Why I'm Running for ME/CFS

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I was diagnosed with chronic fatigue syndrome in October of 2013, after a year and a half of doctor appointments, being probed and prodded, filling out form after form after form… and many, many spells of Google searches and occasional bouts of hypochondria. I was at college when flu-like symptoms hit me like a sledgehammer. And my local doctors were at a loss – there was nothing visibly “wrong” with me. They suggested I may be depressed, under the weather or stressed from living the life of a university student completing a master’s.

As many in my position have probably felt, I started losing faith in the medical establishment as well as doubting my own sanity. Having always strived to work hard, do my best and, in recent years, turn into the best runner the world had ever seen, my sudden lack of energy had me wondering if I’d slept through a personality transplant and turned into a lazy leech. I went from running 20 kilometers just for fun to losing my breath from walking up half a flight of stairs. My short-lived dream of taking the world by storm through running (I was going to run the length of continents and enter 10 marathons a year) was in jeopardy and so was my livelihood.

I finished my master’s degree and moved on to the world of working women – I had rent to pay, a motorbike to maintain and trips to save up for. The only problem was that I started getting sicker. The flu-like symptoms were outdoing themselves, transforming me into a person who stuttered, couldn’t count to 10, stopped running and even exercising every day. I wanted to have more than a five-minute conversation with my friends and family. The only person I could spend time with was my boyfriend – and that was because we lived together. My parents were worried, my friends thought they had lost me and I was petrified of what was to come.

And so I found myself, another sick day claimed, sitting in a doctor’s office thinking that I would, once again, be told there was nothing wrong with me. My headaches were a figment of my imagination, I didn’t have a cold, my tonsils were not swollen and my fatigue (constant bone-aching fatigue) was probably due to lack of sleep and depression. A steely resolve settled over me – I was not going to let the doctor walk all over me…again.

I did start crying that session…but it was out of relief. I had a diagnosis. The past year and a half of testing and agony had managed to result in the diagnosis of chronic fatigue syndrome – followed by the caution: “We don’t know how to fix it, what causes it or how you can get better.” I didn’t care – there was a name for what was happening to my body and my mind. I could do research, I could hunt for answers and most of all, I wasn’t making it up!

And so began the long and arduous struggle to get better, to get back to my dreams, to start running again. Thanks to the Chronic Fatigue Clinic in Edinburgh I learned about pacing myself, learning to say no and learning about what I could and couldn’t do.

I made life-altering changes – I changed my job, started talking to family and friends and started walking. Walking led to jogging a few hundred meters at a time. Slowly a hundred meters turned to a kilometer and just kept on going. I started being able to stretch my legs out to sprint, feeling the steady beat of my feet pounding against the ground.

I am still on the road to recovery but am firmly on my way to being the strong woman I know myself to be. I couldn’t have done it without the support of family, friends, understanding doctors who no longer see ME/CFS as “Yuppie Fever” and my loving partner. I have the support structure in place to help me get better and get back on track for running across a continent. Or two.

Not everyone out there has been as lucky and had the same support structure to help them out. Everyone needs someone to stand by them and let them know it is real, it is hard and there is something you can do about it. This is why I am here. I can help make a change. I have not let this debilitating autoimmune disease get the better of me and more people need to know about the impact it has not only on the person, but on their families and friends.

This is why I am running for ME/CFS. I am running because it is my passion, my dream and a medium to show we can get better. I ask for those around me to help through support, understanding and/or spreading the word that ME/CFS exists and needs the attention it deserves.

marlene wearing a hat and running outside next to pictures of roads and nature where she runs

I am pledging to run one race a year to raise both awareness and funds for ME/CFS. Together we can make a difference, show we care and be part of the support structure for those in need.

#RunningForMECFS

This post originally appeared on Marlene’s Running for ME/CFS Facebook page.

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To the Valentine of Someone With Chronic Fatigue Syndrome

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Dear Valentine,

I’m writing you this letter because it’s Valentine’s Day!

Valentine’s Day is a special time to let the ones you love know how they’re loved and appreciated. And, my valentine, you most certainly are loved and appreciated!

man and woman on green lawn

When you signed up for a life with me, you couldn’t have known what was to come. Like me, you probably hoped for a long, happy life together — a life full of zest and adventure and, most of all, love. We’ve had those things for the most part, but how were we to ever know that chronic fatigue syndrome would come along and throw a wrench into all of that?!

Over the years, we’ve mourned the loss of many things this illness has stolen from us–the energy to enjoy the life’s little extras, the ability to parent with the gusto we desire, nights out on the town and our shared passion for physical activity and the great outdoors. Dealing with the loss of those things wasn’t easy, but you shouldered it with me, and for that I thank you.

But I’m not writing you this letter to bemoan the things we’ve lost. I’m writing this because I wanted to acknowledge the little ways in which this illness has actually helped me grow my love for you…They say one’s true colors show in times of crisis – well, four years into this health crisis, I’m confident in saying your colors are absolutely golden! Your steadiness, your understanding, and your ability to step up when practical help is needed, have made me love you more and more each day! You are loyal, kind, and downright dreamy. I couldn’t want for anything more in a partner.

Oh, and if this illness never lets me have a night out again? I’ll remind myself that there are few things that measure up to a cozy night at home with you anyway!

All my love,

Adele

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When 'Simple' Tasks Aren't Simple Because of Myalgic Encephalomyelitis

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I’ve decided to write about a problem I’ve encountered from the moment when I got sick and never got better.

I’ve had myalgic encephalomyelitis or ME for eight years now. Over and over again, I encounter the problem of how people who aren’t sick don’t have to think about certain things because — well, they aren’t sick.

One of the things that may challenge sick people is leaving the house. A lot more that goes into leaving the house, than just walking out door. First you have to preserve your energy before any event, which means when you have to venture outdoors, you hope you aren’t going to have a random flare. You also hope that just resting will prepare you for the event.

Next, you have to figure out when or whether you can bathe before you go out. And if you can’t bathe you have to figure out what you can do to appear clean to others. Maybe you can use dry shampoo, baby wipes and deodorant.

Then you have to figure out what to wear. If it’s a high pain day, you need loose and comfy clothing. You also have to prepare for the temperature you’ll be in for the majority of the event. Most of us with ME are have a hard time controlling our temperatures, so we have to be particularly mindful of how much or how little to wear. Our clothing choices must be easy to put on, either for us or our carers. Putting clothes on can be very difficult and painful.

Then, there’s the problem of transportation. Public transport can be a struggle for many of us with chronic illnesses. We have to wait around for it and then there’s not always seating. It can run also run late. If it runs late, you have to wait longer, which sometimes is just not possible.

Taxis are great. They can pick you up and drop you off from door to door, but they’re expensive. Just sitting as a passenger in a car can be absolutely exhausting. Sitting in one position for any amount of time can be extremely uncomfortable, and discomfort often leads to pain.

Another concern is whether we are going to have to be social when we get to where we’re going. If it’s a doctors appointment, I have to have a written list of what I need to say; otherwise, I’ll likely forget something. If I’m going to see anybody else, then socialising is also incredibly exhausting. I have to listen and understand what someone is saying, and also come up with responses that make sense.

People with ME also have to take into account how far we may have to walk once we get where we’re going, where toilets are, and whether there will be any seating if we get too tired to stand.

Finally after the event is all over, we have to travel back home, get changed, maybe bathe and maybe eat.

Eating may also seem as though it takes no effort at all, however, sitting upright, chewing and swallowing can all take a great deal of energy.

Any event that requires a person with ME to leave the house is not necessarily an easy task, no matter how simple it may seem to a person without ME.

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Lead photo by Thinkstock Images.

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To My Friends Who Didn't Know the 'Me' Before Chronic Fatigue

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Dear Friend,

I’m writing you this because our friendship our has grown into something beautiful over the past few years, and I’m also writing this because friends should be honest with each other. And if I’m really honest, I’d have to tell you that there are two things I have been dying to tell you…

The first is that I wasn’t always like this. If you knew how often I have I wanted to say that, you’d think me strange. I want to tell you that I looked different, maybe more youthful, certainly more athletic. I had interests. I went out in the evening. I spent more time with friends and held a full-time job. I liked dancing and running and biking and going out on the town, but most of all, I felt different. I was happier, more energetic, sillier, more fun. I saw brighter futures, potential and opportunity. I was lighter and busier and just more. In fact sometimes I’m so desperate to tell you this that I want to scream it out loud. I wasn’t always like this…

But then I want to say — what I really want to say — is simply… thank you.

Thank you because you never demanded this explanation of me. So often I see myself as two people — the person before this illness and the person after it. I know it’s silly and despite overwhelming evidence to the contrary, I can’t help sometimes but think that my old friends stuck by the “new me” out of some sense of loyalty or duty. But for you, there is no “new me” or “old me” or anything else. There is just “me” – good enough as I am to find an awesome friend like you! You see, the greatest struggle with this illness outside of the everyday physical stuff is believing that, in spite of everything I have lost, I am still enough. And the knowledge that the me-after-chronic-fatigue is enough to befriend your awesome-ass is incredibly affirming, more than you know. So, thank you for that.

You know, I’m not sure I’ll ever be able to see myself outside the parameters of “before” and “after” this illness or if I’ll ever really let go of the notion that I was somehow “more” of person before chronic fatigue wreaked havoc on my life. But on days when thoughts like that get me down, I will try to see myself through your eyes.

Lots of love,

Me

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To Those Who Have Been Confused Because I 'Don't Look Sick'

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To anyone who has ever said (usually with a slightly confused-sounding tone), “But you don’t look sick?”

You are right. Sometimes, I don’t look sick. In fact, sometimes I can look quite well. It even confuses me on the days when my face looks healthy, as often it is so far removed from how I actually feel in my body.

What you don’t see are the days and months where actually, I do look incredibly sick. Where there is no way to hide how unwell I feel and no amount of makeup can cover up my glassy eyes and yellowy toned skin.

These words and the ones I am about to write to you don’t come from a place of self-pity, but from a place of reality. A reality, that actually, millions of people are living, most of them behind closed doors. It’s something I think needs to be spoken about more openly to raise awareness of a condition that is so misunderstood.

Think of pain. Any type of pain. You can’t visually see it can you? Sometimes you can see someone wince in pain, or see the pain etched on someones face, but usually, it’s hidden. If you have a headache, it’s not visible is it? Perhaps think of a time you have felt emotional pain. Maybe cast your mind back to a time when you felt deeply hurt, anxious or heartbroken — could people visibly see it? During those times when you had to put on a brave face and step outside the front door, was how you truly felt on show to anyone outside of yourself? Not really.

Many of us are conditioned to hide pain. To hide suffering.

One of the reasons we do this is perhaps that it feels safer somehow, to keep it close to our chests, to retreat, to only let those who are the closest to us enter into this darker side of our world. It is seen by many as a sign of weakness to show suffering, to show pain, to show fear, when in fact, it is part of being human. No one has a life purely filled with light; darkness is as much a part of it all. It just can seem easier to only share the joy. The happy times. The success and achievements and milestones.

To keep ourselves safe and cocooned during tough times and put up a protective invisible guard around ourselves, can in some ways be a survival instinct to many of us. But it can also leave those of us with invisible illnesses open to so much misjudgment, misinterpretation and confused sideways glances due to so much of our reality remaining hidden.

Facebook feeds are filled with smiley faces and snapshots of happy moments, when in fact these photos are only the tip of a mammoth iceberg, underneath which the struggle and larger part of our lives remains unseen.

It confuses people. And understandably so. I would be confused if I was to glance over how my life may sometimes appear to an outsider or an acquaintance.

For months at a time, you won’t see me post on Facebook, and you won’t see me out and about. This is because during those times I’m housebound and encountering suffering on a level I didn’t even know was possible until this illness came into my life. I embrace the better days, just as so many others in a similar position to me do, because I want to lead as much of a normal life as I possibly can. However, just because I look OK on those days, it doesn’t mean than I am.

Seeing me in a shop looking happy and well could be a tiny percentage of that month. I will have had to rest before I left the house, and rest again when I get back home, but people don’t see that. More often than not, symptoms are hidden, and usually when I am out, I am enduring a fatigue so deep that it’s hard to begin to explain how this feels to someone who hasn’t experienced it. Makeup works wonders and the happiness that comes alongside a day where I can get out and about, sometimes after long periods of time at home, is what you may misleadingly see through the sparkle in my eyes.

I hate the judgement and misunderstanding that can come alongside this.

When you are living with a chronic illness and glimpses of better days come along, you just want to try and enjoy what you can and distract your mind from what is going on inside your body. In an attempt to have some sort of normality on those days. Your pale face, is covered up. The spaced-out, exhausted feeling that never leaves you is disguised through experienced practice, and the crushing feeling and urgency to go home and lay down isn’t seen, because it’s not until the last minute when we excuse ourselves and leave the room when this would even be visible to an outsiders eye.

The background feeling of uncertainty and distrust in your body due to the sheer amount of times it has crashed and relapsed and let you down over the years is something people aren’t even aware of. The trepidation you can feel on a day-to-day basis, and the sense of vulnerability that comes from living in a world that often resembles a roller coaster, as well as the isolation and the continuous wondering if life will ever be “normal?” All hidden.

I have done so much work on letting go of what others think, but it doesn’t mean it still doesn’t get to me from time to time. It doesn’t mean I’m not aware that I often look perfectly fine. That my face very often does not actually match up with what is going on inside my body. I write this as much for anyone else in this position as much as I do for myself. People with invisible illnesses, whatever they are, deserve compassion and understanding, be it myalgic encephalomyelitis/chronic fatigue syndrome, Lyme disease, depression, multiple sclerosis, cancer (yep, even cancer can be invisible. My dad passed away from cancer last year, and it wasn’t until the very latter stages you would visibly know anything was wrong with him).

Bear in mind, that the days when we do look incredibly sick, and trust me there are plenty of those, are often the days we are at home. Sometimes for months or years at a time.

On closing, one last thing I’d like to say, is that many illnesses, such as ME/CFS, can fluctuate massively. These fluctuations, sometimes happening on a day-to-day basis, sometimes over years, can be confusing. I had a period of time in my mid-20’s where I could work and lead a relatively normal life. Yet I spent the most part of 2010 to 2012 unable to leave my bed, tolerate external stimulus or care for myself.

My intention as I write this is to just gently open the eyes of any of you who are a little confused by my face that sometimes looks quite well. To ask that if you know someone, who is suffering with an invisible illness, show them some love, some kindness and a little understanding. Don’t be so quick to judge. So often, people are fighting battles we know nothing about, and that goes for all of us, not just those who are chronically unwell.

A smile and a flick of mascara, on one of the better days, can cover up a whole world of hidden depths.

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19 Things You Know to Be True When You Have Chronic Fatigue Syndrome

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It’s difficult to truly understand what chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is like unless you live with it yourself. Within the CFS/ME community, you’ll find millions of people who completely understand the unique frustration of not having the energy to shower, and can empathize with the fact that “just get more sleep” isn’t very helpful advice.

We asked our Mighty readers with CFS/ME to share the truths you’ll understand if you live with the condition, too. If you can relate to these, know there’s an entire community out there of people who know firsthand what you’re going through.

Here’s what the community told us:

1. “‘I’m exhausted’ isn’t an exaggeration. It’s legitimate exhaustion to the point of nausea and shaking. A nap won’t fix it.”

2. “I’m not lazy. I’m constantly in a fog I can’t escape from. It doesn’t even matter how many hours of sleep I get, I never wake up feeling fully rested.”

3. “It isn’t our fault that we don’t have the energy to do the same things you do… And no, sleep will not help!”

4. “Taking a shower can be an absolutely exhausting endeavor.”

5. “Fatigue and being tired are two completely different things. Healthy people usually think they’re the same. I’ve often talked about being really fatigued and gotten the response, “Yeah, I’m really tired, too.”

6. “The disoriented sensation of physically being somewhere but mentally being up in the clouds because you’re just that tired.”

7. “It’s easier to eat something while standing in front of the refrigerator because walking across the kitchen and collecting proper dishes and actually heating something is too exhausting to even fathom doing.”

8. “Guilt – there is always that feeling of ‘I should be doing —’”

9. “The name is completely inappropriate. ‘Feverish, sweaty, palpitations, dizzy, feel like boiled over crap, exhausted, allergic to everything, insomnia city, weak-as-a-kitten, inflammation town, bla bla bla disease”… Is there an acronym for that?”

10. “Netflix saves lives.”

11. “The concept of ‘pushing past/pushing through’ your limitations no longer applies to you. Our bodies don’t work that way.”

12. “The frustration that comes with random people messaging you trying to sell you a vastly overpriced vitamin supplement with the promise to cure you because it ‘cured’ their *insert relative here* of their chronic fatigue.”

13. “How happy you are with only one small accomplishment each day that to others would seem trivial.”

14. “Just because I can find the little spark in me to do the things I love doesn’t make it any easier. It just means days of downtime to repair my body from all the energy I used trying to be fulfilled and happy.”

15. “It isn’t all in our minds, despite what people may think.”

16. “Some days it feels like I am walking through wet sand up to my hips and I have concrete blocks on my arms and legs! It is not a ‘tired’ thing, it’s a pure and total exhaustion!”

17. “Anything is a lean-able surface if you try hard enough.”

18. “I am not ‘lucky’ to nap during the day. If you think that I am, you don’t understand chronic fatigue.”

19. “Having energy and stamina is not a matter of will. If we could will ourselves to feel better we most certainly would. Just like you cannot will away a flu or a headache, we cannot will away CFS/ME. And trust us… we have tried!”

If you have CFS/ME, what’s one thing you know to be true? Share in the comments below.



19 Things You Know to Be True When You Have Chronic Fatigue Syndrome
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