Thursday, 21 December 2017

8 Years on and Still Fighting...



8 Years on and Still Fighting...

December 2010 a 15-year-old girl that has been healthy all her life (the worst illness she had ever suffered from all her young life was the flu but even those were not many) came from school and fainted after 6 months of constant A&E (ER) and family doctors visit and thus was admitted to hospital and stayed in the hospital for 5 months plus straight.

During that time she could not walk on her own because she had lost so much weight that she was wearing the trousers of a 6/7-year-old.  She could not leave her bed without support.  She was fragile that a simple poof of air would knock her down.

She was poked and prodded on a daily basis.
She was having a different test every day.
She became the Guinea pig for doctors to figure out what was wrong with her.

She had a family that she was close too but spending such a long time in hospital it became isolation even though her father never left her side not even for a day. the longest he would leave would be maybe 3 hours.

The way she coped with it that time was that she was in denial and thought tomorrow I will get better. Tomorrow came and things were the same or worse at times. But she continued to hope that that tomorrow was going to come someday. Some may call it denial and others may call it hope.

She missed her final year of secondary school. She did not attend any of her classes. She was so weak that she could not attend the hospital school either. The hospital school were concerned about her studies. her family were concerned. She was concerned. but she had no energy to even think straight. Her days were spent sleeping or going down for a test to find out what was wrong with her.

But that did not stop her from attempting to do her GCSE's even though groups of people tried to convince her to not do them. Redo the year they said to her. Focus on your health they said to her. You have not done anything whatsoever for your year 11 they said to her. These groups of people were her family, her teachers, her doctors, her friends, the hospital school staff and at times even herself.

She did all her GCSE's. She would go to her school just for the exam. Then return to her hospital bed and sleep.

Through all the impossibility and the doubt from herself and others, she achieved: 13 GCSE's (1 A*, 4, A's, 6 B's & 2 C's).

Through the process of finding out what was wrong with her. She was tested. She was not believed by doctors. A young girl who is so sick that she cannot keep any food down must be making it all up. She was told she was suffering from anorexia. That came to be a wrong diagnosis. Then she was told she was suffering from bulimia. That came to be a wrong diagnosis. Though through the process she still hoped that tomorrow was going to come and she would be back to normal. Because of this, she was not angry for the misdiagnosis. She understood that this was all part of the process for doctors to rule things out.

But what made her angry was when she was constantly told that its all in her head. That she is making it up. Here you have someone who adores food. Who loves to cook and bake. Who continues to eat even though it makes her sick to prove to you that it's not her head. But she was still grateful she had access to one of the best health services in the world.

During this time she was kept alive with tubes.

The first attempts were tubes down her nose to her digestive system to feed her. This did not last long. In fact, as soon it was put in within minutes it came out because she couldn't keep anything down. Many, many attempts were made with these tubes to the point where in a day where attempts were made to put tubes down her nose 4 or 5 times a day.

Then came the tubes in her tummy. Now, these were many too that were surgically place. These were ones that would be used long term. But her body could not handle the feeds.

In the desperate attempts to make sure she did not lose any more weight, she had tubes that went into the artery of the heart that would feed her IV nutrition that would avoid her digestive system.


After months of doctors scratching their heads and trying experimental treatments and diagnosis, she was finally visited by a specialist who specified a specific scan that will diagnose her. And that scan did diagnose her.

When she was diagnosed she continued to stay in the hospital to come up with a strategy to give her a good quality of life. Her diagnoses let her know that her life was not going to be the same. After gaining her weight and energy she was trained up on how to take her medications and feed and thus was left with tubes in her tummy that would feed her daily. This meant she was going to be stuck to a pump all day long to give her nutrition and in return, it will keep her alive.

Thus the young girl still hoped that tomorrow would come. and to this day tomorrow has still not come.

She went on to do her A-Levels which included months and months of hospital admissions.

Every time she had been admitted to the hospital the visits have never been less than a month.

Again with missing half a year of her first years of A-levels and then also missing half of the year of her Second A-levels she still managed to get into university.

Yet still hoping that tomorrow would come and she would be back to normal. She would not need to rely on tubes to survive. She learnt her paths in life was never meant to be easy. Through university, she continued to be hospitalised. She continued to live on tubes and still does.

Her health made her take a gap year which was to be her final year. She was devastated. All her friends graduated while her health became worse. Her body rejected the tubes in her tummy. She was hospitalised for 5 months. She developed sepsis. She faced death on multiple occasions. This was the worst she had ever been.

And thus she was permanently put on Total Parental Nutrition through a Hickman Line that is situated in her Jugular Vein. This would feed her nutrition that was made specifically to her blood on a daily basis bypassing her whole digestive system and was to become her new way of life. She was told though it is more dangerous than the previous tube it is our only option to keep you nourished and hydrated.

This was to be a new way of life that required different training and more vigilance because the simple infection can lead to sepsis which can lead to coma in worst cases. Though she did not complain because for her it meant she was spending less time connected to a pump. She could move around without carrying a pump with her everywhere. She could do it overnight. She forgot about everything about the tube as she was ecstatic that she had a little more freedom of not being connected to pump by a tube 24/7.

She returned to University to finish off her final year where all her classmates had graduated. She was alone and did not know anyone apart from her tutors. Remembering she had faced death on multiple occasions that year she was determined to get more involved within her university. Her determination paid off. She joined Societies. She ran societies. She ran events. She ran campaigns. She found a new family that she enjoyed doing all this with. they all had the same vision to make students life better.

Her new friends had no clue what she was going through because she was still hoping that tomorrow would come and she would be back to normal. Slowly she built trust with her new friends and started telling them small things about her health but always played it down because she wanted to be normal. She did not want to be pitied.

She defied the odds, battled with her health and continues to do so more than she done so before. She met individuals from across the country who have inspired her and with whom she's made friends with. Friends that she cherishes deeply for teaching her so much! Friends that have supported her in a way she had never imagined was possible. Friends that have developed her and friends that made her realise my potential. Most importantly, friends that have strengthened her faith when it was low.

She persevered with literal blood, sweat, and tears and Graduated from university and has now started her Masters at a Russell group university.

She learnt that sometimes life does not always turn out the way we plan it, and that's because what we planned wasn't supposed to be our life.

Though as she goes into 2019 she still hopes that the tomorrow she has been hoping for the last 8 years will still come someday and that she is going to be back to normal - she is okay.

Nothing in life is easy. Everyone is tested in different ways.

"And it may be that you dislike a thing which is good for you and that you like a thing which is bad for you. God knows but you do not know.”

She has seen more blessings in the last 8 years than she had before though she continues to battle every day. She continues to put the smile on her face that everything is okay when it isn't.  Yes, its sucks! But she tries not be shackled by thoughts of why me? Rather she is trying to embrace it.

8 Years on it has not become easy but "that's the things about pain, it demands to be felt."


Hafsa

Follow: https://www.facebook.com/smilingwithgastroparesis/ 



1 comment:

  1. The greatest people are often those who go through the severest adversity. Thank you for your inspiring blog Hafsa

    ReplyDelete

Please leave a comment, your comments are most welcomed! Its the only way we can move forward! x