I’ve without exception really only had, I guess good experiences aren’t necessarily the right way to describe it, because you don’t really want to be treated any differently, you don’t want good or bad, it’s just normal. I think certainly there are situations where, you know, you do need help from the odd stranger or passer-by or taxi driver or whatever. And, yes, certainly I haven’t had any problems in that regard. So, yes, I think all round, I don’t think certainly in London there’s too much novelty in seeing somebody in a wheelchair or with some sort of disability. I think London’s pretty good like that.

Yes, I think I was probably in bed for eight weeks before I sat in a wheelchair for the first time. Getting up for the first time, you’re warned that it will be very difficult and you’ll feel nauseous and you might well pass out. You are prepared for going into a wheelchair by taking some ephedrine, which raises your blood pressure, keep your blood pressure up, because having been horizontal, to go vertical your blood pressure drops enormously. And I certainly remember taking that. I also had a binder round my stomach and abdomen to also try and keep my blood pressure up. And I think getting up for the first time I was able to do 15, 20 minutes, something like that, before you have to go back to bed and, and lie down. And you feel exhausted after that. And then obviously, you know, it was extended over the course of time and, you know, after a few weeks you’re up to a couple of hours. And then at, at a certain point you sort of reach the, the situation where you can be up all day. And then, you know, in conjunction with that was various physiotherapy sessions that you attend, occupational therapy

And the whole rehabilitation process is gearing you up to leave hospital and resume as normal and healthy life as, as you can outside hospital. And I would say that your rehabilitation continues really way beyond hospital, because hospital is quite an unrealistic environment. it’s, it’s a flat area with nurses and, you know, hospital equipment everywhere. And out into the real world is quite different. So I think, yes, your rehabilitation starts in hospital, but it, but it also carries on when you go home.

Do you employ a carer all day?

I do. But I don’t need help all day, but there’s just somebody there. And that’s the way I choose to do it rather than having somebody come in to my house from an agency twice a day, when you could have two different people coming in and four different people in a week and ten different people in a month. And I much prefer the consistency and the control that I get by having somebody on call all day.

Is that what you found when you tried an agency? Did you get different people coming?

Yes, yes, and that’s certainly a frustration with agencies. And different people have varying degrees of familiarity with how you like things done, how things should be done. So, you know, with changing people you’re for ever explaining how things are done and requesting how you would like things done. And a degree of consistency in carers is very important. Well, I certainly find. But at the same time they, an amount of change is good as well. You don’t want somebody the same all the time.

So how do you manage that? Do you employ somebody for a while?

Yes, I manage it myself. I alternate between two carers over time. And it’ll be on a couple of weekly basis.

So you might have one person one week and somebody else another week?

Yes.

Or different days or

No, it’ll always be for a period of time longer than a week. So it’ll tend to be a two-week
rotation.

So you’d have the same two people coming two weeks, both of them?

Yes. So two weeks one person, then another person for two weeks, and then two weeks back to the original person.

And from your experience, how have you gone about finding somebody suitable?

It certainly can be difficult. There are a couple of websites that connect carers and care users. Otherwise personal recommendations. Yes, so that’s how, how I’ve gone about it.

I guess my life now is normal as I see it. You quickly adapt to a new situation and certainly over time as the years go by it becomes normal. And the fact that, you know, you use a catheter is just normal and the fact that I use a wheelchair is normal. I get up and, you know, the wheelchair is my way of getting about and I’ll go off to various meetings and, and work and, you know, come back at the end of the day and sit on the sofa and have a shower like anyone else. it’s just I guess different ways of doing, doing things. And I think certainly it’s difficult to get used to having to have help on, on certain things, having someone around. That has impact not only on me but, you know, your close family. Having somebody around to help do things slightly alters, you know, your domestic set-up. And, you know, there are frustrations with, you know, not being able to partake in the sports or certain things that I used to do before. But there are, you know, new options of things to do and ways to exercise. And, you know, going on holiday becomes more difficult, but you just have to check that where you’re going has suitable access. And provided you’re fairly adaptable and, and healthy you can, you know, get round most things. So, yes, it’s difficult and there are frustrations along the way. But you realise that there are, many people have different limitations in different ways and there are always going to be limitations, and unfortunately some of mine are more severe than, than most people. But you end up in a situation where your life is what your life is. And you know what you’re doing and, you know, you settle back into a routine. And that’s, you know, how things develop.

I suffered a severe spinal cord injury in September 2005 at the age of 25. I was living and working in London at the time. Three years after graduation from university I went on holiday to Portugal with a number of friends. One day while on the beach I went down to the water for a swim, dived into the water into a wave off my feet, and suffered a spinal fracture of the neck, resulting in immediate paralysis from the neck downwards. And I suppose luckily I had two friends that were with me at the time, because obviously complete paralysis means you can’t move. So I was face down drowning in the water but the two friends and some passers-by managed to get me out of the water in time, on to the beach. I have to say that it was a fairly painless experience, and certainly the most difficult sensation was drowning.

It was done under epidural, under I suppose you’d describe it as local anaesthetic. So it was done in operating theatre, epidural in my back and then, yes, the insertion of the, the suprapubic catheter. I do remember that following insertion there were certainly a couple of days when you have large saline bags to wash through the, the bladder, because there is obviously some trauma associated with insertion of a suprapubic catheter. So it can be a little bit alarming that, you know, there is a degree of blood in the urine and, and certainly it’s discoloured to start with. And it takes a bit to wash that through.

Did you, did you have a saline drip in your arm so that you had more fluids going in or was it a saline wash-out?

It was, it, it was a saline wash-out. So I think that the urethral catheter was still left in for a day or two so that saline, or whether it was saline, water was passed through the bladder so that it kept flushing through and, was able to, to, to get rid of that trauma at the time. Obviously that is, that was quite a disconcerting sight. It was, you know, for a day or so, bladder, you know, blood passing through your bladder. But you’re told to expect that. So, you know, it tends to clear up within 24, 48 hours.

Yes, I think I was reticent although I knew it was necessary. I think independence in urinating is, is something everybody takes for granted, and to be in a situation where, you know, something’s going to be put, put into your bladder permanently is, is something you’d, you’d rather not happen. But when faced with relatively few alternatives, I wasn’t able to self-catheterise, so that was a decision that was come to that was the best way to, to manage my inability to urinate or control urination myself.