'I've been bedridden since January 2018'
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'I've been bedridden since January 2018'

The chronic pain surrounded in stigma

Photo: Shutterstock

Photo: Shutterstock

Trying to be a good parent is a tough job, and to be a good parent with chronic pain is even tougher. Antoinette Sinnas is one mother living like this, and she knows the emotional side of it can cut even deeper wounds. Here, she opens up about losing your life, but still existing… From fibromyalgia and myalgic encephalomyelitis to spinal stenosis, this is what it means to suffer – and survive – such silent but excruciating conditions that are still surrounded in stigma.

I’m no stranger to chronic pain. What I suffer from is spinal stenosis, a condition that narrows the spinal canal, putting pressure on the spinal cord and nerves.

The left side of my body is most affected, and until my recent surgeries, I experienced excruciating pain that originated from my neck, shooting down to my foot. This used to be accompanied by numbness, tingling and a terrible burning sensation. Although my symptoms are gradually decreasing, my leg is perpetually weak, my knee buckles quite often and I feel like I was being skewered and grilled.

Year in, year out, full-blown flare-ups would put me totally out of action. This worsened each year and disrupted my family life, sleep patterns, emotions, stomach, menstrual cycle and made me lax as a wife and mother.

A copious amount of drugs and numerous conservative methods of pain relief couldn’t take it away. I was advised that the risk of surgery at my young age may do the trick, or I could end up in a wheelchair… or worse. The strong painkillers were eating into my body due to their harsh side effects. It was a catch-22; we didn’t know whether to wind the watch or bark at the moon.

Since January 2018, I have been more or less bedridden. Much as I try, the pain is hard to hide from my children. The guilt monster emerges from under the bed and plagues my feeling of being an incompetent mother. I am in no contest, aiming to be a super mum, but I find it heart-breaking that my young daughters are more attuned to my pain and always put my needs before theirs.

Feeding my guilt just makes things worse and I know my body’s limitations, so we work around my pain threshold as much as I can. Instead of trips to the park, the beach, or to the mall, we cuddle up, watch movies, play board games, or chit-chat. Dazed and confused, I feel it is pivotal that we spend quality time as a family.

Walking to drop off and collect my children from school was the hardest. As I waited for school to finish, I would hear the bell ring and watch all the children running out. I remember that, due to the incapacitating pain, I was unable to lift my arms forward to protect myself if any of them barrelled into me. Scared out of my wits, I’d clench my muscles tight to keep steady and not be propelled off balance.

Hoisting their school bags on my back was like carrying a ton of cargo. My body buckled under the pressure and there came a point when I just couldn’t carry their bags anymore. When my kids saw what was happening, they didn’t allow me to. I guess to others I must have looked like the worst mother on the planet, allowing my kids to carry their own bags, while I walked beside them looking bedraggled and berating myself.

But who knew what was really going on? They couldn’t see the invisible cross on my back. If I saw a person who looked like me on the street, I would have been very judgmental too and formed mistaken conclusions. But now, I’ve realised that unless you’re in their shoes, you’ll never know their story. Everyone is fighting a battle, in some way or another, that we may or may not know anything about. All we can do is empathise and let judgement take a back seat.

Trying to be a good parent is a tough job, and to be a good parent with pain is even tougher. There are so many parents out

here living in chronic pain and I know the emotional side of it can cut deeper wounds. Simple actions like giving my daughters a tight hug, carrying my six-year-old like a little koala, going on family outings, or even simple daily chores like cooking and cleaning would be like asking a woman in the throes of labour to get up and bake you a pie.

It has sure been a learning curve for our family, especially my children who have been so caring and compassionate. Accompanied with gentle kisses, they have told me countless times: “You’re the most amazing mummy! You’re so strong!” And it always boosts me.

Seeing their mother suffer has taught my kids to persevere through adversity and empathise with others in pain. They’ve also learnt certain tasks, like making their own bowl of cereal for breakfast, tidying up their room and picking out what to wear from their wardrobe. It all adds up.

My husband has been my concrete support throughout this ordeal. His are the set of legs I support myself on when I can’t stand on my own. Friends and neighbours have helped us immensely with food, funds and daily chores. The Maltese Islands may be among the smallest on the planet, but their people truly have the biggest hearts.

After undergoing two major spinal surgeries and several other procedures over the past months, I am on the mend and can finally see the light at the end of the tunnel. Neither am I in a wheelchair and nor am I pushing up daisies and can put that fear behind me.

I am aware that the road to recovery is long due to severe neural damage, but I am resurfacing to the shore from a deep dark abyss. All credit goes to the remarkable work of an Italian surgeon, Prof. Benedetto Pinto, who specialises in intralaminar surgery, and his team at Saint James Hospital.

They have tried their very best to get me to where I am today, tackling a mechanical issue I had. I may not be able to run a marathon, or arm wrestle, but it doesn’t really matter as long as I’m not a pill head in constant debilitating pain and as long as I get my life back on track.

Rebecca’s invisible disabilities

Rebecca Camilleri was an ambitious, happy-go-lucky, independent girl, who actively juggled three jobs… until chronic pain meant it all came crashing down.

“Oh, what a workaholic I was!

I loved studying, playing sports and exploring my creative gene,” she says. She always dreamt of running her own business selling her polymer clay jewellery, along with her fine-art sketches. She strived towards making her dream come true, but little did she know a bleak future lay ahead for her.

As a young child, Rebecca was taken to numerous doctors as she always suffered from severe body pain and headaches. Her condition was attributed to growing pains. Despite this, she tried to keep her spirits high and kept on going. She ping-ponged between so many doctors, they eventually lost interest in her case.

Rebecca’s life took a dramatic turn for the worse at the age of 17 when she was struck with glandular fever, an acute viral infection that mainly affects young adults. “I never went back to my old self again. I felt the body I was in wasn’t mine anymore and that I was a prisoner in my own self,” she admits.

The consequences made her veer off life’s tracks and she began caving in. At the age of 25, Rebecca was diagnosed with fibromyalgia, a syndrome that affects the muscles and soft tissue, causing chronic pain.

“I have lived with pain since I was a child, but this and the spasms never stopped me, nor slowed me down. What really altered my life were the other symptoms that crept onto me.

At this point, I still couldn’t fathom whether this was just fibromyalgia, or if was I suffering from something even worse.

“One morning, I woke up and just couldn’t move my legs. I was alone at home and panic gripped me as I couldn’t even reach my phone to call for help.

Photo: ShutterstockPhoto: Shutterstock

I knew something was definitely wrong. I lay still and waited. After two scary hours, I was able to wiggle my toes and move my feet slowly,” Rebecca recalls.

“Before I knew it, I had to quit two of my jobs as I physically couldn’t make it to work. I tried to hold on to my third job, which was just a four-hour shift, but even that became too much to bear. I would throw up each morning because I felt nauseous. My body felt too weak to get out of bed, but I would drag myself out with the last drop of strength left in me. I had no choice but to go to work with a paper bag in my hand just in case…”

Rebecca would call in sick quite often and was soon given a warning that she would have to resign should she continue to do so. Every day, she walked into the office as pale as a ghost, but her condition was always brushed aside and made fun of. It was a case of: “Death just walked through the door.”

In her early 30s, doctors told her she could very well be suffering from myalgic encephalomyelitis [ME], an infectious neurological disease, which represents a major attack on the central nervous system and an associated injury of the immune system by the chronic effects of a viral infection, which preceded Rebecca’s attack of glandular fever.

ME and fibromyalgia are two conditions that still have no direct laboratory tests. A person suffering from them can only be diagnosed when a long list of other conditions has been excluded.

When Rebecca was first struck with the conditions over a decade ago, there was practically little or no awareness about either of them. During those years, she felt scared of being ‘told off’

by doctors and colleagues that she was stressed, lazy, or an attention seeker and that it was all a big farce because she was depressed. She passed through a horrible phase because she felt blamed for something she had no control over.

Time has passed since then and Rebecca is now a single young woman living in poverty, looking after her 72-year-old mother, who is suffering from cancer. The pair slip through the cracks of the system: as neither of them have the ability to work, they live off the mother’s meagre pension. They barely have enough to scrape through each day, with hardly any nutritious food nor enough money for expensive medication and vitamins they both require.

With barely any energy in Rebecca’s body, she can’t venture out to work and gets paid for being her mother’s carer at home. She is concerned about what would happen to her if, God forbid, anything happens to her mother. Her condition only worsens each day.

With tears streaming down her face, Rebecca says: “How can I possibly work in this condition? For us to survive, my mum needs to continue being ill, so I get paid. My heart bleeds to see her like this. I regret that she gave up most of her life dodging my disabilities not to live under the critical eye of the public and their views on ME and fibromyalgia. But we take each day as it comes and manage to get by…”

With sadness in her eyes, Rebecca’s mother says: “I’m hoping my cancer goes, but I’m worried that if it does, we might not get help!”

Rebecca, together with Ruth Debono and Maria Spiteri, are doing a great job raising awareness about these conditions through the ME/CFS & FM Alliance to help co-sufferers and provide a solid support system for them.

Although she is not confined to her bed, Rebecca is, however, often housebound. She wakes exhausted every morning; so weak, she can barely breathe or utter a word. Even the simple act of writing gives her cramps and excruciating pain in her fingers, which forces her to take breaks every few sentences. She feels a horrific burning and bruised sensation on her pale, translucent skin when her clothes rub against it. She can barely stand, and sometimes, she can’t even walk up to the front door to open it.

She also suffers from constant excruciating migraines and the slightest noise is amplified in her ears. She tries her best to eat, but the constant feeling of nausea dissuades her. What she craves for sometimes, she can’t afford.

Rebecca sobs as she continues: “Do you know what it feels like to lose your life, but still exist? Because only people like me do. No one chooses to be sick; no one chooses all this.”

Meanwhile, she continues to experience the stigma attached to her invisible disabilities, with the potential judgment from the world around her and the unknown future she faces.

Facts & Figures

The term myalgic encephalomyelitis [ME] has been included in the International Classification of Diseases by the World Health Organisation since 1969. About 75 per cent of sufferers are housebound and cannot work, and of those, 25 per cent are bedridden.

Around 30 per cent of ME cases are progressive and degenerative, and sometimes, ME is fatal. The death rate for ME is roughly three per cent, caused by cardiac failure, brain death, tumours and liver failure. Sudden deaths can also follow exercise/ overexertion and can also occur after a long period of the slowly worsening illness. Many of these deaths are caused by mistreatment and could have been avoided if patients had been given basic appropriate medical care.

Hidden wars

Dr Amy ChircopDr Amy Chircop

Dr Amy Chircop offers a medical snapshot of the illnesses Rebecca and Antoinette face so bravely and with such determination.

Chronic pain is an invisible battle, which unfortunately, a lot of people of varying ages across different walks of life are struggling with on a daily basis.

The list of medical conditions that may contribute to this is never-ending, with three notorious players being fibromyalgia, ME and spinal stenosis.

Fibromyalgia is a syndrome consisting of widespread pain; extreme tiredness and fatigue; cognitive difficulties such as difficulty with concentrating and memorising things [commonly referred to as brain fog]; and persistent unrefreshing sleep.

All this is often accompanied with psychological symptoms, such as anxiety and depression. The functional impairment can range from mild limitation to inability to perform activities of daily living, such as bathing, cooking and mobilising. This stems from an altered pain-processing system of the brain, which often manifests itself in sufferers having lower thresholds to stimuli, especially pain.

Patients may be subjected to some investigations prior to a diagnosis of fibromyalgia being made. These are important since they help in ruling out other medical conditions, which may present similarly.

The notion that fibromyalgia is the go-to diagnosis when the physician is in a quandary over the complex symptoms being experienced by the patient is irresponsible and should be abolished. Fibromyalgia is a discrete illness and sufferers should be treated with the same dignity and respect as any other medical condition.

Management is truly multidisciplinary: it should encompass non-medical strategies, such as lifestyle changes, physical activity and psychological support, coupled with medical treatment, such as adequate analgesia.

ME, or as many may know it, chronic fatigue syndrome, is another complex condition affecting different systems in the body. It is important to note that it

is distinct from fibromyalgia and is characterised by profound fatigue present for at least six months, cognitive dysfunction, and a variety of other symptoms, such as headaches, muscle weakness, vision disturbances, numbness, and bladder and bowel dysfunction.

In some cases, symptoms can be so severe that patients end up being housebound, and in certain instances, bedbound. Characteristically, patients experience a marked deterioration of symptoms with physical or cognitive exertion, such as stress. It has been proffered that the cause of ME is the result of an abnormal immune system and brain function in response to an infection or virus, such as infectious mononucleosis, or as it is often referred to, “the kissing disease”.

As with fibromyalgia, there are no specific investigations to diagnose ME and diagnosis is mostly a clinical one.

In contrast to fibromyalgia and ME, the pain and symptoms experienced by patients with spinal stenosis are due to a structural abnormality of the backbone. In fact, spinal stenosis is a progressive narrowing of the spinal canal, which may be complicated with compression of nerve roots, leading to the symptoms experienced by Antoinette.

Spinal stenosis occurs mostly with degenerative changes as part of the normal ageing process. Patients who have a congenitally narrow spinal canal, meaning that it is present from birth, may be predisposed to experience symptoms earlier on in life, since the acquired changes in the spine throughout the years will add on to the already present narrowing, with greater risk of nerve compression.

The gold standard diagnosing investigation is an MRI, where the level and extent of narrowing can be objectively visualised.

Conservative strategies are initially adopted in the management of spinal stenosis, with great focus on rest, physiotherapy [especially strengthening exercises of the back muscles], and adequate analgesia and muscle relaxants. In severe cases, or when conservative management fails, a surgical intervention is required to relieve the nerve from the compression and prevent further damage.

Sufferers often face a silent battle when dealing with chronic pain. They fear shame, unfounded judgements and, many a time, a sheer lack of compassion and understanding. This should not be so. Patients should be inundated with support. They should be encouraged to confide in their family doctors and specialists. Support groups should be promoted and empowered to extend their reach because they are the best guiding lights.

No sufferer should face a battle alone. Fibromyalgia, ME and spinal stenosis patients and those suffering from chronic pain should not be any different.

This article first appeared in Pink magazine.

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