August 8th, 2019: Understanding and Remembrance Day for Severe ME
by Jody Smith
We in the ME/CFS community mark August 8th, 2019, on our calendars and in our hearts. On Understanding & Remembrance Day for Severe Myalgic Encephalomyelitis, we seek to increase awareness about what our most severely ill endure. And we remember and honour those who have passed away without cure or respite, and those who continue to live in dark and silent solitude.
Our first Understanding & Remembrance Day for Severe Myalgic Encephalomyelitis was August 8th, 2013, launched by the 25% M.E. Group. The concept for this day originated with Diane, whose daughter Lili was severely ill with ME/CFS. Diane tells Lili’s story here.
The date August 8th was chosen by the 25% M.E. Group because it was Sophia Mirza’s birthday.
Sophia Mirza had severe ME/CFS and died in 2005 when she was only 32 years old. She had been forcibly taken from her home by doctors, social workers and the police and held against her will in a psychiatric facility. The treatment she received only made her more ill, and upon her death, her post-mortem indicated widespread spinal cord inflammation.
You can see Sophia’s story in the film “Voices from the Shadows.”
Naomi Whittingham wrote about ME/CFS in her 2014 article “What it’s like to live with severe ME” that there were at that time about 250,000 people in the UK with ME. She also noted that 25 percent of these suffer such severe symptoms that they are housebound or bedridden.
Naomi herself had been ill with ME for over a quarter of a century by this time. She lived in her bed, and later progressed to a wheelchair. Her mother has provided full-time care for her. Naomi had to learn to sit up and to talk, and to feed herself again.
These are just a few of the sickest members of our community, and just a little about what they have had to endure. There are so many more still suffering.
When my ME/CFS symptoms get bad people don’t see me. My husband Alan and son Jesse are usually the only ones privy to what I deal with when a crash hits. I don’t look normal, I don’t talk normal and I don’t act normal.
But that is nothing compared to the everyday life of someone with severe ME. Strategies may need to be complex and extreme. Planning and protection is necessary at every turn. That’s for those lucky enough to have caregivers either occasionally or full-time, whether that’s family, friends or paid assistance.
For the isolated person with severe ME/CFS, life is an unrelenting nightmare. Don’t ask me how they manage because I seriously don’t know how they can do it on their own.
I guess probably they just breathe. And that takes everything they’ve got.
Some need help with breathing. Some need help with eating, though the foods they are not allergic or sensitive to may be few.
Some need transfusions, IVs, and nutrients may need to be delivered this way as well if they aren’t able to eat. Is it because they have no energy to get their food or to chew it? Is it because they have gastroparesis or some other digestive dysfunction? Is it because they can’t lift their arms to put a spoon or fork or cup to their lips?
Yes. And yes. And yes.
Some people with severe ME are also sensitive to fabrics, clothing, material to the point that they can’t touch it. Can’t wear it. Can’t burrow under blankets. I know of some who have spent seasons naked with no coverings in a room with no furnishings.
Sound like a Gothic horror story? Yes.
Is it for real? Yes.
Makes it hard to believe that this life-sucking disease receives next to no funding from our governments, isn’t it. You would think that something like this would be taken very seriously. But it isn’t.
You wonder why? I do too.
Some need wheelchairs. And some have them. Some don’t. The funding for wheelchairs and other medical equipment is not adequate and many of these people have no money.
Hear that? No money. None.
The safety net most people think is there for those who are so terribly ill and helpless isn’t there for many of them. They don’t qualify. They can’t make it through the process.
Know why? Because they are too sick. Too sick to get benefits. Too sick to get a lawyer when their case is routinely rejected once or twice.
So what happens to people who are in this situation? It isn’t pretty.
Fortunately in recent years there are online ME/CFS groups. Some are support groups, and some that can help to meet some physical needs.
Looking for a place to live that you can afford on next to nothing? An online group might be able to help.
Don’t know what you can eat now that yet one more food has become indigestible for you? Desperate for information possible treatments? Someone online might share their experience and help you find an answer.
Many offer love and support to members of this community who have had access to neither.
There are articles, there are blogs, there are forum discussion groups to help those who are isolated with nobody in the real world to care for them.
Thank goodness. There was a day not that long ago when such supports did not exist, such connections were not possible.
So then I guess they stayed in their rooms or outside in their tents or maybe cardboard boxes and huddled under whatever their skin can bear to touch and wait. Wait for … I don’t know. Something to hope for? For the day to end? And then for the night to end?
And breathe. Sometimes it’s all a person can do is to bring in the next breath and let it out. Keep doing it. And hope for help to come.
You can see why this is an important day in our ME/CFS community. Think of us. Talk about us. Help to raise awareness. Remember our precious and fragile ill, on August 8th and every other day.
25% M.E. Group.
Diane’s Story: Lili
Voices from the Shadows.
What it’s like to live with severe ME. Naomi Whittingham. Aug. 2014.
August 8th, 2018: Understanding and Remembrance Day for Severe ME.
Severe ME Day of Understanding and Remembrance: Aug. 8, 2017.
August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
How to help someone with severe ME/CFS.
Severe ME Day: Understanding and Awareness.
Understanding and Remembrance Day for Severe ME is August 8.
Image by Luisella Planeta Leoni from Pixabay