Is it just me, but sometimes when I am speaking to people and they always say ‘oh, you look so well, there’s nothing wrong with you’. does that happen to you? Yeah, all the time Me and Frankie love fashion, love clothes, love make up and we are not going to stop using them because we are ill and we have arthritis. I have really bad days and I have really good days. And on the bad days I can’t get out of bed, or I don’t get out of bed. Sometimes I am in so much pain and I just feel so down. I think that’s also when the feeling of isolation really sets in for me. Definitely, it does for me. You know, having to kind of lie there, sometimes for a week on end. Yeah, and you do feel a massive feeling of isolation I remember being in year seven at secondary school and my school was a sports college.
The teacher used to make me get changed into my PE kit, which took me like 20 minutes and he would make me sit at the side of the sports dome to watch and then he would make me get changed again and it was so isolating and embarrassing and it was making me feel like, ‘maybe I need to try a bit harder’.
And I used to try to cycle madly and I would really damage [myself] and I actually dislocated my hip doing it because I was really trying to prove to them that no, I’m not stupid. And that was a really sad fact and that shouldn’t happen. How do you two get on with ordering your prescriptions on a monthly basis? Because you know for me, it’s just a complete mall really having to order it online and then having to pick it up and then take it to the pharmacy. It is such a performance to do it. Well actually my pharmacy has come up with a brilliant way of organising repeat prescriptions so they contact your doctor’s surgery and sort out what extra meds you need and they ring you and say ‘do you need anymore of this medication?’ and then you can come and pick it up so it kind of cuts out the middle man, so it’s a really really good system. That’s really good So I would recommend that to anyone if they could ask their pharmacy. Yeah, definitely. Because I am a bit old fashioned.
I have got my Filofax where everything is written in and I sort of like star days where I have got to be running down to the doctor’s surgery and giving in my thing. A lot of the time my Mum is having to do it as well because I am too busy to do it. And it takes so long as well to get that well needed medication. And it is really annoying when it comes up as ‘you need to see the doctor before you can have this medication’.
And I am like ‘I am on it long term’. And you have got to go into the GP and have an appointment which is a bit of a waste of an appointment just to say ‘can I have this again please?’ Do you guys have a different diet, do you exercise, do you find anything that helps you that way? I try to exercise, but where do you find the time? It is really hard, I keep saying I will do it next week, I have been starting swimming from the new year that was my new year’s resolution and it has still not started yet.
Swimming, I think, is an amazing sport for people with arthritis to be honest. It is quite good for the joints. It is one that I find that I can do. And I feel quite good at it. It is one of those cardiovascular exercises which you can really exert yourself without causing damage, that pain. And also, getting into a pool with the heat of the pool is so soothing as well. It is nice. A bit of relaxation as well. Have you ever been to a hydro-pool? They are really great. I love that. Yeah, they are really, really good. Hydrotherapy is amazing. I go to the gym and I have a trainer so she helps me work out different exercises I can do that aren’t going to do too much damage or make me feel like rubbish the next few days Yeah, that is an important point. I don’t know whether it’s just me but I have a really bad habit of just ‘hmm, I want to know about that’ and I will just Google it for easiness.
Where do you look for information? I do exactly the same. I Google it. I think it is a habit. On my diagnosis, I was given leaflets by Arthritis Research UK from the hospital with information about the medication I was on about rheumatoid arthritis as a condition and I found them really helpful. Yeah, I did as well. They gave me quite a lot of information. There was a whole pack of information. About treatments, coping with it, that sort of thing. Self care Yeah, self care. Lots of things like that, which I found really useful A lot of people look online and there is so much information that is all different where as Arthritis Research UK has it quite nicely laid out and you know the brand and it is something that you feel that you can trust. And it is not too complicated either. You don’t want to be wading through a lot of information. You want to know quickly, what you are up against. Or how to take a medication. And that is really good. It’s very concise, which is nice. I found the NHS website really helpful as well, I don’t know about anybody else…
That is quite good as well. That has got quite a lot of information on about drugs as well as about diseases. Have you ever had any support from the hospital, in terms of – I know a lot of people don’t like it – but psychological support? I wasn’t offered any help from the hospital to be honest. I went off and found my own help. So I actually see a counsellor on a regular basis. And I find it really useful because I get quite anxious sometimes like with the pain and I think like having a feeling of anger underneath of being so young and being diagnosed with such a limiting disease And when I am in a better place mentally…
I think you are more equipped to deal with it. I think, ‘I have got this, but I can deal with it.’ I think you have got to be honest with yourself when you start on medication and you have got to be in charge of your body in terms of if it’s not helping, change it. There has been some medication that I have really struggled to cope with. For instance, methotrexate which we have mentioned before. I found that really hard to deal with, the sickness and everything I think it actually probably made me feel really down in myself in the long term.
The prospect of never having to take it again… I was literally skipping down the hospital corridor. You can do whatever you set out to do, whatever you want to do It might be a little bit different in terms of it might not be how you planned with the arthritis But you can get there. One thing I would say though is just make sure you look after yourself. I think we all forget as young people, we just power on.
And don’t be too hard on yourself. You are fighting something that not a lot of people are fighting. Look after yourself. Give yourself a break. Yeah, definitely. You know best, and I think people forget that. You are the experts, you really are the experts in your condition.
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