Short Hair Vintage Hipster Asian Girl. Short Hair Japanese Teenager sleeping on sofa. With copy space. Vintage Sepia color tone.

What People Who Say I 'Just Need to Get Out' Don't Know About CFS/ME

809
809
0

What people don’t understand about chronic fatigue syndrome (CFS) is that it’s not just being tired or when you have a late night out. It’s not comparable to needing to take a nap or needing to go to bed early tonight. Chronic fatigue syndrome is a condition that pretty much means extreme exhaustion without cause or relief. It’s never having enough sleep and always being tired. Brain fog, confusion, memory loss, or just being out of it is a struggle every day. No tasks are easy and you forget the simplest things. Which medications I took, did I sign the permission form, who I was supposed to call back?

Days that I have to get up at a certain times are always hard. For me, school days where I have to get my kids up and ready for school are always exhausting. Waking up is a long process, you know you have to get up and take care of your kids but you struggle to find the energy to even sit up in bed. Every task sucks the energy out of you and you always need a break in between. Make yourself a cup of coffee, sit and rest, shower, sit and rest. You always have to plan your tasks carefully. I shower in the late afternoons/early evenings and then I’m able to just get dressed and attempt my hair and makeup the next day. Trying to do my hair and makeup requires a stool. Even lifting my arms to brush and style my hair wears me out. I wish people understood how everything you do takes a little more out of you.

I tend to be more of an introvert lately, so any social interactions takes a lot of energy. I always require a nap afterward. When you’re a parent every trip out of the house requires not only getting yourself ready but also the kids. People are always trying to get you out of the house, saying, “You just need to get out of the house,” but they don’t realize even the simplest trip to the store or a doctor’s appointment is the max you can do in one day. Then it’s over. It’s time to curl up in bed with Netflix and your favorite fleece blanket. You only have so many spoons and then they are gone. All I want is to go see my family or have a night out, but there is always a cost to that. You might not be able to do anything the next day other than lay in bed and rest. When you’re a parent that means less time playing with your kids, reading them story or helping them with their homework.

If you want to hang out with your friend or family member with CFS, offer to come to them. We always love spending time with people, game nights or a movie marathon. Just laughing and taking our minds off what we are going through. So the next time you tell someone with chronic fatigue syndrome that they just need to get out of the house, remember what that will cost them.

This blog was originally published on My Autonomic Dysfunction Adventure.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by junce

809
809
0

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

When an Advertisement Treated My Disability as a Joke

173
173
4

It is not easy to navigate London with a disability, as any disabled Londoner will tell you. Accessing most tube stations requires walking up and down stairs, passengers with prams and extra luggage often take up spaces reserved for wheelchair users, and there is an overall hurrying mentality that means anyone traveling slowly is met with groans, rolled eyes and sometimes even pushing and shoving. I am often made to feel like a nuisance just for leaving my home.

Recently, I was also made to feel like a joke.

While on my way to a hospital appointment, I noticed a poster imploring passengers on the tube to “Please give up your seat for those less able.” At first, I was encouraged, and then I read on:

“Please give up your seat for those less able. Like bad sleepers. You have to pity those poor souls who didn’t sleep well last night. But you don’t have to be like them. The Eve mattress is made with next-generation memory foam to provide the perfect bit of shut-eye. No lumbering around like the walking dead for Eve fans. No desperate search for a carriage with a seat. Just a more alert mind and body. Everybody deserves a perfect start to the day. Start by going to our website. Tap in START for your £50 off and your 100-night trial will begin within one day. Which is round about the same time your perpetual lethargy will end, coincidentally. Everybody deserves the perfect start.”

It’s hard to explain just how upsetting this was to read. I have myalgic encephalomyelitis, also known as chronic fatigue syndrome. It can be very hard for me to get a seat on the tube sometimes, even though I need one, because I don’t look disabled. Until TFL rolls out their much anticipated “please offer me a seat” badges, when there isn’t a seat, I have to decide which person in the carriage looks least likely to argue with me about whether or not I’m disabled. This is a very real fear. On the basis of exactly no expertise whatsoever, many able-bodied people appoint themselves as arbiters of disability, confronting people like me when we use the elevator, park in a disabled space, or even ask them for a seat. Sometimes these confrontations can turn violent.

Society is largely oblivious to the everyday experiences of disabled people like me. The people at Eve Mattress certainly seem pretty oblivious. An able-bodied passenger’s search for a seat isn’t really desperate, but mine is. Sometimes that last seat is the only thing that will stop me from collapsing.
Here’s the thing: having a bad night’s sleep does not make you disabled. Needing a new mattress does not make you disabled. Being tired is nothing like living with CFS. I’m not just “tired:” I have chronic pain and chronic fatigue. My mobility is restricted; some days I can’t stand. I am often to be found “lumbering around like the walking dead,” but my “perpetual lethargy” will never end, coincidentally. One bad night’s sleep does not come close to a lifetime of fatigue, and it is offensive to suggest that it does.

Either Eve Mattress were deliberately intending to hurt and insult disabled people like me, or more likely, the thoughts and experiences and inner lives of people like me are something they never stop to consider. Both of these possibilities are ableist, but the latter is subtler, more insidious and deeply entrenched in how we think about what it means to be human. Far too often the disabled are left out in people’s thoughts, just as we are shut out in real life by doors we can’t open, stairs we can’t climb, or those who refuse to make room.

To the able-bodied, I say: I’m not an inspiring quote to put on a poster, or a sob story that makes you feel better about your life, I’m a person. I don’t want your “pity,” and I certainly don’t want you to laugh at me or at people like me. I want you to treat me with the dignity and respect you expect to be met with yourself; I want you to change the way you think about disability, and listen to disabled people when we tell you that you’re wrong. I want you to be outraged at the prejudice and the scorn we live with every single day. And, yes, sometimes, I want you to let me have your seat.

A complaint about this advert has already been made to the Advertising Standards Authority. If you want to complain, I suggest you contact Eve Mattress, or call them out on social media.

We want to hear your story. Become a Mighty contributor here.

173
173
4
JOIN THE CONVERSATION

Chronic Fatigue Vs. Tiredness

38
38
0

A video for anyone who thinks having chronic fatigue and being tired are the same thing.

38
38
0
TOPICS
Video
JOIN THE CONVERSATION

Please Don't Suggest 'More Coffee' for My Chronic Fatigue

7
7
0

There is a huge difference between fatigue and being tired. Chronic fatigue, due to medication or illness, isn’t, “I stayed up too late last night, I’ll just have extra coffee.”

Fatigue is needing help to get out of bed to pee.

Fatigue is not showering because you don’t trust yourself to be able to stand for that long.

Fatigue is falling asleep sitting up, waiting for your toast to finish.

Fatigue is skipping meals because whether it involves cooking, a drive through, or just grabbing something out of the fridge, it’s just too much work.

Fatigue is crying while getting ready for work because you just can’t bear the thought of having to function.

Fatigue is setting an alarm two hours early and still being late.

Fatigue is being unable to read because the book is too heavy.

So please, before you suggest drinking “more coffee,” or before you say you’re jealous because I “get to” stay in bed all day, remember this isn’t a choice I’m making.

Please reconsider your words. They hurt.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: efetova

7
7
0
TOPICS
JOIN THE CONVERSATION

How Chronic Illness Has Changed My Life for the Better

48
48
0

I could easily list all the negative aspects of living my life with chronic illnesses but I don’t like to focus on this too much. You may think there are no positive aspects to living with chronic illnesses but there are, and I want to tell you how they have changed me as a person.

I live with three chronic conditions that have a big impact on my life: Ehlers-Danlos syndrome, Hashimoto’s thyroiditis and myalgic encephalomyelitis/chronic fatigue syndrome. These conditions impact me physically by causing pain (nerve pain, muscle spasms and headaches), fatigue, dizziness and weakness along with many other symptoms. The pain is constant and often severe and the fatigue is very debilitating. It has stopped me from doing a lot of things in my life. It caused me to miss a lot of school when I was younger and has interfered with my career and dreams. So it may surprise you to know that I feel there have been a number of positive aspects to being unwell.

Recently I saw an article on chronic illness titled “What would you do tomorrow if you were suddenly cured?” This made me think about how I would answer that question. If I woke up tomorrow and was physically able to do anything, I would take my dogs for a long walk. I would watch them having fun, enjoy being outside in the air, walk for miles and enjoy nature. It is impossible to describe how happy this would make me. When simple tasks are hard to accomplish, you don’t take anything for granted. I appreciate everything I do have. I have a wonderful family and partner, a house I love, my gorgeous dogs and supportive friends. I don’t worry about little things like how I look or what people think of me like I used to as my ill health has allowed me to focus on what is important in my life.

I have also gained life skills and values that I most likely would not have if I had not been forced to make some changes in my life due to illness. Developing Hashimoto’s thyroiditis and ME at 29 years old made me realize my stress levels in day-to-day life were far too high and severely affecting my health. I began trying to find out more on how to reduce stress and worry in my life, I stopped comparing myself to others and I learned to be happy with myself. I started by learning how to meditate and practice mindfulness. Through easy daily practices I learned to live in the moment, practice self-compassion and take care of myself better in the process. This benefitted me hugely and I am grateful that I was forced to make these changes.

When I was off work for a long period, I found it extremely difficult as I enjoy being busy and learning new skills. As I was recovering slowly, I taught myself to draw with the help of a book. This took my mind off the pain I was in and I found it very therapeutic. I also began writing about my experiences to raise awareness of the conditions I struggle with and to hopefully provide support to others in a similar position. This gave me a sense of achievement and was crucial in my recovery process.

As ridiculous as it may sound to some, I wouldn’t change my life at all. I wouldn’t wish to be a “normal, healthy” person and I have no regrets. What I have learned throughout the last few years has changed my life for the better and made me a stronger person. Now it is time for me to create new dreams and ambitions and find a way within my limitations to make these a reality. Don’t ever give up hope and don’t ever stop believing in yourself. Believe in compassion, honesty and love. Believe in your dreams and your ability to achieve them.

Be unafraid. Be proud. Be yourself.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Zoonar RF.

48
48
0
TOPICS
JOIN THE CONVERSATION

5 Things People Don't Realize You're Doing Because You Have Chronic Fatigue

15
15
0

A video showing 5 things people with chronic fatigue can do.

15
15
0
TOPICS
Video
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.