First, I’d like to say thankyou so much for supporting the blog during Lupus Awareness Month. I also know that many of you have been reading every single day and so thankyou very, very much.
The Sick of Lupus gang, our friends and family have been fundraising for years. My loved ones are just incredible. They’ve walked over 200 miles for Lupus and cycled from London to Paris. I have a friend who put on an incredible fashion show and party for Lupus UK and we’ve done shows, assemblies, charity gigs, auctions, cake sales, sponsored events, mountain treks, you name it.
I’m not well enough to do the really big events I’d like to. I’d love to take on a huge physical challenge but that’s never gonna happen now is it?!
However, I realised that spreading awareness is just as crucial as raising funds. I thought it would be a good idea to chronicle my month and share the challenges of life with illness. No two Lupus patients are the same but I feel like we can all relate to each other and receive comfort in knowing we aren’t alone, paranoid or crazy!
I also wanted the friends and family of people with Lupus to hear about the illness from a different perspective. Many will underplay their symptoms to avoid hurting friends and family and so I wanted to be as honest as possible.
The reason the Sick of Lupus team do the blogging, Twitter, Facebook and the website is to give a voice to an important cause that doesn’t get the attention it deserves. The money that is ploughed into other causes leaves conditions like Lupus in the dark. The truth is, Lupus does debilitate, it’s incurable and people die. What other reason do I need to support the cause?
I’m still totally devastated that I have this disease. I do feel robbed of my life and I feel frightened all the time. If I do have a good day, I can’t enjoy it because I’m always thinking that any minute now, I’m going to start hurting or feel tired. I always think about the future and I worry what life will be like as I get older. I’m aware that every day that I’m confined to my house, is a day I will never get back. However, doing my bit to help spread awareness, makes me feel like I’m turning a bad situation on its head. I’d be happy to know that I’ve helped just one person by writing or speaking about Lupus.
It’s not to say that I’m Miss calm and collected. In most situations, whenever I’m speaking about myself and Lupus, I can feel the tears coming. I’m still trying to come to terms with my diagnosis, even after 10/11 years. I don’t think you can ever fully accept that you’ll never be ‘well’ again. That’s the thing about Lupus, it’s not the flu, in 5-10 days, you won’t be better.
I’ll continue writing on a weekly or fortnightly basis and try to share any useful info I find. I’m also doing a Fibromyalgia coping skills programme at my hospital. Any info I can share from that, I will.
So that’s my bit done for Lupus Awareness Month 2014.
Wishing you all the best for 2015! Be sure to stay in touch with us via all the social media outlets and the website!
Until next time!