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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How I Learned to See My Shower Seat as a Power Seat

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Living with chronic fatigue syndrome as a teenager can be quite intimidating. As a means of trying to explain to my peers what it’s like, I often use the description of “It’s like having an old lady in my body but I just look like a teenager.”

 

This description seemed to stab me in the back when my occupational therapist suggested I invest in a shower seat so I wasn’t tiring myself out standing in the shower, or being caught by a sudden temperature fluctuation and having a long way to fall. I had been adamant that I didn’t want a wheelchair at college because of the attention being “disabled” can draw, and I felt the same way about this shower seat. Even though nobody could see me behind closed doors, I felt like an elderly lady. My wonderful mum brought me the chair a few days after my session with my OT and was super encouraging and attempted to make me feel better by saying we could “pimp it up a little.” But I was too focused on how it reminded of something you’d find in a hospital.

The first night I eventually managed to get myself to use it instead of sitting on the shower floor, I cried. I sobbed my way through the shower, feeling weak and incapable of looking after myself. Being 18 years old and filled with hope of independence, this feeling was overwhelming. I felt like even my ability to stand – which you learn as a baby – had been taken away from me.

But as I sat there, I suddenly had an image of a throne in my head, and that’s when I realized this appliance wasn’t there to be disabling, but enabling. I could shave without getting dizzy from bending constantly, and meant I could straighten my leg more easily so it would be easier for the razor to glide across my skin. I could wash every part of my body with ease and even though it took a long time the first time I used the seat, once I got used to showering with it, it has made the whole process a lot quicker and less energy consuming. I can finally do more with my morning than just shower, as it leaves me with a little energy left over to either save or to use on an activity I want to do that day. It turned into an empowered shower!

Even though I was in the shower and no one could see me, I still felt like people were judging and assessing how ill I really was when I still appeared able when I would go out and do various activities. This shouldn’t be a concern though – we should do what we feel we can do without letting the expectations and opinions of others dictate how we feel we should behave.

As chronic fatigue fighters (and anyone who feels like they connect with this), we are allowed to feel weak – particularly in the safety of our own homes. If you need walking sticks, railings, wheelchairs or seats to help you, then use them please! They are there to enable you.

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Thinkstock photo via LarsZahnerPhotography.

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How My Illness Relates to This Song From 'Mamma Mia!'

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Having watched “Mamma Mia!” countless times with my daughter and being lucky enough to go to the show for my birthday, the song, “The Winner Takes It All,” blows me away every time I hear it. It’s so powerful, full of emotion, telling the story of what it’s like to be left behind, in the case of a song by a lover.

Each time I hear it, I feel that I could relate to other things too. Things I have lost, like my health, my career, my ability to have children, my independence and my value.

Due to my hearing loss it is difficult for me to hear music, but this is one song I can hear clearly. I miss having music as a companion in the long hours spent alone and I also have lost the ability to read music and play instruments.

In the film this song is sung on an empty cliff top with the sea in the background and I think there is something about standing there letting it all out, like going to a cliff top and screaming and letting go.

Here are the lyrics:

I don’t wanna talk
About things we’ve gone through
Though it’s hurting me
Now it’s history
I’ve played all my cards
And that’s what you’ve done too
Nothing more to say
No more ace to play

The winner takes it all
The loser’s standing small
Beside the victory
That’s her destiny

I was in your arms
Thinking I belonged there
I figured it made sense
Building me a fence
Building me a home
Thinking I’d be strong there
But I was a fool
Playing by the rules

The gods may throw the dice
Their minds as cold as ice
And someone way down here
Loses someone dear
The winner takes it all
The loser has to fall
It’s simple and it’s plain
Why should I complain?

But tell me does she kiss
Like I used to kiss you?
Does it feel the same
When she calls your name?
Somewhere deep inside
You must know I miss you
But what can I say?
Rules must be obeyed

The judges will decide
The likes of me abide
Spectators of the show
Always staying low
The game is on again
A lover or a friend
A big thing or a small
The winner takes it all

I don’t wanna talk
If it makes you feel sad
And I understand
You’ve come to shake my hand
I apologize
If it makes you feel bad
Seeing me so tense
No self-confidence
But you see
The winner takes it all
The winner takes it all

So the winner takes it all
And the the loser has to fall
Throw a dice, cold as ice
Way down here, someone dear
Takes it all, has to fall
It seems plain to me

If I were talking to my illness, the first verse seems to say that I have tried everything – it now has what it wants. Now it’s too painful to talk about it, it has won and taken over. It’s history and I have to accept the way it is.

The second verse says the illness takes it all and leaves me behind feeling small and insignificant, the illness has won.

Verse three seems to say it felt safe when I had my health and I was sensible, but that doesn’t matter it still got taken away. We take our health for granted and it can be taken away without our consent.

Verse four says that fate takes control and has no emotion when taking away someone’s health. It also speaks out about death saying, “And someone way down here, loses someone dear.” It feels like a drawing that decides who gets taken and who is left behind, as it is with who gets hit by illness. The things I hold dear are taken away by some stronger force and I have to accept that, and not complain.

In verse five, which is obviously more about the betrayal, it still says I miss my health, but I have to accept what I have been dealt even though I miss what I had. I have to “play by the rules” of society and I can’t complain or be sad. This can also be true when someone has died. They have been taken away, but society doesn’t like us to talk about the pain of the loss. Instead, it encourages us to move on and make a new life.

Verse six is saying it’s all out of my control. I may recover, I may get back what I lost. But again, it’s not in my control. Something else makes the decisions and I have to accept that and submit to the wishes of the illness or situation. So, even though there is a glimmer of hope, it can go either way. I guess we all have high hopes of a cure or recovery, but we can’t control how or when or if this happens.

Verse seven talks about guilt and having to keep feelings to myself so I don’t upset others, leaving me robbed of self-confidence not allowed to discuss the upset. Yet, I’m left wanting to speak out and wanting people to know the hurt.

Verse eight is a repeat of having everything taken away on the “throw of a dice” controlled by something with no cares or emotion. Someone has to be the person who takes the fall, struggling while others seem to have it all.

I have been in a relationship where I was left for someone else, so can see the song from that side too. The betrayal and the “what has she got that I haven’t,” but thats a long way in the past. Although, I think the effects do live on in relationships with others.

Songs usually tell a story or carry a message, but most of the time we miss it or may not feel it applies to us. But looking at it a slightly different way can make it meaningful and speak to us.

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Thinkstock Image By: Rulles

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