11/08/2014

2 Weeks Notice: Severe M.E. Day Special.

Severe M.E. day was on the 8th August which was Sophia Mirza's 41st Birthday. Now, if you're not buried deep in the onliine M.E. community you probably will have no idea who she was but basically she died of M.E. in 2005 and was the first person to have M.E. listed as her cause of death (a huge milestone for us sufferers).  You can read more about her and her life here. Sever M.E. day was made to help remember all of us who are hidden away in a dark room. There's not a day that goes by when i'm not lonely, but this day makes me feel slightly better about it and that i'm not forgotten about. so Thank you. There was also a campaign to support severe people by wearing a black dress, representing us that live in the dark.You can find more about this here. I had a post for Severe M.E. day but I couldn't finish it. Then, I went back to carry on and I'd completely lost my train of thought. So, I thought why not do another 2 weeks notice special and here we are.
how i spend my afternoons/evenings.
  • I recently stumbled across Brooke's blog and was amazed at how well she presented M.E. to everyone who would read it. Unfortunately, and devistatingly Brooke hasn't got long left. Because of M.E.! So, please please please, read her blog. People don't realise how terrifying M.E. is, how scared we are to know that we could be Brooke at any time, dying from M.E. When I've said to people that severe M.E. (like I have) is like the final stages of cancer they look at me like I'm crazy and kind of move the conversation on; so I dare anyone to read this post and tell me M.E. isn't like cancer. I live in fear. I have never ever got better the whole 5 years I've had M.E., just gradually worse. And lately, it seems every day is worse than the last, which is awful when you're already severe, you think 'where do I go next'. I need help but unfortunately my Doctors don't understand what M.E. is like, they think of it as CFS. Michael rings to speak to a Doctor (they would never come out for a house visit) they say I need to come in which, of course, is impossible. So, I make do myself but if I get much worse I don't know what I'm going to do. But, that Brooke had a a wonderful Doctor makes me so happy that she's had that support. I want everyone to click and read. Then when her movie comes out, I'm going to shove it down everyone's throats, okay?
  • Now, something a little more positive that i am so excited about! Katherine's blog was one of the first i started reading, and i felt an immediate connection because of how severe she had been too. In fact, she's one of my biggest inspirations in the M.E. world. First, i'm going to link in a post she wrote for M.E. awareness day which explains the crapiness of M.E. really well. And, here's the important bit; Katherine's 21st Birthday (just one day after mine!) is no ordinary birthday. Katherine is donating her birthday to M.E. Research UK to help raise awareness and money for all the people suffering every day. You can find out more by reading her post on it. I don't really know what to say, to be honest i'm a bit speechless, but i know everyone in the M.E. community are incredibly proud of her and we'll all be trying to support her while she supports all of us.
  • I'd never read/heard of Dannilion's blog until last Friday, but i feel like we're both at around the same severity level. This means her blog is so useful for me, considering i'm really not great at explaining my M.E., and i'll be getting my family to have a read in the hopes it will help them understand more. Anyway, it's another great blog for Severe M.E. as she goes into great detail about every aspect of her life. I'm having a lot of brain fog lately so i don't know what else to say apart from it's great and go read it biatches.
  • Last, but by no means least, is Sally's blog post trying to explain what severe M.E. is like. And, as someone with Severe M.E. i think she got it pretty spot on, and it's short and sweet, easy for us lot with brain fog to read. She also looks gorgeous in her black dress!

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