Liz - Interview 39

Age at interview: 34

Age at diagnosis: 31

Brief Outline: Liz was diagnosed with inherited form of MND in 2004. (Her father and uncle both had MND). Weakness in her legs progressed to her arms; she is now in a wheelchair. Her speech is unaffected.

Background: Liz is a former hydrologist (environmental scientist), married. Ethnic background/nationality' White British.

More about me...

Liz's father and uncle both had MND; her uncle died about 20 years ago and her father about 10 years ago. She and her sisters have therefore known for some time they might also inherit the condition, but Liz always assumed if it did happen to her it would probably be later in life, like her father. At the time of his death, Liz had already met her future husband at university, so they knew when they got married that it was a possibility.

Liz and her husband emigrated to New Zealand about three and a half years ago in early 2004, to experience a different way of life. Shortly after they settled in, Liz noticed her right foot was dropping. Given her family history, MND was diagnosed within about 3 months. It was a huge shock for both of them, and the first thing they had to decide was whether to come back to the UK. In the end they decided to stay in New Zealand as long as possible; as Liz says, they felt 'if ever quality of life was important, it was then.' She carried on working as an environmental scientist for about two years, at first full time and then gradually reducing her hours. Even when she decided to resign, her boss kept her on as a consultant so she could keep up contacts at work. 

Her husband's employers were also very helpful in letting him take time at home to look after her, but eventually they decided to employ a paid carer so they could each have some independence. Liz felt guilty that her husband had to do so much for her, and feels much happier having someone whose job it is to provide care. It has made her relationship with her husband feel more normal again. Deciding to use a wheelchair full time also made life easier and more independent in many ways, especially when she got an electric wheelchair. It meant they could go out together again and he could walk by her side instead of pushing. However, as the weakness in her arms has worsened, it is a source of sadness for Liz that she can't hug her husband or reach out to touch him.

In 2007, they returned to the UK so they could be nearer family and friends. Getting a new care network established here has been tiring and stressful, and she misses the hospice in New Zealand where she had a group of friends who would meet regularly to chat and do things together. But she still enjoys life and has a lot of support from family and friends. Most of the time she feels content 'living in the moment', enjoying company, eating out, going out for the day. Sometimes when she thinks about the future she is scared about losing that quality of life, and worried about what her husband will go through. Meditating helps her restore a sense of inner calm and reflection on the good things in life. She says, 'If you didn't have death, you didn't have disease, then you wouldn't quite see the richness of life either.'

She thought she wanted to stop work, but she was glad her boss persuaded her to keep doing...

I worked for probably really two years. The first few months after I was diagnosed, I was still working full time. And then after about two or three months after the diagnosis I talked to my boss and went down to four days a week. And that was really just so that, I thought, 'Why am I working full time? [laughs] You know, I need to be, I need more sunshine hours, I need, you know, more time. I just want to potter.' And that was great. But I did really enjoy the contact at work. I enjoyed the normality as well, and the social side of things, and the intellectual stimulation. But I, I think when I, later that year, about six months or even a year later, I decided that it was time, I think it was with, family were coming out, friends were coming out, I was wanting to take time off and I thought, 'Why am I, why am I even working?' 

So I gave up work. But fortunately my boss at the time was really, really supportive and said, 'Right, well, yes, I'll let, I'll let you resign. But I'm going to keep you on as a consultant, so that you can still do the odd projects and do whatever hours you like.' So I was really, really fortunate. And at the time I said, 'Well, that's fine, but I don't want to do any more work.' But three months later I was glad of it. And it was lovely. I used to come in and do a day in the office and maybe half a day at home. And it was great to just keep my hand in and have that social contact, feel needed and feel a sense of worth, and, but not be dominated by the politics of work and not be bogged down. And, yeah, I, I really do appreciate his wisdom, really, in sort of saying, 'No, you hang on there.' And, and that was great. That was a real, that was quite a huge support for me actually. Yeah, it was lovely.

Yeah, well, I mean - well, another thing that my husband and I found was that for the last year we were, we were in New Zealand, as I say I was much more wheelchair-bound, and I really needed my husband's help, or someone with me, most of the time, or at least I couldn't be left for more than two or three hours. And, and my husband's employers were phenomenal and gave him an awful lot of time off, so that he was either working from home or he just was at home. And, and so we were together for a year, sort of at home together. And that was fantastic, because we could also go to the beach or, you know, do really nice things. But as my mobility decreased and also we lost the sense of a normal life, actually spending a lot of time together became detrimental. And it was actually, we were just getting at each other all the time, and we really missed the sense of normality. I think my husband missed a sense of motivation and worth, because although he was caring for me there wasn't, he didn't feel like he was achieving anything. And so that was one, also one of the reasons for coming back was that we, we wanted him to go back to work and work fundamentally on a sort of full-time basis, and, and then have people caring for me that were paid or, or relatives that could just do what was manageable.

And so that he could come home at the end of the day, tell me about his day and I could tell him about my day, and, and re-establish that normal relationship. And that, that has been great. That's been really, really good, to get that normality back. And so that he's got a focus as well that doesn't - and I'm not the focus of everything, although I like it to be sometimes [laughs]. Most, you know, fundamentally I don't want to be the, the thing that everything revolves around and everybody always making a fuss over me and 'What about this and that?' I just want it to be normal. And that's, that's really helped. And, which is quite counter-intuitive, really. Mm.

She had already met her future husband at university before her father died of MND. They assumed...

I, my husband, husband and I met at university, when we were 18, in our first week at university. He was very convenient. He was in the dorm opposite me in halls. So we were together through the whole of university, and so we'd been together for three, four years probably when Dad died, which has been a huge help actually now going through all this. I don't know why. I think it's because it, it helps set the scene a bit for [husband]. And I think before we got married he, he knew the - [tearful] he knew the deal as well.

I can't, I don't really have a memory of any specific discussions, although, ...because it was matter of fact. You know, he knew that, we knew that, you know, my uncle had died and my father had died, and also their mother, actually. Looking back at the records now, although they diagnosed it as maybe a stroke or, you know, something like that, that was back then, but actually looking at it now it's likely that she had it as well. But they can't go back any further because she, they think that she was adopted. So that's where the family history ends. So I don't remember any specific discussions. But obviously [husband] knew as well as I did. Because it probably wasn't really clear until Dad died what the implications were for us. And I think we felt that it's something that affects older people.

Her father did not have a known mutation so she did not have genetic testing. She had already...

And did, did any of you ever have any genetic testing?

No. We, I know my sisters and my cousins did talk about it, and at the time there wasn't really any testing available. We, I think they were just starting to develop it and they'd found there was some testing available for the SOD-1 gene. But we, I think they tested my father's blood and found that it didn't have the SOD-1 gene mutation. So we felt that, you know, there was no point. But before that I think my sisters and I had decided that there wasn't any point anyway.

It wasn't really going to be of any help to us because it wasn't, it wasn't going to change any decisions we made or the way that we led our life. It wasn't, the testing isn't conclusive enough. You know, that, we were told that, “Even if you are found to have the SOD-1 mutation, then you may well not go on to develop it.” So we didn't find that it was very helpful. And it wasn't an option to us anyway in the end.

When you say it wouldn't affect any, any decisions that any of you made, is that also true about having children?

I think… well, [husband] and I did go and see - oh - my husband and I did go and see a doctor that specialised in genetics and he - just to talk about this issue when I was first diagnosed. And we felt that the, if we had the test, it wasn't going to give us enough conclusive evidence. And also for us, having children when I'd already been diagnosed was going to be too much of a bigger strain. I think for my sisters, we - I don't think it would have affected their decision. I think - although now, in hindsight now that I've been, been diagnosed, I don't know. We haven't really talked on that level. Although I know that within the family we're all very keen to kind of stamp out the gene. And if testing is going to allow - the research into testing is, will hopefully allow decisions to be made in the future that will really help stamp out the genes, mutations, or you know - and embryonic testing and that sort of stuff.

She had a PEG fitted while her lung capacity was still good - the procedure was simple. So far...

Yep. So I had lung-capacity testing a few months ago, and that was to check that I could fly. It was also to check my lung capacity because they wanted to, my neurologist had advised me that it might be worth thinking about getting a PEG inserted. And she'd explained why, and that it was really to, so it was there to be used if and when I needed to. And if I didn't want it in the future I could have it taken out. But once my lung capacity got too low they wouldn't be able to do the procedure, and that takes your choice away. So I haven't made a choice as to whether I want to use the PEG or not. What I have made the choice is, I want to have that choice later down, later on and further down the track. The procedure was fine. It was very easy. The hardest thing for them was trying to find my veins, because they're just absolutely thin as anything. But the procedure only took about ten minutes, and that was all fine. It was quite painful for a couple of weeks afterwards, very, very sore, and it was difficult to laugh, to cough and to move. You know, it does affect a lot of muscles. But that was only for a couple of weeks and now it's fine. It doesn't really affect me. And I've been talking to my dietitian about getting a, a flat PEG which doesn't have a tube routinely. So that it's just literally sitting there flush against your skin and doesn't show through your clothes. So I'm going to get that done in a month or so's time.

Have you ever used it at all?

No. We, I have to flush it every day just to keep it clean, but, no, and I'm - no. It's just - I tell people it's just, just an accessory, it's just for show at the moment [laughs]. But I'm looking forward to getting that tube, you know, cut down and just, you know, not having that. It was a bit of a, it was upsetting to first see it and get over that. But that took a couple of days, and it really wasn't a big deal. You, with this illness you, you adapt and you move on, you know, and just as you've mounted the next challenge there's another one that comes along. So, you know, you just, you just do.

The occupational therapists have been key people in her care. They help her plan what equipment...

I think, I think a point that I would make is that as I mentioned to you before it's not the doctors that really make a difference to my life with MND. It really is the, the therapists. So it really is the OTs, primarily for me the OTs, and, and now the carers, really. And it's those hands-on people that day to day make my life easier and things more accessible. The doctors aren't - it's not that they're no use to me - but they're, they're not crucial in this illness at all. But the OTs and having a good OT and having a good relationship with them, really, I've been really lucky with the two OTs I've had. Having a good relationship with them is, is really good. And it, and it feels like, they've both made me feel like they're only working for me. And I can ask them for anything and, and they'll do their best to get it for me. And that I can try anything as many times or, you know, and, and that's really great.

Because they are, little things do really make a difference and open doors for you, literally, and, and make your life easier. And come up with suggestions. It's very difficult for them because they need to suggest things to me equipment-wise before I might want to face it, but before I'm struggling. So it's not easy for - I don't envy their position, it's not very easy. But having the guts to say, you know, 'Have you thought about?' certainly when I was first struggling with walking, 'Have you thought about a frame? You know, that would allow you to get over being able to take a drink through to the balcony.' I would have resisted that at first. But then it's plant a seed and then, and then, you know, 'Oh, okay.' Because otherwise you don't know what's out there. And so, and they're really that, that link. So you might be struggling on with something, yet they could just say, 'Oh, why are you struggling? You could, you know, we've got this little gadget or that little gadget.' And things, equipment does make a difference.

Having a catheter has given her greater freedom to go out. She no longer has to worry about...

Something that's been, made quite a big difference to me and my freedom has been having a catheter put in, actually. Again we did that for the flight, for the long flight. Lifting me into a small airline toilet is not that easy [laughs]. And my husband and I have done it once before, and it does cut down on your enjoyment of Business Class if you constantly have to worry how many glasses of champagne you can have before you need the loo. So we, we thought we'd wipe that out. And I had a fantastic hospice nurse in Auckland, who I'd built up a really good rapport with, and, and she really, I'd always thought that catheters were a big deal and that you couldn't really have a catheter long term. And she said, 'Oh, no, no, they're not. You've got to be careful of infection and you need to drink more, but it's not, it's really not a big deal. And if you don't like it, you know, you can, you can have it removed.' 

So having built up that trust with her, I had one fitted, and it, and it's been great, because what it now means is that I can go out with anybody for the day. I'm not restricted to only going out for two hours before I need the loo again and, 'Is there a disabled loo? And is there someone strong enough or even that I'd want to help me to the loo?' That's, all of that kerfuffle has gone. And it, and it's great. There are some downsides. It's, it's tubes, it's plumbing. It, you are sitting in your chair, really, for the day then. You're not being picked up for, two or three times a day. And, and I think that does in turn, can affect your, your bowels and make you more constipated. But that's, all of those things are small fry and easily surmountable compared to having to be pulled up and, and the indignity of people pulling your trousers down and'

Yeah'

'being able to do it.

'again, it's, it's sort of possibly slightly counter-intuitive, isn't it? That it, it actually makes you more dignified.

Yes, it does. And it, and, and now my father-in-law can help me and just, you know, fills a bottle for me from my catheter bag by just lifting up my trouser leg. And somehow, when it's in a bag like that, it doesn't, it doesn't seem personal. And it doesn't really - yes, it's, it's something that's, you know, it doesn't really mean like that you're, that he's helping me with toileting. It doesn't feel like that.

No, it's sort of removed, isn't it?

Yeah, it is, it is.

Yeah.

So in actual fact it's given me more freedom. And it means that I never think about how much I'm drinking. I can just drink away, have as many cups of coffee as I like without thinking, 'Oh, yeah, but if I have a cup of coffee now, then I'll need the loo in an hour. And, and my husband's got to go out.' All of that worry has gone. And that worry of, 'Oh, I need the loo. Oh, gosh, but, but I've only just asked for this and, oh, and she's in a really bad mood or he's in a really bad mood. Oh, God, I've got to ask them to' 'Or they're really tired and - don't, don't have any of that now. So that's given me a freedom actually. And, and you've got to manage it, but it, you know, it, it can work.

Having paid carers is fantastic because she doesn't feel guilty asking them to do things for her....

From your perspective, what was it like, you know, having other people come in to do care instead of your husband?

Fantastic. Because I could ask them to do whatever I liked, and I didn't feel guilty about it. I didn't feel guilty that he's got to do it all day. So I remember the time when we first got the carer in to help me in the mornings with showering and dressing, and it was fantastic. It was such a huge relief. Because we were finding that my husband would be helping me dress and shower and, and he wouldn't be dressed and showered himself till 11 in the morning. And then that would bother him, and I'd feel guilty about that. And that's, and that's just the start of your day, you know. You've got all sorts of other challenges to come. As soon as we had my lady to come in in the mornings, [husband] was totally freed up. And I would come out in the morning, dressed, ready - ching - and we could have breakfast together and start the day, you know, afresh. And then the challenges that we faced were manageable through the day. You didn't start the day with the biggest task. So that was nothing but positive, having care.

So it hasn't bothered you having somebody else doing the personal stuff?

No. I've, I quickly adapted to it, I think because by the time I took that on, we took that help on, I was really, [husband] and I were really at each other and were really ready to kill each other, you know [laughs]. So I was just glad for someone else to help and take that tension out, so that my husband wasn't my carer. And so it was nothing but a relief. The same, I remember the same feeling when I first used a wheelchair. 

We used to live in a house about 800 metres from the beach and it was a nice ten-minute walk. And we used to like to walk down and sit on the beach or go for a coffee at the cafe or whatever. And when my, when my walking became difficult, we couldn't do that any more. And I used to - you know, we could drive down - but I used to miss being able to walk down. So as soon as we got a wheelchair, 'Great, we can walk down again, and we can walk along the promenade.' And it allowed me and freed me up to do things that I hadn't been able to do. So I think because we'd left it relatively late, till things were getting frustrating, then actually it didn't become, it wasn't a big deal, whereas I know other people struggle with going into a wheelchair. But it, it gave me freedom in some ways. So, yeah, it's interesting.

That's interesting, it is interesting. And I guess, I mean in a way sort of having your husband do all the personal care actually becomes quite unromantic in a way.

Yes, yeah. And it wasn't that he was, wasn't good at caring for me. He was very good. But I didn't want him doing everything. And I'd feel guilty for that. And, you know, I'd, I'd ask him to keep the shower on while he was washing me, because otherwise I'd get cold. 'No, it was a waste of water.' Well, as soon as you get a carer in you can have it how you like, you know. So you don't get any backchat, [laughs] which when you've got people close to you is harder. And I'm finding that now as well where I've got a lot of support from our family here - phenomenal. I, I don't want to ask them to clean my bathroom or tidy my lounge or, or, you know, clean the kitchen. I don't, I don't feel comfortable asking people who are giving up their time. And I - but yet I'm quite happy to ask things of people that I'm paying, or that that is exactly what they're there for. It, it makes me, I feel like I'm much more independent, and that they really are an extension of my arms and I can tell them exactly how I want, want it. Whereas if I ask my, my relatives to clean the, the bathroom, and they don’t do it how I want it, then I would struggle with that.
 
Yeah, yeah.
 
And that would frustrate me as much as it not being done. So, yeah, it’s actually, I’ve actually found it good. What I haven’t found good with care is where the people change all the time. I find that really really hard. And that one challenge has been probably the biggest challenge for me, moving back to the UK and setting up with new carers is, I’ve set up through an agency to start with and I didn’t have a key worker. And I think I, I think I counted that in the first two months of being here I’d met twenty carers. And that is really dull, telling people how you want things all the time. And, “Not like that or like that” and, yeah, really quite tiring. When I, when I have carers in, I just want to babble on. And so that the fact that I’m being washed and dressed becomes irrelevant. You don’t even really think about that, to the point where you think, “Did I, did they put any deodorant on me? I can’t really remember”, because you were gassing on about something. And, and, but when it’s a changeover of people all the time, I find that hard.
 

She enjoyed a hospice support group in New Zealand but now she's back in the UK she's not sure...

I first got involved with the hospice in New Zealand, and I got hooked in by the offer of a free aromatherapy massage, because I'm a sucker for pampering [laughs]. So before I'd really had a chance to think about the fact that it was at a hospice, we were there going to have a little look. And it was a day hospice. And it was very, it was very small, and it was only about five minutes from our house. And it was lovely, and we met the, the manager there, who was just lovely, and I had a good blub with her for about an hour [laughs] and felt like we'd bonded and just really felt like it was another home. And gradually, and so I'd go for aromatherapy every week and, and then they also did facials and lovely things like that, and then gradually I went along to a support group that they were running on a Tuesday for younger people. When I say younger [laughs], I was still the youngest at 34. But it wasn't for elderly, which is sometimes the perception of hospice. So they were typically women with breast cancer or some kind of cancer, ranging from late 30s to 50s really. And we'd do, well, we had a sort of coffee mornings to decide what sort of things we'd like to do. And we did silk painting and making felt, and all sorts of things that I've never done, never had any interest in. But it was lovely. And it meant that we had a focus for being there together. And we'd gossip away and, you know, talk about where we were on holiday to next. Or sometimes talk about medication or the side effects we're going through, or just how we were feeling. And I really miss that group now. I was really reluctant to go at the start, at first. I didn't want to be around other ill people.

But after the first time I went I really enjoyed it. And I, I found quite a bond with those girls that, although they're completely different people and different ages, different interests, we had a sim-, we had the same outlook on life. Little things like, you know, we'd always be going on holiday. And, and when someone said, 'Oh, I'm off to Fiji in two weeks time' the other girls wouldn't say, 'Oh, aren't you lucky? I'd love to go to Fiji.' You know that you're not lucky, you know that you're making the most of the time that you've got. And it, just little things like that that weren't said. So I miss them. And, and so when we moved to the UK, I was very keen to make contact with a hospice here and that network.

I haven't yet. And that's just really the time that I've been here. I did get a letter this morning from the MNDA inviting me to an event. And I'm going to need a bit of encouragement to go. Even though I've been to - I had this same feeling before I went to the, the group at the hospice before and, and knew that it was, once I went it was fine - it still makes me hesitant to do it again. And also, probably more so, with other MND suffers, sufferers. Even my cousin, my cousin's also suffering from MND, and I'm hesitant about meeting up with her, although we've started talking on the phone more regularly, and I do, I really like that. I like that we can both rant on and we find the same things frustrating, and that someone really understands. But in the same way it makes me feel sad that I can talk about those things with my cousin.

Yeah, it's a bit of a mixed thing, isn't it?

It's a mixed thing.

Because if you go and mix with other people who've got it, you're going to see'

Further down the road, potentially.

Yeah, and - yeah.

And I think that's the thing that is scary. And I'm not sure how it will benefit me at the moment.

Aromatherapy helps her breathing. She likes massage and has tried acupuncture. Meditation makes...

And something that I've found that helps me quite a lot with that is relaxation and belly-breathing. And also aromatherapy oils, like frankincense and lavender. Just inhaling on those is really, it feels like it opens up my lungs and it stops me panicking about feeling like I can't get enough breath. And so also now that I've had that a few times and I know what causes it, I'm able to relax out of it much more quickly. Mm. 

Do you take any other alternative, complementary therapies?

No. I've, I've, it's mainly been aromatherapy. I've had a massage, particularly of my feet. I get very bad circulation and blue feet. Although people think that they're just very tanned, so I just let them think that, but actually they're blue [laughs]. But, yeah, they get, they get very cold. And it's, it's actually just really lovely to have touch, you know, the feeling of human touch. So massage is lovely. I haven't really dabbled into reiki or acupuncture, really. I've had a little bit of acupuncture, but only a couple of times. And that's just really more down to availability than anything. I think if someone was saying, offering me some and 'Can I come round and give it to you' then I'd take it. But, you know, I think I just sort of haven't, haven't really found somewhere on my doorstep or to make it easy. 

And I think in terms of those sort of things, I do, I do, I've done a mind-body-spirit course - a couple of those, actually, in New Zealand, and I've found them hugely supportive. They really, really have helped me, and really helped me think about life and things in a very, in a spiritual way. But not in a, not - that sounds heavy - but just in a very, opening my, it feels like it's opened my eyes, really, and has made me face a lot of things that weren't always that easy. But it's meant that I've processed them. And I think that's been much - you know, a really healthy approach for me. It's taught me meditation, and I do use meditation tapes, particularly if I have an upset day when I just sort of wake up and I'm just feeling really down, which I get every now and again. Again I'm lucky, I don't, it doesn't bog me down, but every now and again I'm just having a real down day, and, and if I put on a meditation tape and just do a half-hour meditation, I just come out the other, other side completely different and feeling much calmer inside, and stronger. So that's a hugely beneficial tool. And it, and that's what I felt like the course gave me, was tools to deal with things. It taught me belly-breathing, the value of water and, and just really the power of the mind really over your physicality as well. And really I know that if I did meditation every day it would be very beneficial for me. I still don't do it [laughs]. But I know that it's there to draw on if I need it.

She still enjoys her food and eating out, even though she thought she'd be embarrassed about...

I think one thing that, another thing that I found interesting, looking back on it now, is my approach to eating. And since my arms have become weak and I can no longer feed myself - I can't get a, a fork to my mouth - I thought, I remember saying to myself, and to my family six months ago, 'Come on, let's go out to a restaurant. You know, I want to, you know, enjoy it while I still can, because I'm not going to be able to feed myself soon. And then I'll feel much more self-conscious about eating out, and I won't want to.' It appears that that hasn't been the case [laughs] and that the food has taken over. And even though I can't feed myself, I'm still quite happy to go out to restaurants. It doesn't, and it doesn't bother me. Whereas I thought it would before, and I thought that that was something that I was going to have to opt out of. And that's just not the case. And so sometimes things aren't always as bad as you expect them to be, and other desires take over. [brief mobile phone interference] So I enjoy food too much to be worried about what other people are thinking or whether they're looking at me. It doesn't occur to me now. But that was something that I had to sort of just get over. Yeah, so that was, that's interesting, sort of looking back on that. And the same with being in a wheelchair - I know that my, my, my husband notices people looking at me more than I do. I'm able to kind of, well, look at, look in windows and I'm too busy shopping to be looking at other people. But my husband feels that. That doesn't stop him wanting to do anything, but - and sometimes it makes him angry - but he's kind of got past that as well. And it's just human curiosity. So I tend not to, I guess subconsciously I'm just not looking at other people, or their faces. Because it doesn't help me.

Her lung capacity is reduced but her breathing is still good. Occasionally she feels a bit out of...

It's not affecting my swallowing and my eating and drinking, fortunately. My, I did have a lung capacity test done about three or four months ago - yeah, about four months ago, actually, before I flew, to ascertain that I was going to be okay to fly. And they measured my lung capacity at 40 per cent. Although my oximetry is fine, so the lungs are working fine and my, my blood is fully oxygenated, my capacity is less. So I can't cough or choke. I'm quite pathetic. Shouting, I can't really do. And I do find that when I'm talking I will sometimes have to pause and, and sort of take breaths within a sentence that I wouldn't normally have to. I don't really get breathless, though. I get the occasional day, maybe if I'm a bit stressed or whether, if it's particularly humid or close, then I might struggle to feel like I'm not getting a full lungful. And something that I've found that helps me quite a lot with that is relaxation and belly-breathing. And also aromatherapy oils, like frankincense and lavender. Just inhaling on those is really, it feels like it opens up my lungs and it stops me panicking about feeling like I can't get enough breath. And so also now that I've had that a few times and I know what causes it, I'm able to relax out of it much more quickly. Mm.

Pressure on her heels was uncomfortable at night, but a ROHO cushioned insert helped a lot....

Sleeping has been quite a crucial thing for me. If I don't get a good night's sleep, then everything is so much harder. And what I did start to come across, probably over a year ago now, was I was getting pressure points on my heels from where I was sleeping. The rest of me was fine, just my heels. So we resolved that eventually with my OT in New Zealand, sort of having a ROHO insert on my bed - the same as a little wheelchair cushion, but just an insert for the bed, and just to put that under my heels. And that was fantastic. And I slept brilliantly on that every night. So coming here and starting on a new bed was really hard, because ROHO inserts weren't readily available through the district nurse. She either had a Memory Foam mattress or an air mattress, one of the electric air mattresses. So I tried the air mattress and just didn't get on very well with it at all. I found it very noisy. I found it quite weird that air was, it was moving all the time. And also just that it wasn't comfortable. It wasn't, 'Ah, ooh, I'm in bed.' It just wasn't like that. So I did try it for a couple of weeks, but I just wasn't getting good sleeps on it and would wake up in the middle of the night and just long for my bed back in New Zealand which I knew worked for me. So in the end I said to the district nurse, 'Look, this isn't working for me.' And she said 'Well, tell me what did work for you and find it for me on the Internet, and we'll get one.' And sure enough she did, and that's been brilliant. So I think one thing that I would say is kind of, 'If you know you've got something that works, then fight for it and get it.' And specially for sleeping it really does make a difference. And it's allowed me to cope with things so much better now that my sleeping is back on track. And that there are more options than just the Memory Foam and a, an air mattress, and not necessarily more expensive.

People seem to feel awkward about reaching out to touch her hand or place something in it. The...

Do you find that people talk to your husband rather than you when you're out together?

No, but - not too badly, actually. No, I haven't really come across that. I expected to, but not really. What I do find is that people will pass something to you, and I can't move my arm up to, to reach it or to shake their hand, but they won't bring it any closer. There's, it's really, really interesting. They've kind of got a, a physical barrier. And it, and it's personal space, isn't it? which they won't cross.

Is that even after knowing that your arms are affected? Because I just wonder if it's that people sort of think, 'Wheelchair equals legs.'

Yes, I think it is that. And, and so when people pass something to me, I'll expect them not to put it right in my hand. I'll expect them to, you know, leave a bit of space for my hand to then meet theirs. But then when my hand isn't moving or is just only, it's only moved its inch which it's going to, they're still very, very reluctant to put it in my hand. They just, they just don't know what to do. Yet my friend's 3-year-old came and gave something to me, and just put it straight in my hand. And it, so it's interesting. It's not, it's not till we're a bit older that we learn about personal space, and you just don't go past that. So that's frustrating, and I tend to, yeah, I tend to avoid those instances, and I, and I just get them to pass it to whoever I'm with. Because I don't need that, you know, I don't want that. I just avoid that encounter in a way. Yeah. And when people want to shake your hand or they come and greet you, yeah, I, I tend to find that people that are in the know will come and, you know, come straight to your hand straight away, and people who aren't are, are more hesitant or might even give up.

Yeah.

That's a bit upsetting. Mm.

Yes, it's a very difficult one, isn't it? Because I'm sure some of it is that people sort of associate wheelchairs with lower-half loss of mobility [yeah] and aren't kind of prepared [yeah]. So it takes them by surprise when you can't move it far enough to...

Yeah, and I do think that there's no malice in it. It's, it's just people don't have the experience of it. I wouldn't have, I wouldn't know what things would matter to me. But it, it's those little things. And it's, what I also find with, the most supportive people in terms of caring for me are those that can anticipate my needs and will ask me if I want things before I have to ask. So I don't - so I will, if I've got a friend with me all day or a, or a relative, I will much prefer it if they almost take responsibility for checking my bag, you know, and, and getting my catheter bag emptied, rather than me have to say, 'Oh, could you empty my catheter bag?' That's not nice for me to have to ask.

But - or for them to - I can't, I can't get anything for myself. So if they're not sat talking to me and the TV's not on, I'm not entertained. You know, if they go off and do something else, I'm not entertained, and I've got no way of reaching out for, to get my book or switch the radio on or, and so it's, again those people that are intuitive I find always notice that and say, 'Right, I'm just going to go and do this. Can I get you a book?' They'll, they won't just say, 'Oh, I'm just going to go and do that.' You know, they'll know that I, I need to be set up. Or, or they'll say, 'Oh, oh, you haven't, you haven't had a little nap' or something or, you know, 'How about we just make half an hour now and, you know, just have a bit of quiet time, or--' - but not in a patronising way. Or, you know, 'Can I rub your feet?' Lovely for someone to say, “Can you rub my feet?” I - because although they say to me, “We’re more than happy to rub your feet. Just ask me any time”, it’s another thing to ask. “I’ve already just asked you to get me a drink – ‘Get me this’ or, ‘Oh, no, not that straw, the other straw.’ Oh, now, can you rub my feet?” Yet for them to think of that and say, “Oh, oh, can I rub your feet?” that’s lovely. And it’s just little things. And they, and some people are, are naturally talented at it. And it’s, it’s lovely to see that.

She misses being able to show physical affection. Now she has learnt to ask people for a kiss or...

And it's something that my husband and I miss is, [tearful] aside from sex is being able to show affection. And that's not just to my husband - it's to everybody. 

Because you can't hug and?

[tearful] I can't even reach out or, and touch them or, so that physical contact is hard. And to cuddle my husband - he has to cuddle me. I can't just stroke his back or rub his shoulders or squeeze his head. All those sort of tender loving things, I can only show it through words and my face. And that's hard. And I've kind of learnt with other people now that, I just ask, and when I'm having a close moment with people and I want to feel closeness, I'll ask them, 'Oh, give me a kiss' or, 'Come and give me a cuddle.' Or with my god-daughter I tell her that - she's only 3 and she calls me - what does she say? Not poorly. Yeah, she says I'm, 'Are you poorly?' And I say, 'Yeah, and that means I need extra kisses and cuddles.'

Her quality of life is still good, but she's starting to worry about what lies ahead. Her...

I think I'm very lucky, in that I don't dwell on it [tearful]. But it does occur to me, and it does scare me. And I think, you know, sometimes when you, you see - certainly meeting doctors for the first time and explaining my history and telling them that I've had it for three years, and their response is, 'Well, well, that's good, isn't it?' And I kind of think, 'Well, it was for the first two, and now it's getting harder,' [tearful]. I still, I still have a good quality of life - very good. But I do worry that as that diminishes the progression will still be slow. And that worries me.

Have you actually put anything in writing about your wishes, or [shakes head] - no?

No. I think I've - it's only really started to occur to me just really in the last three or four months - and not in an overwhelming way, you know, just every now and again, and it won't upset me. Every now and again I just sort of think, 'Hmm.' Or, you know, little things like, 'Ah, so I am going to have to think about winter. Hmm. I was only banking on having a summer to summer, and you know, hmm, winter's going to be hard. Hmm. I would rather really opt out of that.' So not all of it is heavy thoughts, but it is starting to occur to me more, and it's something that I'm going to have to face. And I think it's just something that I've been working through, as I've been thinking about, 'Oh, right, Rilutek. Right, will I start taking that? And actually, hmm, no. Why, you know, why, why would I, maybe?' And it's not that I'm, I'm suicidal or wishing my life will end, because every day generally I have a lovely time. And, and I think, 'Phew, I wouldn't have wanted to miss that.' But it's worry for the future. I think if I really push myself on it, yes, I am, and worried for what my husband's going to go through as well [tearful].

I, do you have views about what you'd want to do?

No, that's too far away, far too deep. No, I haven't really got that far at all. I haven't looked at what my options might be. I'm quite a shallow person, so I'm quite able to keep myself in the moment, [laughs] and as long as it's sunny I'm happy. So, yeah, I think about the nice treat that I've got next round the corner, yeah.

Yeah, I'm, I was brought up Church of England and, and was in the church choir. And that was a very strong - my parents have both got very strong faiths. But I don't, that doesn't really do it for me. It's really more a, yeah, I'm much more neutral, I think. But I, I do think that it, it sort of, having the illness and doing the course [a 'mind-body- spirit' training course] has made me think about life and what life means. And what, I kind of get things in perspective and that, although I've got a very obvious illness and obvious baggage to carry around, everybody has in some way, whether it's emotionally and something, or something that doesn't have a label on it, or whether people are, you know, do have an illness. You know, everybody's got something. And, and that in turn allows you to see what is rich about life. So if, if you didn't have death, you didn't have disease, then you wouldn't quite see the richness of life either. And that helps me, yeah.

As a bigger picture, that helps me. And the smaller things, when I can't reach things or I just can't do things, that doesn't really help me [laughs]. That's just bloody frustrating. But there's a bigger picture, yeah, and that gives me calm.