Raising Awareness

As most people out there with or who know someone with M.E/CFS or FM will know that this week is M.E awareness week. So, I have decided to do as many post's as I am able to focusing on the issue of raising awareness about this/these horrible diseases. A friend of mine shared this on facebook, which I soon made my status as it is such a perfect description. I would like to share it with you all, I believe that the person who originally wrote it was a lady by the name of Kate Stanforth and it is completely perfect:

A M.E sufferers everyday battle: 

"We all smile and say that we are fine as we are trying to be as normal as we can. A smile that we give isn't the reflection that we are facing inside, we are facing a huge battle every minute of every day. I can honestly tell you that M.E is real it's not all in our heads and that we aren't making it up. Honestly who would want to go through this everyday until we get better? I don't think anyone can 'imagine' having ME, or what it feels like. But this is how I feel every single day. Imagine a really bad hangover, then having to run a marathon, then coming down with the flu, all at the same time. On top of that, imagine someone is prodding needles into you constantly, spinning you around on a chair so you are extremely dizzy and nauseous and shining a bright torch in your eye so that light hurts. Then also, imagine everyone has a speaker phone, so even a whisper seems like shouting. Imagine spraining every muscle in your body and having to carry someone equivalent to your own weight who is clinging on to your legs all the time. Imagine having muscle spasms almost constantly uncontrollably which feels like torture as its so painful and tiring. Imagine someone speaking a foreign unknown language to you, and you have to concentrate REALLY hard to try work out what they're saying, then you forget it. Imagine having to sit in an ice bath for a long time, freezing cold, all the time. If you think you can't get any more tired, imagine having panic attacks on top of that, & really bad anxiety which literally drains any energy you've got left. Then, imagine staying like this, not knowing if/when you're going to get better, having to deal with this HUGE change of lifestyle. Imagine how tough and heartbreaking this illness can be. Imagine a lot of your support mechanisms breaking down, some friends move on. Imagine having to deal with this on a day to day basis, not knowing how you are even going to be hour by hour. And worse of all, imagine being told 'ME isn't real' and 'it's all in your head'. Even by medical professionals. This is what I want to change. I can't control my ME, the causes, the cure, but what everyone together CAN change is its understanding. We are all wishing for the day to arrive that we can carry on with our lives once more. However, things are not that easy as we are forced to sacrifice things to help us cope. For example, friends, exams, education and in some cases people become so isolated. In all honesty the best thing to do if someone you know has M.E is to stand by them and help them through the bad times. A small text means so much to us. Please raise awareness of this horrible illness. No one deserves to suffer in this way."

In my opinion, it deserves to be talked about, people should know about it, we should be heard, our pain should be considered and if it makes people uncomfortable then so what? If it makes other people even slightly as uncomfortable as it makes me on a daily basis maybe something will be done about it. Maybe more research will be conducted, maybe doctors will stop treating it as psychological and recommending therapy's such as CBT and GET. Maybe then the NICE guidelines could be re-written so that patients get the medication and care they need, instead of being abused and neglected by the medical profession. Maybe then all patients will get the help and support they need from the government (financial and otherwise) to ensure their rapid diagnosis and complete recovery. Maybe, just maybe.

As she said, I alone cannot make guidelines change, doctors treat me better, scientists undertake desperately needed research, the government decide to help those with varying illnesses. I cannot do all or any of that. But I can raise awareness and try to create understanding. I can show people that this illness is real, it is here and it could affect anyone. I can encourage people to understand to, know that they should help us, because, as sad as it is to think about, they could be next. But, if more is done, they might not have to be.

Anyway more on this another day, here are mine and Niamh's 366 photos for today:

Me sporting my newest medical based fashion accessory, joy!

And Niamh, "eating" strawberries and cream!

Night folks!