Why My ME/CFS Diagnosis Meant Devastation, Not Answers

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I’d been feeling a bit off for a few weeks. I felt a bit sluggish and extra tired when I came home from work. Then my partner and I decided to have a house party to celebrate our new home together.

That day I didn’t feel right but I pushed through. I seemed to have an unquenchable thirst. I went to sleep on the bed while most of the guests were still there. I awoke to find myself in a world that was too bright, too loud, that drained my energy dry and left my skin with roaming numbness.

The doctors couldn’t find anything wrong, except for dehydration. It was put down to me drinking alcohol on the night of the party. Even though I’d also drunk gallons of water. Even though this was days before my bloods were taken. Even though my bone-crunching exhaustion was not fading.

I gradually became more ill. By the time I was unable to make it into the office to work anymore, I was sleeping 10 hours at night and four during the day. I was thrown from doctor to doctor. None would see me while I was booked in to see another.

I spent months and months thinking: “I need to know what’s wrong with me.” I thought that was the answer. I thought knowing what was wrong with me would be the thing that brought me back to full health.

I couldn’t have been more wrong.

A diagnosis can be many things. It can be trigger for treatment. It can mean the doctor gives you a prognosis, an idea of what to expect. Or if you have been living with an illness for years, it can be a vindication.

It may be that those who fight long years to be diagnosed with myalgic encephalomyelitis (ME) do feel a certain amount of vindication. But for me, what that diagnosis meant was a prison sentence.

It meant suffering from an illness that your doctor couldn’t really explain, couldn’t tell you what to expect, couldn’t tell you if you would get better.

Crucially, “You have ME,” did not mean: “We can fix you.” It meant that my only treatment options were ones based on a now-debunked piece of research called the PACE trial. The choice was graded exercise therapy or cognitive behavioral therapy.

These are treatments based around the idea that ME is caused by or prolonged by illness beliefs and behaviors, which translates as: we may have been ill initially but now we are only ill because we continue to think and act like we are.

However, there is ever-building evidence of the physiological nature of this disease. Researchers around the world are finding disordered metabolism in ME patients and are picking apart the mechanisms of our faulty energy production.

To be only offered treatments that are based on faulty logic and have no evidence-base means we currently have no effective treatments at all. In fact, a patient survey by the ME Association revealed that patients can actually find these treatments harmful.

This isn’t a story that ends on a happy note, but it does end on a hopeful one. One of the few benefits of that diagnosis was finding an online community of inspirational advocates for this disease who are fighting to make sure this neglect and harm to ME patients does not continue.

There are international protests taking place on May 12th in front of health departments and in public places to shout to the world: we are here, we shall not be ignored any longer. These are called the #millionsmissing protests for the 20 million people worldwide missing from their lives because of ME.

And ME patients are petitioning the U.K. government to debate the fact there is currently no effective treatment offered to ME patients. If I could ask one thing of you today it is this: sign that petition, share the protests, help make our voice louder.

I want to make sure that for future generations the words: “You have ME,” mean, at the very least: “there are proven treatments you can try.”

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Thinkstock photo by Michael Blann

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When My Health Keeps Me 'Close Enough to Normal'

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The house is a mess. Nearly every surface has something on it that needs to be put away. Six months ago we moved in, and left my knick-knacks in boxes on the floor until I could sort through them.

They’re still there.

Dishes stand piled on the counter.

A single piece of trash lies near my feet. I long to pick it up and get rid of it, but the garbage can is 12 whole steps away.

Then tomorrow comes.

I have energy!

I have motivation!

I walk to the neighbor’s house and play tag with my niece for nearly 15 minutes. Of course, then I have to rely on help to make her understand that I’m done. Really, I can’t do that anymore.

But hey, I got out of bed and moved for a half-hour. I must be “normal,” right?

Normal.

I can make supper. I just, you know, can’t make side dishes.

I can go for a run. I just, you know, only make it halfway to the road.

I can dance the night away, as long as my partner doesn’t mind catching me if I fall from exhaustion.

Normal.

I can look normal to my students for the few hours I work per week. Usually.

I can look normal at the mall as long as there are benches nearby.

I can look normal at the party if I wear makeup to cover my pale face.

Sometimes I even believe I am normal. That’s dangerous territory.

I watch as the little old lady stacks chairs at church. I believe I’m normal, but I don’t help her. I must be lazy, right?

I believe I’m normal, but the dishes lie unwashed in the sink. I must be a terrible housewife, right?

I believe I’m normal, but the house is a mess and I’m still on the couch. I must not care enough, right?

Nope.

I’m just close enough to normal to feel guilty when I can’t work.

I’m just close enough to normal to feel frustrated when I realize my body will not take another step.

I’m just close enough to normal to fool the people around me. Usually.

So I look around at my messy house, my dirty dishes, my cancelled appointments, and remind myself that I am not lazy, not a failure, not incompetent. I remind myself that I can’t, and that’s OK.

I’m just trapped in my not quite normal body.

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12 ME/CFS Symptoms I Experience That Aren't Talked About as Much

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There are a few obvious symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) which are often talked about, including fatigue, muscle and joint pain and brain fog, but in this post I am going to discuss the symptoms of the illness I experience that aren’t talked about as much. Brain fog can actually be split into separate symptoms anyway and it can be difficult to understand, so I have laid out a few examples below. I think it is so important for people to be aware of these symptoms as well as the main ones, as these can affect people during day-to-day life, even if they are on a “good day.”

1. Short Term Memory Loss

This is the first example of brain fog and it can vary; sometimes it can be as simple as “What did I come into this room for?” or “Wait, what was I talking about?” but other times I can’t remember what I had for tea the night before, or even for breakfast that morning! This symptom is really just a nuisance to be perfectly honest.

2. Sensitivity to Light/Sound

For some reason ME/CFS can affect my sight and hearing. I noticed this when I was on holiday in France just before my diagnosis and the sun would really get to me, more than normal and I found myself having to use sunglasses on mildly sunny days… in England! Sound also gives me some killer headaches if I’m not careful, especially listening to music with headphones, which is something that never bothered me.

3. Lack of Temperature Control

This one I also noticed when I was in France, as it was boiling hot and sometimes I would be shivering because I was so cold… and in the winter I can be sweating from being too hot when everyone else is freezing cold! This isn’t all the time but it happens enough for me to notice it.

4. Anxiety/Panic Attacks

I’m not going to go into too much detail as this is quite personal and I don’t feel ready to share my experiences with panic attacks yet. I would like to write about them one day, but now is not the time. Basically, some people with ME/CFS may have a bigger tendency to get anxious and have panic attacks.

5. Dizziness

This one is fairly self-explanatory. Sometimes getting out of bed is a struggle, especially standing up because I get so dizzy I have to sit straight back down again. These usually happen when I’m heading towards a relapse.

6. IBS

This is short for irritable bowel syndrome – I’m not going to elaborate for obvious reasons!

7. Sudden Headaches

Going back to the noise sensitivity – I can get headaches, suddenly. They can be very unpleasant and can does not help at all with the brain fog.

8. Swollen Glands

Now this one I always thought was from glandular fever but I’ve found out it is actually a symptom of my ME/CFS. It usually happens when I’m about to have a flare-up and my neck can get quite swollen and sore, as well as other areas where the glands are. It can get very uncomfortable and sore and if my neck is hurting, it tends to affect my shoulders, back and can cause headaches as well. It isn’t great!

9. Poor Concentration

This ties in with brain fog, as does the symptom below. I find I can’t concentrate on one thing for too long before I start getting headaches/fatigue etc. so I try and limit doing work to 45 minutes and have a 15-minute break before starting again – this technique works really well if I do mindfulness in between.

10. Difficulty Finding Words

You know when you have a word you want to use on the tip of your tongue but you just can’t find it? Yeah, it’s that. But it happens all the time. I’m being serious – sometimes it is the simplest of words, or a word you have literally just used and then suddenly you can’t find it. The other thing that can happen is muddling my sentences up so I can be talking and it just comes out in gobbledegook.

11. Insomnia

Naturally if you’re having a “bad day” and you’re resting all day, my body doesn’t recognize that it needs to sleep through the night so I can be awake for hours. It has actually been really bad recently as every night I was awake until 2 a.m., sometimes 3 in the morning and then I would be waking up at 7/8 and would only have a maximum of six hours’ sleep, if that.

12. Alcohol Intolerance

ME/CFS can cause you to become intolerant to certain foods/drinks and alcohol can be one of them. I got to the point where I had to swear off all alcohol for a few months and then slowly introduce it back in. However, I can go through phases where I can’t drink again so I just have to monitor it and see which types affect me more than others. Sometimes I can only drink wine, and sometimes it is wine that makes me ill.

Here’s a few questions to think about: How do these symptoms affect you, if at all? Can you add any new ones to my list? Have you found anything that helps any of these symptoms?

Hopefully this has helped any family or friends of people with ME/CFS to understand their illness a little bit more and if you have this illness yourself, I would love to hear from you. Remember to like and share if you found this helpful.

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

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Thinkstock photo by Stockbyte

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When Myalgic Encephalomyelitis Drains Your Energy

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It’s not that I’m hungover or can nap it away. It’s likely that I woke up, got dizzy and had to drop to the floor with weakness. It might be because I didn’t sleep at all or am running on two hours light sleep.

If I don’t have the energy to lift my hand to brush my hair because there is no energy in my cells, it’s unlikely I will make it to that thing we were going to do. And I’m truly sorry. I’m wretched with guilt for letting you down again. Believe me I want to be a better friend, sister, daughter, teacher, and colleague.

It’s not being able to exercise like I used to, hike, boxing, weights, dance, CrossFit, the list goes on. It’s because I never enter deep sleep my body never repairs fully. It’s stretching on my yoga mat at 4 a.m. in the morning because the pain and spasms and burning radiate through me, keeping my mind awake and distressed. It’s because I have to think out every step of an activity and make sure I’m safe, have a way home if I power down, and I do not want to cause a scene or be “that person” looking for attention because I have to mention the word illness, or be the one at a meal that says I can’t eat gluten, dairy, sugar, caffeine and alcohol…That I can’t make it out tonight.

It’s accepting I can never have kids as I struggle to keep a part-time job and have to lay down in bed, still not sleeping, as much as possible to rebuild some energy for the next shift. It’s accepting the same for not being able to see myself in a relationship.

It’s enjoying a coffee and a catch up with a friend, coloring with my niece, or a big family dinner. Those things make a beautiful day and after just those little snippets of connection, that feel like paradise that also wipe me out for the rest of the day. But it’s totally worth it to see your smile and hear your imagination; it makes my heart sing.

It’s because sounds and lights are amplified a thousand times through this migraine that my brain fog makes it hard for me to hear what you say sometimes, while my stomach sends nauseous waves through me. I feel inadequate because I see the look in your face, knowing that I’m not taking in what you say – but I’m trying hard to catch the words. Yet, it won’t go in fast enough and then I can’t recall words to continue a conversation so I rattle off safe words,”Really? Wow. That’s amazing. Well done. fair play.” The list goes on. It makes me look superficial and vacant and I hate it, because I feel you more than I hear you, but I’ve yet to master how to communicate that back.

It’s not being able to control my body temperature, rattling cold on the inside and clammy on the outside that make me pack two seasons of clothes each day. It’s sleeping on an electric blanket, with two heaters on covered in fleece pajamas and a hoodie, with my teeth rattling that leave me too drained to make my prior commitments. And I hate looking like a flake. I do have consideration for you and I promise if I can, I will.

It’s trying to pace starting my business and accepting the one step forward and the two steps back. It’s feeling like I’m living Alanis Morissette’s “Ironic” song…Don’t ya think?

But myalgic encephalomyelitis (ME) is also helping me to grow up and appreciate all the love and support I have in my life. My family are the most amazing people you could ever meet; they are pure love and compassion and they light up my world. It’s humbling to ask for so much assistance only to realize they were always there to help me. It’s the realization I’ve pushed people away with my stubbornness and independence and that ME has brought you back with unconditional arms outstretched for me.

That love continues when I take a stroll in the park and feel the trees share their strength with me. It’s slowing down long enough to realize there was never a race. And it’s letting the pain and the grief and regret in and holding it in my own loving embrace and sending back out that love and forgiveness to anyone else who feels it too.

It’s seeing that the world is in pain everyday, crying out for some balm and lighting a candle, wishing for it to find you quickly to take away your pain and bring you all the relief and happiness you deserve.

It’s a wild ride, a curse and a blessing, the biggest learning curve I’ve ever meandered and I couldn’t do it without you. All of you. Thank you.

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How Connecting With People With the Same Condition Has Helped Me

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When I was a teenager, nobody understood why I was feeling so sick. Not my doctors, not my family, not my friends, and least of all me. I wasn’t given a diagnosis by anyone. For all intents and purposes: I was healthy. During my teenage years, I refused to see myself as a sick person. I just wanted to go to school, be with my friends, go out and chase the dreams I had about my future. I pretended to myself I was fine, even though deep-down I knew I wasn’t.

Sure, I had to skip quite a lot of school days, parties and birthdays, but in my mind I always thought, “Doctors haven’t found anything, so starting tomorrow I’ll be fine again. Or next month. Next year at the very latest.” I continued with that approach all the way through university…Until my body completely shut down through severe thyroid problems, followed two years ago by Meniere’s disease which rendered me completely bed-bound.

Three months after first becoming ill from Meniere’s Disease, I felt good enough to start a new job for a couple hours a week. My body disagreed. One month into it, I experienced a severe episode of vertigo at work and had to be brought home. I was never able to go back without vertigo hitting me hard in the face. So soon after, I quit.

It was then that I finally started to listen to my body and knew it was time to accept that I was never going to be able to live the life I wanted to lead. It was time to completely change my frame of mind. I realized I wasn’t going to suddenly heal from a disease some people still doubted was real,particularly in my country of the Netherlands where it is still not an officially accepted diagnosis, but one that was making me feel very sick all the same. I had caused myself a world of hurt by ignoring the fact that whilst a diagnosis had never been given to me, my body was actually quite sick, and was getting even sicker. I realized I had been exploiting my body for almost 15 years.

That’s when, after finally realizing that my body is a force I have to reckon with, no matter how much I loathe it, I fell into a depression. I didn’t want to accept any of it. I wanted good enough health to chase after my dreams. I wanted that family. I wanted that social life. I wanted that career. I wanted to travel the world. I didn’t want to feel so sick every day. I grieved for a life that had been so close, but was now so far away – even though in actual fact it had never been close at all. I lost all hope.

I was left to pick up the broken pieces that was me and I had to grieve the life I knew I was never going to have. One day during that depression a year and a half ago, I was so done. Crying, I Googled, “Why am I so sad?”

I didn’t even Google my illnesses, I still wanted nothing to do with them, but I did google those five simple words. The articles that came up ranged from “everybody is sad sometimes” to explaining the brain chemicals involved. From there, I got onto websites where people who were struggling with the same things as me shared their stories.

From the very moment I Googled those words, I started to mentally heal. I have amazing parents and brilliant close family and friends who are incredibly supportive. But, I can still feel so alone when symptoms suddenly ruin our plans and the guilt is overwhelming, when my anxiety keeps me up at night, or when I feel upset about what my life is like these days. Thankfully, most of my loved ones will never fully understand what that is like.

Yet, finding people who I don’t personally know but who have the same health issues as me, who struggle with the same things and who have the exact same responses to symptoms has been eye-opening. I can’t quite say how much it has benefited me. It has helped me understand my emotions better, it has helped me understand my diseases better, it has helped me feel so much less alone. It has helped me get out of my depression.

Throughout the years, I had been so busy not accepting that I was sick that I had also kept far away from articles, books and sites on my conditions. It was my mum who did research and my mum who read the books on self-care that I should have been reading. But I ignored it all. If only I had realized the help that communities like this one could have brought me. But I wasn’t ready.

Now I finally am. I am sick and I am facing the fact that because of that my life isn’t typical. My life is, in fact, quite unique. It may not be as I had long envisioned it, but even this life has brought me gifts, even though some days I see them more clearly than others.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

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What It's Actually Like to Be a College Student With Chronic Fatigue Syndrome

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You might be reading this thinking, “Oh, just another teenager complaining,” but I can assure you this is not the case.

My name is Chloe and I’m a 17-year-old college student with moderate chronic fatigue syndrome. That might not sound that bad, but it’s debilitating.

selfie of college student with purple hair and necklaces and a caption that reads 'you think you're holy when you're not. I hate to break it to you baby, but your'e simply lost.'

It means my muscles are on fire after doing only one day at college. It means having to sacrifice a day out with my friends so that I’m not in bed feeling poorly a couple of days later for a week. It means not being able to work because it would kill me. It means having virtually no immune system to protect me from getting ill.

Chronic fatigue syndrome isn’t just being tired and it’s not being lazy. It’s being in chronic pain and being ill at least once a week.

I’m actually currently writing this while I’m lying in bed sick with the flu because of how terrible my immune system is.

Essentially, the point I’m trying to make is that a lot of people don’t understand what chronic fatigue syndrome is. When I tell someone I’ve done a six-hour shift once a week and it’s put me in bed ill, I usually get the response of, “Oh, you just need to get an early night,” and people don’t understand that it’s just not that simple.

So here I am, writing about my condition in hopes that I can maybe raise awareness – even just a little. Maybe I could do this regularly if people enjoy it.

Chronic fatigue syndrome isn’t just being tired. It’s being chronically ill.

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