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Why I Believe in the Power of Positive Thinking When I'm Ill

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I often read or hear comments about the irritation that patients feel when someone tells them they should think positive thoughts in order to improve their health.

“Be more positive,” they say, “stop thinking and talking about your illness and you’ll feel better.”

However well-intended these people may be, this sort of advice really doesn’t help. In fact, it usually creates resistance and even resentment. After all, positive thinking is not a cure for our health conditions, right? I mean, really, I’ve heard about books written by people who claim that they were cured by positive thinking! This is upsetting because well, if there were an actual cure for chronic fatigue syndrome or any other autoimmune disease, we’d know about it and the author who’d discovered that cure would likely be rich and famous.

So, why does the power of positive thinking keep popping up in so many conversations? I believe that it’s because there is something to it. As it turns out, our thoughts have huge, unsuspected powers over our body at the cellular level.

In the last decade, science has actually proven that the ideas in our brain do have a tremendous impact on every cell in our body; and yes, thoughts can heal us at the deepest level. Ideas and notions can also be destructive, make us and keep us sick. There is only one way to find out if this is for real, and that is to investigate and then, just do it.

I can tell you from personal experience that learning to change your inner dialogue is not something you do once in a while if you want to see improvement in your health. It requires taking responsibility for everything that goes on in your life and making a conscious decision to choose the thoughts that will fuel your emotions in a direction that leads to peace, gratitude and compassion – emotions that nurture health and well-being. There are several ways to do this and anyone can find what works best for them.

I began by choosing a few affirmations that make me feel good and wrote them on post-its that I could see on a regular basis. Then, I started saying them out loud, sometimes to myself in front of the mirror. The next step involved listening to guided meditations during naps or bed rest. I also found books that inspired me to modify my outlook on life as I learned new ways of thinking.

It does take practice and discipline, but over time you start to change the way you respond to life. I noticed that I became calmer, less quick to judge and kinder to myself and to others. I also noticed that my energy levels became more stable and pain levels more manageable. Basically, I am a happier person today. It’s a process. It takes time. But ask yourself, “Am I not worth the effort?”

There’s a commercial that ends with this question: “What’s in your wallet?”

Here’s an even more vital question: “What’s in your mind?”

Follow this journey here.

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Thinkstock Image By: SIphotography

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The Power in Defining Your Chronic Illness

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I write to you today from inside a café at my university. There is the quiet mumble of voices, the clinking of cups and the bittersweet smell of coffee lacing the air. Cafés are quite possibly my favorite place in the world to write, but unfortunately, I barely visit them anymore.

According to the world, I could look at this situation in one of two ways. I can be disappointed in the fact I can no longer sit here for more than an hour before going home and having an energy crash. Or, I can be thankful that I’m just here in the first place, and be grateful because things could be so much worse.

The reality of my feelings towards the restrictions I’ve had to place on myself for my own well-being since I’ve been sick is much more complex. Like with everything related to chronic and incurable conditions, nothing is ever black and white. Life isn’t consistent or predictable when you spend every day praying that your body just holds it together for one more day, every single day of your life.

The way I describe it, it sounds like my whole being is defined by my illness. I feel like this is one of the biggest fears of those with chronic illness – being defined by your illness equates to being controlled by it.

Having had almost a year to think about what life changes are bought along with myalgic encephalomyelitis (my most recent diagnosis), I’ve been through a whirlwind of emotions. The uncertainty and ever-changing
symptoms of my conditions mean that I’ve been on edge and living in fear for a long time. That, as well as the crushing disappointment of, “there is no cure,” and even worse, “I can’t help you,” left me in limbo and all consumed by managing this illness. In the end, I realized that in fighting my condition so valiantly, I had done exactly what everyone told me not to. All my actions, my thoughts, and my whole way of life became underlined with the limitations of illness.

And yet…

I am 100 percent OK with this.

Because my condition doesn’t define me. I define my condition.

I define how much I let it affect me, how much of it I show to the world, how much I want to make it part of me. Constantly considering the impact of my actions has made me a more aware individual, not just of my limitations, but also where I can excel. In refusing to not consider my condition in my life, I would’ve ended up letting my illness control me. In my opinion, constantly burning myself out and ending up with aching joints, a head full of cotton wool and forgetting where I am, is letting my illness control me.

By working with it, rather than living like it doesn’t exist, I have freed myself. I can do some of the things I love, but I must appreciate the energy it takes. Now, I spend time doing things I really want to do, rather than letting my days fly by.

I think we need to let go of the notion that being defined by illness is the worst thing that could happen to any of us. The more I butt heads with symptoms, the more obvious they become. Many of us were told as children that you shouldn’t care what people think, and the more time you spend focusing on being normal, the unhappier and sicker you will get. Everyone has limitations. Appreciate yours, and work with them. Otherwise, you might miss out on life, and that is personally my biggest fear of all.

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How a Relapse of ME/CFS Caused Me to Develop Anxiety

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I’m going to tell you something only my husband, parents, sister and one friend know. Why would I share such a secret with thousands of people? Well, I hope having the courage to do so helps some of you know you’re not alone in your experiences. So, here goes.

I have anxiety.

 

I know for some of you that may not sound like a big deal. Some of you are already fabulous at opening up about your mental illnesses. That’s not me; well, not until now.

Why have I kept quiet about my anxiety until now and not told even some of my closest friends? Two reasons, I think:

Firstly, I don’t want it to detract from my primary illness – ME/CFS. I don’t want people to get confused. The reason why I can’t work, the reason why I’m housebound is due to ME, not anxiety.

Secondly, I’m embarrassed. Yes, there it is. I know being ashamed of mental illness and hiding it only goes to raise the stigma that surrounds it. So, it is time to make amends.

I’d struggled with severe ME/CFS for about four years when, without warning, I experienced a major relapse. Through pacing, I had managed to introduce some sort of stability to my life (albeit at a very low level). Suddenly, I was all over the place again and in a very dark place.

After six months, I finally discovered I had an overactive thyroid. When my thyroxine levels had been remedied, I was surprised to find, however, that I still felt stressed out of mind. My heart continued to beat a million miles an hour (day and night) and I was extremely shaky. I thought my thyroid had gone overactive again but blood test results came back normal. I was baffled.

Eventually, I got the diagnosis of anxiety. I had no idea you could feel anxious all the time for no apparent reason. It seems that somewhere between my ME relapse and my overactive thyroid diagnosis, the stress had all gotten to be too much and I had also developed anxiety. And, to be honest, it was a relief to get a diagnosis.

Many of those who live with chronic illness may experience either depression or anxiety (or both) at some point. It’s hardly surprising. When you have a chronic illness, you are continually under stress:

– There’s the stress of trying to live with such acute symptoms.

– The stress of not knowing how you’re going to feel the next hour, the next day and whether you’ll be up for that friend’s visit on Saturday.

– The stress of having to try to deal with life things such as doctor appointments, phone calls and forms to fill in, all while feeling like you have the flu.

– And above all, the stress of having to deal with all this 24/7, 365 days a week. People with chronic illness don’t get evenings, weekends and holidays off.

– Oh and don’t forget, the stress of not knowing what your future holds and if you are going to feel this ill forever.

My GP suggested I try an SSRI antidepressant for my anxiety. At first, I was reluctant. ME/CFS patients often have to fight society to prove their illness exists and it is not depression (not to put depression down at all, it’s just a very different illness). But, to be honest, I didn’t really have much choice; I was all over the place and desperate to bring back some stability to my life and try to slowly move forward with the ME/CFS.

The SSRI antidepressant I take has certainly helped to reduce my anxiety levels. On bad days with ME/CFS, I’m as about as anxious as a lump of rock. On good days with ME/CFS, the anxiety is usually bubbling quietly in the background and hardly bothers me. Occasionally, my anxiety will flare up. I have specific triggers, but generally they are related to something such as noise which doesn’t let me rest properly. It always comes down to a subconscious fear of my ME becoming worse (and, at worst, relapsing). If I increase my SSRI antidepressant then the anxiety goes away completely, but I feel much more sleepy and fatigued. It’s all about finding a balance that works.

For any of you going through the same thing, there’s a great quote I try and remember: “Mental illness is not a sign of weakness; it’s a sign of having tried to remain strong for too long.”

Well, that’s certainly true for us chronic illness warriors.

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Thinkstock photo via Rasveta.

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My Life as 'Little Miss Brain Fog'

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Little Miss Brain Fog lived in a normal house on a normal street surrounded by normal people.

little miss brain fog cartoon

Little Miss Brain Fog also looked normal, but had an illness with an extraordinarily long name, myalgic encephalomyelitis, which it is easier to call ME.

 

Like its name, myalgic encephalomyelitis is also rather complicated and extraordinary. The illness made Little Miss Brain Fog feel like Little Miss Dotty, Little Miss Scatterbrain, Little Miss Fickle, Little Miss Whoops, Mr. Bump, Mr. Topsy Turvey, Mr. Forgetful, Mr. Lazy, Mr. Muddle, Mr. Dizzy, Mr. Grumpy, Mr. Clumsy, Mr. Worry, Mr. Slow and Mr. Grumble all rolled into one.

Along with a few others you may not have heard of before, such as Little Miss Ouch, Little Miss Confused, Little Miss Sleepy and Little Miss Lonely. In the morning when it was time to get up, Little Miss Brain Fog found it very difficult to get out of bed because of feeling unwell and tired. People thought she was like Mr. Lazy, but she really wanted to be up and doing things like Little Miss Busy and Mr. Rush.

Once out of bed, Little Miss Brain Fog used a lot of energy getting her breakfast and getting ready. It was hard work and she felt very like Mr. Slow.

Little Miss Brain Fog has difficulty doing things for herself and often needs help. This makes her feel like Little Miss Useless.

After getting ready, Little Miss Brain Fog tries to do things, but because of feeling ill and not being able to concentrate or think properly, she feels like Mr. Muddle, Mr. Clumsy, Mr. Dizzy, Little Miss Dotty, Mr. Forgetful, Little Miss Scatterbrain and Little Miss Whoops all in one. This is what brain fog feels like and why she is called Little Miss Brain Fog.

Little Miss Brain Fog finds it difficult to get out and meet people and join in activities. People think she is like Mr. Rude and Mr. Uppity, but it’s actually because of the brain fog and feeling so ill and in pain. All the other people in Normal Town seem to have fun and know lots of people and do lots of things. Little Miss Brain Fog feels left out and lonely as well as being ill.

When Little Miss Brain Fog does go out, she feels like Mr. Silly as she needs to use a wheelchair and people don’t think “normal-looking people” should use wheelchairs. As well as not being able to walk, Little Miss Brain Fog finds the light, noise and business of Normal Town very overwhelming and just wants to go home or find a place called Peace and Quiet Land – which doesn’t seem to exist.

Little Miss Brain Fog has to rest during the day, but she really wants to be like Little Miss Helpful, Little Miss Busy, Little Miss Quick, Little Miss Tidy, Little Miss Fun and Little Miss Somersault.

Little Miss Brain Fog tries her hardest all the time and wants to be like Mr. Strong and Mr. Perfect, but the harder she tries the worse the extraordinary illness becomes and she feels like another unknown Mr. Pathetic.

Have you ever tried to run a marathon through treacle while in pain, with lots of noise and flashing lights around you, while carrying the weekly shopping? You haven’t? This is what doing a very ordinary task feels like to Little Miss Brain Fog – for example, walking upstairs and then when you get to the end you become Little Miss Scatterbrain and forget why you are there and have to do the whole marathon again.

Have you ever been so tired that all you want to do is go to bed for a good sleep? Little Miss Brain Fog feels like this all the time, but when she tries to sleep, she can’t – how very peculiar!

Have you ever spun around until you feel so dizzy you fall over? This is what Little Miss Brain Fog feels like standing still. How bizzare!

Little Miss Brain Fog might look normal, or appear to be like Mr. Lazy, Little Miss Scatterbrain, Little Miss Whoops or Mr. Rude. Actually, she is like some very special people inside, such as Mr. Strong, Mr. Impossible, Mr. Clever, Mr. Brave, Mr. Good, Little Miss Splendid, Little Miss Star, Little Miss Wise, Little Miss Brainy and Little Miss Stubborn.

She would love to be Little Miss Sunshine, Little Miss Giggles, Little Miss Helpful, Little Miss Busy, Little Miss Fun, Mr. Happy, Mr. Bounce, Mr Clever. and Mr. Busy.

So remember: the next time you see a person, they might not be who you think they are. Appearances are deceptive.

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The Words I Wish I Had Heard When I Became Ill

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Last year I lost my career to the much misunderstood illness, chronic fatigue syndrome. I was unable to get out of bed for three months. It took another six months to leave the house. While there was no shortage of well-meaning advice, I still felt alone and misunderstood, longing for someone to say something truly helpful. Finally, during Martha Beck’s writing course, “Write into Light,” I wrote the words I wish I had heard. Maybe, in the end, all we really need is for someone to be with us exactly as we are:

I am here.

I know you cannot believe what has happened. You didn’t deserve this.

Some people will tell you bad things happen to good people, that no one escapes the suffering. Others will tell you it is all an illusion, some cosmic game designed to wake you up and enlighten you. Right now, you feel that both perspectives are a crock of shit. Neither helps you in this moment, when the pain is so bad it affects your breathing, when you feel that you can’t go on.

I’ll be honest, I wanted to tell you that there is nothing wrong, that at some soul level, everything is unfolding as it must, that some part of you chose this. That is what I was going to say to you today, but the words stuck in my throat.

So, instead, I will hold your hand. I will make you tea. I will stroke your hair as you cry. I will listen to you as you tell me how life is for you right now.

I will not make you wrong for feeling as you feel. I will not try to impose my view of reality onto what I cannot know to be true for you.

I will not leave you alone in your pain. I will not present myself to you as someone who knows anything better than you. You are the authority on your own life. I am done with platitudes and promises of future bliss.

This is where life is happening, here I am in the pain, the snot and the disappointments. The broken heart is real, the pain in the body hurts, the grief of losing what you love tears you in two. I will not minimize this.

Can I just sit with you? Can I just love you exactly as you are?

That is all I have to offer you today.

Two people holding hands.

I cannot fix anything for you, it is not mine to fix. All my words are meaningless now. Perhaps, in your own time, you will find your own words, your own path. Perhaps, not. How could I know?

Today, this is my path: to be with you as you face this unexpected horror that has left you bereft. The only thing I know for sure is that I will no longer reject this moment, no matter what is arising. I will not reject your experience or mine. I will not overlay this present reality with words of encouragement, no matter how well intentioned. I will not tell you how to feel, how to live, how to heal.

I looked into my heart today, for the wisest words I could give to you.

All I found was “I am here.”

Follow this journey on Susan Telford.

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Thinkstock Image By: natalie_board

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Researchers Find Evidence Chronic Fatigue Syndrome Is an Inflammatory Disease

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A new study has found a link between chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS) and 17 markers of inflammation found in the blood — indicating that not only does the often-doubted condition have a real, biological basis, it may be diagnosable with a blood test.

What the Research Says

Using blood samples from 192 patients with ME/CFS and 392 people without the condition, researchers from the Stanford School of Medicine found significant differences in cytokine levels — immune-system signaling proteins found in your blood — between those with and without the condition.

After analyzing 51 cytokines, the study, which was published in the “Proceedings of the National Academy of Sciences,” discovered that the levels of two different cytokines were markedly different in those with ME/CFS. Among those with the condition, levels of 17 cytokines varied based on the severity of their symptoms.

Of those 17 cytokines, 13 were found to be “pro-inflammatory,” suggesting that inflammation drives ME/CFS. This connection to the immune system may explain many of the symptoms people with ME/CFS experience, which are often described as “flulike.”

Interestingly, some cytokine levels were lower in patients with mild ME/CFS than in the healthy control subjects, but higher in patients with severe ME/CFS. Lead author Dr. Jose Montoya, who oversees the Stanford ME/CFS Initiative, said he believes this may reflect varying genetic predispositions among patients, which could help explain why some people have a more severe form of ME/CFS. The study also shed light on a possible reason why more women have ME/CFS than men — as women tend to have more leptin, one of the cytokines associated with disease severity, in their blood.

What It Means For You

With measurable differences between the blood of those with and without ME/CFS, researchers say their findings could lead to a diagnostic blood test as well as pave the way for future treatments.

“There’s been a great deal of controversy and confusion surrounding ME/CFS — even whether it is an actual disease,” said Dr. Mark Davis, the director of Stanford’s Institute for Immunity, Transplantation and Infection and the study’s senior author. “Our findings show clearly that it’s an inflammatory disease and provide a solid basis for a diagnostic blood test.”

More research is needed to establish any cause and effect between the inflammatory cytokines and ME/CFS, but Montoya told Stat News that the research gives an idea about the type of inflammation patients are experiencing, validating the disease.

“I have seen the horrors of this disease, multiplied by hundreds of patients,” he said. “It’s been observed and talked about for 35 years now, sometimes with the onus of being described as a psychological condition. But chronic fatigue syndrome is by no means a figment of the imagination. This is real.”

Thinkstock photo by Martynasfoto

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