I don’t look sick

The above description of living with an invisable disease is a true description to how I and many others feel on a daily basis.

My blog is to share my experience with suffering from an autoimmune disease (Graves Disease). And also my experience of suffering with hormonal diseases (PCOS and Hyperemesis).

You may be reading this as a sufferer of one or all these illnesses. You may feel forgotten as you battle with a disease that’s not understood and not noticeable to the eye.

[bctt tweet=”You can feel forgotten battling with a disease that’s not understood and not noticeable to the eye.” username=”@Radiantnubegin1″]RELAPSES

At present, I’m in a pretty good state with my Graves disease and PCOS. Luckily, I’ve not been medicated for my Graves for at least 3 years.

My health is always on my mind because my state could change at any time.

I’ve had two relapses with my Graves disease in 11 years.

My last relapse was caused by stress. I was working as a yoga teacher and a music teacher. I loved to serve my students. But in doing so, I wasn’t looking after myself.

Yoga teachers shouldn’t be stressed! I hear you say.

But I, like you, live in a modern world with modern day stresses. And a small amount of stress can cause my serene state to tip over into thyroid storm.

Serene state

Giphy.com

Relapse state

Giphy.com

Thyroid storm is when the thyroid produces dangerously high levels of hormones. So dangerous that it can kill you if not caught early.

THE TIPTOE APPROACH

Pexels.com

At the point of relapse, I know I look ill. My eyes are bulging, I look tired, I’ve lost weight, I can barely walk.

Family and friends tiptoe around me. They avoid asking me how I’m feeling. It’s clearly written all over their faces that I look terrible. And I can feel how uneasy they are to talk to me about how I feel.

I get the poor you look. But no one asks how I’m feeling to not hurt my feelings.

Feels very lonely!

MY APPROACH TO RELAPSES

When I’ve relapsed I take my thyroid meds and look at what I can do differently with my diet and lifestyle. For me, this also involves looking at my yoga practice. I tend to change my practice by doing less posture work and more breathing and meditation.

During my low points and with my two relapses i’ve managed to recover well enough in a few weeks or months that I’m looking reasonably well.

Or am I well!

 


Hello, I’m Cheryl.  I’m a Yoga Teacher and Nutritional Therapist and I provide information to help people who suffer from autoimmune diseases, hormonal, thyroid and joint-related conditions.


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GRAVES DISEASE IS FOR LIFE, NOT JUST FOR CHRISTMAS

When I look well people will either treat me like I’ve just got over the flu. Or they think I’ve been fully cured and I’m back to normal.

I then get comments on how well I look.

After explaining I have this thing for life. They still can’t comprehend the fact I’m still ill. Because, as far as they’re concerned, “I look well”.

I look well, but I still have reactions to eating certain foods.

I have to be cautious of what I eat when I visit restaurants. And can’t join in with eating what everyone else is eating.

I’d like to have a few glasses of wine at a night out. But I know my body can only handle one glass.

You get the question “do you want a drink” usually meaning alcohol. But when I ask for a soft drink or a hot drink. I get the look or a comment of horror because I’ve selected such a drink over an alcoholic beverage.

Invisible disease. Shouldn't have to prove how sick they are.

I can’t be bothered with having to explain that eating a certain food or drink will make me feel ill. Not just for a few hours. But for a few days.

I can’t be bothered with having to explain that drinking alcohol will give me a hangover. Not just for 1 day. But I may feel the effects for a week.

People don’t understand and possibly don’t care that it takes me longer to recover. They don’t understand that my eyes may start bulging and feel gritty the next day. I might get the shakes. I might start itching uncontrollably.

To them “I look well”.

My Graves has affected the way I exercise. I’d like to practice yoga the way I could before graves disease. But I have to be mindful of how I push my body as I’ve experienced the effect of too much exercise.

Strenuous exercise can cause my symptoms to return. If I were to practice that way again. I would get ill. It would possibly kill me.

I’m not as fit looking as I used to be. I might not look like the yoga teachers you see on youtube. People have commented on the way I look as a teacher in the past. But I don’t care. My use of yoga helps to renew and awaken my mind and body. I don’t practice for the “body beautiful”.

Created using photos by giphy.com and pexels.com

People don’t understand this. Because, “we look well”.

MEDICAL APPROACHES TO GRAVES

Graves disease is a rare disease it’s not understood well by medical professionals. I’ve had doctors ask numerous times how I manage my illness. Some have said I’m the first person they’ve seen with Graves disease.

Imagine that!

I’ve had medical professionals ask if I manage my disease taking thyroxine. Even after, explaining that I still have my thyroid gland.

Thyroxine is taken by people with low thyroid disorders. And would most likely cause thyroid storm in Graves sufferers. Especially if they still have their thyroid gland.

If you’re a Graves disease sufferer, you may be aware of that. The medical professionals I’ve been in contact with don’t seem to be aware of this.

If this is the case!

How can we expect people around us to possibly understand when medical professionals are not fully aware of Graves disease and possibly other autoimmune diseases.

I’VE STOPPED CARING WHAT PEOPLE THINK

It’s very difficult for people to assume you are well if they can’t see a physical problem.

If we break a leg or walk with a limp. It’s noticeable.

But Graves unless you have thyroid eye disease is not very noticeable.

I wish people would take all autoimmune diseases seriously.

As a yoga teacher I have been in contact with fellow autoimmune sufferers. We would often talk how people and professionals don’t understand our daily battles.

Professionals will only term you ill if a blood test says you are. As long as we look well or the blood tests say we are in normal range that’s enough for them to term you and I as “well”.

My thyroid levels have been “normal” many a time. But I still have those “off” days”.

It can be a battle explaining an “off day” or a relapse to your employer. The guilt I have felt with dealing with past employers, colleagues and students has been immense. The feeling of letting my workplace and my students down. The sense of disbelief from my employer, work colleagues and students would feel so hurtful. I have come to terms with this. It can’t be helped. Because, to them “I look well”.

If you are reading this as a fellow autoimmune sufferer. My advice is to not get angry.

Education and awareness is key.

Try your best to educate people close to you as to how you feel.

They may still not understand how you feel, it’s frustrating, but at least you’ve tried.

I used to get frustrated. Especially with medical professionals. It became annoying having to explain my thyroid eye disease is affected by my immune system and menstrual cycle. That I have allergic reactions to food. I would get that “be quiet, silly women” look and feel totally demoralised.

My mindset has changed a lot over the last few years. I don’t get annoyed anymore.

I can’t blame people for not understanding an illness that I’d never heard of until I got it.

I’ve experienced this ignorance of understanding as a sufferer of PCOS as well. And with suffering from hyperemesis with all three of my pregnancies.

No one understands and possibly doesn’t care to understand unless they’ve personally been through it. Or they’ve seen close family members go through it.

It’s not a fair way to treat people. But unfortunately, I don’t envisage improvements any time soon.

It’s the human condition.

But I wonder. Would I have been ignorant if I’d never experienced these conditions myself?

Am I only sensitive to the suffering of others, as a sufferer of “not so well-known” diseases myself.

Hmmmm….

Images by giphy.com, pexels.com and unsplash.com

 


Hello, I’m Cheryl.  I’m a Yoga Teacher and Nutritional Therapist and I provide information to help people who suffer from autoimmune, hormonal, thyroid and joint-related conditions.


Find out about the anti-inflammatory checklist and tracker

and

how it could help you!

Click one of the images below!