Saturday 3 November 2012

Living with Lauren - The Reality...

The title of my blog is simply, Living with Lauren, because I didn't just want to focus on one aspect of my life, I wanted to be able to talk about all aspects as there are so many... Today, I want to start something new. Many people know me, but few know what goes on in my life on a daily basis. This week I had an experience that shook me so much I have decided to write a weekly blog explaining what daily life entails for a twenty eight year old sufferer of Juvenile Rheumatoid Arthritis. This way, perhaps people will get a deeper understanding of what people living with 'invisible' diseases go through every day, even though when you see them they may look and seem completely normal. For those of you who do know me, you will probably say that you would never know I'm in pain. For the last year (let's leave out the 26 years before that since I was diagnosed), I have been in pain constantly, as I have had a never ending flare up in my jaw, hip, knees and ankle. And when I tell people this they can't believe it. If people living with JRA moaned about the fact they were in pain, every time they were in pain, you would never hear the end of it, so we pick our battles I guess you could say. When we moan or say we're in pain, you know it's gotta be pretty bad. If we seem angry, it's because we're frustrated that we're in constant pain and can't shout it from the rooftops all the livelong day, however much on some days we may want nothing more. If it seems as though we are not paying attention or concentrating enough it is because the relentless shooting pains reduce our attention span to a minimum. If we seem to constantly moan about being tired, you may not have realised that it is because with an auto-immune disease, your immune system is constantly fighting itself which drains all energy, as well as the fact that being in pain all the time drains any energy that may be left. If any of you have been pregnant and have that feeling of utter exhaustion that you feel like no one has ever experienced in the history of the world (and I know a few of my pregnant friends have used that expression), this is what most days hold for RA sufferers. And if we seem moody or upset, take time to understand that this is because on top of all these symptoms, we have to cope with all the secondary problems that come with this illness; loss of eyesight, stomach problems, bad circulation which means we are usually always cold, we can't partake in many social activities you may think are normal, every day things and the fact that every day, at least 3 hours of our day are taking up looking after our illnesses. For those sufferers who take conventional medication, there are ALWAYS side effects such as joint damage, low immune system, organ damage, deficiencies etc, and these all need to be treated separately. In short, it's not easy, but we do our best. I certainly do, and after many years of hiding my illness and not telling people about it or talking about it in the slightest, I finally let that embarrassment go after writing my book and meeting some amazing people going through the same thing and I realised it was nothing to be embarrassed about. No one will ever understand what goes on in our daily lives but I've realised that it's ok to try and tell them a little bit about it. And if I'm really in pain, I can say it. Each week I will take you through what happened that week relating to the RA. This is my own kind of 'documentary' on daily life for a person suffering with a chronic, long-term disease - and I expect it won't be much different to any other chronic, long-term diseases, as they all involve a lot of hidden effort. I am going to be completely open about my feelings, my emotional state and my physical progress or lack thereof depending on the week. I will also tell you about each little hospital / therapy / clinic appointment and all the rituals I do each day to keep my body as healthy as possible. That sounds boring, you may say... But any fly-on-the-wall documentary is the same. It is not exaggerated or scripted, it's not over the top and overflowing with information. It is there to show the truth, and that, in my eyes is more fascinating and interesting than the 'big' stories. After all, you've all watched Big Brother at some point haven't you?? My next blog post will be about the experience that has led me to begin these weekly blog posts and I hope you will all enjoy (for lack of a more appropriate word) reading about my journey. And so it begins.....

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