May is a big month in the raising awareness stakes and for me it is all my illnesses awareness month! So, I thought I would do one big post with lots of information! Lets do this:
My illnesses, Ehlers Danlos Syndrome, Fibromyaligia and ME/CFS that have their awareness days this month and all fall on the 12th and have all greatly affected my life. Before I was sick I was active always walking everywhere and I was a nurse.
When these illnesses started to make themselves known, I had to leave my job, my home, and yet it is more than that. The fact that my body constantly hurts, that my joints are unstable, most of my body is numb, I have constant headaches, tinnitus, tingling in my hands and feet, fatigue, inability to walk far, dependence on my husband… the list goes on and on.
It makes it hard to get through the week or to plan anything because my symptoms are difficult and so unpredictable. How I wake up is never the same as my evening, and planning to go out anywhere means planning and resting for days before and after.
I have been keeping a blog about my illnesses for many years, I think I started on LiveJournal back in the 2000s! Now, I am here on my own website and over on my YouTube channel doing my best every week to raise understanding and awareness. And, as I have spoken about before, these awareness days/weeks/months are a wonderful way to come together as a community.
So, lets have a little chat about these illnesses one by one:
Ehlers Danlos Syndrome
This is a group of 13 connective tissue disorders that are caused by genetic changes affecting connective tissue. Each of the different types have different ways of being diagnosed, and different symptoms but have a few things the same including joint hypermobility, skin flexibility and more fragile tissues. EDS is caused by changes in the genes that affect the ways that connective tissue functions.
In order to raise awareness, you can participate in the dazzle walk, fundraise, change your display image on social media, or share your story on social media on May 12th. This year Ehlers Danlos Support UK is running the #enoughisenough campaign calling on the NHS to improve the treatment and diagnosis of EDS.
This is a musculoskeletal disorder that causes pain all over the body, as well fatigue, anxiety, migraines, irritable bowel syndrome, insomnia, numbness and stiffness amongst others. Many of us get misdiagnosed or go years without being diagnosed, and due to lack of research there are many, even in the medical field, who believe this is a psychological disorder or not real. There is no cure just symptom management.
If you would like to raise awareness this year, you can share your story on social media, fundraise, wear purple on the 12th of May and post it on social media using the #thisisfibro hashtag.
ME or chronic fatigue syndrome, is a post-viral fatigue syndrome. To be diagnosed you need to have these 4 symptoms debilitating fatigue that worsens with activity, post exertion malaise, unrefreshing sleep and cognitive dysfunction. These can also be accompanied with dizziness, and palpitations, temperature sensitivity, twitching muscles, flu-like symptoms, heightened senses, pain, headaches, and joint pain.
If you want to raise awareness, again on the 12th, wear blue in social media pictures, share your story, fundraise and use the #MESUK hashtag on social media.
May has a lot more days than these three, but these are the illnesses that affect me and my life and that is what this blog is all about. Raising awareness and understanding, so that medical professionals and the people around me as well as the public is something I am passionate about.
It is so important that we share how these illnesses affect our lives because a lot of the time these illnesses prevent us from being seen. For the most part I don’t leave the house and many of us cannot work especially when our symptoms are at their worst.
However, we are humans, we deserve respect and care without fear of being disbelieved or mistreated by the people around us and medical professionals. With improved research and understanding maybe we would have less of a fight to get disability benefits and compassion.
I really hope you will look over the rest of the blog, and that it helps you to understand the affects they have on us and if you have these illnesses that it helps you feel seen. It is all my illnesses awareness month, so I hope that this raises awareness an that gives you time to do something to raise awareness.
Thank you xx