Life Updates

Anisah vs Her Body: Round 3

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

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HEALTH UPDATE: JAN 2016

I’m so excited to start this post off with a positive! I’m 19 days into January and PAIN FREE! This is such a huge deal for me, I can’t even process it.

Okay, so I’m not 100% pain free; more along the lines of 70% but it’s still a dramatic improvement from 2015. Thankfully, it’s less frequent and doesn’t last very long either, meaning I’m not exactly disabled by the pain as I was last year. I’m still getting my head around saying last year. I actually survived 2015.

After well over a year of being seen by multiple private specialists in and around London, my parents and I lost hope in the private medical care system simply because nothing was being done. I’d had countless tests done, all coming back negative meaning the doctors had literally nothing to go on in order to make a concrete diagnosis other than my pain. Considering there was no visual evidence to support the pain, it was hard for them to figure out what was going on inside me and I think they pretty much gave up after increasing my daily pain relief and putting me on 3000 units of Creon a day.

During my hospitalisation in November last year, I was referred to a hepatologist at Royal Surrey County Hospital – a tertiary care centre. Because I wasn’t getting anywhere privately, we agreed it was best to get another specialist opinion and I had the consultation last week. (Downside to the NHS: everything takes at least a month or two to happen!) I was seen by and am currently under the care of the hepatology surgical team who informed me that the Sphincter of Oddi Dysfunction (SOD) diagnosis has been confirmed. WAHEY.

After having a procedure in December, they discovered slight inflammation in the bile duct which suggests a possible latent gallstone (from my laparoscopic cholysysectomy) had recently passed through. This would explain the recurrent attacks of excruciating pain which landed me in a&e so many times last year as well as my intolerance to codeine and morphine. The slight issue with SOD is it’s unpredictability; I have no way of knowing when another attack will take place or how destructive it will be. The surgeons have come up with a potential solution, one which has been brought up by a number of my surgeons and consultants: surgery. A cutting of the sphincter muscle will reduce it’s overactivity which is the fundamental cause of pain everyday, however there are many risks associated with such a rare and risky operation. Most importantly, it carries the risk of internal bleeding and pancreatitis. Having had one attack of acute pancreatitis already, I’m not too keen to have another one as it left me in hospital for a week, attached to a IV opiate drip. It also carries the risk of severely damaging your pancreas, another obstacle I’d rather avoid.

The next step is to be seen by a hepatologist consultant who will discuss his opinion on the surgery and whether the pros outweigh the cons. He’ll then liaise with the surgical team and they’ll come to their professional conclusion before consulting with me. It sounds awfully similar to my last consultation with my private specialists, but this time round I’m definitely more positive as they’re going to get to the root of the problem regardless of the methods they choose. Knowing what health condition I have and that something is going to be done about it has put my mind at ease already!

Clarity. That’s all I needed. And now I’m much happier and more optimistic, too. The possibility of a pain free future is looking increasingly likely!

A x

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Work & Life Update: Dec 2015

IT’S NEARLY CHRISTMAS. LET THE CARNAGE BEGIN.

I’m now four whole days (6-9 hours per day) into my new job and can honestly say that I’ve never worked so hard and been so happy with a fashion-retail job in my entire life. Not only are my team fantastic, but they’re incredibly understanding and fun to be around (My manager will be very chuffed when he sees this.)

Working for one of the biggest ‘high end’ fashion brands is pretty daunting and by the end of a full day’s shift, I’m ready for bed. But the work isn’t unenjoyable and that’s the main thing (I say that now, but I guarantee that opinion will change drastically once the christmas week and shopping carnage begins.)  I look forward to my shifts, despite some of them being 9 hours long. I consider myself awfully lucky to have this job as it’s a stepping stone to progression in the industry!

The aim of taking this year off was to focus on my health and take time to recover from whatever is going on inside me. After undergoing a procedure and having ridiculous amounts of tests done, it’s still inconclusive which is exactly what we weren’t hoping for. Nevertheless, I’m looking at the lack of information on these tests as a positive sign, in the hope that I will recover in my own time. My condition(s), whatever they may be, are unpredictable and can be triggered by anything and everything – fatty food, taking medication to getting a cold! That’s why it’s imperative for me to not overwork myself but at the same time keep busy and preoccupied. For a long time, I felt incredibly low and disheartened by this illness but now I’ve realised that I’m one of the not so lucky ones – and that’s okay.

I want to enjoy the next few weeks coming up to the big 25th!

Happy christmas countdown,

A x

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HEALTH UPDATE: OCTOBER 2015

I’m back! (Ish)

After what seems like forever, I’m finally getting into the swing of things again with regards to university assignments and blogging 🙂

The last time I updated you all on my health, it had a rather dreary tone to it; I was left in the lurch with what I was actually suffering from and there never seemed to be an end to the pain. Not all that much has improved with regards to the pain, but I have a diagnosis!

Sphincter of Oddi Dysfunction. It sounds complicated (and it is) but ultimately, it all boils down to the after-effects of having my gallbladder removed. My body is currently struggling to process the flow of juices flowing from my liver to my pancreas, and the muscle which controls the flow of pancreatic juices from my bile duct into my duodenum (eh, such technical terms) is overwhelmed with stress to regulate all these juices, so it goes into spasm. Thus, the pain hits. Every time the muscle spasms, the pain hits my left side, where my pancreas is located, my right side, where my gallbladder used to be and my shoulder; I’m still unsure as to why and how my shoulder comes into this. At times the pain becomes disabling to the point where I cannot move, sit or stand without doubling over but most of the time, it is a background pain which is awfully uncomfortable.

After having a consultation with my former surgeon, he agreed on the above diagnosis which is apparently common with people who have undergone a cholecystectomy such as myself. The only problem is how to tackle it!

Having explored every avenue possible including CT scans, MRI scans, X-Rays, ultrasounds and an endoscopy, which all came back with no indication of a latent stone or any obstruction to cause such pain, I was put on chronic pain relief. Having been on medication since the beginning of the year, both medical professionals and myself believe it’s time for something to be done. The next possible avenue to explore, however, is surgery. Nothing elaborate, a simple cutting of the muscle which is causing the agony. The only problem with this surgery is the risks involved; they’re slightly worrying! I have an appointment in 2 weeks time with a specialist in this area of surgery to discuss the pros and cons of the procedure with my parents and I.

So, thats the update so far! It’s not all doom and gloom anymore, despite being in pain for two and a half years 🙂

Ciao for now,

A x

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HEALTH UPDATE: AUGUST 2015

God, I wish this could be a more positive update but unfortunately, it’s a little on the dreary side. Nevertheless, it’s been a while since I’ve posted a personal update and I thought it was time to (a) get it off my chest and (b) inform people who don’t live with health conditions what it really is like.
For those of you who don’t know, I suffer from pancreatitis; inflammation of the pancreas after a trigger. My trigger, after copious amounts of tests, is still unknown to the professionals however, it appears my gallbladder removal seems the likely suspect. More often than not (this was news to me) gallstones can get trapped inside bile ducts which connect to the pancreas, hence causing inflammation and let’s not forget the best seller; a hell of a lot of pain. I’ve been told by many that gallbladder and gallstone pain is the worst pain you’ll ever experience. Bullshit. Pancreatitis is by far the worst pain; I thought I was going to pass out from the pain and couldn’t stand, sit or walk. Morphine was my best friend and codeine was a close second.
There are two types of pancreatitis: acute and chronic. Acute is, as the name gives away, short, and sometimes fatal, episodes of pain caused by the inflammation. Chronic is consistent pain and episodes of pancreatitis attacks. The latter, in some ways, is worse as you’re more susceptible to pancreatic cancer. I thank God I don’t have CP as it’s a death sentence.
AP usually takes 3 months or so to recover from. I had my attack in Christmas last year. I was put on chronic pain relief medication in January, and for a while my pain did settle. But that was short lived; in late May this year, my pain returned after attending a party. Unfortunately, I am still suffering with the pain. The cause is, again, unknown, and the doctors are baffled as to why I’m still getting symptoms.
The first thing to reiterate is that the pain is nowhere near as bad as it was over Christmas; that was a life or death kind of pain. However, being constantly reminded of my poor health with a mild sensation of being stabbed in the stomach every time I eat something is not something to belittle. Just because I can stand on two feet and smile and make conversation does not mean I’m okay. Some people are better at hiding their pain and problems. I am one of them.
My family, in particular my parents, have been nothing but supportive and by my side throughout this whole situation. But watching them watch me in agony and seeing their agony at being so utterly helpless was heartbreaking. I know it’s wrong to hide pain and suffering from your parents, but sometimes it’s even more painful to watch the worry in their eyes as I tell them I’ve relapsed into spasming pain again.
I think the key underlying issue behind all this is how to cope with a health condition. I’ve said time and time again until I’m blue in the face that I’ve got it lucky; my condition is not terminal, it can be cured and doesn’t put my life in imminent danger. But being in pain all the time is psychologically draining; at times it makes me miserable. the thought of never recovering from this condition, or the possibility of being on life long pain relief. Taking two pills a night to knock me out and help me forget what pain really is. There’s no other way to describe it: it’s shit.
I’ve learnt to somewhat cope with it by writing about it. Knowing that there are others out there who have fought the same battle I fight on a daily basis. But I suppose I still do struggle. The bad days tend to outweigh the good, and that’s something I need to work on.
I guess the reason I wrote this is to inform people that not everyone who plasters a smile on their face is okay. Some people do suffer in silence. Half of the stuff I go through on a daily basis wouldn’t make it to this page because I haven’t come to terms with it yet.
But I hope it gets better. Because I have a life to live, and I intend on living it to the full.
Anisah
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