And also clearer information about diet because my family now, we’ve all started kind of looking into things and reading, you know, if we shouldn’t eat, all of people say, ‘Oh I have problems with my joints if I eat tomatoes,’ or ‘I have problems with my joints’ and it’s kind of annoying in a way because you think, ‘OK, it’s a different thing, you have to realise that. And I’m, gone on a decaf diet now, I’ve been on having no caffeine since about June because someone said, ‘Oh caffeine can, you know, not trigger RA but can cause joint problems. And I’m sure it’s not true but I just thought well let’s give it a go till Christmas. And so, just, yeah, just information if there are any good things you can eat or not or if it’s just an old wives tale. I mean, I got a book called one of the books I bought were called ‘RA, What you should eat,’ or something and it’s got a whole load of recipes in them. But they’re all, like you know, I thought, ‘Why have I bought this?’ once I’d actually looked at it because it’s all the same, you know the same old thing [laughs].

And tell me, have you noticed anything difference, giving up caffeine?

It’s probably not helping with my tiredness [laughs].

I was going to say that.

[Laughs] It’s probably not helping with that. Otherwise not, no not at all. I think I didn’t really drink a massive amount of coffee anyway I drink more now that I have decaf I think than I have ever. So, no, I haven’t. But then I’ve been on the medication and had steroid jabs and stuff so you, it’s impossible to measure if it’s the caffeine or, I’m sure it’s the drugs rather than the caffeine [laughs].

Diet, exercise, yeah, just general activities I think, because there’s so much, and I worry like, it sounds ridiculous but if I’m carrying a heavy bag on my shoulders I think, ‘Oh,’ you know, I don’t’ want to get that pain again that I had in my shoulders so I think, ‘Oh is that going to set something off?’ And I’m sure it’s, you know, medically it’s not going to at all but, you know, I have those worries. You, you’re always thinking about things because you just don’t, I’m sure that anyone’s whos got RA can remember when they first got and just the pain and the immobility you have and everything else, you just, your worried that you don’t want to set that off again. And so I get, when I go to aerobics and I can feel my shoulder starting to go I kind of stop doing things with my arms and everything. And it’s probably more paranoia than anything else, I’ll be honest with you. But just again. Just having that type of information found out would be really helpful.

Yeah. I think, well I think the only thing that’s managed to control mine was initially the steroid jab which just took away the symptoms and that just gave me a new lease of life. And the Methotrexate again has just given me a new lease of life.

And, in terms of diet, as I said, I don’t know how effective that it, there aren’t many, even any studies to say, I don’t think, how effective that is. And I think just looking after yourself and just not overdoing it, I think before I wouldn’t worry about being overtired and things whereas now I do worry about it because I don’t, I worry about I’ll get a flare up and I’m going to run myself into the ground and end up having to go for more blood tests and all the rest of it. So just looking after yourself I think.

You know, I drink lots of water, I eat lots of fruit and vegetables. I don’t drink coffee or tea. And we eat mainly organic I would like to be able to, I don’t smoke, I would like, I do drink wine.

I certainly don’t think that if you are, you know, you’ve got to think about things like being overweight. If you’re very overweight and you’ve got rheumatoid arthritis then it’s putting more load on your joints than you should be so it’s, it’s good to try and, you know, eat a balanced diet and, and not to eat to much of the sort of foods that are going to put weight on.

What I found was that if I really fancied a piece of steak, as long as it was organic I was okay and it was, it was, I was fine and I didn’t have a reaction to it. If it wasn’t then I would be bad, so there must be something within the chemicals that the body’s so sensitive to.

Red wine was a thing I couldn’t tolerate, but if it was organic I was fine, I wouldn’t, I wouldn’t have a reaction at all, not even a hangover! [laughs] So that was quite good, I couldn’t drink gin but I could have brandy or whisky and that was fine, but it’s something I don’t even have now I don’t even drink but yeah.

I think it’s something that people will have to explore themselves. I couldn’t even, one of the things I couldn’t even take carrots, that would affect me, and carrots you think what, I don’t what it would be within, again may be it’s the pesticides, maybe its something I should have explored with the organic, in organic. but yes, people if they have a bit of a flare up, just look back and see what’s happened over the, maybe 24 hours.

I used to find that the food used to affect me within a short space of time and it was so obvious that it was certain foods. Chinese meals, going out to eat, horrendous, never have one, you know, I love Chinese, God love ’em but I went out for a meal and I flared up and it was the monosodium glutamate in it so yeah. But some people are fine you know they sail through without food being a problem so but, people say, ‘How do you survive, how do you manage it?’, I’m thinking well I’d rather have a strict diet, not that it is now, but I would rather have that strict diet and be able to control the pain rather than having a bacon sandwich and know within 20 minutes I’m going to be in bed having everybody looking after me and not be able to move.

Now, let us talk a little bit about lifestyle in terms of diet, alcohol, drinking alcohol, or smoking or. Have you made any changes to your diet or?

I’ve always been vegetarian since my early twenties. I have noticed, if I eat a lot of dairy, it gives me a lot of pain in my wrists and my fingers. So I’ve been trying to avoid dairy as much as possible. I also know, if I drink wine, that it gives me more pain than normal, in my fingers, in my joints, in my wrists. Although I still have the odd glass of wine.

But, no, I was never a binge drinker. I would never go out and, and, and drink loads but to have a, a bottle of wine of a weekend, you know, and have a few drinks, but like I say, with my sickness, and with the methotrexate, I really feel like I can’t have more than three glasses anyway, I just feel like I’d be too ill and I feel really, really bad the next morning so it’s just not worth it. It’s really not worth it.

I have tried to go gluten free recently, well last year, and that kind of helped a little bit. I wasn’t gluten free long enough to find out how much it helped, but it, kind of, helped a little bit with sort of, weight loss which makes me think I’ve probably got an allergy to it, weight loss and joint wise, it wasn’t so bad on my joints.

So it’s something I’m going to look into again this year, and try and do exclusions and see how I get on. But I know the dairy is definitely a problem but so, I’ve been trying to avoid that and drink soya milk and have soya yoghurts etc.

And. But like I say, I’ve always been a vegetarian so and I’ve always recent, for the last year or two, I’ve had organic food as well, organic box scheme, so I think I eat pretty healthily [laughs]. So, I don’t know whether, really, there’s anything one that causes pain or whatever, but I feel the dairy and the wines affect, affect me.

My weight has always been an issue. I’ve always had a problem with it. I went to a dietician before I was diagnosed with rheumatoid arthritis and, as far as they were they were concerned, I was eating the right portions, the right sizes, I was eating the right stuff, but I just wasn’t losing any weight at all. I was exercising. I was going to the gym three or four times a week, you know, on top of just normal everyday exercising, walking and cycling and I really wasn’t losing any weight, so I, kind of, then decided it was probably down to allergies which is why I looked into the allergy part, and seemed to have found that, it looks like I could be allergic to some sort of gluten, and maybe dairy if it’s causing me the pain so.

I was advised at the hospital to start eating fish again because fish, fish oils are meant to be good for the joints, which I do do, but it’s not something that I particularly want to do [laughs]. But I do do it for health reasons but I don’t think it’s made much difference at all really [laughs].

I was advised no red meat but that’s my favourite [laughs], red beef or steak, blue if possible and I tried to eliminate that, I did try to eliminate that. The one thing I have found that I cannot eat is tomatoes. If I eat tomatoes, which again I like them in the fridge, cherry tomatoes and I just pick them up and eat them. If I eat them, I know the next day. I, they, it must be, is it an acid in them that just make you feel horrendous? And it just goes to the joints apparently so I have to just eat them few and, no less than often I suppose, or not very often yeah.
And when you say it goes to your joints – pain, stiffness or?
Yeah, just, you just, I think, I don’t know how you know but you just know you’ve eaten so I just avoid them if possible but I do still eat them but just not as many.

And I’d, I’d read somewhere that steroids, you know, you have to watch what, what you’re doing and, and I just cut everything out. And I went on to an even keel when, I don’t notice any surges now. So I, I, and I think since I’ve cut out processed food I’ve had a lot less flares and I haven’t had fatigue as much because there’s noth, you know there’s no giant leaps of one thing or another. So the fatigue is a bit easier to control, that in not having energy surges and then dips. ‘Cos it, it’s the dip that sends you into the flare not the surge.

But I do think the Stone Age diet was a lot healthier than our processed throwaway.
Oh, I’m hopeless on that.
Well I have my moments but the, the more natural I am, it’s like today, I haven’t eaten today because I was flaring and I’ll automatically fast for 48 hours if I’m flaring.

Gosh.

Yeah, and when I say fast, I’ll drink juices and vegetable juices and things like that but I won’t eat solids. I’ll just give my whole system a chance to calm down. And that actually stops it going from feeling like all niggly to next level up. And as I’ve got plenty of padding on me, I mean, I can afford to do it.

I had a friend who suffered with rheumatoid arthritis as well and she was a great believer in food, in the types of food that you eat as to its benefits with rheumatoid arthritis and she produced many books and forced me to read them and change my diet but it didn’t work for me I’m afraid, I had no success whatsoever, but for her it was a great, great success, but for me, I just couldn’t get to grips with it. It, it didn’t, didn’t seem to have any benefits to me, whatsoever. But she, she certainly found that it was a real, you know, boon to her.

There were different, different sorts of diets where you sort of go like on perhaps a fish type based background and things like that, or certain types of vegetables. There was a whole mish mash of different things that, that came out and were recommended that you could try them until you found one that was suitable for you. But none of the ones that I ever tried have had any success and I gave that up as a bad [laughs] job to be fair.

I thought in the early stages that I might be benefiting from it. It, it was fairly difficult because you had to begin on an exclusion diet with I had to live on grapes for two weeks. I had to come off all the tablets. He [the doctor] said it wouldn’t work if I took drugs at the same time, and you had to live on grapes for two weeks to, I think, to clear out your system and start from scratch. And he said in the early stages, he thought that I was benefiting from it and I believed that it was a matter of time if I stuck at it long enough, the diet and everything that I would actually begin to improve and the pain would go down dramatically. I did it for over a year;

And I think I got to the stage where I realised that the pain wasn’t, wasn’t going and that it was still, still very difficult to cope with and he started to mention things like that, for instance I could have a hip replacement. I suppose my hips were the worst thing then and so I realised then that it wasn’t going to fulfil all my expectations of a cure;

His diet involved a lot of raw fresh food. At the beginning the whole diet was raw food. After a couple of months, I was allowed to have a cooked meal in the evening. It excluded wheat and dairy products, cow’s dairy products, you could have goat’s milk. Also excluded meat, all red meat, you could have chicken and fish. That was basically his diet;

Well I tried, I tried the Dong diet. You, you can’t eat any dairy produce. You can’t eat any red meat. You can’t eat any fruit. You can’t eat anything with additives. Then, can you think of anything that you can eat? [laugh] You can eat fish, but you can’t have any sauce or any milk or no dairy products at all.

So you could have fish and vegetables, but with nothing on them which obviously contained any dairy products. You could eat nuts and that was about it. It was a mad diet and I spoke to my rheumatologist and he said well, it won’t do you any harm but it won’t do you any good. But if you feel that you like to try it, you try it and I did. I tried it for six weeks and it was awful. Just imagine – what you will take for your packed lunch then. Well I can’t have any bread, ‘cos you couldn’t have anything, well, could have any flour? You could have flour, I can’t remember whether you could eat flour, wheat or not, now. But I mean it was hopeless.

So you couldn’t have an egg sandwich or you couldn’t, I remember taking a tin of sardines and a packet of nuts to the hospital for my packed lunch [laugh]. Well, you can imagine, [laugh] well if I was to say that I lost a lot of weight and my insides were completely at war, for about two months after I stopped the diet and my joints were just the same [laugh]. But at least I’d tried it. Some, it worked for some people I think;

I never actually met anybody but well, you think if it means you don’t take the drugs, you can try the diet. I thought, oh I don’t know how I was gonna manage long term on this diet, mind you, but I haven’t tried anything else, no. That was my one flirtation with an alternative [laugh] and I went straight back on the hard drugs then. I thought, no I’ll just take the drugs, thanks;

Yes I’ve tried lots of different complementary things. In terms of supplements I’ve tried almost everything that anyone has ever said would help arthritis. I mean at the moment I take glucosamine sulphate and I take Osteocare which is a calcium magnesium supplement to help prevent osteoporosis. And evening primrose oil, those are the ones I take most of the time. I take gingko biloba as well and ginseng, but that’s to help me brain rather than my joints [laughs].
You obviously feel they have, the others have an effect?
I don’t really know. I find it very hard to tell with this disease because it doesn’t follow a set pattern. The only thing that’s guaranteed to make me feel better is to go on holidays somewhere warm and dry and sunny and swim in the sea you know its… I think a lot of rheumatic pain can be related to this damp, dreary climate that we have here and I don’t like the cold. Yes, so it’s very difficult to tell, for me to tell whether somethings actually having a, a dramatic effect.

Did you find any of the things that you took had a bad effect?

No, because I’ve always been very careful not to just pop a pill without considering and I considering what I’m taking and also I’ve made a point of telling my GP and or the rheumatology clinic exactly what I’m taking, I’m a great believer in everyone knowing what, what I’m doing. So no I don’t think I ever had any negative side effects.

I’ve also searched the internet and the web, finding out details about it and I also understand it’s a big spin off money maker for a lot of people in selling vitamins and supposed cures, like shark cartilage and oysters from, from New Zealand and green lipped muscles and things like that, which are a tidy price and if people are trying them out of desperation they can set you back quite a lot of money, and I’ve worked my through all those, so initially I was in a phase of, if you like, denial. I was searching for a cure to this problem and, and felt there must be one somewhere, even though they’d told me that I’ve got to live with this for the rest of my life and it would progressively get worse.

Probably the biggest cost has been me trying out every single herbal medication you can find on the internet that’s got anything remotely to do with rheumatoid arthritis. And they’re not cheap, and I bet you I’ve spent a few hundred or thousand pounds on those over the years, to no avail.

I take the ones, what I do take is I’m pretty convinced that things like cod liver oil are actually good, I mean one of the diets for rheumatoid arthritis and I’ve never tried a proper diet regime either, that’s one of my, it’d be difficult for me that, but it seems to be that those, that type of cod liver oil or oily fish like mackerel and things, seem, the doctors seem to think that does something and as does the gluco, glucosamine, crondite I think, I don’t know how you pronounce it, chrondroitin I think isn’t it, that seems to have some benefit as well. So I’ve dropped it down now to just basically those, I’ve gone through all the others and they’re no good, so there’s none left to try [laughs].