Lupus as many of you know is a debilitating invisible illness that comes from nowhere and can have an extreme negative effect on a persons life. For me it has brought chaos, mayhem and a lot of sadness into my life. I have to make adjustments everyday just to get through the day. There are times when I think, is it bloody worth it? All this carry on i have to do to get through a day of work (yes I know how lucky I am to have a job and a job that i adore, yes I said adore). Through the wonderful medium of social media I have many friends all over the globe with the same condition, people who have similar struggles to me and take the time to share their journey with us. what I have learnt from these courageous people is that while fighting these invisible illnesses is you must try and stay positive as it is all to easy to let the negative thoughts in and depression is ever present, waiting, lurking at every corner, waiting to leap in and darken your thoughts.
Chronic illnesses with their long list of symptoms are challenging on many levels and every day brings new challenges, is it pain, swellings, rashes and/or sores, fatigue, digestive issues, ulcers, hair loss, cognitive issues and of course depression, the list goes on. For me the hardest things are the pains in my joints and the fatigue. Sometimes getting up out of bed for a shower feels like the hardest thing to do but I know just having a shower will give me such a sense of achievement that I feel like celebrating and telling the world. Who will understand such a ridiculous thing though? Only others in the same situation and that is the power of social media it is so essential to,our healing, we are no longer alone. During this latest flare which took me by surprise as I was doing so well, my IPad has been my best friend as it is the key to the world, the world I was forced not to be part of. No work, no social life reduced family life but Facebook, twitter, pininterst and the blogs I follow have kept my sprits up, educated me on what I could do to help myself. Posts from people with uplifting words, funny pictures and quotes to make me smile and stories, plenty of stories, stories that I could relate to, some with hope and some sad but they all had the same effect, they made me feel alive and being part of something and I am very thankful for this, very thankful indeed.
It can be easy to lock yourself away from the world that can be cruel or who misunderstands what you are going through and asks silly and sometimes offensive questions. But this is the thing you must fight, do not let it become your jailer. Find ways of becoming part of the world and staying active as much as you can. Find the things that bring you joy and make every effort to take part in these activities as much as you can. Whether it is reading, music, art, cooking whatever it is, immerse yourself, it helps pass the time, focus your mind on positive things, keep your mind diverted from what is causing you pain and discomfort. For me I love to read, cook, watch football, craft and all of these things I can do even during a flare. I can access them through my IPad (not all the time though) and I surprised how I am able to redirect my thoughts and the painful time seems to flow by. It is a challenge and sometimes the dark thoughts have prevailed but I fight on and I take great heart from the people that I have met through the different groups that I have joined and the people that I follow as they have these struggles to, sometimes they win the fight and sometimes the illness gets the better of them for that day, but nonetheless they fight on. I can honestly say that social media and the Internet in general has been part of my journey this time in getting well and using them this time has changed the way that I look at this illness and my life. Even though my life has changed forever, my future different, there is still a lot of goodness, joy and fun to be had and I am determined to make sure that I get all three and lots of it and so can you, just don't give up and even though you may be locked inside there are many ways of getting out into the world.
- Posted using BlogPress from my iPad



- Posted using BlogPress from my iPad