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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HEALTH UPDATE: OCTOBER 2015

Original Writing

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

HEALTH UPDATE: AUGUST 2015

Original Writing
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