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.