Feeling out of place...

I miss the old me. The one that laughed so hard and made others laugh. I miss myself as a child where I could hide a tooth brush in my pocket and hope that my uncle will force me to stay the night down their house. I loved staying over my uncle's places. As a child I longed to just live amongst a large family which I did. I had a huge family and I LOVED it. As a child, I'd wish that all my uncles and aunts lived on the same street so my cousins, siblings and I could play all day and I'd never have to have that aching feeling of missing them.

I miss my life as a teenager where I could drop down to any of my relatives and know that I'd get a million dishes to eat whether it was after college or work, my mamani was always ready to feed us like my mum. There was never a shortage of love and warmth in my life.

I miss just knocking on my friends' door and just parking myself on their sofa and ordering my favourite biryani and watching horror movies. I miss making them walk me home arm in arm.

Here I am now, away from all of that. Not a door to knock on when I feel like some company. No aunt or uncle forcing me to stay the night. I don't need to carry a tooth brush anymore. These days everyone has spare toothbrushes but a welcoming heart is always difficult to find.

I miss my childhood completely. I miss my city. I miss my dad. I miss his phone calls. I miss not being able to talk about my feelings with him.

I have great people in my life but we are plodding along with hardships and struggles. This is the real life. The life away from our childhood. But I miss carrying a tooth brush and I wish those days would come back to me. Why couldn't I remain that tooth brush girl that made all her loved ones put a lipstick kiss in a notebook so she could put it under her pillow and feel closer to them when she missed them?

Warning: these are just my feelings and has nothing to do with anyone. It's good to reflect sometimes and appreciate the beauty of childhood.

Feeling defeated!

Today I am feeling very hopeless with being in pain. The pain isn't as bad as other days but it makes me realise and feel quite isolated that there are no doctors I could turn to to help take away this pain. That leaves me feeling quite scared and isolated and I really do not feel like carrying on further.

I saw my liver consultant on Thursday and it happened to be the main consultant I am under. He explained everything thoroughly and he was truthful but at the same time I felt he shattered my tiny bit of hope that I had within me. He said that there may never be a diagnosis because our digestive system is so complicated and unfortunately doctors do not have answers every time. He was worried that I've had so many tests with no conclusion and that I was going to see ANOTHER doctor privately to seek answers.

I get what he meant. That I should look for management rather than a diagnosis at this point but who will help me manage it? I've tried various medications and it did nothing for me. I'm already on limited amount of food. Who do I ask help from? Where do I go? The last consultant was going to make a referral to a dietician and another gastroentorologist but the main doctor didn't feel I needed one?

So today I am feeling quite crap. I feel angry that I cannot eat normal food and eat like a normal person. Today I do not feel like being alive or being a mother or wife. I feel like wallowing in self pity and I wish everything would stop. I crave isolation from all my duties as I do not have any energy. I'm always so exhausted and so tired. I get overwhelmed with small things like attending two appointments a day or attending appointments everyday. This week it has been full off hospital appointments everyday. I do not feel like speaking to people and want to sometimes shut down.

But I get up and pray everyday even though my heart isn't always in it. I very rarely have the energy to make 'dua' for myself because I think what's the point. But I try everyday to find a bit of hope somewhere and continue for my childrens sake. They deserved a better mother. Not one that is always looking to rest or avoid them some days.

I pray that Allah swt hears my duas and cries that are building up within me. That He gives me sabr because without His help we have nothing.

Please keep me in your duas sincerely this Ramadan that there's some miracle that happens for me. That I can be a happier mother and a happy human. Not just paste a laugh and smile on my face because it is easier than moaning or crying.

This is what chronic pain does to a person and family. It destroys their inner peace and happiness.

3 years on after transplant

This time 3 years ago, I was in ITU, in severe pain on my right side and coming in and out of consciousness due to hypoglycemia.  My sugar levels were as low as 1.5/2. I remember muttering Aleena's name as I felt I was slipping away. I'm not sure how loud I spoke out her name but the patient next to me who I adopted as a sasa (he was Bengali and gave me lots of courage in my very very dark hours) he kept telling his nurse to come and check on me.

I feel like I fought with every fibre in my body for my daughter.  I kept worrying who would look after and her needs without me. Having a child with special needs and disabilities really makes you realise how it is important our health is for their sake.  I also kept making dua and crying 'la illaha illalahu, muhammadur rasulallah' because I truly felt like those were my last moments.

One way I felt scared but another way, I just wanted all the hardship to end. In that moment I left all my trust in Allah swt. But I could not stop picturing my childrens faces and especially Aleena's face. Isam was so young and he had gotten used to his new routine. In the beginning when I got hospitalised he would look for me but then slowly he adapted to everyone around him.

Aleena however, she's too attached to me and I knew inside, she'd be broken and distraught even if she didn't show it.

That night I kept crying to Allah swt to give me life for her sake. I can't explain what a scary position I was in just that night. The medical team had explained to me about the likelihood of inducing me into a coma but also that my INR was dangerously high to the point that transplant may not be an option.

I remember the team coming in and discussing that the transplant needed to happen asap but there were no donors.

At about 12am the junior doctor came to tell me that there was a likely donor but tests needed to be ran to see how healthy the liver was. I was told at around 4am that the transplant was going ahead early morning and the nurse would prepare me.

The sasa (uncle) next to me gave me so much encouragement before my family joined me at around 7am! I wasn't actually expecting anyone and I was hoping no one would come so early without sleeping or eating breakfast to visit me.

My dad gave me this beautiful wide smile and everyone gave me a hug and kiss. I'll never forget my A team which consisted of far too many people! They really pulled me through and kept up my spirits when all I wanted to do was close my eyes and just sleep forever.

Three years on and here I am. Thankful for organ donation. Thankful for all the donors and their families who are even more brave to make such a strong decision during the most weakest time in their life.

Thank you to all my beautiful family members, everyone and my beautiful friends. For as long as I am alive and breathing, I'll know who got me through this stage of my life and everyone that showered me with duas and prayers and love and positive thoughts. From the deepest part of my heart, thank you!

P.s. forgive me for all errors. Silly phone is lagging.

Originally written 3/05/18

Tranquility and peace

This prayer room at #QEhospital is so very special to me. When I was in hospital, my parents would go to the prayer room at least 4 times a day to offer their prayer but also they would cry to Allah for me. I wasn't physically well to ever go and visit the place when I was on the ward even after transplant. My dad spoke to the Imam there who came and spoke to and gave me words of courage and duas to read. My parents were so in love with peace and tranquility of this place amongst all the chaos they were experiencing. They would go and reflect and recite Quran as well and Friday's when it was Jummah day (a very special day in Islam) my dad would go and pray in congregation and ask people to pray for me.

When I go for my appointments, I always make it a point to go and visit this place. It makes me feel so close to my parents and I can picture them crying and making dua for me. Today my dad isn't with me and I'm going through some really tough time with my health. Last week I had a terrible wobble and I just wanted to hear my dad's voice and my mum's too (she's currently in another country). I felt really lost last week and I had no idea who to cry to as I felt hopeless and that I'd never come out of this test. No one can give you that comfort but I was lucky enough to have one of my lovely uncle who listened to my crying and really uplifted me spiritually. I managed to get it out of my system.

The hard times will always reveal the great people in our lives. No one will quite understand how hard it is to scroll down facebook as fast as you can avoiding pictures of food or trying to ignore people conversing about food even when they know your diet is so limited. It baffles me sometimes but I guess people have to live on. I'm grateful I can go to this place and feel some connection with my parents. I wish I could run to my dad and tell him to make dua for me. Gosh I was always harassing him but his duas always made me feel better. Sometimes I'd secretly stand outside his door and listen to him just speaking to Allah swt and when he'd mention his Childrens names I'd feel all the goosebumps and tears rolling down my cheeks. I miss my dad.

Brother and sister

He was so excited to see his sister pick him up after school. Forget about running to me, he ran to his sister and hugged her and held her hand. He told her about his day and Aleena was gushing like a proud big sister. This is the second time this month she went to pick him up. He said he gets 'ecited' when he sees his appi. I just loved the way he put her hand in his and guided her. May Allah swt always keep them united like this.
I had a few name options for him before he was born. However when he was born, I leaned towards the name Isam more which has the perfect meaning- 'protection, security'. It totally fits in with his younger brother role but in many ways, I hope he will be his appi's security and protection inshallah.

As he is getting older, he is understanding about his sister's needs. When she has a tantrum (he has them too), he will offer her comfort like her towel and dummy.
He's so concerned about her feet and keeps asking if she will be able to put them flat like him after her surgery. He showed me yesterday that his appi will run upstairs like him too. Such heart melting moments in my life I get to see.
The other day he was asked what he will be buying his appi for her birthday and he said 'a Queen'. He just knows how to impress people with his talk.

Sometimes he gets very frustrated when she can't take part in everything or cannot do all the physical things he can but he loves her so much. They equally share such an amazing bond alhumdulillah BUT also has his moments. He truly can be the perfect Isam for Aleena.

My Liver Clinic Update

Finally, I have managed to sit down to type my update on my liver clinic appointment that I was dreading.  First of all though, I am typing from my little laptop (very tiny) that my husband bought for my birthday!  I haven’t typed on a keyboard in so many years and I’m struggling.  I used to be so fast at it too and on top my eyes are struggling with the screen as I suffer from keratoconus.  But I will have to make do with it.

If anyone follows me on Facebook, you’ll know that I have been really nervous about this appointment.  The previous appointment was very dramatic as I came across a very obnoxious doctor who made me cry which in turn forced me to leave the room.  I could feel myself shaking this time as I was really worried which doctor I’d come across.
Fortunately, I met a lovely Hepatologist who is also a Gastroenterologist.  He was very knowledgeable and humble at the same time and can I say, normal?  He listened to me and didn’t fob me off with, “when we see you next time....”, which I have been dealing with for over a year.  I think his panic alarm set in when I informed that the diagnosis I received was bile reflux and that I had seen a private surgeon through Bupa for a very big surgery called Duodenal Switch so the bile would flow downwards without causing me so much pain.  He, however has restricted me to no surgery and that they do not want anyone outside of QE touching me to perform surgeries.

I need further tests to rule out many other problems but also referred me for all these tests and also a nutritionist at the same time.  My kidneys are not doing great unfortunately and this has been the case for the past year so I will also now be seeing a nephrologist.  Between Aleena and I, I think we have got the whole NHS covered!

My kidneys do not concern me.  I do not even panic over abnormal liver results but this mysterious pain has really taken the life and soul out of me.  I avoid social circles because I cannot eat and drink everything.  My diet is extremely limited.  And I always worry when the pain will strike.  I have been in pain in family members home and even ended up vomiting in their home.  It isn’t pleasant and can really bring your confidence down.

I do not expect anyone’s life to stop for me but sometimes I do expect a little sensitivity towards my limited diet and what I am going through mentally and so sometimes avoiding parties and family functions is the only ideal thing for me.  I do not want to burden anyone with my sufferings and although I never have an unfriendly face, pretending to have a fake smile also upsets me.  My life takes a lot out of me and I’m not complaining but some days are hard.

I feel like I’m carrying a broken body around with me which the doctors are gluing bit by bit.  My liver, my kidneys, my stomach and let’s not get into the side effects of the medications.  The worst of all is, I forget things.  Sometimes I genuinely cannot remember certain things and it has been irritating me but apparently Prograf can cause some memory issues.

Some days are so hard to get out of bed when I have debilitating tiredness and get my children ready for school.  My son comes home with weekly homework and at least 2 books a week to read. Trying to keep on top of everything within the house and managing the children is becoming tiresome.  Aleena has finally started respite which gives me a few evenings to catch up with Isam on his reading but also some evenings I just rest in bed.

I stopped this blog in the middle and just getting round to finishing it up.  My liver doctor called me and well, I’m very anaemic hence the breathlessness and feeling suffocated and really exhausted. I have to have another endoscopy and a barium swallow test and maybe an angiography to see if there are any blockages. Let’s hope that’s what it is and they can treat it and I can be on my merry way to a healthier life.

Winter is wrapping itself around us and I hope it will be pass by soon and spring will be on its way.  I do love the beautiful decorations and all the happy and cheery people because of the festivities. It is nice to see people smile.  Just being around happy strangers can bring warmth into my heart and life. Let’s hope soon I will be one of them too!