How long have you lived with RA?
I think I had been living with RA a lot longer then I think I have, I was diagnosed when I was 18, but I simply went to the doctors for a fat joint on my little finger which I had for a few years and wasn’t going down. I used to get really really bad ‘growing pains’ in my legs when I was a child. I also have Raynaud’s phenomenon, and possible lupus. Which mean I have very cold hands and feet which I was told can come with RA.
What advice would you give to someone who has just been diagnosed with RA?
At the moment I’m unsure because I still feel I need some advice myself to be honest. I would say be honest and realistic with your body and don’t push it too much. I have a bad habit of if I’m ill with a flare up or any illness the minute I am feeling better I try to go back to normal like nothing has happened and I don’t give my body enough time to fully recover and end up worse in the long run. Now I have learnt that I have to be slightly more sensible with my resting and looking after myself. For example if I know I’m going clubbing on a Saturday and will be drinking and wearing high heels then Sunday all I have to do on Sunday to purely rest my body with my legs up, otherwise it’s a down wards spiral of tiredness, sleeping then even more stiffness and pain than normal.
Do you use any mobility aids?
I need to change my car into an automatic as I can’t drive a manual anymore due to the pain in my knees from changing gear. But normally No, but when I have a flair up I do need a walking stick or something to help me walk.
How has living with RA helped to improve your life?
That’s a very hard question, I personally can’t think of anything that it has helped me with; it does slow me down and irritates me on a daily basis. However I don’t take my walking and life for granted anymore and I appreciate ‘good days’ so much, because I know tomorrow I might be a ‘bad day’ and I won’t not be able to walk or get out of bed. I also have found out who my real friends are, I know who is truly there for me when I need it most.
Do you have any visible signs of RA?
I have swelling on my fingers which can be red and people say I ‘carry myself’ when I walk, due to stiffness and pain. When I’m in a flare up it is very visible because I am unable to walk at all or move ‘normally’ as it affects most of my body, feet, knees, hips and back etc..
Can you please describe some of your favorite coping strategies for living with RA?
Well this is interesting because recently I haven’t had any problem with coping with it emotionally until a few months ago when I started my current huge flare. Normally when I have a flare I do get very depressed, the only thing that does get me though it is that I know when I’m out of the flare I do automatically feel back to myself again. For the past few months I have found it harder to stay so positive, as my RA is gradually getting worse. I am a student nurse which I am finding it very hard to learn about the condition from a nurses few instead of a patients few. I do find shopping helps a lot!!!!!!!! (it is not the best form of coping for my bank balance) For me personally if I feel good on the outside with buying nice clothes, doing my hair, painting my nails, it covers up and takes me away from the feelings, the pain and the stiffness that is going on inside my body and makes me feel better about my inside self. I try and write everything down, write a dairy most days so I can let all my feeling out because they build up inside and then I explode. Also never stress over anything because as soon as I do, that causes a flare up and then things will get worse, so I try and stay as relaxed as possible.
Can you please describe your current medical (traditional and alternative) treatments?
I’m taking hydroxychloroquine and a large dose of vitmin D, which is helping me at the moment. I was on regular prednisolone and ibuprofen for pain, but a few weeks ago it caused a hole in my stomach wall, so I am unable to take them anymore. So now I’m on other medications for the hole in my stomach.
I also don’t eat Dairy or eggs any more, for a year I was able to control my RA with my diet which was really good. I now know instantly that I have eaten dairy, in about 30 mins or so I can feel the inflammation building under my knees. However at the moment I need the medication as well as my symptoms have been getting worse.
Is there anything else about yourself that you would like to share?
Only that I do try to live my life to the full when I’m on a ‘good day’ because you never know when it is going to be a ‘bad day’. I still wear my mega high heels, even though they are going to make my knees hurt. But in my few there might be a time in my life later on that I might not be able to walk at all. I would like to talk to any one of a similar age and get some advice with coping emotionally or anything. My Facebook page is www.facebook.com/holly.dennett.