Why depression to me is more frightening than my daughters 1 in 100,00 life threatening disease.
why depression to me is
more scary than my daughters , 1 in 100,000 life threatening condition.
I normally spend my life advocating for rare disease.
Raising awareness
to part of my daughters life threatening disease Hypopituritsm ' (Adrenal Insufficiency).
For 14 years on a daily basis Molly now 18 was at risk from adrenal crisis and death. She has been poorly for all of these years. Molly did not have a normal childhood, a good and consistent education. And the chance to experience life like everyone else.
It is a miracle she survived. Unbeknown to us she was walking on a cliff edge.
The medical profession
simply failed to diagnosis her. A referral to endocrinology at birth would have considerably changed her life. I would not be here now for example. Sat in an oxygen chamber with her masked
up in front if me. She would be at college with her friends.
Molly spends every day at home with me. Too poorly
to have a normal life. Her body became exhausted over 14 years without life saving and sustaining medication.
What makes this life threatening ?
Molly makes no natural cortisol (steroid). The pituitary gland in her brain does not send signals to her adrenal glands. (Adrenal glands squirt
out the hormone cortisol). We need this in small bursts frequently through the day. It
squirts out much more if we are stressed or in pain or have a trauma. It is known as our stress hormone. It maintains correct cardiovascular function. Blood pressure
balance and literally fuels every part of our body IT KEEPS US ALIVE. over the years
Molly was getting progressively worse. Unbeknown to us she was almost comatosed when
sleeping at night. The same happened when she was unwell, she would shut down and sleep for hours.
Cortisol to Molly thankfully now comes in replacement form. (Steroid tablets). It is what insulin is to a diabetic, water is to the dehydrated, and what Ventolin is to an asthmatic.
like we need air to breathe she needs replacement cortisol to live.
Without this she would
only live for 3 days before her body would start shutting down.
So you can see why I now advocate for awareness.
It gets worse.... Not long after diagnosis I learnt just how bad the understanding of this disease is.
In the 3 years since molly has been diagnosed over 10 people including babies and children have died from this. Mainly due to poor management, non diagnoses and poor emergency protocol.
Medications are 50 years old. Death can occur 30 minutes within
a trauma without an emergency injection. There is no quick pen device just a syringe
a glass vial and an intramuscular needle. Most people even medical professionals have NEVER heard of this disease. And have no idea how to save someone's life with it.
This is my whole reason for being at the moment. To change protocol, to give vital information to patients and to campaign for research and new medications.
To keep these people
including my daughter safe.
So what the hell am
I taking about??? How can depression frighten me more?
There are similarity's here. The main one being 'understanding'.
Why would a child of mine scare me more if they had a mental illness like depression?
Well although Molly has a life threatening condition we can manage it. I know what she needs. Its a matter of science. I would worry more if
she was out in the world alone but for now I can keep her safe.
She has replacement cortisol now. We have the emergency injection at all times and I am her advocate in case she does get poorly.
The difference here is if Molly had depression I would have no control over this. Mental illness is so complicated it comes from within. There is no quick fix.
Parallel to this rare disease the brain is not functioning in the way
it should. both are dangerous senarios Only with molly now we can medicate and replace this hormone.
Mental illness is far harder to manage.
I have experience myself of postnatal depression. With my 3rd child. She was the easiest baby I ever had but something just got me. and hit me like a ton of bricks.
I suffered sometimes more sometimes less for 4 years before asking for help.
When you have depression
your mind can be slightly distorted in to what is real and what is not real. I thought
if I admitted how I felt doctors would think me unfit to look after my baby. Looking back that was crazy but at the time I was just so sad, I hated myself for this. I felt desperately sad a lot of the
time.
Depression
is not something you can just get over and pull yourself together. But this is still
the view I'm afraid from many people who do not understand it. Normal decent people still have this attitude.
In fact having the Pull yourself together attitude with someone who is depressed really could push them over the edge.
This is what scares me.
I could never bare anyone I love feeling the way I did at that time. There was literally no need for it to have hit me like it did. Apart from general problems everyone has and a poorly child. I had a lovely home. 3 beautiful children a great family, and I was married to my absolute best friend. I had everything ! apart from Molly's health I seriously could not have wanted or wished for more.
I am only here because of my children and my husband. My love for them and imagining the thought of not being there saw me through some quite awful times.
Imagine
if I were alone in the world. In a world without support, family and love. Im not sure I would have been strong enough to cope and get through it. It just got me. It had me in its grip believing I was some kind of no good hideous monster. In fact at times and I can swear this on my life I was surprised to see my normal face in the mirror. How could someone look this normal and yet feel so bad inside. Realistically I expected to see some ugly monster staring back at me.
But this is the thing you see. Mental illness is invisible. If you could see it on someone you
would be terrified.
If I could give anyone any advice it would be this.
Listen to your loved
ones. Notice if they become tetchy, moody, distant or just a former shell of who you
know them as.
You
cannot just fix depression with a pill. They help for some and thankfully after 4 years I did take medication for a while. But what these people need is compassion. Understanding.
Empathy. to feel able to talk things through. May be to unravel the way they are feeling to talk about it or just to have a good old moan about what's bothering them. It can really
help.
Your
loved one with depression NEEDS to feel loved. Just remember if you could SEE
the sadness in the form of cuts and bruises it would be a hideous sight for you. You would hug your loved one, you would never want to let them go. Just because you cannot see it does not mean it is not there.
Never ignore mental illness in someone. Never just hope it will get better, NEVER UNDERESTIMATE IT.
My child could be taken from me from this rare disease.
But its more likely to happen if this were a mental illness. I can manage this life threatening illness because I know how. I do not know however how to mend depression. Its much more complicated.
If you do one thing today just please remember these words. Compassion, empathy, understanding and support. they need you, like you need them.
Rx
Latest comments
I have just clicked over to this from your email my darling angel. You are doing so much good and Molly is not doubt loving it!
Thank you I had exactly the same situation in 2013. I started an awareness page on Facebook https://www.facebook.com/rachelpeglersavinglivesforsterioddependants/ I didn't want a memorial page.
I am so so sorry for your loss. I can not even begin to imagine how you are feeling. Thank you for sharing my petition for change, same vile disease as your lovely daughter xxxx
Good luck with all you do for your dearest daughter. xx