Considering that International ME / CFS / Fibro Awareness Day is today, I thought I’d participate in a blog-chain where we all get a chance to tell the people in our lives a little about how it is to live with CFS/ME – PLUS also let them in on a few other things they may not know about us. This blog chain was set up by Louise from Get Up and Go Guru. Check out her original post.
This Is M.E.
Most of you 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.
In additional to CFS/ME I suffer from Dysautonomia, Immunodysfunction, early onset of anaerobic threshold, multiple food sensitivities/allergies, hypersensitivity to external stimuli (chemical, light, sound, motion etc.), and several other things (diagnostics are ongoing).
As part of International ME/CFS/Fibromyalgia Awareness Day today (May 12th), 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 the world. 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. Also, feel free to ask me any questions you may have about my illness and how it affects my life. I honestly don’t mind. Thank you!
What is your name & how long have you had ME / CFS?
My name is Jen and I’ve had CFS for 3.5 years.
Where do you live? (Country, State, City – however detailed you want)
Age (if you’re willing to share)
Tell us 5 things about you that the people in your life probably don’t know (non-illness-related):
1. Hand-knit socks are some of my favorite things in the world. I love knitting them and I love wearing them.
2. I think I would love to live on a farm, or at least in a house with lots of land where I could have a HUGE kitchen garden, a small orchard, some chickens, maybe some sheep, and definitely a dog.
3. My plan for surviving the Zombie Apocalypse is to gain a bunch of archaic but useful skills (knitting, sewing, weaving, spinning, cooking, gardening, etc…) so that I become an asset when society fails. I think the biggest threat should I survive the initial outbreak would not be zombies, but the other humans that survived.
4. I tend to remember a lot of my dreams. It is not uncommon for me to remember 2-3 dreams every morning, and 1-2 when I wake up from naps. I’ve always been this way.
5. Pie is probably my favorite dessert. Cherry is my favorite type, but my aunt’s blackberry pie comes in a close second.
Tell us 5 things about you that the people in your life probably don’t know about your life with CFS / ME:
1. I had to fight hard to convince people that I was physically ill, not depressed, for the first year of my illness. It has also taken me years to convince people (particularly some who are very close to me) that “pushing my limits” is in fact extremely counterproductive. Even still I have to deal with these misconceptions of my illness. This can cause me to become defensive if someone brings up either topic regarding my illness. I don’t mean to and I’m trying very hard to work on this response.
2. I can’t drive much more than a mile right now. I haven’t been able to since my relapse last July. Still, I’m grateful for that mile; last semester I couldn’t drive at all.
3. I am afraid of throwing up. I also experience near constant nausea as a symptom. This makes for some really not fun times. I don’t know what I’d do without my anti-nausea meds.
4. Please, please, please don’t startle me (if you can avoid it). It does very not fun things to my heart, and because I’m hypersensitive to just about everything my body gets very confused about how to respond so it doesn’t. I’ll basically collapse, and while still being conscious, be unable to respond to anything. If this should happen, don’t touch me, be very quiet, and kindly leave me alone until things normalize, which may take ten or more minutes.
5. I can see how uncomfortable my illness makes people. It’s not their fault; in the stories we’re told as children the protagonist either overcomes their challenge and can be celebrated as a hero or succumbs to it and can be mourned as a martyr. Either way there’s closure. My story falls into a third category where the protagonist (me) will, in all likelihood, never conquer their challenge nor be killed by it. People don’t know how to react to a story like that. I can also see the pain it causes the people who are not able to “fix” me but so desperately want to. This is one of the most difficult aspects of my illness and can cause me to hide my symptoms/illness from people. I do not want to cause others discomfort and pain.
What one thing do you think most people wouldn’t know about living with ME / CFS that you’d like them to know?
My illness affects literally every part of my life and everything I do. I can not think of anything it hasn’t touched. In order to function at even a reduced level I have to think about my illness all the time (Do I have enough energy to do this? Do I have enough time to recover from this later? Will this meal make me sick? Is this new symptom something I should be concerned about?). Fortunately by this point a lot of it has become second nature, but that doesn’t mean it doesn’t happen.
What is the most frustrating aspect for you of living with ME / CFS?
The unpredictability of it all is what I find the most frustrating. I never know how I’m going to feel from one moment to the next, and how I’m feeling can change on a dime. Actually, if I had a dime for every time I felt fine one moment then felt completely horrible the next I’d never have to worry about my medical bills. I also never know how new meds or an increase in dose of my existing meds will affect me. This makes it really hard to plan things in advance, and being a planner by nature I find this aspect of my illness particularly stressful.
Anything else you’d like to say before finishing?
I’m really not as pessimistic as it seems. I actually have a fairly positive about things in general. I have an immense number of things to be thankful for, and those are typically what I focus on. It’s just that when it comes to my illness, I’ve found that sugar-coating things does me no favors. Adjusting to my new reality has been much easier since I chose a realistic view of it.
Well, that about sums up my contribution to this blog chain. If you’d like to read other posts about CFS/ME/CFIDS and Fibromyalgia you can go to any of the links below or check out the #ThisIsME and #May12BlogBomb hashtags on twitter, facebook, and anywhere else where hashtags are used. One thing you’ll find is that everyone with these illnesses has a different experience, all of them important.
#ThisIsME Posts by other bloggers
Getupandgoguru.com – Original post, also contains a list of links to other posts.
TipsForME.Wordpress.com – Posted 1 May 2014
SallyJustME.Blogspot.co.uk – Posted 2 May 2014
BeingTheImperfectMom.com – Posted 5 May 2014
Granualie.blog.de – Posted 7 May 2014
MyChronicLifeJourney.com – Posted 9 May 2014
Fibromyalgia-dee.blogspot.co.uk – Posted 9 May 2014
Allancdickinson.wordpress.com – Posted 10 May 2014