HEALTH UPDATE 2017

Life Updates

4 years later and I finally have the answers I’ve been waiting for.

After seeing a pain consultant at UCLH, I was told I had damage to my abdominal wall, most probably as a result of my operation in 2013. This would explain the consistency in daily pain and the multiple admissions to hospital. The methods of dealing with this are somewhat complicated – there is no “cure” as such, as surgery runs far too many fatal risks, not to mention the risk of furthermore pain. I’m on medication for chronic pain, and hopefully by steadily increasing the dose if I experience severe pain again, it should make a considerable difference to my quality of life. The only downside to the medication is their sedative effect, so I spent 90% of my day resembling that of a zombie. I’ve now been referred to the complex pain team at UCLH, where I’ll undergo physiotherapy to help live with the pain, potential local anaesthetic shots to numb the pain of my damaged abdominal wall and ultimately methods which will ensure I don’t have to visit the a&e department as frequently, and hopefully in time, at all.

Over the past 4 years, I’ve gone through just about every single test possible for abdominal pain and the lack of answers completely destroyed me. I was living in a constant state of not knowing what I was suffering from, with doctors, or “specialists” in the private healthcare field not willing to act on anything. 2015 was by far the worst year of my life – 11 admissions to a&e over 12 months, where they could only manage the pain with opiates left me feeling at my lowest. Many people, healthcare professionals included, underestimate the debilitating impact of chronic pain. I’m always asked to rate my pain – how do I measure it, when I’ve experienced the worst kind this world has to offer? To this day, I’ve never measured my pain at a 10/10 because I’ve become so desensitised to the excruciating nature of a relapse.

I’ve always had people commending me for my bravery and strength, but ultimately this is 90% of the time a facade to help me survive. I’m so far from brave, compared to those who suffer from terminal illnesses and what not. There are days where I’m overcome with anxiety over how I’ll live with the pain when it gets bad, and how isolating the pain can be. There are days when I criticise myself for pitying myself when I’m so lucky compared to the plight of others. I’m filled with guilt at the sacrifices my family have made for me, and the pain they’ve had to helplessly witness, all the while encouraging me and supporting me. But I’ve slowly come to realise that it’s perfectly okay to feel sorry for myself here and there. It’s okay to feel like absolute shit. It’s okay to cry my heart out. Because pain is soul-destroying.

Ultimately, I survived these 4 years solely because I have an incredible support system. My immediate family and close friends have saved my life.

So, thank you. Thank you to the specialists at UCLH for giving me the answers I’ve waited so long for. Thank you to my close friends who’ve shown me so much support recently. Thank you to the friends who’ve become family. Thank you to each and every one of you who have contacted me on here and offered advice, encouragement and so much more. And thank you, a thousand times over, to my family.  God bless you all.

It gets worse before it gets better, but it does get better.

A x

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An Open Letter to My Parents

Life Updates

The past few years have been turbulent, both physically and mentally for myself and those around me; the constant rejection of the answers I was desperately looking for, the reluctance to be treated for whatever is going on inside me, and the anxiety surrounding being in pain everyday were painful to say in the least. However, with the news that the investigations into my health conditions have now come to an end, I’ve stopped hoping for a miracle, adopting a rather more realistic approach to dealing with the pain. I’ve made peace with the idea that I’ll have to treat these symptoms, potentially for the rest of my life, rather than having multiple doctors, surgeons and specialists poke me here and there, performing countless tests.

Those closest to me will know how much I despise pity and sympathy: my health is something I have yet to come to terms with (I know, I know, it’s been 4 years) so handling other’s reactions isn’t something that comes easily to me when I don’t really know how to handle it myself. However, the one thing I have always been grateful for, but now more so than ever, is the relentless support of my parents.

During my darkest hours, they shared my pain and agony. In 2013, they shared my fear of going under the knife for the first time in my life. But they put aside all their own emotions to support me, comfort me and encourage me. Many will comment on my bravery in suffering from a debilitating health issue, but I believe the bravest of them all are my parents, for being strong for me. I remember waking up from the general anaesthetic after my operation and hearing my mum sob because she couldn’t handle the sight of me being attached to wires, an oxygen mask, and tubes attached to me. This was the first time I’d heard her cry since I was diagnosed, and in many ways that was more painful than the actual agony of a gallbladder attack. As parents, there’s an assumption that you have to be strong for your children, and my parents exceeded that. I know for a fact that their support has helped me live through this, and without it, I don’t know where I’d be.

It’s time for me to stop thinking about how I’ll survive living with whatever I am going through, but rather focus on how I can live my life to the fullest with it. Perhaps I was justified in my selfishness regarding the whole thing – after all, it was my illness, something only I was experiencing. But in many ways, my pain is also my parents’ pain. I haven’t given them enough credit for helping me survive the worst days of my life. I owe them everything for helping me keep it together when I was at my lowest points. Their ability to see the light at the end of the tunnel when I’m blind to it myself is a gift they are blessed with.

So thank you both, for transforming me into the strong woman I am today. I am a survivor because of you. You love me even when I’m at my worst, and boy am I an absolute nightmare. Through your care and devotion, you have created a human being who is prepared to fight whatever life throws at her head on. You have given me the strength to survive my darkest hours, and it’s only your words which help me overcome them. Your strength and courage lives within me, and I am so proud to call you my parents. I don’t know what the future holds, but I know I’ll be able to embrace it because of you.

A x

HEALTH UPDATE: JULY 2016

Life Updates

It could be worse.

That has pretty much been my life motto for the past two years and it’s actually worked out considerably well. As a result, I’m less prone to wallowing in self-pity, although perhaps I can thank my job for that, too.

After 20 months of uncertainty, pain, hospital admissions and tests, I’ve been told there’s nothing that can be done for my current health situation as there are too many risks associated with surgery. (Last resort and what we were subtly hoping for as a miraculous cure) There’s no medication left for me to take; I’m already on painkillers, plus chronic pain relief before I go to sleep, so a medicinal approach is also out of the question. Doctors have now suggested a “holistic approach” to dealing with the pain and symptoms that come with this confusing/unique health condition.

I’ve been a little weary when it comes to the term “holistic” because it felt like a cop-out when it was suggested on the post-consultation report. Almost like a “we couldn’t help you surgically, so try some homeopathy or yoga.” But looking into it further, it’s worth a shot considering we’ve exhausted every other avenue.

I guess the worst aspect of living with this/these health condition(s) is the absolute loneliness that comes with having to live with it. Of course I am incredibly blessed and lucky to have such supportive parents and family, as well as exceptional friends who have stood by my side since the day I was first hospitalised. Ultimately, however, having to live with ongoing pain and knowing there’s no real cure out there for me now is the worst thing. Realising that I’ve been through so much pain, horrid health relapses and symptoms, only to be told I should ‘go herbal.’ It’s awfully lonely; having to summon up the courage to say “okay Anisah, you’ve been through this before, you can get through this now.” Accepting that pain is a part of my life I just have to live with. When I have to leave a room, or take a break from work, or even duck to the loos when out with friends, I have to pray and beg that whatever’s causing my abdomen grief will just go away. “You just have to ride it out” is infuriating to hear; why me? After everything, why am I still suffering? Will it ever go away?

It sounds terribly despondent, I know, but I guess the lonely aspect of a health condition is something I’ve not touched on before, yet is imperative to consider nevertheless. It interlinks strongly with your psychological state of mind too, almost like a vicious circle. When I experience physical pain, my anxiety levels increase and I panic a little. As a result of living with these health issues, I’m prone to periods of feeling low and anxious for the future. I’m desperately hoping that a holistic approach helps me physically and mentally, because I am drained in both senses!

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” – Kahlil Gibran

A x

Health Is Wealth

Original Writing

There are times when my health brings me to my knees, both physically and mentally. Sometimes, it does feel like things will never get better – the risks, the waiting, the bad news, the symptoms… It’s hard to put on a brave face when you’re looking at the possibility of a future of pain worse than I’m enduring now.

But then I realise: other than my pancreas being a slight disaster as of recent, and my bile duct muscle failing to work properly, I’m pretty healthy. I can walk, run, go about my daily activities properly, albeit to some extent. My condition is not terminal. I’m not going to die. (Hopefully!) There are people out there, some much younger than me, who are going through traumatic experiences, unbearable pain and are suffering incomprehensibly from terminal diseases. Their chances of survival are increasing with new technology and research dedicated to finding cures, but they’re still low.

Family and health are the two most important things in my life, and ultimately, I have both. My body may not be working perfectly, but it’s working nevertheless.

“Strength does not come from physical capacity. It comes from an indomitable will.”
Mahatma Gandhi 

Thank you, Brandon

Current Affairs

I’ve been following the Humans of New York (HONY) page on Facebook for a couple of years now and I’m still astounded everyday by the stories of strength, survival and resilience around the world. Recently, the founder of HONY and photographer, Brandon, has produced a series on paediatric cancer patients in New York, documenting the lives of cancer sufferers from the perspective of parents and patients.

All around the world and through social media we hear stories of cancer sufferers and their plight against the disease. So much so that the term ‘cancer’ is almost considered to be a taboo; whenever we hear the word we associate it with a death sentence. But what strikes me about these individual stories is the strength of the children who suffer with the disease on a daily basis, and their attitude towards it being nothing but positive. With their childhood almost robbed, they persevere with the determination to fight. Most of them don’t realise they’re sick, they consider themselves to be just the same as other children and that is what’s remarkable about these stories. It makes everything we complain about on a daily basis seem so mundane and minuscule in comparison to the sickness these young children fight everyday.

They’re an inspiration to us all. They show us that life isn’t too short at all, it’s too unpredictable to have a negative attitude towards. We ought to celebrate the good health we have and make the most of what life has to offer us. But we also ought to give the parents credit – those who remain as strong as they possibly can be for their children, because that in itself can only be debilitating, both emotionally and physically.

So thank you, Brandon, for making us realise how precious life is when you’re healthy. It’s something we take for granted all too easily. In the day-to-day rush of working or studying, we forget to appreciate what really matters. Our health, our families and each other. Thank you for giving these remarkable fighters a voice. They are the epitome of bravery. And they renew our faith in the health professionals who save lives everyday with their tireless efforts, as well as with God in His power to heal.

I urge as many of you as possible to donate money towards the MSK cancer centre and other charities; more money for these centres means more research facilities and a higher likelihood of finding cures for the devastating diseases.

And lastly, Brandon, we cannot commend you enough for all you do worldwide, from the refugee crisis in Syria to humanitarian crisis victims to cancer patients.

Brandon’s HONY blog: http://www.humansofnewyork.com

Donation page for the MSK Cancer Centre: https://www.generosity.com/community-fundraising/let-s-help-dr-o-reilly-fight-pediatric-cancer

A x

Featured image: Stanton’s book cover ‘Humans of New York’ on amazon

HEALTH UPDATE: MAY 2016

Life Updates

The waiting game.

It appears I spend most of my time waiting for things to happen; currently, I’m waiting to be seen by a specialist in the field of Sphincter of Oddi Dysfunction at Harley Street. Sadly, the NHS route proved to be an absolute disaster; I spent two months waiting for the appointment to come through to see a consultant who had an “interest” in the field of SOD at a tertiary centre hospital, only for him to tell me there was nothing he could do about my condition due to a substantial “lack of evidence” excluding my pain. It’s safe to say that I was livid after that appointment. His reluctance to do anything about my condition pretty much summed up why I have no faith in doctors – for over a year and a half, my condition has worsened yet they seem to intentionally brush over my three year-long suffering.

Sphincter of Oddi Dysfunction is a tricky little condition; for one, the Sphincter muscle in my bile duct is so tiny that the best way to assess whether it’s working properly (or not, in my case) is to go inside and undergo a procedure. The problem is this procedure carries the risk of inducing pancreatitis; having already suffered a bout of it two years ago, I’m not too keen to risk any chances of having it again because the pain is horrendous. Pancreatitis also runs the risk of inflicting life-long damage onto the pancreas, creating furthermore health problems. However, having exhausted many medicinal routes to tackle to pain I’m in daily with SOD, I’m running out of patience and options. Being bombarded with pain relief doesn’t solve the issue and it appears the doctors I’ve seen are almost reluctant to cure it, opting for a safer, non-invasive method of treating the symptoms.

Another problem is the relapses. Whilst I was away, I suffered from an episode of severe pain which landed me in hospital – not ideal when you’re in another country. The relapses occur almost every other month, drastically impacting my life with its unpredictability. Doctors perhaps perceive my desperation for medical intervention as just another kid who comes in with pain in their stomach. They don’t realise how badly this condition has ruined my life for the past three years. They can’t imagine being in pain for a solid 18 months because they’ve never been there.

I know it’s wrong to desperately hope for something when I’ve already been disappointed so many times before, but I sincerely hope this consultant will give me some answers this time. If not surgical intervention then at least another option to consider would be preferable. Being written off has destroyed me, physically and emotionally.

So, hopefully, in ten days I may just get some answers!

A x

 

Anisah vs Her Body: Round 3

Life Updates

2013: Laparoscopic Cholecystectomy. 2014: Pancreatitis. 2015-present: Sphincter of Oddi Dysfunction.

I’m stuck in a kind of stand off between myself and my doctors; they’re aware of how detrimental my condition is to my physical and mental wellbeing, yet they’re reluctant to take any action due to the potentially life threatening complications associated with it. It’s made furthermore frustrating by the fact that SOD is so rare in patients, especially at my age, too.

2015 was a year completely dominated by pain and I hope never to relive the experiences I endured that year again. When you’re in a situation such as mine, it’s incredibly difficult to adopt a facade of positivity and automatic “I’m fine” responses to the repetitive, rhetorical “are you okay?” In short; no, I’m not okay. It appears I’m fighting my body on a daily basis in the hope that it’ll stop trying to reduce me to my knees from unrelenting pain. But that’s not what people want to hear.

Thankfully, I appear to have inherited my parents’ strength and willpower; I am a survivor and I will fight this to the end, but its left me questioning – at what cost? I’m unable to go about my daily activities without being crippled by the pain at least twice during the course of the day. I can’t eat properly. The prospect of a (second) good university experience is hampered by pain. My anxiety is through the roof. It’s all a vicious cycle with no bright light – yet.

I’m a strong believer in things happening for a reason, by forces greater than us. There is a plan for me, I just need to trust in myself and those forces that I’ll make it through to the other side. It’s been a traumatising road these past few years and I’m incredibly tired of fighting, but I’m also desperately hoping this won’t continue for much longer and that this is just the final stretch in a (literally) gut-wrenching battle.

Throughout this ordeal, I’ve managed to retain a somewhat positive outlook on life fundamentally thanks to the strong support network of friends and family I have around me. I say this time and time again to the point where these words almost come across as empty but it’s thanks to my loved ones that I have come this far. My mother raised me to be strong, positive and almost certainly not a defeatist; my father raised me as a fighter. It is because of their support and unrelenting positivity not to mention belief in me that I’ve managed to make it this far. My true friends stood by my side and helped me battle against my health during my darkest hours, giving me the strength to fight when I thought I could fight no longer. I’ve come to know some truly wonderful people over the past few months who have completely changed my outlook on life, not to mention made me a better, stronger person. I cannot thank them enough for simply being in my life, and I know I’m blessed beyond words to have compassionate people around me. It’s because of these people that, during the dark hours, I can see a light. Perhaps it’s not the light at the end of the tunnel, but the promise of light is good enough for me.

So, amidst a sea of uncertainty, I’m going to give this illness everything I’ve got and battle through to the end, armed with a positive mindset and determination to overcome it before it has the chance to consume me. Forgive me if I backtrack every now and then, though.

On a final note, thank YOU to everyone who’s taken the time to simply read my blog, not to mention commenting on it, too. From my work colleagues to best friends to family friends: your support means the world to me. I don’t even need to tell you I love you; you already know. Without you, I would not be half the person I am today.

A x

Perspective

Life Updates, Original Writing

It’s March 2nd and my first day back home after spending 5 days in hospital has come to an end. I have thoroughly enjoyed being wrapped up in a blanket watching ‘The Night Manager’ and ‘The People vs OJ Simpson: American Crime Story.’ However, I’m not the same person I was when I went in to hospital.

Last Friday night, I was left feeling a little on edge after experiencing discomfort due to ongoing stomach pains. Of course, stomach pains are nothing out of the ordinary for me but they usually went away after an hour or so and even after taking medication, I was still suffering. Things reached a peak at around 11pm on Friday night; I was doubled over in pain, unable to breathe without feeling a stabbing pain rippling through my upper abdomen. Not cute. By 2.30am the following morning, I was hooked up to an IV line. Over the course of the next 5 days, I was transferred from a&e to the surgical assessment unit, to the day surgery unit. But that isn’t the point of this post.

Whilst in the day surgery unit, I came across many patients being admitted and transferred and I guess I should’ve been prepared for some sticky situations – after all, this was a surgical unit. On Monday night, a young patient was admitted to the bed next to me after undergoing surgery. It was clear that something hadn’t gone too great with the operation because she was screaming in agony and bleeding out. This was at roughly 10pm so visiting times were over and the rest of us in the bay were alone and it was pretty quite, with patients either zonked out on morphine or trying their best to sleep. Her parents were with her to ensure she settled in okay and was recovering from the operation, when things took a sudden turn for the worse. I heard the patient’s mother call the nurses frantically, telling them her daughter was feeling light-headed. Within two minutes, the patient had gone into cardiac arrest from bleeding out.

The next 20 minutes were a blur of surgeons, anaesthetists and nurses running around, giving her oxygen and trying to stop the bleeding. With no theatres free to perform emergency surgery, they were forced to stop the bleeding there and then in order to save her life. Her parents were hysterical with fear and surgeons were shouting about the lack of blood bags available to them – it was terrifying. I guess I forgot that in hospitals, things do go wrong and situations like this do occur. It’s not common but it does happen and in the moment, everything just fell away. The pain I was experiencing, the sickness, all the symptoms just fell away because all I was thinking of was how young this girl was next to me and how numb I felt.

I don’t know if they managed to save her. She didn’t come back the following day, and neither the nurses nor other members of staff had any clue as to what happened in that operating theatre. Situations like this put everything into perspective; life is too unpredictable and we ought to make the most of the good health we have. What is life if we don’t have our health? Right now, I can’t get those 20 minutes out of my head. I’m not sure if I will forget the panic in her parents’ voices, the panic in the surgeons’ voices and the sound of the blood pressure monitor dropping. It’s a horrific reminder of the fact that we’re only on this planet for a limited amount of time and we ought to make the most of every single second; by being good within ourselves and towards others. Whether you believe in God and His power to guide you or not, it’s important to have a pure heart as that alone makes us immortal.

“Is not He Who listens to the distressed soul when it calls on Him, and remove its suffering, and makes you inheritors of the earth?…” [Surah al-Naml 27:62] 

A x