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 2018 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/

Acceptance in Chronic Illness

Acceptance in Chronic Illness

It is known that acceptance of long-term chronic illness is seen as a substantial problem in patients with chronic illnesses. Absence of acceptance can lead to clinical improvements being delayed considerably. It can also lead to poorer adherence to the current and ongoing medical treatment. They may be branded and judged by others as being in denial.

The term acceptance in human psychology means an individual’s agreement to the realism of a situation (a chronic illness) by identifying a procedure or condition without trying to change it or protesting against something that can not be changed. The term of acceptance is familiar to 'acquiescence', which comes from the Latin word of 'acquiēscere' (to find rest in).

There are different types of acceptance but the one we are going to look at is Self-acceptance this is a person’s contentment, loving and fulfillment with themselves with who they are now. This is known to be extremely essential for good mental health. Self-acceptance is an agreement with an individual’s self of self-understanding to appreciate, authenticate, acknowledge your strengths and weaknesses and support who you are at this moment in time.

In the 19 years of my life I have been through a lot of challenges, specifically in the past 4 years. I’m extremely lucky to have had almost a normal life s some people are not that lucky. My whole world fell apart when I woke up one day and started vomiting uncontrollably; at the time I did not take it seriously neither did my Doctor. We all thought it was just a nasty bug that was going around.  Little did I know that I was in for a shock! As time passed I started to get worse. Fast-forward 6 months I came from school and fainted I was then taken to hospital and this became my second home.

I always kept a positive attitude and thought that this too shall pass; that this was just another everyday thing. As days passed in the back of my mind suppressed that this thing that my body had was far bigger than I thought. Yet I kept that though suppressed and denied it everyday of the 5 months I pent in hospital. Here I was a girl who went to school just like any other teenager, played all sorts of sports, helped my mum in anything possible to being bed ridden, never did I think I would need help in going to toilet but I did everything was done in my bed. While my peers, carried on their normal life. I too was once part of that. It is a human thing that we never think of what we have until we loose it. I lost my mobility, my ability to eat, to dress myself even the littlest things such as brushing my hair and teeth.

I was very angry with myself first at taking simple things for granted. I was angry at why I was lying in the same place in pain, agony, covered in tubes one down my nose to my Jej, that I constantly vomited; another from my arm to my heart giving me artificial nutrients keeping me alive yet that could have been the very thing that could have killed me it caused havoc in my body but I needed the nutrients as my weight was dangerously low. I was angry at being poked with needles multiple times through out the day not because it was painful but every needle reminded me of what I had lost.

Days passed theses things continued but I always smiled through it not because I wasn’t angry but because I denied everything that was going on. Doctors and nurses believed I was not in pain because of the fake smiles the laughter’s with my Dad that I put on a show for my dad because he slept in an armchair for 5 months continuously not leaving my side. I had to stay strong for him but inside when he would be asleep I would cry dry tears for the life I had lost. For the life I had now. And the life I could have had or never will have.  Somewhere deep inside I knew I had to come to terms with the fact that my life had gone from being independent to being completely dependent on my parents for everything.

At 15 I had to fight my way to make them believe that all this was not in my head. Who would believe a 15 year old? Especially how the media portrays young women. My Father. But I was never into those things I didn’t read magazines or watched much of TV and I was always trying to be unique and find my own path rather than follow others. Both my father and I fought hard to make them believe that this was not in my head. This was a dark time for us all. My dad had lost his job because he was with me; you can only take a certain time of work before they show you the door. My little brother who was very close with me had problems sleeping at night because I was not home. He would spend the day crying. My mother was pregnant so hospital was not good place for her. All this was a huge emotional roller coaster for us all! I was grieving and denying in secret having bottled up all my feelings after trying the nasal tube for the 10^th time that day after constantly vomiting it out that bursted into tears that were rolling down my cheeks uncontrollably; they tasted salty. This was the only thing that I had tasted in a long time. All the emotions I had hidden and bottled up behind a smile exploded. I was grieving. 

We all go through grieve during sometime of our lives. Weather it is loosing a close family member, a pet or in my case my health, a diagnosis of terminal illness or a long-term chronic illness. Above I have mentioned some of the stages of grieve they include denial, anger, bargaining, depression and acceptance, abbreviated DABDA. This also known as the Kübler-Ross model. To find out more click here.  Every individual is different and will go through theses stages differently for short or long terms, as there is no wrong or right time limit. The idea was established for bereavement and terminal illnesses; it can also be applied to chronic illnesses.

Denial

The first stage, a reaction that follows after loss is denial; when the reality is hard to face we deny everything. In my case I always hid my loss behind a smile and denied that this chronic illness will be long-term and that It will not get better. I though that in the coming days it will get better and kept giving myself false hope. What this meant was that I was in such a shock that I tried to shut everything and everyone out of the reality I thought that if I kept smiling everything would be normal. I pretended that that it wasn’t real and tried to protect myself from the truth. However we cannot always stay in this stage at some point we start to question about our feelings and the situation.

Anger

The good old “why me? It’s not fair!” stage believe me when I say this I still go through this most of the time anger surges through my veins and when I’m in this stage I tend to lash out my anger at my family members. Though they understand why, this shows that denial cannot continue anymore. During this time I feel guilt at the same time for lashing out but we all go through this at sometime of our lives. Anger can mark itself in distinctive ways. People can be angry with themselves, or with others, or at a higher power, and especially those who are close to them. To those who are dealing with individuals like this should remember to remain detached and nonjudgmental.

Bargaining

This stage compromise of hope that the person somehow feels that they can reverse or undo what has happened to them somehow just to avoid a cause of grief. In this stage those with grief may say things such as “I'll do anything for a few more years."; "I will give my life savings if…"
. This is often negotiated with higher power. This is a normal reaction to feeling powerless and vulnerable. I have thought things such as “IF only we had reciveved medical attention sooner…” or  “If only my Doctor believed me…” or sometimes my father would say “If only we got a second opinion from another doctor…” This sort of a of weak wall of defense we put up in front of us to protect us from the painful reality.

Depression

The fourth stage is one of the appropriate responses to grieve and loss it is natural to feel sadness, fear, regret and uncertainty; this indicated that the person has began to accept his or her situation and paves the way to acceptance.  We all go through this stage where we feel as though “What’s the point… I’m going to die soon…” or “this will not get better why bother with anything…” individuals feel a void in them. When I’m in this stage I tend to block everyone out. I don’t pick up phone calls from friends and family and refuse visitors or going anywhere. Sometimes it gets so worse that I refuse to take my medication. Depression could be referred to as the dress rehearsal for the 'aftermath'. It is in a way acceptance with emotional attachment.

Acceptance

In this stage a person begins to come to terms with their chronic illness, terminal illness or a death of a loved one and of that of unavoidable future.  "It's going to be okay."; "I can't fight it, I may as well prepare for it." This stage is different to each individual. This does not mean I’m okay but only that I accept my mortality. I still go through anger, denial, depression and barging- I’m only human.  I have good days and bad days. On the good days I tend to enjoy myself by doing my favorite hobbies such as reading, photography or going out for a walk. However on the bad days I don’t want to get out of bed, I cry myself to sleep and questions such as “why me?” arises in my head. I lash out at family members or confine myself to my room. Accepting is just like acknowledging a new norm. your norm was different before you fell ill to what it is now.

Acceptance has come to the point form me is that I want to help others in my situation and that’s why I tend to blog about it so that others will find that they are not alone.

Please share and leave a comment so that others can benefit from it too.

References:

"Acceptance - Types Of Acceptance." 8 Apr. 2009. Law Library - American Law and Legal Information.

Kübler-Ross, E. (2005) On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss, Simon & Schuster Ltd, ISBN 0-7432-6344-8

Santrock, J.W. (2007). A Topical Approach to Life-Span Development. New York: McGraw-Hill. ISBN 0-07-338264-7

Shepard, L. A. (1978). Self-acceptance: The evaluative component of the self-concept construct. American Educational Research Journal, 16(2), 139-160.

Telford, K., Kralik, D., & Koch, T. (2006). Acceptance and denial: implications for people adapting to chronic illness: literature review. Journal of advanced nursing, 55(4), 457-464.

Zalewska, A., Miniszewska, J., Chodkiewicz, J., & Narbutt, J. (2007). Acceptance of chronic illness in psoriasis vulgaris patients. Journal of the European Academy of Dermatology and Venereology, 21(2), 235-242.

Hafsa :) xxx