May 12 is ME Awareness Day. A global day of "Millions Missing" protests and demonstrations by people with ME, their carers, family and friends. Many patients are too ill to leave their beds, so rely on these supportive individuals in their lives to do the footwork for them.
We would be lost and hopeless if not for the able bodied supporters who take our place at these rallies and make some noise for those of us too ill to do it ourselves.
I have recently been asked by a few people how they could practically help our cause. I will attempt to list some ideas and links to other initiatives that would greatly benefit from any support you can give.
Every Wednesday the ME community comes together on Twitter to raise awareness of this debilitating chronic illness. We share recent media coverage, research news, our personal experiences and more. Making new connections and supporting each other.
I will post the graphics I shared during the last ME Awareness Hour below. I hope this will help you understand what life is like with ME/CFS. If you have learned something new or find this post might be helpful in any way, please share it or download the images to share on social media and help raise awareness.
Sandwiched between 2 hot water bottles, under layers of clothes and blankets, medicated - multiple times, in the dark with sunglasses on, my phone's screen dimmed and the blue light filter on so that I can bear looking at it for a few minutes at a time.
This was me yesterday after I had a nap on the sofa where I toppled over after lunch, in a bundle of pain and tears as the previous night's insomnia caught up with me and my body was flooded with pain in every muscle and every bone.
As anybody with a chronic illness can tell you, holidays are a stressful time that we often dread. With many more people around, an increase in noise, activity and an abundant selection of unhealthy food choices, it is inevitable that we will experience an increase in unpleasant symptoms and will at some point need to isolate ourselves in order to rest and recover.
I am fortunate to have a very considerate and understanding family who keep noise levels low, TV off most of the time and serve me like royalty so that I don’t have to exert the little energy I have. It is frustrating when you want to join in and help others, but are bound by your condition to sit still and rest for much of your day.
Since May last year, I have experienced some great improvements in my health and am no longer bedridden, but in August, after a day out with the family, I had a massive flare up which lasted months. I don’t think it was just the outing that caused the flare up though, I was also going through a horrible histamine reaction which was exhausting my body. I ended up staying indoors for 5 months before venturing out, just after Christmas.
Prioritising rest and sticking to my low histamine keto diet and supplements seems to be paying off, I had minimal payback from Christmas Eve and Christmas Day festivities, so a couple of days later was able to enjoy a whole afternoon out with my parents! Continue reading
On this day last year something very wrong and so unfair came to my attention: People with disabilities, who are deemed unfit for work by doctors and occupational health assessors, are being denied benefits because of their Internet activity. They’re being stalked, not only online, but in real life too!
In this post I will elaborate on some of my thoughts I’d shared online at the time. My heart goes out to anybody who has suffered unnecessarily due to such corruption in the benefits systems, not only here in the UK, but abroad too. I have spent some time in various international support groups online over the years since the onset of my ME/CFS and was shocked to read about people’s experiences of surveillance through windows and being followed.
This means that if the chronically ill applicant dares venture out and is spotted, it could seriously affect their applications for benefits. This is simply wrong on so many levels.
Does this mean that since we are unable to work due to illness, we also no longer have the right to live? No longer have the right to enjoy a rare occasion out or join social media so we can connect with the outside world without the negative consequences of going out and exerting too much? Despite the discomfort and pain we will endure during and after the activity anyway.Continue reading