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She was shocked when recently (2007) was diagnosed with RA. Says that she was down and later angry but now she is determined not to be 'rule by it'.
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When you were first diagnosed, can you tell me how you felt emotionally? You said that you were upset.
Yeah. I was really upset. Because I assumed I'd be fine. And I was really upset and I was worried because I didn't know what, I didn't know anything about what RA was really apart from just the brief part the consultant had spoken to me about. So I was really upset. I was scared I think. I was quite scared because I didn't really know what was going to happen. I was really, I was worried.
Were you angry?
Yeah. I, not at, initially. Probably the first week I was just really upset. I was gut, I was really upset and I just thought, “Oh no, everything's going to have to change, you know. I'm going to be in this amount of pain for the rest of my life. I'm going to yeah, have big man hands and man feet forever.” [laughs] And I'm going to, you know this, that and the other. And then, I think, a week or two later I was angry and I was, just thought, “This is really unfair you know. I'm a good person, I haven't done anything bad, you know. I've tried to live a good life. It's not fair that this has happened.” Which I think, naturally I think most people probably go through that when they find out they've got something. And what got, and what I was saying to some people was I feel, I felt like, because you have it as far as they know for the rest of your life, there is no cure for it, I felt almost like you've been given a life sentence. OK, it's not going to kill you but you still have to spend the rest of your life thinking about things, doing things differently. You know, if you want to go travelling to different countries on the medication I'm on at the minute, you can't go to certain places because you're not allowed certain vaccinations. And so, you, I just felt like I'd been given a bit of a life sentence because you have to be careful for the rest of your life and you have to think about when you want to have children and you have to think about where you're going on holiday and you have to think, “Can I leave the country for two week because I have to go for my two weekly blood tests?” And now that it's gone to a month, that's better.
So, yeah, then I was really angry because I just felt it was really unjust. And then I kind of accepted it and thought, you know, “Oh we just need to work with, worse things happen, I just need to now get on with this, look after myself, get, educate myself the best I can and just see what happens, just look after myself and not run myself down.” I think it was probably a bit of a wake up call that you can't do everything. Yeah, but yeah, I definitely I was upset, angry and then kind of accepting.
[laughs] And your attitude now is to work with it?
Yeah. Very much, very much. And try not let it get me down. And try not make it rule my life if that makes sense. I try and, sometimes I'm so, prime example, I was really tired on Monday and I thought, “Oh I don't' want to do anything,” and my sister phoned me and said, “Do you want to meet up and go to the cinema?” And I thought, “Oh, I just can't.” I thought, “I'm going to do it.” You know, even, it doesn't matter if I'll be done in for the rest of the week I will, because you don't want to let it rule, rule things. So, yeah, now I'm just very much, I have days when I'm upset and sometimes if I'm talking to someone particularly about it or, I don't know what will trigger it. I will get upset about it. But generally you just, you think, “Well I'm glad it's not something else”, you know, so…. |
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After her diagnosis her employers and family have each helped her in different ways to manage her working life.
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How it has affected your work life?
Well I started a new job, I had the interview for my job and I got the job so I was going to, I was in London and I decided to move home to [city]… which turned out to be a complete blessing because I don't think I could have lived away and I've had this. So I am, moved home. I got the job, started feeling ill and I started the job but I didn't say anything to them I, well I said obviously I was in a lot of pain but I wasn't really sure what had happened. But they've been really good. In my old job they, they were brilliant and said any time you need off or anything else, but I didn't, I hate taking days off work so I got myself in there whether I was half paralysed or not. But they, they were really good. And my new job's been really good. They've said if you need time this, that or the other. But it's, some days again, just if my back, because I have to stand up all day and walk around, if my back's gone I find it really hard. Or particularly now, I'm just so tired it gets to, it's so hard to get up in the morning. And then I get home and I just can't do anything. And that's why I'm so grateful that I'm living back at home because I just don't think I could, you know, cook and clean and wash and do everything you need to do in a house that I've done for the past few years. The way I feel at the minute, you know, although I'm so much better I don't, I'm still not 100%, I still couldn't do that.
So in terms of work it's been difficult, really difficult, particularly starting a new job, because obviously you need, I've had a lot of work to do and you kind of want to prove yourself and be the person you were when you were interviewed for the job. And you do, you just get up, you get on with it but it just doesn't, it doesn't help with the tiredness and everything else …and with the pain and things like that, that you do have some days. But they're really good. And the kids are really good. If I've ever got my curaheat hand things on, they don't say anything. You know, I try and cover them but they don't, you know, they're really good. And they don't know why.
You haven't told them?
I've told my 6th Form because they were kind of asking questions and they would, you know, didn't bother. But, no, the rest of them, just said, I though, I had sore hands. Because, yeah, they don't, there's no reason for them to know, so, no, I wouldn't. |
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Her previous school allowed her to arrive late on those days when she had free periods in the morning. Her new school has asked if there is anything they can do to help.
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I went into work and I missed two days because I couldn't move and I went into work every other day. But literally I'd get in for eight and left at quarter passed three. I couldn't do anymore. And I just sat and spoke to the class. And I couldn't move. And I just, I got friends helped me get to my room, just walking really slowly, making sure kids didn't bash into me because of the pain. And then I would just sit there all day until it was ready to go home. And I just… because I didn't want to be have to calling in sick and the school were really good. But I wasn't going to calling in sick every day. And they also said, they were really good, they also said that if I had a free, I didn't have to go in, which gave me a… I had a couple of frees first thing in the morning, which meant I could sleep in until say nine o'clock and get in for ten o'clock. And that was a massive help. So I think talking to your employer is something that's really important, particularly in the early stages, before you're on the right medication. I mean people, different medications suit different people and before you're on the right medication, talk to your employer and make sure that they know because certainly mine were really good… really good before diagnosis.
OK. And the new employer also?
Yeah. Well I've had, I haven't had, apart from tiredness and sometimes my back and my shoulders will hurt, it's nothing like I was, nothing like I was. So they're aware of it. And they've said, “If there's anything we can do, then just let us know.” But I haven't had to… have any time off. But it just means some days I'll leave earlier or won't be as able to get as much work done in a day as I'd like. But other days, I'll be great. So that's absolutely fine. So I haven't had to have… since it's been fine. |
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She was diagnosed a few months ago and would welcome clear advice about diet and lifestyle.
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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 who's 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. |
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Thinks that before diagnosis her boyfriend thought she might be pretending to get out of doing work. Says that after diagnosis her family, boyfriend and friends have all been 'great'.
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Yeah, I think, well I think in the beginning, because I didn't tell anyone apart from, my, when I told my boyfriend that I was in a lot of pain he thought I was pretending because I was meant to go and help work for his dad and he thought he I was trying to get out of working. And I wasn't at all, I was in, he was kind of saying, “Oh, you're fine, you're fine.” I was saying, “No, I'm not.” And then after a few weeks he took me seriously and felt how hot my shoulders were and thought, “Yeah, there's something not right.” And because I kept it quiet I think it was difficult for people to understand and also it was difficult for people, and people would say to me, “Oh, yeah, I sometimes get sore, sure, sore shoulders.” Or, “I get sore hands.” And I was like, “But look at my, look at my feet, I'm having to wear size 9 shoes. All my shoes are a size 5. Look at my hands, feel them.” You know, “Feel my shoulders, this isn't normal”. I can't, you know, I couldn't move, I'd be kind of dragging myself up the corridor to my classroom. I'd have to sit down to teach because I couldn't physically stand. And I think it's, people do, or potentially could think, “Oh you're exaggerating” or something. But I think because I'm the type of person who was not seeing a doctor or not really ill people did take it seriously.
I think now, what you have to be careful of is, is saying, “Oh I can't do that because of my RA”. I think you have to be really, and I think there are things you can't do but you have to be careful not to use it as an excuse because I know when I'm tired sometimes you think… But then in another way when you're really tired and you're hurting you do have to cool things off and you do have to say, “Look, I can't come and meet… I've had to do, cancel weekends and just say, “I can't do it. I'm so tired I can't possibly drive up here or do this, that or the other.” And I think people have generally been really good. But I can see why people would have problems, I can see why people would say that that was an issue definitely but I've been really lucky. As I said, m y family are so supportive and my friends are fantastic, that I haven't, a lot of them don't really understand what RA is I think. All my close friends do, and they've been really supportive and they've read things and been fantastic but I think more distant friends who perhaps don't know or, you know, know a little bit, they don't really understand what it is so they're probably not as but I'm not really concerned about that to be honest with you. I've been very lucky [laughs].
OK. Talking about friends, how have they responded to… you being diagnosed?
Really, really well. My excuse me my friends have been great. My yeah, they've been really good and they understand if I can't go out dancing all night like I used to be able to, or I can't really think of anything else that I don't do. Like I can't trawl round the shops all day because I just get absolutely shattered and things like that. But they've been absolutely amazing. Absolutely, and my family have just been phenomenal as well. And my boyfriend like, I've got such a good support network, and, which is really good because in the start I was really upset and, yeah, they've been absolutely amazing. And I think you need that, I think that's really important. |
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Finds that magazines and books give confusing advice about lifestyle and RA and prefers to look at the ARC website. She is attending a meeting at her hospital and hopes to get clear advice from them.
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So I left and I immediately went to the bookshop and bought some books and what I found was with the books they were all American. And so I couldn't find any, it shouldn't really make any difference but I couldn't' find any British books. They were all talking about American charities, they were all very much in American lingo, and they were all, I mean, they were all quite cheesy and I didn't want that, I wanted something that was just factual, tell me this, this, this, this, about the disease, this is what you can do to help yourself etc. And I found it really hard to find that information. But ARC charity are quite good but otherwise I found it quite difficult I think to get information.
And I'm seeing the, they have like a multi-disciplinary meeting in January, which will be good because I'm, read in all sorts of books that you can't to do, you can do this, you can't do the other and there's so much conflicting information I kind of cancelled my gym membership, I was told swimming is something what you should do by these books and then you can't do aerobics. So I can go to aerobics and it does, I do end up hurting quite a bit after but, I just need some more clarity of what I can and can't do so I think that meeting will be really helpful.
These are the American books?
Yeah, yeah.
And there are things that say, oh you can't go skiing and skiing's something that I love to do. I'm sure I can, so it's just, I think that meeting's really going to help.
I don't know, I don't' know, I've got this one book called 'Plan to win' and when I first read it I thought it was really good and the first few chapters are all about what rheumatoid arthritis is, were brilliant and it's exactly the same as everywhere else. If you go on the Internet and you find out, you want to find out what rheumatoid arthritis it's really, really good, it tells you exactly what it is. And that's really clear. But what was unclear was what you can do to help because obviously the first thing you think of, “OK what can I do to minimise this effect, impact on my life?” And when you start looking at that, that's unclear, so some of them said, kind of avoid vigorous exercise, avoid anything that puts pressure on your joints, avoid team sports like rugby and football, anything like that. And they said swimming was the best thing you can do but then I was speaking, who was I speaking to? It was to a nurse, not in relation to it but just generally I was talking to a nurse and she was saying, “Oh no, you should be OK to do skiing and things like, skiing and things like that”. So that's what I found difficult. And that's what I said to the consultant, he said, “Well you need to go to this meeting and that will clear everything up.”
So, who is going to be at that meeting?
It is, I've got the letter with me actually here, so a physiotherapist, an occupational therapist, and someone else, let me have a look. There's three people, it's a three-hour meeting.
It is the practitioner, physiotherapist, occupational therapist. |
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Talks about the changes she has made to her social life following her diagnosis and the advice she got from her consultant about drinking alcohol.
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Well I do drink alcohol which you're not meant to do. I don't drink in excess, and I would only ever drink maybe once a week if that, but it's changing those routines, it's just changing, and changing with your friend as well because I'm sure most people, 25 years old and when you meet up with your friends it's always for a glass of wine or a cocktail or something. And changing those routines I found, the first three months I was really strict and I didn't have any at all, anything at all and I wasn't feeling well so you didn't really have to go out or anything. But now that I'm feeling much better and I meet up with my friends I do want to be able to have a drink and I do. Now, I just think I'm not going to worry about it. And the blood tests seem to still be fine so [laughs] But just not to excess, I think it's just everything in moderation.
So, weekends, I normally have quite busy weekends. Although I have like one busy weekend, one quiet, one busy, one quiet. Because I know, but I'm 25 years old now, and I'm young, I want to be out enjoying myself. And I don't think just because you've got RA you have to be, you have to be sensible and you have to make sure that you don't over-tire yourself because you, I don't' want to get ill with anything else as well. But you still want to make sure that you're going out and seeing your friends and doing things, that's real important. So I do.
And what have the doctor, nurses say to you about drinking alcohol?
Just that you shouldn't, well first of all they said you shouldn't drink it at all on the Methotrexate. And then so I didn't, and then I went to see, when I saw the consultant again last time I said, “Oh I'm finding it quite difficult.” And he said, “You can have, as long as you don't go out binge drinking, then you're OK to have a few drinks. That's absolutely fine.” And then that was it really. But like all the books again kind of really scaremonger. You're thinking, “Can't, you know, you mustn't even have a drop”. It makes it sound like I'm alcoholic. I'm not at all [laughs]. But it's just, you know, you understand, you're…
Yes…
…it's, it's a big part of our society
I think if I'd of suddenly woken up and I had to do that it would have been difficult. But before I was diagnosed I was in so much pain that just naturally I started pacing myself completely. I didn't work myself into the ground, I really cut back on my hours at work, I really cut back on socialising or things like housework or cooking. I very much relied on my housemate to do things for me. So it was kind of easy then to, to get into that. It's, what's difficult is if you do have a busy weekend or you have a really busy week at work you do just feel, you know, completely bowled over which you wouldn't feel, which I didn't' feel sort of a year ago, I was absolutely fine if I had a busy week at work. I could then go and have a really busy weekend, whereas now you can't. And so, I guess parts of that are difficult but again because I was just kind of weaved into it, it wasn't too bad.
You can't just think at the spare of the moment, you're going to do something. You really have to organise it. I mean I want to go skiing at Easter. Well we were going to go in February, I thought. “Oh no it'll be too cold for me sitting on the ski lift and things like that.” So you think, “Right, we'll go at Easter.” And it's just making those adjust, making those adjustments. And we have to go somewhere that's got other things because I won't be able to manage skiing all day, every day. You know, there's just, there's loads of examples that are just small. |
