May 12th is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia awareness day.
Today I am joining the #ThisIsME and #May12BlogBomb campaigns, and bloggers around the world, by blogging about my illness. The following quote and questions were composed by Louise at TheGetUpAndGoGuru. What she said applies to me as well so I have included it here.
This Is M.E.
Most of you (my friends and family) know that I have Chronic Fatigue Syndrome (CFS). It is also known as Myalgic Encephalomyelitis (M.E) and Chronic Fatigue Immune Deficiency Syndrome (CFIDS). This illness doesn’t even have one name that everyone can agree on, which is one of the many frustrating aspects of living with this multi-faceted illness.
As part of International ME/CFS/Fibromyalgia Awareness Day on May 12, I have made a list of 5 things you may not know about me (in general) and 5 things you may not know about my life with CFS / ME.
Have a read and see if there’s anything you didn’t know. Awareness Day is about creating awareness, so through these questions and answers, this is my way of creating a little more awareness about CFS / ME in my own personal network of friends and family. If you wish to pass this onto anyone, feel free to do so. It will create more awareness of this debilitating illness if you do. Thank you!
What is your name and how long have you had ME / CFS?
My name is Cheryl and I have had ME for about 9 years total. I got sick shortly after having our first son, almost eleven years ago. When he was four I started to feel better and had about a year of being healthy, but after having our second son, almost six years ago, I became sick again and have not recovered.
Tell us 5 things about you that the people in your life probably don’t know (non-illness-related):
I’m not sure there are five things left about me that aren’t illness related. Certainly not five the people in my life don’t know. And certainly not things that don’t being with “I used to”. And I am pretty much an open book, but here goes . . .
1. I blog here.
2. I am an introvert.
3. I really do not enjoy cooking but like to bake.
4. I like cheese. I do not like movies or TV that are disturbing, crass or make me think. I want silly, funny and cheesy. I do enjoy mysteries and documentaries though. And I do like cheese the food as well.
5. I generally only read nonfiction. I also like biographies. I very rarely read fiction.
Tell us 5 things about you that the people in your life probably don’t know about your life with CFS / ME:
1. I have a lot of pain. I try not to complain though.
2. I am afraid of how bad this illness can get. Will I end up bedridden?
3. There are weeks at a time where I can not do anything. If I leave the house it saps all of my energy and nothing gets done at home.
4. I feel guilty, about pretty much everything, but especially if I use the little energy I have to do something I would like to do instead of something for my family or something that needs to be done.
5. If it seems like I am distracted or not listening, give me a minute. It is probably just that I am having trouble processing, thinking, and responding.
What one thing do you think most people wouldn’t know about living with ME / CFS that you’d like them to know?
This is a very serious illness that can cause one to become bedridden and can even cause death.
What is the most frustrating aspect for you of living with ME / CFS?
Feeling like I am being forced to watch life go on without me. Having to watch as my family experiences life while I sit on the couch.
Anything else you’d like to say before finishing?
I feel like the point of awareness is to promote action. So here are a few of my suggestions on what you can do to help.
1. Come clean my house. No, seriously though, if you want to that would be amazing. Ha, but really, if you know someone who is chronically ill, please help. Go clean their house, do laundry, make meals, etc.
2. Write, email or call your elected representatives requesting more research funding for ME/CFS. The only way we are going to solve the mysteries of what causes this illness and how to help treat and/or cure it is through research funding.
“The problem is that you need a champion in Congress who’s going to go ahead and say, I want money allocated for chronic fatigue syndrome research. That’s the way it gets done. That’s the way HIV got done, that’s the way breast cancer got done, and so on. It has to be somebody who has some ability to influence the purse. And if that happens, the NIH would only be too happy to take the money and to allocate it and get the best science done. That’s all the NIH cares about.. . . But they don’t listen to scientists. Congress doesn’t listen to scientists. They listen to people who vote for them. . . . The problem is with chronic fatigue syndrome, and I feel bad about this, these are the most vulnerable people. They don’t have the energy or the resources that are needed to go and lobby.”
Dr. Ian Lipkin
from a interview posted on CFS Central
3. Spread the word. Encourage the people you know to learn about this illness and to take action.
4. Donate to one of the many wonderful organizations that are trying to raise awareness or do research. Here are a few of my suggestions.
Bent But But Broken
The Microbe Discovery Project
The CFIDS Association of America
Step Up For M.E.