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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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Friends without benefits

The one similar thing people with chronic illness say, is how it lost them friends.  Now you would think that’s not possible. You would also think the friends you have will be there for you more than ever now you’re ill. Unfortunately that isn’t the case and sadly it is true that friends give up on you when you have a chronic illness.

One of my theories on this is the fact they lose patience because they don’t understand you will not recover. You may improve as time goes by. You may even get back to virtually how you were before you got ill. Sadly though with chronic illness sometimes nothing changes or you get nowhere near back to the person you were and the exhaustion you suffer stops you from socialising either full or part-time.

What compounds this is social media. Before social media close friends would see each other on a regular basis and even if you’ve moved away then you would write.  An email tells you so much of what your friends are doing and how they are. You know things that acquaintances on fb do not, which is why you are a close friend.  However, now we have social media this isn’t the case anymore. We don’t write a personal email, we don’t share everything let alone our innermost thoughts. You become no different to a mere acquaintance. Someone who virtually may mean nothing to them at all suddenly gets invited into their lives. They now know exactly what they’re doing, where they’ve been holidaying, and then can browse their photos also. The privilege of being a close personal friend is well and truly lost. You’re just part of the process.  You’re just listed among all of their fb friends.  Your special status is lost.  The many years of being so close now has to be shared with any old ‘friend’ that’s been added.

Even Christmas and birthdays are changed forever. Gone are the personal cards and messages within. We now have e-cards or just a Happy New Year message through fb. Social media may bring people together but the damage it does to close friendships is here to stay.

If I was still living close by to my friends, I would like to think they would visit and be there for me now that I’m at my lowest point ever in my life. What worries me though is other sufferers of chronic illness aren’t just talking about people miles away, they are mostly talking about friends that are close by. They say they are constantly questioned as to why on one day they can seem well and on others they are not.  You definitely feel you have to justify a chronic illness to people who don’t understand.

I think you get left behind for a number of reasons. When you get invited to social events but are too ill to attend and decline several times, eventually the invites stop. Whether or not you would have improved enough eventually to go is irrelevant.  What’s important is that you’re still asked and not just written off forever.

I live a very long way from my old friends, but I still thought the support I needed would be there in the form of e-mails.  Just something to perk me up, but no, after the first few months my illness obviously became too boring for them.  In one way I was relieved to not have to reply to ‘’are you better yet’’? That question eventually became too upsetting to answer. I had explained over and over that I will recover from most of the Cushing’s syndrome damage – hopefully – but that there is no recovery from adrenal insufficiency and I would be steroid dependent for the rest of my life.

It hurts terribly that my friends knew the adrenal insufficiency had tried to kill me a few times but they still had nothing to say.  Maybe people don’t know what to say, but these weren’t mere acquaintances, these were friends that had been part of my life from fifteen to 30 years.

The hurt and pain will stop me from letting them back into my life.  They were there for all the good times, but not the bad.  The weddings, christenings, parties.  I’ve searched my soul to ask myself if I would also back away from someone who needed me more than ever.  I’m sure I would not.  I hope I would not.  The worrying thing is though, I just don’t know.

 

A little about me

My life has always been complicated.  From growing up in a very racist London in the sixties as an adopted child of mixed race, to tracking down both of my natural parents only to lose them both again.  To finally getting everything I ever wanted to then getting two rare endocrine illnesses that stopped me in my tracks.  Life never stays the same.

This is the challenges I have overcome and the ones I still face. I’ve been pushed to the edge but learnt, somehow, to keep on going.  I hope, over the months and years, to share with you some of my views and my stories from the past.

Cushing’s syndrome and adrenal insufficiency – the gifts that keeps on giving!

If I told you there was a rare endocrine illness that makes you fat, you probably wouldn’t believe me. There is never going to be a good time to have a chronic illness, but even so it could have had the decency to not arrive just as I had everything going so well.

Cushing’s doesn’t just make you massively fat, it destroys your muscles, tendons and ligaments too.  It will leave you with diabetes or at the very least in a pre-diabetic state.  It affects your heart either electrically with arrhythmia’s or structurally.  It kills off brain cells in the Hippocampus region of your brain resulting in short term memory problems and also gives you osteoporosis as well as damaging your skin making it as thin as a ninety year old.  The terrible crippling anxiety, depression and insomnia that is a major symptom of Cushing’s, literally feels as though you’re going mad. The vascular damage it leaves you with gives you a massively higher risk of heart attacks and stroke with these risks staying with you even when the source of hypercortisolism (too much steroid) is diagnosed and stopped. This is what Cushing’s does to you and the list could go on and on a lot further but I’m sure you get it – there isn’t much it doesn’t damage!

Left undiagnosed Cushing’s syndrome will kill you.  It might take many years to do so, but as it’s constantly damaging you in many ways you will eventually succumb. This makes it even more shocking that so many Doctors’ can overlook this illness.

There’s different ways to get Cushing’s.  Either from a pituitary tumour that messes with your hormone production and constantly signals the adrenals to pump out toxic excessive amounts of your natural cortisol. With a pituitary tumour it is then called Cushing’s disease. There is also a rarer form where a tumour develops on your adrenals or a hidden tumour that will cause the same havoc. The other way is from excess steroid from inhalers, tablets etc. Mine was from a steroid inhaler that was far too strong that I was left on unchecked for over ten year.  It’s a very rare illness with around fifteen in a million diagnosed yearly and the majority from taking too much prescribed steroid.

What happened to me – after first becoming ill with various symptoms – took a staggering ten years before diagnosis. By the time I was diagnosed the raging levels of steroid in my bloodstream had shut down my hypothalamus, pituitary and adrenals. They were all completely suppressed. At first they thought by changing to a safer steroid inhaler at a much lower dose, that maybe my HPA axis would work again.  Because it was shut down this meant that I wasn’t producing any of my own natural cortisol which you need to stay alive.  What a crazy situation.  You get ill from too much steroid that shuts down your adrenals and then you need to take steroid tablets to stay alive.  Complete madness.

The danger with living with adrenal insufficiency (not to be confused with adrenal fatigue) is the constant risk of going into adrenal crisis.  Something as simple as a stomach bug can turn into a life threatening emergency and it happens fast.  Replacing your natural supply of cortisol is about finding the correct dose to live on but this dose isn’t enough if you suddenly become ill or break a bone or even an emotional upset.  For a healthy person their adrenals will pump out extra cortisol to meet with everything that life throws at you.  It’s your stress response hormone and with it broken it’s then up to you to match an extra amount to different circumstances.  All good and well if you enjoy life on a rollercoaster! I carry an emergency syringe for injecting cortisol in case of sickness.   But ideally – if we could live in a bubble – you just must not get sick.  If you can’t keep your steroid pills down you’re in deep trouble.  In a matter of minutes or even seconds after being sick you can become very ill so fast that it’s doubtful you would have time to mix up a hydrocortisone shot.  If you’re on your own and too weak or collapsed and can’t administer the shot yourself you’d better hope there is someone around who can!

The plan to start with was that I would take a tiny replacement dose of steroid.  Just enough to keep me alive and to stop me plummeting into adrenal crisis.  The trouble with being put on a small dose with the plan of tapering down, is that you cannot function at all.  You exist.  A shower and getting dressed is a major achievement.  I didn’t get dressed for a year unless I had to go out to see a Doctor. Trying to shower was like climbing a mountain and the majority of the time the exhaustion and debilitating weakness made it impossible.  The pain in your arms and shoulders if you held your arms up trying to wash your hair was unbearable.  Your bones hurt all over with a deep aching from within.  You feel as though every cell in your body is screaming for more steroid and it probably is.

Tapering me off replacement steroid failed.  My HPA axis was not waking up and it was not sending signals to my adrenals to make them produce cortisol. I ended up in the emergency room countless times and in ICU twice with my heart going crazy with arrhythmia’s due to not enough steroid for it to function properly.  Not that the Doctor’s in ER knew at the time.  It is amazing how Doctor’s still don’t realise the effects of too little cortisol. It’s well documented but like any rare illness there is hardly any coverage in medical school.  I don’t think there is anything that cortisol isn’t needed for to function properly.  It controls and regulates so much and replacing – even though we take tiny physiological doses – is a nightmare.  Too much or too little cortisol is equally as damaging to your body.  To get the correct dose is trial and error – mostly error!  I had a year of tapering which wasn’t working.  A year of hell where you’re so ill and weak you can’t leave the settee let alone go to work.

After being ill for so long and then to get diagnosed to then find out you will have to put yourself through hell to try to make everything wake up was just the worse experience ever.  The final straw was waking up one morning with a stomach bug and a very high temperature.  I rushed into the bathroom to throw up and don’t remember much about what happened next.  Luckily my husband was there and had quickly given me the hydrocortisone shot.  Apparently, when heading for adrenal crisis, you have 30-60 minutes to get this injection before organs start to shut down.  Without the emergency shot you would end up in a coma and die.  Pretty scary stuff.