The reason I started my blog was to raise awareness about invisible illnesses like ME/CFS, and to try to reach out to help others who are suffering like myself.
ME has had a big detrimental affect on my life so it’s important that I do whatever I can to raise awareness. But as many of us in the ME community are severely affected by the disease, we often lack the energy needed to spread the word. This is why we need healthy allies to help us.
May is ME Awareness month, so now it’s the ideal time to get involved.
For those of you new to my blog and to this often misunderstood illness, here’s a brief explanation;
What is ME?
ME stands for Myalgic Encephalomyelitis – An unpronounceable name for a severely debilitating illness. Click here to find out how to pronounce Myalgic Encephalomyelitis.
ME is a severe, complex and devastating neurological disease that affects all body systems.
There is currently no cure or effective treatment.
ME affects an estimated 15-30 million people worldwide yet there has been very little funding for biomedical research.
Patients are still commonly misdiagnosed or told the symptoms are all in their head.
ME is a debilitating illness with a myriad of symptoms including: extreme fatigue, pain, dizziness, flu like symptoms, Post-exertional malaise (PEM), hypersensitivity to noise, touch, light etc, muscle spasms, cognitive problems (brain fog), sleep disturbances, weakness, tremors, headaches & migraines.
If you would like to educate yourself about ME please click here.
I have created a video to show how this illness has impacted on my life. Please watch and share; Living with severe ME – a glimpse into my world
We have to fight to be heard
The ME community is a community of Fighters. We have had to shout (not literally) to be heard and to battle the stigma of not being believed, and to raise awareness – because if we didn’t do it we would be forgotten.
I have had to fight every step of the way. I had to fight to be taken seriously or just to be listened to by doctors. I had to fight to get a diagnosis. I had to fight to get treatment or access to the medication that could ease my pain. I had to fight to get the health benefits I need to live. I had to fight to get the adaptations and mobility aids I need to function.
I have to fight the stigma and the non believers who say it’s all in my head. I have to fight the pain, the exhaustion and the frustration. I have to fight to stay alive, to battle the often overwhelming despair at not knowing what my future holds. I have to fight when I’m at my most vulnerable and weak.
As a community we are stronger than even we realise. In the midst of despair we do not give up. We may be shut away in darkened rooms but, thanks to the internet, we keep fighting from our beds. We write blogs, books and poetry. We create documentaries and videos. We create art, compile petitions and organise demos. We organise fundraisers and support each other at every opportunity. I am so proud to be part of this community.
Will you fight with us?
But sometimes we don’t have the strength to fight. Is there any wonder that the suicide rate is higher with ME sufferers than the general population? We spend so much of our life fighting, there comes a time when we don’t have the strength to fight anymore.
What I’m asking all of you, the non ME community, is; Will you fight with us?
Here are a few ways you can help us raise awareness;
- Share my posts about ME and the Millions Missing protests
- Join the ME Action Network
- Get involved with ME Association’s #GoBlue4ME campaign.
- Take time to educate yourself about ME and share your knowledge with others
- Correct misinformation when you see it and defend us when we are being ‘attacked’ online
- Get involved with the #MissingMillions events which are occurring around the globe in May. Click here to find your nearest event
- Watch Jen Brea’s powerful film Unrest
- Read Jessica Taylor-Bearman’s emotional and inspiring book ‘A Girl Behind Dark Glasses’
- Ask us how you can help
- Help us raise funds to enable biomedical research into this debilitating condition
- Talk about ME at every opportunity
But most importantly, believe us and don’t give up on us. Thank you for taking the time to read this post. Take care x
Please share and help me raise awareness.
For more personal stories, reviews, news, inspirational quotes and in-depth discussion, please head over to my Facebook page.