Tuesday, 26 June 2018

Living With Invisible illness: My Life With Graves Disease



I was diagnosed with Graves Disease - an autoimmune disorder in which the body attacks the thyroid gland, causing it to produce too much or too little of the thyroid hormone - when I was 18.

I'd gone to hospital with symptoms of a panic attack - something I'd experienced a number of times before, but this one had come on very suddenly - I'd been sitting at home reading a book when my heart suddenly started thumping out of my chest, and I felt sick and dizzy.

I spent a good few hours in A & E that night, and was just about to be sent home with another panic attack diagnosis when my Mum asked the Dr on duty if they'd done any tests on my thyroid. They said they hadn't, and agreed to run a test before I went home.

An hour later, I had my diagnosis of Graves disease. 

A condition I'd never heard of before, but which can run in families and skip a generation. My nan had it, and now it was mine too.

Since then, I've seen countless endocrinologists, taken more medication than I could ever count and experienced both living with an overactive thyroid and living with an underactive thyroid on numerous occasions.

Luckily my condition is treatable, but it's not easy to get the balance of medication right. I'm usually treated for overproduction of the thyroid hormone for a year or so, then the medication causes my thyroid to become underactive instead and I'm switched on to treatment to slow down the hormone production...until eventually it slows too much, and I need to be given a medication to replace it. And then, in time, this leads to overproduction once again.

This is an ongoing cycle I've been stuck in for 18 years now. 

And because I've lived my entire adult life with the disease, I tend not to really think about it too much or the symptoms it causes - because they've always been there. I've always had to take numerous medications each day to feel closer to "normal". I've always suffered with the symptoms it causes. So I don't know anything else.

It's normal for me to feel this way. To have palpitations every day, to always feel on edge and anxious, to have hand tremors and joint pain, to feel irritable and suffer with extreme mood swings, to feel down and hopeless, to suffer with such intense brain fog that I often forget what someone has said to me just 5 minutes ago, to be awake all night with insomnia...

That's how it's always been for me, and I tend to forget that not everybody experiences these things as part of their everyday life.

And because of that, I have always found myself feeling guilty for the things I don't seem to be able to do or enjoy that other people do. 

For example, this week the weather in the UK is higher than it ever usually is and everybody I know is loving the heatwave and talking about how great the sunshine is - but I feel like death.

I feel completely wiped out, exhausted, drained...I feel nauseous all of the time, my head is constantly pounding, and my mood swings are worse than ever - all I can think about is how uncomfortably hot I am, and how I just want to move somewhere that is constantly cool.

And along with those feelings comes guilt - Guilt for being "the moaner" when everybody else is loving the sunshine, Guilt for being the Mum who doesn't take her kids out to enjoy the hot days enough, Guilt for being the one wishing for the rain and cold to come, Guilt for being tired and cranky all of the time.

But I never stop and allow myself to realise that actually - this is because of my disease.

One of the main symptoms that Graves Disease causes is Heat intolerance.

So I can't help that I feel this way. This is a medical symptom. It's not my fault. I shouldn't feel any more guilty for this than someone who can't produce insulin should feel for that. 

And I'm realising more and more lately that actually, it's ok to make allowances for myself.

It's ok to accept that living with long term health conditions has an impact on my life, and that I have to live with symptoms and limits that other people don't.

The list of Graves Disease symptoms is long and varied. 

I often think that when people here "It's a thyroid related disease" they think "Ah well, that's nothing then! Doesn't it just make your weight fluctuate and make you a bit tired?!"

Well actually, no. Graves Disease does a lot more than that.

In case you're interested, here's a look (I've bolded the ones I currently suffer with)

Anxiety 
Bladder problems - increased urination or polyuria 
Blotchy itchy patches without rash - Pretibial myxedema, hives 
Brisk reflexes

Congestive heart failure, atrial fibrillation, cardiac arrhythmias
Depression
Difficulty breathing, rapid shallow breathing, shortness of breath
Dizziness
Emotional disturbances, emotional lability 

Goiter
Graying hair, premature graying
Hair and nail changes, increased growth
Heartburn 
Headaches
Hair Loss
Heat Intolerance

High systolic blood pressure
Hyper brain, trouble concentrating or comprehending

Hyperdefecation - up to 8 movements a day, steatorrhea (increased stool fat due to malabsorption)
Hyperpigmentation of skin
Inappropriate feelings of rage
Increased heart rate, palpitations
Increased perspiration

Infertility
Increased appetite 

Increased bone resporption, bone loss
Insomnia, sleep disturbances
Irritabilty and Agitation
Irritable leg syndrome due to nutrient deficiencies – patient may describe ‘bouncy legs’.

Loss of muscle mass
Low cholesterol level which rises with treatment
Lowered stamina, weakness
Menstrual Cycle Changes
Mood swings

Muscle weakness and fatigue
Nausea, vomiting 
Nutrient deficiencies
Panic
Restlessness
Skin tags
Tremors, increased movement (hyperkinesis)

Tremors of hands, lips, tongue
Vitiligo (patchy loss of pigmentation in skin) 

Weakness in muscles of shoulder girdle and large muscles of the thighs
Weight loss or gain (rapid) <10% of people are reported to have weight gain, usually younger people>

Abdominal pain and distention
Anemia
Brain Function problems which include:
Confusion,
Disorientation,
Mental fog,
Memory loss - Brain fog
Carpal tunnel syndrome 

Constipation
Dry coarse skin and hair 

Eyebrows stop growing, <outer 1/3 of eyebrows stop growing or have limited growth>
Fatigue
Feeling of being overwhelmed
Hearing loss, deafness
Heavy periods and cramping

High cholesterol and lipid levels
Hoarse voice
Impaired blood clotting
Impaired digestion
Increased capillary fragility (bruising) 

Increased creatine phosphokinase (CPK) level
Irregular heart rate (bradycardia) 
Joint pain
Lack of motivation
Muscle pain
Myxedema (waterlogged appearance of skin) puffy eyes, face, hands, feet 

Nasal stuffiness, dry throat 
Nocturnal paresthesia (hands or legs falling asleep) 

Palpitations
Severe weight gain even when not eating much 

Sinus problems and or infections
Sleep apnea
Slow speech
Thickened, dry tongue,( dry mouth)
Blurring of vision
Bulging eyes
Dry eyes 
Inability to close eyes to sleep
Lid lag
Sensitive to light, even indoors
Swelling of eyes
Over the years, I've felt so embarrassed by the fact that my temper is so extreme and I'm so quick to rage. I've felt embarrassed by how easily tired I get, by how I struggle to sleep before 4 am which people always find so strange, by how I struggle with depressive episodes...I worry that people think I'm attention seeking or complaining too much about small things when actually, controlling my moods is a really difficult thing for me.

I've felt embarrassed by my weight gain, I've felt embarrassed by the brain fog and how I can suddenly forget what I'm talking about mid-sentence. I feel embarrassed by the muscle pain and fatigue I feel when walking long distances (thank goodness for companies like Millercare who offer mobility solutions).

Because I look at these things as personal flaws and failings.

But realising and accepting that these are symptoms I have no control over is important, and I think it's time I started to work on this more.

It's estimated that there are around 26 million people in England living with a long term health condition, and not all of these are visible.

Apart from my slightly bulging eyes and a patch of vitiligo on my neck, you'd have no physical clues to warn you of the disease I have. 

Which is why it's so important to be kind and patient with people, what may seem like an irritating character flaw could actually be a genuine medical issue that's causing embarrassment and suffering to that person.

You never know what someone is going through or living with.

If you suffer with Graves Disease or another long term health condition, you have my respect and support - it's not easy.


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1 comment

  1. I feel your pain, I too suffer with an underactive thyroid. It's awful it literally effects everything! it is an invisible disability, chronic pain and fatigue is a struggle for me. sending much love x

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