Latest news with #chronic illness
Daily Mail
21 hours ago
- Health
- Daily Mail
EXCLUSIVE A doctor laughed in my face when I said I felt like a ghost was touching my body - then a life-changing diagnosis explained everything
I'd always imagined that if I was told that I had a serious illness I'd feel shocked, scared and afraid. What I hadn't expected was that I'd also feel relieved. In 2001, I was spinning. I was about to turn 30 and had recently left a long, abusive relationship. I had a new job, had just moved home and my stress levels were rocketing. It was no wonder that I felt ill. It began with creeping fatigue that made my brain feel foggy, like I'd been day drinking and left me wanting to crawl into bed the moment I got back to my flat. I also felt queasy and dizzy at times. Then the ghostly symptoms started. I had a strange sensation like someone invisible was gripping my left arm and foot along with a tickling feeling on my nose and tongue. It was like a hand running down my face. Sometimes I'd jump because it felt like someone had thrown a tennis ball at my calf. I felt embarrassed describing this to anyone because it sounded so bizarre and like I needed an exorcism. The GP referred me to a neurologist who sent me for a load of tests, suggesting that we needed to make sure this wasn't multiple sclerosis, a chronic disease that affects the central nervous system. I was a nurse and the only people I'd met who had MS had advanced disease and were restricted in their mobility, often unable to get out of bed and needing care to go about their daily lives. The words 'multiple sclerosis' set off a reel of scary, negative images in my head and I felt totally panicked - but it was a huge relief when a letter came from the hospital saying that the MRI scan of my brain didn't show any of the scarring that you'd expect to see in MS. With time, the symptoms gradually resolved, but would come back if I was tired or under the weather. I'd tell myself to relax and try to ignore it, putting it all down to stress. I didn't know many nurses who weren't under pressure - it came with the job. Then in 2005, I woke up and staggered to the kitchen, noticing that I had almost no vision in my left eye. The hospital doctor was abrupt and didn't say much until he examined me. Then, he softened his tone and I guessed bad news was coming. He told me that my eye showed inflammation that is seen in people with MS but we needed another MRI scan to confirm this. Suddenly, it felt like I was back in the horror movie once again. On a subsequent appointment a more empathetic doctor took the time to reassure me and explained that MS is a complex spectrum illness that can present in many ways. Because of where I worked, I'd only met people with MS who were having more extreme problems and needed hospitalisation. My vision came back after a couple of months and I tried to push the thoughts of what might be wrong with me to the back of my mind. Bafflingly, the MRI came back negative and there was no explanation given of what caused me to go temporarily blind. I was relieved but puzzled. It took another 14 years before there was confirmation that I actually had MS. I started a strange merry-go-round of health and illness where I'd become more stable, feel almost normal and then the same weird symptoms would start again along with a few new ones. I ricocheted between neurologists, having a handful more MRI scans, saw my GP countless times and made a raft of excuses to myself about what was going on with me. Wanting to lie down in the aisle of the supermarket because I was so overwhelmingly tired? Isn't everyone exhausted these days? Numb patches on my body? I was imagining them and was hysterical so they were best ignored. Constant nausea? It was nerves - life is stressful after all. I decided that maybe I was just a hypochondriac with a vivid imagination - it was an argument that held up for many, as people lost patience with me at times. I'd cancel events because I needed to sleep (yet still woke up feeling exactly as tired), received strange looks if I mentioned any symptoms, and would pass off the occasional limp as 'just a thing I've always done.' My partner tried to understand but without a name for what was wrong with me it wasn't easy. A family member even said to my face that they thought the illness was all 'imaginary'. The health professionals weren't always much better. The neurologists would be interested in me when they examined me and heard my history - but as soon as the MRI scans showed no scarring they'd send a letter discharging me back to the care of the GP. One doctor even laughed in my face once and said that he thought they needed to name 'a special little syndrome' after me. That one smarted. I learned to keep quiet and fake wellness when I could. In 2020, I noticed that my left foot was numb and over a few days the reduced sensation crept up to my rib cage. At that point used to dismissing myself, I limped around for a week with a half numb left side, going to work in my job as a palliative care nurse specialist, passing it off as a sprain or back injury. But when I finally went to A and E and was scanned they found the scarring in my brain and spine that they'd looked for over the past almost two decades. The panic and fears for the future were the first emotions to rise to the surface - but I also realised that now I had a name for my illness, things might change. People would maybe stop judging me, labelling me as a hypochondriac and showing lack of empathy. It was a relief - and validating - to know that I had an illness with a name that people had heard of. I'm now on treatment (a monthly injection that won't change the existing scarring to my nervous system but is trying to prevent further damage) and had to give up my job as a nurse after thirty years; due to the fatigue, numbness and chronic pain. My specialist doctor thinks that it's likely that I had MS from the first attack nineteen years before but that the scars were small and because the scans were always done as non-urgent, months after the attacks, the swelling had gone down making them harder to see. I decided to channel my experience into something bigger, choosing to turn to something I'd always enjoyed - writing. As a fan of crime fiction specifically, it occurred to me to upend the classic psychological thriller story by creating a character with a neurological illness - who is driven to contemplating a crime. Like me, my main character is often disbelieved, devalued and tries to hide her illness. I've been staggered and heartened by the positive response the book has had from readers with chronic illnesses. I always joke that despite our symptoms, we can still participate in life on better days - and even commit ghastly crimes if we want to - but I'm not planning on this myself of course, nor advocating it for others. The diagnosis has also led to another new facet of my life - community. The other day, a friend who has a post-viral fatigue syndrome mentioned how much they were struggling with the hot weather. Heat often flares up chronic illness and I replied that my MS symptoms had too surfaced with the sunnier skies. She responded by devaluing herself and saying that MS is, of course, in a different league. I disagreed. Illness is illness, whether it has a name or not and suffering can be equal. There's no hierarchy just because of an illness name. Lots of people have a thing called functional neurological disorder where they have disabling symptoms that present like MS, epilepsy or Parkinson's disease yet never have any organic evidence of illness. It's not a choice, nor hypochondria nor hysteria. It's a recognised illness that should be treated with kindness. I don't feel bitter that it took so long to have a diagnosis and it wouldn't have changed the treatment I'd have had at the time. Treatments for MS have advanced considerably and continue to do so. However, what I do wish is that someone had taken the time to explain what might be wrong and that I hadn't felt so judged and alone. Maybe if I'd known I had MS for all that time I'd have worried more but equally, I'd have felt less like I was going mad. As it is, I'm managing to live with the ghosts with their strange grip on my limbs and their tennis ball throwing. I'm writing crime thrillers when I can do it around the crippling fatigue and trying to life the best life I can. Chris Bridge's latest book Sick To Death came out on 27 March. WHAT IS MULTIPLE SCLEROSIS? Multiple sclerosis (known as MS) is a condition in which the immune system attacks the body and causes nerve damage to the brain and spinal cord. It is an incurable, lifelong condition. Symptoms can be mild in some, and in others more extreme causing severe disability. MS affects 2.3 million people worldwide - including around one million in the US, and 100,000 in the UK. It is more than twice as common in women as it is in men. A person is usually diagnosed in their 20s and 30s. The condition is more commonly diagnosed in people of European ancestry. The cause isn't clear. There may be genes associated with it, but it is not directly hereditary. Smoking and low vitamin D levels are also linked to MS. Symptoms include fatigue, difficulty walking, vision problems, bladder problems, numbness or tingling, muscle stiffness and spasms, problems with balance and co-ordination, and problems with thinking, learning and planning. The majority of sufferers will have episodes of symptoms which go away and come back, while some have ones which get gradually worse over time. Symptoms can be managed with medication and therapy. The condition shortens the average life expectancy by around five to 10 years.
The Guardian
a day ago
- Health
- The Guardian
Cure by Katherine Brabon review – moments of grace in meditation on chronic illness
Katherine Brabon's fourth novel follows a mother and daughter with a shared experience of chronic illness who travel to Italy in search of a cure. It feels like a companion piece to her elegant previous novel Body Friend, about three women who seek out different ways of managing their chronic pain after surgery. Cure continues Brabon's metaphoric use of doubles, mirrors and reflections to explore the social dimensions of the body in pain. It opens in Lake Como, where, we are told, in autumn 'clouds devour the hills around the lake' and the water 'reflects the scene of disappearance. [It] cannot help but replicate the obscuring fog.' Vera has been here before; she is now taking her 16-year-old daughter, Thea, to a small town in Lombardy, where she herself travelled with her parents as a sick teen, to seek out an obscure man who promises to heal and cure people of their illnesses. Cure captures the painful intimacies between a mother and daughter: 'Vera has lived this, or a version of this, but she wants it to be different for her daughter,' Brabon writes. Vera and Thea are allied in their shared experience of chronic headaches, fatigue and joints stiffened with pain. Both have been subjected to the banal health advice of others – to take cold showers, hot baths, avoid coffee and consume tea. At the same time the pair are estranged – Thea wants to rebel against Vera's anxious and protective proscriptions; Vera favours curatives such as 'supplement powders, tablets, and tea' over the prescribed medications recommended by her doctor husband. Sign up for our rundown of must-reads, pop culture and tips for the weekend, every Saturday morning The gentle and unassuming narrative shifts between Vera's adolescent pilgrimage to Italy and her daughter's, and between sequences from Vera's early adulthood and scenes of the mother and child at home in Melbourne. Vera is taken to a thermal bath in regional Victoria by her parents, and spends hours connecting with other young women online. In Italy, Thea rests and walks to the lake, meeting a teenage boy called Santo. Writing in her journal, she reflects upon how her mother's journey maps neatly on to her own: the same age, the same bed, a shared illness, a shared purpose. To Vera, her daughter is a 'just a body': 'a mirror of her own body … she cannot see beyond the body, its destruction, its inheritance'. Thea and Vera's nights are long, edged with pain; the days are repetitious, spent managing that burden. Brabon is sensitive to how time can dissolve in these efforts of maintenance, bracketing the hours with temporary relief. Vera partakes in a fortnightly regime of subcutaneous injections, while Thea relies on painkillers to alleviate the 'fatigue and fever and aching eyelids'. As she swallows the tablets, she 'feels her mother come back to her'. In this cyclical experience of illness, Thea looks to Vera as a template of what will come. In Thea, Brabon draws a sensitive portrait of a girl adjusting to life in a body that will be constrained. Vera is a complex figure, anxious and tired, whose responsibility for her daughter both draws them together and drives them apart. They turn to writing as a means of communication and escape: Thea retreats into her journal, diarising her own adolescence and crafting stories about her mother; Vera appeals to online communities, where she can share her own experience anonymously. This secret retreat into fantasy is driven by necessity, for it is there that mother and daughter are free to imagine their lives with a supple and mysterious hope. Vera and Thea must live slowly, carefully, and the narrative reproduces this in its structure – to enervating effect. Between sequences of Vera and Thea in the past and present are italicised passages told from an estranged, omniscient perspective. The pair become 'mother and daughter', 'the woman' and 'the girl'. Thea's upset sleep and swollen knees, initially presented to the reader with first-hand intimacy, are reconsidered with toneless neutrality, a flat recital of events: 'The girl feels both happy and angry'; 'the girl walks to the lake'. In adopting this kind of glacial formalism, Brabon perhaps seeks to capture the effects of bodily estrangement with the sage reticence of a writer like Rachel Cusk, whose novel Parade is quoted in the epigraph. Instead, these italicised passages achieve something more dry, too narrow. The warmer haze of Brabon's other prose better captures the feelings of rupture and dissociation brought about by the sick body and by the family in conflict. Brabon's play with narration in Cure signals her subtle exploration of how stories of sickness can be confining, too definitive. Shifting our attention to the ill body beyond pathology, she re-engages with the relational and affective qualities of this experience, sketching a dim world, foggy with illusion and mythmaking. Narrative intensity is stripped back for something softer, more reflective. If the novel's carefully refined atmosphere is sometimes remote to a fault, it also contains arresting moments of grace, as Brabon meditates on the stories we tell about our bodies, wellness, healing and memory. Sign up to Saved for Later Catch up on the fun stuff with Guardian Australia's culture and lifestyle rundown of pop culture, trends and tips after newsletter promotion Cure by Katherine Brabon is out through Ultimo Press ($34.99)
The Guardian
3 days ago
- Health
- The Guardian
Cure by Katherine Brabon review – moments of grace in meditation on chronic illness
Katherine Brabon's fourth novel follows a mother and daughter with a shared experience of chronic illness who travel to Italy in search of a cure. It feels like a companion piece to her elegant previous novel Body Friend, about three women who seek out different ways of managing their chronic pain after surgery. Cure continues Brabon's metaphoric use of doubles, mirrors and reflections to explore the social dimensions of the body in pain. It opens in Lake Como, where, we are told, in autumn 'clouds devour the hills around the lake' and the water 'reflects the scene of disappearance. [It] cannot help but replicate the obscuring fog.' Vera has been here before; she is now taking her 16-year-old daughter, Thea, to a small town in Lombardy, where she herself travelled with her parents as a sick teen, to seek out an obscure man who promises to heal and cure people of their illnesses. Cure captures the painful intimacies between a mother and daughter: 'Vera has lived this, or a version of this, but she wants it to be different for her daughter,' Brabon writes. Vera and Thea are allied in their shared experience of chronic headaches, fatigue and joints stiffened with pain. Both have been subjected to the banal health advice of others – to take cold showers, hot baths, avoid coffee and consume tea. At the same time the pair are estranged – Thea wants to rebel against Vera's anxious and protective proscriptions; Vera favours curatives such as 'supplement powders, tablets, and tea' over the prescribed medications recommended by her doctor husband. Sign up for our rundown of must-reads, pop culture and tips for the weekend, every Saturday morning The gentle and unassuming narrative shifts between Vera's adolescent pilgrimage to Italy and her daughter's, and between sequences from Vera's early adulthood and scenes of the mother and child at home in Melbourne. Vera is taken to a thermal bath in regional Victoria by her parents, and spends hours connecting with other young women online. In Italy, Thea rests and walks to the lake, meeting a teenage boy called Santo. Writing in her journal, she reflects upon how her mother's journey maps neatly on to her own: the same age, the same bed, a shared illness, a shared purpose. To Vera, her daughter is a 'just a body': 'a mirror of her own body … she cannot see beyond the body, its destruction, its inheritance'. Thea and Vera's nights are long, edged with pain; the days are repetitious, spent managing that burden. Brabon is sensitive to how time can dissolve in these efforts of maintenance, bracketing the hours with temporary relief. Vera partakes in a fortnightly regime of subcutaneous injections, while Thea relies on painkillers to alleviate the 'fatigue and fever and aching eyelids'. As she swallows the tablets, she 'feels her mother come back to her'. In this cyclical experience of illness, Thea looks to Vera as a template of what will come. In Thea, Brabon draws a sensitive portrait of a girl adjusting to life in a body that will be constrained. Vera is a complex figure, anxious and tired, whose responsibility for her daughter both draws them together and drives them apart. They turn to writing as a means of communication and escape: Thea retreats into her journal, diarising her own adolescence and crafting stories about her mother; Vera appeals to online communities, where she can share her own experience anonymously. This secret retreat into fantasy is driven by necessity, for it is there that mother and daughter are free to imagine their lives with a supple and mysterious hope. Vera and Thea must live slowly, carefully, and the narrative reproduces this in its structure – to enervating effect. Between sequences of Vera and Thea in the past and present are italicised passages told from an estranged, omniscient perspective. The pair become 'mother and daughter', 'the woman' and 'the girl'. Thea's upset sleep and swollen knees, initially presented to the reader with first-hand intimacy, are reconsidered with toneless neutrality, a flat recital of events: 'The girl feels both happy and angry'; 'the girl walks to the lake'. In adopting this kind of glacial formalism, Brabon perhaps seeks to capture the effects of bodily estrangement with the sage reticence of a writer like Rachel Cusk, whose novel Parade is quoted in the epigraph. Instead, these italicised passages achieve something more dry, too narrow. The warmer haze of Brabon's other prose better captures the feelings of rupture and dissociation brought about by the sick body and by the family in conflict. Brabon's play with narration in Cure signals her subtle exploration of how stories of sickness can be confining, too definitive. Shifting our attention to the ill body beyond pathology, she re-engages with the relational and affective qualities of this experience, sketching a dim world, foggy with illusion and mythmaking. Narrative intensity is stripped back for something softer, more reflective. If the novel's carefully refined atmosphere is sometimes remote to a fault, it also contains arresting moments of grace, as Brabon meditates on the stories we tell about our bodies, wellness, healing and memory. Sign up to Saved for Later Catch up on the fun stuff with Guardian Australia's culture and lifestyle rundown of pop culture, trends and tips after newsletter promotion Cure by Katherine Brabon is out through Ultimo Press ($34.99)
Yahoo
6 days ago
- Health
- Yahoo
Retired police dog helping owner living with chronic illness
A retired police dog is helping its owner live with chronic illness. Donja, a seven-year-old German Shepherd, served with the Ministry of Defence Police for three-and-a-half years before being retired early due to spondylosis, a degenerative spinal condition. The former general-purpose police dog spent its career patrolling MoD sites including RAF Fairford in Gloucestershire, and also supported operations with Hampshire Constabulary and Thames Valley Police. PC Ash Collins, who worked alongside Donja, said: "Donja was intelligent, intuitive and demonstrated great problem-solving skills, and she was brilliant at tracking. "She was wonderful at her job and a fabulous partner to have." Read more Dogs Trust issues warning to dog owners about chocolate Meet the four-legged visitor bringing smiles to care home residents Woman leaves 20-year career in banking to launch premium cat sitting service Retired police dog Donja has been helping its owner Heidi Collins, living with a chronic illness. (Image: Thin Blue Paw Foundation) Since retirement, Donja - or Donna Kebab as her family affectionately call her - has lived with PC Collins and his wife Heidi at their home in Wiltshire, where she has become an unexpected source of comfort. Heidi Collins, 40, said: "Donna has been such a comfort and support while I've been struggling with my own chronic illness. Heidi lives with endometriosis, fibromyalgia and polycystic ovary syndrome. "I had to leave my job in veterinary medicine to work from home due to the decline in my physical health. "Donna always knows when I'm having a flare-up, sometimes even before I do. "She won't leave my side and insists on following me, keeping a close eye on me, and laying by my side when I'm feeling unwell." Donja was retired early due to a degenerative spinal condition. (Image: Thin Blue Paw Foundation) The Thin Blue Paw Foundation, a charity supporting retired police dogs, now helps cover the cost of Donja's medication and provides free food through a partnership with Barking Heads. Kieran Stanbridge, chairman of the Thin Blue Paw Foundation, said: "Donja spent years working hard as a police dog, supporting the Ministry of Defence. "But even in retirement she's continued to do so much, now for her owner, Heidi. "Their relationship shows how wonderful dogs can be for our mental and physical health. "And after everything Donja has done, it's only fair that she gets to enjoy her retirement pain-free. "We're proud that we can be there to help support her, so she can continue to support Heidi." Donja now enjoys long walks, playtime and plenty of rest, with a bed on every floor of the family's townhouse. Heidi said: "Even on my hardest days, I feel so lucky to have Donja with me."
