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 year ago today
I gave someone the power
to break me.
I thought the pieces
that I was damaged goods
But today I lie here
knowing that someone else
has decided not to fix me
or attempt to repair me
but to complete me
day by day.
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.
2016 has brought us a whirlwind of emotions. It’s felt like a bloody long year too!
From restarting my degree at the university of my dreams, to meeting some of the truly wonderful people I now hold dear to me, it’s been a crazy year that I wouldn’t change for the world. It’s also taught me how important it is to keep your loved ones close: to cherish every second you have with them, because life is far too unpredictable and we just cannot know when our time on this earth will be over.
Strangers have become best friends. Best friends have become family. Family ties have grown stronger (in some cases, mind!) 2016 has been a year of life lessons, too. I’ve learnt that people will come in and out of your life, but those who are supposed to be in it will come back to you eventually. Those who don’t come back, well, for the briefest moments, they were in your life for a reason. All we can do is learn from what they’ve taught us, and move on with what they’ve left behind. Life is too unpredictable to hold grudges and negativity against those we once cared for.
I look forward to a year of positivity ahead of me. As cliche as it sounds, I’m very much looking forward to leaving negativity behind me in 2016, and moving forward with those who stuck by me relentlessly this year, bringing me nothing but happiness and filling my life with love.
Happy 2017! Let’s make it a good one.
“In the end, only three things matter: how much you loved, how gently you lived, and how gracefully you let go of things not meant for you.” – Unknown
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
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!