Jewish Health

I had a pretty wild life. I had a lot of fun. I married and I came to live in England and I eventually got divorced, and then I had a number of interesting relationships and partied hard, and worked hard and built a career. I felt that I was doing everything double-time though. I felt like life could be very short. There was a constant Sword of Damocles hanging over me. Every year I’d go for these checkups, well initially it was more frequently than a year, but then after five years, it was annual for about twenty years.

 

There was a movie out recently called the “The Bucket List”, well I was making bucket lists long before that movie, I made a list of all the things I wanted to do and the people I wanted to see and acted on it before I kicked the bucket. Some of them were very simple things like being with my family, which I always knew was really important. What comes very much to the fore is the people you love; they are more important than anything, for me. 

 

There were some experiences that I wanted to have. I wanted to see the Grand Canyon and so I did. I wanted to see the two big Botticelli paintings that I’ve adored all my life again. And I did. And so on. So I had lists like that but, after that year I started to take the years for granted.

 

Something I’ve always wanted to, don’t ask me why, well I know why because both my girls went with the school to Auschwitz and I was very intere… obviously being Jewish, very interested in it, and once I heard what they had to say about it and everything, I thought I want to do that, and I think every Jewish person should do it, that hasn’t been, because it’s just, now I’ve been, I just, it’s just ‘oh my God how that ever happened?’ And to anyone, regardless of colour, faith, whatever they are, it should never happen again. And unfortunately in the world, even now genocide is happening and I just think it’s just, it’s just awful, really awful, and it really got me. 

 

But I did think to myself, building up to going to Poland because when we came out the room, when I was told I was in remission and the professor had said about doing everything now, but at that point, I think my brother would have paid for anything, because he was just so happy because we’re very close because I was okay. I could have said the Seychelles. I could have said I’ve never been to Dubai, I haven’t been to India. I could have said anything. No I said Poland for the day [laughs]. But I’m glad I’ve been. Now I’ve done it I’m really glad that I said that, because probably prom… because he wanted to do it for me, it did make me do it, so I’m glad. I’ve got that off my bucket list.

 

This certainly coloured my life. I have been much better in the last ten years. I have been able to do things like go to the gym which I certainly wouldn’t have been able to do previously when I was going to the loo ten times a day, and, I suppose made me sufficiently angry that I’d been ill that I would smoke and party a lot, because I just figured that your health was not within your own gift in any event.

 

So it was hugely debilitating for many years, but you crack on, and you get on with it, and it doesn’t give me any difficulties at all anymore.

 

You get on with it to be honest. It doesn’t make any difference. I don’t think… it didn’t stop me being employed, and the lifestyle I was leading at the time, I was partying hard, so you know, I was in no way invalided by going to the toilet ten times a day. And at the time I think it just shows how you are in life, you get on with what you get on with it, you don’t actually acknowledge that you have a great, you know, that you have a great difficulty. I mean yes, there’d be some days... there’d be some days when I’m sure, my functioning, the utility, the only way I could work was hampered by, I’d frequently go to the toilet six or eight times a day. I’d frequently have about twenty minutes feeling weak after I’ve been to the toilet. But it doesn’t actually stop you doing it.

 

One of the main things was the way I treated certain people. I really found out who my true friends were at that time, and they were absolutely fantastic. But there were a few people who I felt just weren’t there or went out of their way not to be there as such. And I, I, don’t need them in my life [laughs]. I mean they weren’t close people that I saw that much of, but I just thought well no, you know, if it had been them, I would have been there for them. I wasn’t expecting them to do anything. Just the occasional phone call that sort of thing. And that was one thing, it did change how I related to some people.

 

And also to start with, I decided I wasn’t going to get stressed over silly little things anymore, you know, just be thankful to be alive etc. And I kept that up for about eighteen months which I think is pretty good going [laughs] because I do get stressed quite easily. 

 

And those courses of steroids have taken their toll on me in other ways that are probably just becoming to come out now in middle age. Oh I’m middle aged. That’s a thought. [laughs] But I haven’t been taking steroids constantly over the years. I’ve probably in 35 years only taken for a total of about five years. So at a guess. So …But once I had those, the steroids and the other medication I did recover very quickly I think, because they do work very quickly. And I certainly was able to go back to school, do my O levels, and didn’t really look back in any serious way after that. Although it’s always there in the background.

 

 

Right.

 

 

Sure. It’s never stopped me from doing a job. I’ve never wanted to do the kind of job where perhaps having Crohn's Disease would be a problem. I should imagine in an active, very active kind of job it might have more of an impact. But it’s hard to describe, it’s a part of you which is always there, and you can ignore it for most, in my case, I can ignore it for most of the time. 

 

Every now and again some people say to me, “Oh you have Crohn's Disease don’t you?” And I have to think, oh yes, that’s right, I do. And I think as I’ve got older that its become, its come more to the front of my consciousness, than when I was younger. But it’s always there in the sense its part of you. Even though you may not feel ill, it’s not something that goes away. So, it’s a bit like having a foreign body in you. When somebody suffers with cancer they, they say the same thing, there’s something in there, they may not be feeling ill on that day, or they may be in a period of remission or whatever it is, but it’s still in there, and you can forget about it for some of the time.

 

Stewart' And this is how we look at life these days. Anything further than the end of the year, we don’t, we just have take it as it comes.

 

Marilyn' I was always a great future planner and I could tell you what we were doing all next year, because I work like that. I plan my years. But now, we really, can’t plan. Basically because of the tired… the tiredness that it’s left. And you just can’t plan anything. We actually went out last Sunday for two and a half hours didn’t we?

 

Stewart' Hm.

 

Marilyn' Out the blue. Because the weather was good, and when you came home you had to go to bed didn’t you?

 

Stewart' Hm.

 

Marilyn' And we’d only gone, what thirteen miles.

 

Stewart' Well we was out, I drove, what 25 miles I suppose. But it took it out of me, but it’s better than sitting at home, watching TV all the time.

 

Marilyn' Yes. We still have to think about what are we going to do? You know, and that comes up in now as second nature. If we know we’re going somewhere he’ll think well yes, okay, I can do that, but if I do that walk am I going to get back? Am I going to be really tired? So you have to think more. You really do. And, it is you take, you can’t plan. You cannot plan because we went to a wedding didn’t we, and you really had difficulty in staying there.

 

Stewart' oh yes.

 

Marilyn' And it was a day in bed the next day. You know, he’d had a rest in the afternoon, but we got to the wedding. We left at 1 o’clock. We got home about midnight. And he wouldn’t, he was totally wiped out. He was green. And people don’t understand, because they look at him and they say well he looks all right, why isn’t he going out to work? And you get to the point, you can’t say any more, but how many times can you tell people what you see isn’t what you’re getting? And I think that’s the important thing.

 

Stewart' Well I think it’s all taken so much out of me, I think what the doctor tried to explain is that because of my age, I haven’t got the years in front of me, to build up what I’ve had of the years behind me in strength and stamina which you build up over years. And because it virtually wiped me out I can’t get it back because I’m probably too old to do what I was doing 25 years ago.

 

Marilyn' It’s changed my life completely. I should have retired a year ago. I can’t see me being in a position ever to retire. I’ll get too old for my job and they’re going to ask me to retire, and that’s when I’ll retire, when I can’t do the job any longer. But it’s changed our lives hasn’t it? Completely.

 

Stewart' Oh yes.

 

So, in that six months. So I mean I was eating like there was no tomorrow. So I was playing five a side and a lot of tennis. But it still wasn’t enough to lose the weight from me eating. So I took up marathon running which I enjoyed… so that was… I became quite compulsive. And I enjoyed the pain which you get when you’ve run 15 miles. I went to New York, Berlin, Paris. I loved the big city marathons. I ran about ten London marathons and I was never told that the, having Crohn’s affects the calcium in your bones. So they were never formed properly, so therefore my body couldn’t take the pounding of pavement that I was imposing on my body. So having run twenty marathons in what fifteen years I remember my last London marathon was about seven, eight years ago. I didn’t, I didn’t realise till the last week before that marathon that I was struggling bending down doing my shoe laces, because I had terrible pains in my hips and I put it down to my shoes weren’t good enough, so I bought new training shoes. 

 

But I realised there was a problem and after the run I went to see a doctor and you’ve got osteoporosis and you’ve got arthritis, what you’re doing is no good, you’re pounding pavement, you’re running 80, 100 miles a week on pavement. I wasn’t running on soft ground in parks and yes, I went to see a specialist. I’ve got it in all my hip bones and joints from my tennis, I’ve got it in shoulders. Yes, I’m weak. I’m weak in all the joints, and that’s something else Crohn’s caused. 

 

So I had to give up marathon running. I carried on playing tennis and I played quite a good standard, a good game and I like a long hard tennis match, but the twisting and turning was hurting my hips so much, that there was one tennis match I played for three hours, really tough and I couldn’t properly walk for two days afterwards and I had to give that one up as well. So I took up cycling which I still do now. I quite enjoy it. So I do, desperately miss the sport.

 

 

And I just get on with it. As I said there are good days and bad days, and the bad days I feel nauseous quite a lot or just feel down. And the good days I can do things, like going out. So, yes, I’ve also got a carer twice a week. So we do go to the gym together and I do exercises. And I also go to [place name] with her sometimes and I hope to go to the cinema maybe and take things from there. 

But it also depends on how I am on the day whether I do go out into town or stay in.

 

 

No it’s always in the same place, sort of on my left hand side at the top, you know, sort of under my waist, and then it sort of spreads across the stomach. And, you have these griping pains. I mean the times when they’ve really been bad, they’ve felt like contractions, you know, really sort of gripping. 

 

And, this time also my bowel was twisted, so, and if I have the pain I’m aware of it when I’m walking. My inner, certainly with my left leg, I, I am aware of it. And when it’s been really, really bad, if I sort of bend over like this, it’s as though you’re sort of crushing something. Because of, you know, this is all the inflammation, plus a lot of the time, you want to go to the toilet, you have diarrhoea you know, maybe three, four, five, six times and sometimes that’s spread over a day. When I’m well I would probably want to open my bowels three or four times, usually in the mornings, then at night. So what I find, if I’m going out, I need to know where there’s a toilet because when you want to go, you want to go. It’s quite hard to control. So... and certainly when I go on holiday, you know, one of the first things you do is check out, well where are loos? And there’s always this worry, if you’re going on say a coach trip as it were, are they going to have a toilet? I mean most of the time you don’t need it, but you need to know it’s there.

 

 

Yes.

 

Yes. That’s a difficult one, because you want to be a well person, and if 95% of the time you are well, you don’t really want to think about the other 5% of the time too much. And, when it is 95% of the time you’re well, you can actually just say, you can pretend and say, “I’m not ill. I don’t have this.” It may be lurking in the back there somewhere [laughs]. But there comes a point where you, you have to say, “Yes, I do have this. I do have to, you know, hands up to it.” And that’s taking control, I think of it. But it’s difficult. As I say you don’t really think of yourself, or you particularly don’t want to be seen as an ill person. And more in the last eight or nine years, I have more reasons for not wanting to be seen as an ill person, because my husband’s first wife was, died under very difficult circumstances and I don’t like the thought of him having another ill wife basically.

 

 

Not really. You know, unless you’re on familiar ground. I mean if I go away as I said, one of the first things that I will do is find out where there is the toilet. One of the things I used to... what is it? There’s the Crohn’s, National Crohn’s and Colitis thing and at one time, I belonged to that for a while, then decided not to continue. And one thing they did do, they would issue with a card, you with a card, saying you know, please let this person use the toilet, because you know, they have an illness and that sort of thing.

 

I never used it. I think partly the fact, I probably would feel, yes, would have felt too embarrassed to use it. But maybe, you know, if I was that desperate... I remember last summer I was in Lithuania and was staying in, in the hotel, fine, and usually it’s okay if you are in, you know, a restaurant or a café. Anyhow nothing seemed to be open, and you know, I’d gone for a walk for a while and I had the urge I needed to go to the toilet very, very quick. I sort of looked round. I thought do I knock on someone’s door and I can’t do that. Then there was some workmen and you know these portaloos? And I thought shall I ask them. Am I that desperate? Anyhow I thought, no, no I can’t do that. And I just about managed to get back to the hotel in time. But you know, it was, you do feel pretty desperate. And… so …

 

It does affect your life a lot. It’s not just what you can’t eat or can eat, because being Jewish affects that but it’s that you are so aware of not feeling well and having pains. I’m sure this applies to people with cancer and all sorts of things. And also what I haven’t mentioned apart from the colonoscopy. One of the side effects, or one of the effects, is that it affects your bowels, so that you go through spells when you can go ten times in the day, pass motion ten times in a day and then you might get constipated. And then, so you can be caught out and that affects you too, because if you go lots of times in the day, you’re quite exhausted at the end of it [laughs]. That’s it yes. I didn’t mention that I should have done. It’s quite an important component of it.

 

 

Inasmuch as my husband and I like walking and I can’t walk very far because I haven’t got the energy to, so that’s changed it. We don’t eat out very much. We weren’t great eaters out but like yesterday we went to a lunch time concert in London and in the past - it finishes at two - we would have gone out for lunch. And it’s not worth it because most lunch times things are with bread, or you know, or pasta or something and it’s such a palaver, I said, “Well let’s go home.” So its affected that. And we had, we had intended to go away for the weekend to one of the cities on the continent, Budapest, but I decided if you go to a city how far do you have to walk to see anything? So it has affected our, our life in that way but not so terribly, terribly, you know. I wouldn’t book a holiday where the diet was restricted inasmuch as, you know, it would be a waste of money, a waste of time, not being able to eat things and not having, not having food that you can eat. 

 

The Crohn's Disease is still there. And the bowel works frequently so that I have to empty the stoma bag, could be somewhere between eight and twelve times in a 24 hour period. Which is a bit… well I’ve got used to it as I say. But it means that if I travel I have to be a bit careful. I have to try and make sure that I’ve got supplies, and possibly a change of clothing with me at this time. It hasn’t stopped quite drastic accidents happening which again I’ve kind of got used to dealing with. However traumatic, it’s a case of having to, and so you get on with it. 

 

I have an illness called dysautonomia which means you have trouble with your immune system. And I don’t get tears like other people do, and I have trouble, well I used to have a lot more trouble when I was younger with my oesophagus and things like that and episodes where I used to get rushed into hospital and things like that, and really life’s been….

 

In the last twenty years of my life has got much easier than it was when I was growing up, when I was a kid and a teenager and things like that. So, it wasn’t… I’m an actor and I try and do as many different able things, as able bodied people do, to try and just lead a normal life. And not, but sometimes, you I sometimes try not to think about the illness and sometimes there’s things that bring you down and you can, well I don’t know if all people with, with dysautonomia like me get depressed or gloomy. They probably do. I mean all people with dis… disabilities probably do get blue sometimes because you do get very frustrated and you can’t do things like other people do. Like you can’t just go out the house and hop on a tube and hop down to the airport and fly off somewhere without having to organise things which is a bit annoying. You wouldn’t be able to do that, so … So … that gets very frustrating.

 

Then there’s other things that you enjoy, you know what I mean, I could still go out and do things like normal people do. Have a very good life and I’ve been very fortunate with life and it’s…