Tag Archive | chronic illness

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.

New batteries please

The only thing I can compare adrenal insufficiency to, is feeling as though you’re run on batteries.  You mustn’t let the battery run out completely or you’ll be very ill.  You also mustn’t use too many because more than you need will also make you feel unwell and lead to all sorts of long-term damage.  Basically you eventually learn how many batteries you need – this can take years – when you find the magic amount then you have to take into account that everyday has different challenges and different requirements of energy, so now you have to second guess how much extra will be needed and when.  Should you wait until the batteries are starting to fail to add more or should you somehow try to work out if you should have more beforehand?

This is adrenal insufficiency in the 21st century!  Dosage and literature still based on fifty year old information.  Having to break up steroid pills into halves and quarters as although these pills are keeping us alive it is only a tiny physiological dose that is needed – unless we get ill and heading for crisis when we have 100mg shot – having to split our daily dosing into three or four times a day to keep on an even keel.

It is astounding how many Doctor’s have never heard of adrenal insufficiency.  They will most probably go a whole career without one single patient who has this condition.  The endocrinologist’s that we see who are familiar with AI also vary enormously with the amount of knowledge they have to manage this condition.  Again, even an endocrinologist can go a whole career without ever having an adrenally insufficient patient.

This is the main reason that rare endocrine illness can take years to diagnose.  It’s complicated stuff, which leaves the patient pretty messed up by the time it’s diagnosed.  When you do finally get a diagnosis you are so relieved to know exactly what the hell is wrong with you.  You at last can stop thinking you’ve gone completely mad.  All very much short lived when you’re sent away with a bottle of either hydrocortisone or prednisolone and told ‘try this much, once or twice or three times a day’.  There is no set dose.  There is not a Doctor anywhere on this earth who knows exactly how much you need to maintain any sort of a normal existence – ie. getting out of bed and having a shower.  The devastating disappointment when you realise this is going to take a long time to figure out, and boy it does.

After four years of living with this hell I finally found my normal daily amount needed and what times I should be taking it.  It took two years of keeping a diary.  Writing down everything tried.  Amounts, times etc and listing results.  Eventually a pattern formed and I fine tuned it so I’m not on a permanent rollercoaster of too much or too little daily.  As fantastic as this is, there is still the changing goalposts everyday.  An illness, a shock, simply doing too much can all lead to needing extra.  It is a crazy way to live and it’s also a dangerous way to live.  The simplest of things can send you spiraling into an emergency situation so fast.

Despite living with such a stupid fucked illness, I try to pretend everything is ok.  I’d like to say I try to forget about it but that’s made impossible by the fact the second we wake we must swallow some steroid.  A few hours later – and it’s best to stick to the same times – an alarm goes to remind me another dose is due and then nearing bedtime another one also.  Hard to forget about it when you have to set a bloody alarm to stop you forgetting.

How long would someone with AI live without their steroid pills?  Maybe two days if lucky.  I dread to think how much you’d suffer before death got you.  Just missing one dose you feel so ill.  The pains in your side, stomach and back.  The dodgy stomach and throwing up.  The cracking headache and utter weakness where your muscles can’t function properly.  The shallow breathing as your cardiovascular system can’t work properly.  Basically cortisol controls everything in your body.  It’s not called the life sustaining hormone for nothing!

Today I made my Christmas cake.  Used to be easy but now it’s not.  Combining AI with the Cushing’s Syndrome damage which stops me being able to stand for long, makes cooking difficult.  The clock is ticking and I will reach a cut-off time where I just can’t stand any longer.  Today, for example, when I reached the ‘you have to sit down now’ time, I’d exhausted myself so the low cortisol symptoms joined in too.  An hour on the sofa, a little bit extra of prednisolone taken and then the whole process starts again.  It has improved compared to the last three and half years.  I’ve definitely turned a corner and getting stronger and sometimes when I need to sit I haven’t also got low cortisol going on as well.  I must slowly be getting stronger, but this is a strange way to live.

 

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.