Frances

Age at interview: 64

Brief Outline:

Frances started having problems with her health at the age of 35 when she was pregnant with her daughter. She was later diagnosed with multiple sclerosis. About 5 years later, around 1986, when she was aged 40, she was fitted with a suprapubic catheter.

Background:

Frances is married and has an adult daughter. She is a retired hairdresser. Ethnic background/nationality: White British.

More about me...

Frances started having problems with her health at the age of 35 when she was pregnant with her daughter. At this point, her symptoms felt like those of a stroke – she had no use of one side of her face, no balance when walking, and slurred speech. She suspected she had multiple sclerosis (MS) and was diagnosed when her daughter was about a year old. 

 

MS is a disease affecting the central nervous system (the brain and spinal cord). One of the worst symptoms was incontinence, which affected Frances’ self-esteem. Frances would often wet herself and wore pads for some time. She was prescribed a tablet called oxybutynin to help stop bladder spasms but said the side effects were ‘grim’ and included a dry mouth, gagging and choking, and dry eyes. The tablets did not stop her bladder spasms. 

 

When Frances’ GP referred her to a urologist, she was fitted with a suprapubic catheter. This was around 1986, when she was about 40. Frances knew little about suprapubic catheters at the time and felt awful after the operation when she thought about spending the rest of her life with a leg bag of urine strapped to her leg.

 

After a while, Frances started to wear her leg bag very neatly inside her trousers by her waist. She had a bag with no tube, a short catheter and very little piping. The bag doesn’t show and she is able to wear tight jeans, shorts and skirts. She wears the same bag overnight. Frances said her catheter has not given her any problems in terms of having sex or her periods, and she has also been swimming. 

 

Frances prefers silicone to latex catheters and has hers changed by a district nurse every 4 or 5 weeks because of overgranulation around the catheter site. At the time of a catheter change, Frances uses a spray called Savitex. This is prescribed by her GP and helps stop spasm. She changes her bag every 5 days. She said that the catheter had ‘been a Godsend, and it’s made a big difference to my life.’ Frances occasionally gets a urinary tract infection (UTI) and has been prescribed antibiotics by her GP to keep at home for when she needs them.   

 

Frances has secondary progressive MS, which has slowly progressed over the last 30 years. She has poor bowel control and takes medication for this. She exercises regularly, though can get very tired. She said she takes a medicine called Low Dose Natroxene (LDN) and this has helped her MS to progress less quickly. She buys it privately and found out about it on an MS online forum about 3 years ago. She also takes a high dose of vitamin D. 

 

Day to day, Frances makes sure she goes out on her mobility scooter ‘whatever the weather’ and keeps as active as she can. Walking can be difficult and she has lost feeling in her left hand because of the MS.  

 

Frances said she was happy with the care she’d had from district nurses. She advised other people with MS to find out about the benefits of LDN and high dose vitamin D. 

 

SOme time after her interview, Frances said that she came across a supplement called D-Mannose. She felt it has helped in preventing UTI's and said she would strongly recommend it to other people.

Frances recalled what happened when a doctor visited her to assess her disabilities, and explains...

This going to impact on my work?” You’ve also had to look at that again and you know “How are we going to cope financially? What benefits are we entitled to?”

 

I know that’s something that’s always, that’s a terrible worry for people. I was lucky that my husband was working and had got a reasonably good job. How I would have coped if I’d have been on my own I hate to think because I’m still not sure whether, I mean I get a mobility benefit. I did have a job to get any benefits to begin with because I’m self- employed. If I’d been working for somebody, if I’d been employed, I would have got quite a lot more I think, at the time.

 

But it’s something that, even now, I think I ought to look into because I’m probably, I’m sure that there’s probably something I’m entitled to that I’ve never, never gone after.

 

Is there any advice you would give to someone who’s been newly diagnosed and is thinking, “Okay, I might not be able to carry on working as I was doing, how do I find out about the benefits?”

 

There are online people that you can contact. There’s a ‘Benefits and Work’ website which, I’ve personally not tried it, but I’ve had lots of people say how good it is. And they sort out all the benefits for you and tell you exactly what you’re entitled to, and how to claim. That’s another thing is how to claim. I think they’ve changed some of the benefits because I did have one which was severe disablement.

 

They did send a doctor to check me because they check on benefits to make sure. And he came and he sort of measured to see what disability I’d got. I was surprised that a couple of weeks later I got a letter to say that I was awarded a higher amount. There was I thinking, “Oh he’s going to say if she doesn’t need anything,” and he actually decided that I should be on a higher amount. But I’ve never done anything about it since and I am far worse now than I was then. So I probably could get more. There’s another advisory website which is called, “Turn2us,” which they sort it out for you as well.

 

That’s good to know.

 

Yeah.

 

That’s something that we could maybe list on our website

 

Yeah.and I know that when people fill in forms, I mean you don’t always like to admit that you’ve, you know you have difficulty in getting yourself cleaned up when you’ve had accidents. And you’ve got to, you know, it’s pretty horrific. Pretty horrific side of it and you don’t like to say that you need help and care. And you like to think of things on a good day. But when you’re filling in for benefits you’ve really got to fill it in as if it was one of your bad days. You’ve got to look at it like that. That’s the sort of advice that I was given. 

Frances shows her cotton backed leg bag. There’s no tube so she can wear it at her waist. It...

This is the bag. That’s the tap end but, on one side as you can see, it’s velvety. It’s sort of cotton backed, so it doesn’t affect the skin. It doesn’t make you sore or a rash or anything. And it just goes nicely there like that. That goes inside the trousers, just like that.

 

And how do you keep it in there?

 

And there’s no tube. And on the top there’s these little eyelets and I just thread through it, I thread a lace. Either a football lace or a piece of ribbon. I’ve got lots of different ones. I match them with the different colour pants I’ve got. Cos you can get these in shocking pink, purple, orange, and this is what I do. I just tie it; I’ve got a red one on today. And it’s just tied. And that’s where it is. In there. Not down my leg anywhere. 

 

And because it holds 600 ml, that’s a fair amount which is spaced out nicely, if you’ve got a smaller bag you’ve got a big lump. But this size, and it’s so easy to empty. I’ve only got to just get the tap out, and I can empty it whether I’m sat down or on the toilet. And it just all tucks in. And I can wear quite tight jeans and shorts or even a swimsuit.

 

I have a bag with no tube. And I have a short, a very short catheter so I haven’t got loads of piping. It goes directly into the bag and the bag is 600ml, which is quite big enough to last me through the night as well. So I haven’t got to go linking it up. And the more you start changing your bag and linking it up to something else, the more you have a risk of introducing infection.

 

Is it the same bag you have overnight?

 

Yeah, I don’t change it. Yes, except every five days I change the bag. But, it’s day and night, it’s the same one. 600ml is quite enough. Because at night time your bladder does sleep. It’s supposed to sleep anyway. And it’s all contained in my underwear. I don’t, nothing you know, it’s all very neat. And I just put a piece of ribbon or a bootlace, anything. I have different coloured ones, different ones to go with whatever I’m wearing and I just loop it through, you know loop it through the thing or something and just tie it, tie it at the waist. It’s just my version of a g-string.

 

Frances’ first symptoms started when she was pregnant. Incontinence was one of the worst aspects...

I started with MS when I first became pregnant with my daughter, who is now 29, so it’s nearly 30 years ago. To begin with, it was almost as if I’d had a stroke. It took away the use of one side, face, everything just dropped. It was as if I’d had a stroke. And I couldn’t feel my feet touching the floor when I walked. And I couldn’t stand even in the shower without, I was so, the balance had gone completely.

 

Was this after you’d had your daughter?

 

No, this was whilst I was pregnant and my speech was so slurred. I just sounded as if I was drunk and it was very frightening. And I had suspicion that, I mean the GP, I had some tests done and the GP told me that it was inflammation of the spinal cord, which I knew meant, I had a big, guessed it was MS. But it wasn’t until about, my daughter was about a year old before they actually, you know they actually confirmed and said that that was what it was.

 

But I started, one of the worst things was I kept wetting myself. I’d got no control over my waterworks at all and, being clumsy and slow on my legs, it meant it was just a job to get to the toilet in time as well. And I had to keep padding up and it was being, you know I’d got a baby in nappies and me in nappies as well. And that went on for a long time. And, you know, it was just horrendous. It takes up all of your self-esteem. You know, it really is pretty grim.

 

I mean at night I used to have to have things in the bed and, you know, it was awful, awful. And then it was suggested to me that I could have this suprapubic catheter done.

 

Frances shows how she wears her leg bag. She can wear tight jeans, shorts and swimwear. She also...

This is the bag. That’s the tap end but on one side as you can see, it’s velvety, it’s sort of, it’s cotton backed, so it doesn’t affect the skin. It doesn’t make you sore or a rash or anything. And it just goes nicely there like that. That goes inside the trousers, just like that.

 

And how do you keep it in there?

 

And there’s no tube. And on the top there’s these little eyelets and I just thread through it, I thread a lace. Either a football lace or a piece of ribbon. I’ve got lots of different ones. I match them with the different colour pants I’ve got. Cos you can get these in shocking pink, purple, orange, and this is what I do. I just tie it; I’ve got a red one on today. And it’s just tied. And that’s where it is. In there. Not down my leg anywhere. 

 

And because it holds 600 ml, that’s a fair amount which is spaced out nicely. If you’ve got a smaller bag you’ve got a big lump. But this size, and it’s so easy to empty. I’ve only got to just get the tap out, and I can empty it whether I’m sat down or on the toilet. And it just all tucks in. And I can wear quite tight jeans and shorts. Or even a swimsuit.

 

Yes. Can you show me your catheter as well, for the recording.

 

Yeah.

 

I need to know when you’re ready.

 

My flies are undone. Now I wish I’d lost a lot of weight you see before you came. 

 

This is the female length catheter. And so the only tubing you’ve got once that’s inserted is that little bit there, which just goes in like a little loop there. And it’s connected straight to the bag, to that end. So there’s no tubing, absolutely no tubing. So you’re almost peeing straight into the bag, into there.

 

So there’s no, it doesn’t kink, whereas if you’ve got a longer length which you’ve got to sort of tuck and put away, I find it kinks. And you get into all sorts of trouble, apart from the weight of it, you’d be surprised how heavy that is if that’s hanging off that, you know the opening, the sore, the catheter site itself. And these have been terrific, and these are the Manfred Sauer ones.

 

Frances, with MS, described the ‘horrendous’ side effects of oxybutynin. It dried her mouth and...

Well the tablets have such a dreadful side effect. They dry your mouth up so that you gag and you choke. And it even dries your eyes as well. They were horrendous but they didn’t do what they were supposed to do, by stopping your bladder from working. And I can remember saying to the urologist, you know “Before you prescribe these to anybody else, will you just please take them yourself?” Because they are dreadful.

 

In the end, I got my GP to refer me to another urologist and he said straight away that I could have this suprapubic catheter done. And I didn’t really know anything about it then.

 

Can you tell me what the name of these tablets were?

 

Oxybutynin, yes.

 

The side effects that you had were the dry eyes?

 

It was the gag, I couldn’t speak to anybody. My mouth was so dry that if I tried to speak I would be, you know, I would gag all the time. It was horrendous.

 

Frances orders her catheter equipment over the phone. She has been using the same type of...

I also get Savitex spray, which is a cannabis based spray which I get from the doctor. The doctor prescribes it. And that stops spasming and, if I know when the district nurses are going to come, if I take a couple of sprays of that. It usually helps stop the bladder from going, it just ties itself into knots you know.

 

And just going back you get the bags from?

 

I just ring up the agent, this agency,

 

And they deliver them?

 

Yeah.

 

And this is on an NHS prescription?

 

And they get the prescription direct, they get the prescription for it from my GP. And what I normally do is, because after all these years I still have the same catheter and the same bags, I quite often just order enough for the year so there’s only like one lot of postage, ‘cos they come and deliver it. And I think well one lot, it’s a way, and I know I’ve got enough there now for a year.

 

Frances felt shocked when she first saw her catheter and leg bag. But she soon learnt where to...

I went and I booked and he got me in fairly quickly and I had it [the operation to have a suprapubic catheter] done. And I had no idea of what it was all about. And I can remember waking up after the op with this tube and this bag attached to my leg and everything. And I was horrified to think that I was going to have to spend the rest of my life with a plastic bag with pee in strapped to my leg. And I thought, “What have I done?” You know, what’s worse? You know what is this, is this it now? Am I going to be like this? And it was awful.

 

And you were fairly young at this time weren’t you?

 

Yes, yes. And somebody at the hospital, a nurse at the hospital came up to me and she said, “When you get the chance,” she said, “Look up a company called, can I mention it, called Manfred Sauer, who make the bags.” And the people who work for him are all disabled. They are either wheelchair bound or they’ve got MS. And they’ve designed all these things because they know exactly what they need. And that’s what I did. 

 

I contacted them and eventually managed to get all the contraption that I was advised at the hospital to use. And also I got an agency nurse, you know one of the agencies that do the catheters and everything. And she just dealt in suprapubic catheters and she was brilliant. And I had her for quite a long time. And then she became ill and I had to have the district nurses. But she had trained the district nurses, so I did quite well.

 

And I ended up not doing any of the things that I was originally advised to do, and I can wear the bag in my trousers, really neatly. I don’t have all these long tubes. I have a direct valve. The bag is sort of cotton backed so it doesn’t affect your skin underneath it. And it’s of a decent size, and I don’t even have to connect to a leg bag at night beside the bed because that made me feel, mentally makes you feel as if you’re, you know, finished almost, you’re not a real person. There’s nothing feminine about it. And I managed to do, eventually, do things my way and it’s worked out, it has worked out well.

 

Frances thinks that it is important to laugh with other people and that disabled people shouldn't...

Have you ever been surprised by anyone else’s reactions if anything’s happened while you’re out and about?

 

Well most of my close friends know that I’ve got it done because they all knew I was going, they all knew that I had trouble before, because we used to make jokes about when I was padded up. They used to sort of say, “Here comes squelch,” ‘cos that’s, I used to say, “Oh I won’t sit down.”

I mean you’ve got to make fun, you’ve got to make fun of yourself. And I make, it’s like when I’m on my scooter and that, you’ve got to laugh at yourself. You really have. And I mean I’ve had accidents on my scooter. I’ve ended up in A&E, fallen off and that. I’ve done awful things. My daughter says I’m the only disabled Mum who does extreme sports. 

 

But you do have to laugh about yourself and I don’t get offended by disabled jokes. You know, when ‘Little Britain’ first started on the television and they’ve got that chap in the wheelchair. And people used to say, “Oh how,” you know that’s offensive to disabled, it’s not. We can all laugh; we can all laugh at it. And I’ve copied them as well and I’ve been, when my friends have taken me out somewhere, we go to the Horse of the Year show or something. And they’ve taken me in the wheelchair. And I’ve done it to them; I’ve pointed and said, “I want that one!” And you have to do it, you know. And it’s like the one on ‘Benidorm’ [TV programme] and the scooter, and she’s all burnt up isn’t she? But I laugh at it. I think, you know you’ve got to laugh with it.

 

Frances, with MS, wished she’d had a suprapubic catheter earlier. It has got rid of urgency and...

It’s very difficult to separate the problem of the catheters from the problem of MS. A lot of these problems, I mean you can imagine for anybody if they’re no, to have no control over your bladder and bowels is really probably the worst thing that can happen to you. You don’t think that until it happens. But when it does, it is the worst thing. 

 

So I mean you’re like it as a baby and you can be like it when you’re very, very elderly I suppose. You could have problems, but to go through most of your life with it, it is a big problem. 

 

It’s alright if, you know, you’ve got disabled toilets and things like that where you can get to. With a disabled toilet, of course, at least you’ve got a chance to clean yourself up in them. That’s a, but just to part, you know with MS, when you’ve got no control, no warning, it’s too, by the time you need, you think you need the toilet it’s too late. So that’s, I do think it’s the worst part.

 

And at least with the suprapubic catheter it’s taken away all that, you know. For that side anyway. It has made a big difference. And I can’t say it, well I wished I’d had it done earlier than I did.