Tag Archive | obesity

Into the madness

Cushing’s syndrome is a cruel illness. You suffer for years as diagnosis on average takes five years. My diagnosis took ten. Everyone overlooked my steroid inhaler. No one worked it out but why would they – they still believed inhaled steroids goes to your lungs and not your bloodstream!

Everything under the sun was blamed for my endless symptoms over those ten years. At first its subtle, the terrible anxiety, the weight creeping up, the insomnia, your blood pressure getting higher, the list is endless – the feeling that something’s wrong but no one believing you.

A rare illness that makes you fat and gives you an array of symptoms gets lost in a world of morbidly obese people who have chosen to eat and drink their way to obesity. You become lost in the system. You appear just the same as them.

You’re fat, tired, anxious, sweating, not sleeping, getting weaker and sicker by the day but the second you walk into a doctor’s office he’s glanced up and assessed you in a split second. They immediately come to the conclusion that you are unhealthy and obviously stuff your face and don’t exercise.

You can plead all you like about how ill you feel but you will not be believed no matter what you do or say. Instead you struggle on feeling so ill you don’t know what to do or where to go for help. There is no help at that stage at all. You blame yourself and convince yourself that it’s your fault. It must be something I’m doing wrong.

You never think you’ll get ill. When you’re well and hear about terrible illnesses you try your hardest to put any fears to the back of your mind. You can’t think about something like that and it happens to other people not you.  It’s a strange existence living with a chronic illness. This is something I had never thought about at all, I didn’t know anyone with a chronic illness and had no idea how devastating they can be to your life.

I became ill very gradually at first. The symptoms very much appeared to be the dreaded start of the menopause and this was the first diagnosis I was given.  I challenged the Doctor over this diagnosis as I was only 40 years old at the time. He assured me that many woman have started the menopause at this age and at that time I was still stupidly believing everything a Doctor told me. A catastrophic mistake that carried on for many years. I had no idea that a correct diagnosis of menopause should have only been made after hormone blood tests. I didn’t get any blood tests and of course, I didn’t know I should have.  From the symptoms I now know I also had  hypothyroidism at that time but blood tests were not ordered for that either.

I know rare illness is difficult to diagnose, but ten years – honestly – what the hell!

 

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Mirror Mirror

To look in the mirror and not even recognise yourself is a terrible thing.  Illness has taken so much away from me.  My work, ability to drive, to walk, to socialise, but to have your very identity stolen is incredibly painful.  Is it vanity?  Maybe so, but a round face with a big puffy neck and a hump between your shoulders – another disgusting Cushing’s symptom – wasn’t a look I was going for.  Everything you did before has changed right down to your choice of clothes.  You can’t choose anything when you’re a size 26!  It’s always about what you can find that you fit into.  As for nice shoes – forget it.  You cannot walk in high heels when morbidly obese combined with muscle damage.  As if you would be well enough to be able to go anywhere anyway!  Of course, I also forget sometimes I can’t stand for long anyway!

Isn’t a woman’s choice of clothes a lot to do with their identity?  I think so.  Too many things are chipped away and this has a devastating effect on your self-esteem.  To be more precise, your self-esteem left.  It gave up the day you took a really long look in the mirror.  Confidence and self-esteem go hand in hand so that goes out of the window also.

It’s now coming up to four years since the Cushing’s and adrenal insufficiency diagnosis and only a few kilos have come off. Every day for years before and after diagnosis I’ve stood on those scales. Before diagnosis the utter despair as I watched them keep going up and now after diagnosis the crushing blow as you do everything you can to try to make them go down and not much happens. It’s a form of torture.

The day I was diagnosed with Cushing’s it was explained to me how this hideous illness changes the process of how protein and carbohydrate is metabolised and how through no fault of your own it makes you fat. The specialist said there was nothing I could have done to prevent it.  It has nothing to do with lifestyle or what you ate.  This is particularly true when you look at the pattern of how this illness progresses.

When you start gaining weight the first thing you do is cut down on your food intake and increase exercise.  Imagine getting to six years later and you’ve still gained weight.  It is now completely out of control.  I then took the next step which is pretty common place among cushies before diagnosis, and cut so much out of my diet that I left myself completely weak and low on essential vitamins.  You virtually stop eating as you become in a state of confusion and shock.  You have lost control over your body.  You feel ill and strange and gain weight at the rate of knots.  All the Doctors’ you consult tell you off.  You have now listened to years and years of Doctor’s telling you you’re eating too much and not exercising enough. You become brainwashed and believe it is true.  Somehow this is your own fault.  You hate yourself, you cut down even more and exercise even more but the weight gain doesn’t stop.

By the time I was diagnosed I was living on protein shakes and had given myself vitamin deficiencies.  Those in turn caused a whole host of problems and anaemia’s just to add to everything else.  The Professor in Endocrinology who had finally diagnosed my Cushing’s syndrome told me to just eat normally.  Now I do eat normally but am very careful.  I have massive hang ups about food now.  At least once diagnosed your Doctor’s now stops being so nasty.   They all say the same thing “good god, we haven’t heard about Cushing’s since medical school”. My regular Doctor’s almost seemed sorry how they’d all missed the fact I was very ill.  Almost, but not quite.  Compared to the constant accusations of being an overeating sloth at least now there was some respect.