This month’s guest post is written by Alice. This week is carers awareness week, so it seemed only right to hand over to Alice. Alice is ten years old and lives with her mum Chantelle. She has been a young carer since the age of six, as Chantelle lives with ME/CFS, joint hypermobility and pernicious anaemia. You can find Chantelle on instagram.
A young carer is someone who helps someone else in their family, unpaid, when someone has any type of physical or mental illness, physical and/or mental disability or misuses substances such as alcohol or drugs. This could be a parent or a sibling. A young carer could help with household chores, help the family member with getting dressed or help lift or carry items. They can help out around the house but also help out when out, for example helping with shopping. I help by mum out by helping around the house by doing things like the washing up and vacuuming. I also help my mum out by making drinks or helping to get her medication.
The best part of being a young carer is knowing that I’m helping my mum out and that I’m making her life a bit easier. I am also part of a young carers group in Gloucester so I have made new friends. As well as this, I also go to a group where I am able to play games and do crafts. It’s nice to be around others who understand what it’s like being a young carers and having a relative who isn’t very well.
The worst part about being a young carer is when other people don’t understand what a young carers is when they don’t understand my mum’s illnesses. People don’t always understand when we can’t go out or do the same things as my friends.
Lockdown as a young carer has been up and down. I’ve got to spend more time with my mum and have enjoyed home schooling but we haven’t always been able to go out as my mum hasn’t been well enough and she can’t drive very far without getting very tired. We have enjoyed doing things at home though, like arts and crafts, puzzles and playing in the garden. When Mum has a rest I like to play with my Lego or teddies or draw pictures of monsters! I know how important it is to let mum rest so this is part of our afternoon routine.
My mum and I are a team and life as a young carer is just normal to us.
If you are a young carer, or know someone who is, and are in need of support, you can find information from Young Minds and The Carers Trust.
This month’s guest post is coming to you by Emma. Emma lives by the sea in the south of England, with her hamster, Manuka, and has a (verging on unhealthy) obsession with plants. She also has a diagnosis of OCD and has kindly offered to talk about how she has been coping with OCD during a global pandemic. You can find Emma on instagram or over on Youtube, where she talks about her love of plants, veganism, and wellbeing.
A note on OCD: OCD is often broken down into different subcategories, and occasionally abbreviated for ease. For example, Relationship OCD (ROCD), Harm OCD (HOCD) are two very common themes.
Hey there, my name is Emma! I have long been best friends with Laura, almost since primary school(!), I am 26 and have a long history of Obsessive-Compulsive Disorder (OCD), anxiety and depression. To give you a little background, my OCD comes and goes with periods of stress, hormonal changes and alcohol consumption. I am lucky in that I can have prolonged periods of complete relief from OCD, which is not the case for everyone. I also suffer almost exclusively from what is known as Pure-O OCD, where the person will have little to no visible compulsions (the name originates as it was once thought this was a purely obsessive disorder based around intrusive thoughts, when in reality the compulsions take place within the mind of the sufferer).
COVID-19 lockdown has presented many challenges to everyone, regardless of pre-existing mental health issues, but I think there is a particular challenge faced by OCD sufferers. To summarise in brief: the most clinically effective treatment for OCD is Exposure Response-Prevention (ERP) Therapy. With OCD, the more the person engages with their rituals, compulsions and obsessions, the more the brain begins to believe the fear and threat is rational and real. During ERP Therapy, the OCD sufferer is gradually exposed to their fear and must resist the compulsions they face, and sit with the anxiety of resisting those compulsions. While this ‘undoing’ process is traumatic, it’s an incredibly effective method of re-training the brain to understand there is no threat involved and there is no way to avoid the threat through compulsive behaviour. With this in mind, recovery for someone who suffers from a Contamination OCD theme would involve exposing themselves to the perceived contamination and not carrying out compulsions like washing hands, avoiding physical contact, cleaning beyond rational requirement, etc. However, exposing themselves to the object of the contamination fear (COVID-19/other contractable disease) and resisting these compulsions during the COVID-19 pandemic would actually go against the World Health Organisation, government and health authority advice. The fear of the OCD sufferer suddenly becomes a very real, very tangible threat, so it’s easy to see why OCD sufferers are being subjected to a particularly hard time at the moment.
As for my personal experience – I seem to be going through peaks and troughs of anxiety. When coronavirus first started hitting the news, it coincided with a small change in my antidepressants and I had several days of paranoia about my being contaminated with coronavirus and that I was going to be responsible for the death of all my loved ones. My compulsion was to confess to them all that I may have been exposed, and wash my hands (which, had I indulged it, would have lead to washing my arms, washing my body, washing my clothes and everything in my home). Thankfully after a few days, things settled down and I used many of my old coping strategies from therapy to get myself back on track.
Then, I met up with my mum, who is technically high risk, and had about two weeks of paranoia that she was going to die imminently and it would all be my fault, coupled with anxiety. My compulsions this time were ‘neutralising’ the thoughts with other thoughts, and confession.
Fast forward to lockdown being announced – I actually had much more apprehension about being alone for prolonged periods than anything else, as this is a known trigger for me. On the other hand though, I did feel more prepared for the fears presented by COVID-19 than most. My brain knows how to survive a barrage of negativity and fear narratives – it’s not a new scenario to me. Thankfully, I actually went for the first 7 weeks of lockdown without any major symptoms of OCD, despite some anxiety and low mood, mood swings etc. It took until the announcement of some lockdown measures being relaxed for me to start to feel OCD creeping back in. However, I was able to totally restrict my time spent around other people, my exposure, my safety etc. as I live alone. In OCD world that’s ideal! All our OCD brains really want is to control every perceived risk to the nth degree, with the belief that this will somehow keep ourselves and/or our loved ones safe. As the lockdown measures were relaxed, we had news that we could start to see one person at a social distance of 2 metres. I am blessed and so grateful to have people in my life who love me and want to see me, but following this announcement I had an influx of people wanting to meet up, which amounted to a very big change in a very tiny space of time. This sent my generalised anxiety a bit haywire for a few days. After a week, I met up with one of my closest friends for a socially distanced chat. The chat itself was really lovely, heartwarming and felt good to see one of my beloved humans again. However the next day, I had a panic attack following a run, and my brain became overwhelmed with every little thing that might have contaminated me by meeting with this friend, and how my contamination was going to end up killing my loved ones. It seems sort of funny in a way when reading my intrusive thoughts back, because they look so silly when not experienced as part of your threat-response. My contamination OCD thoughts have subsided somewhat since then, but it’s had the unfortunate effect of triggering an episode of ROCD, which I am currently trying to get a grip on.
So what is it like living with OCD during lockdown? For me, it’s not been an un-liveable hell, as I had slightly worried it might be. However it has certainly triggered a significant decline in my mental health, for which I am slightly reluctant to be going back to my therapist for help with. Reluctant only because we said our final goodbyes just 3 months ago (sod’s law!!). I am pretty lucky, as my fellow OCD sufferers go – I know a lot of people have suffered a very traumatic couple of months. There is reduced availability of therapists (although many are now thankfully doing remote sessions), and avoiding compulsions has become almost impossible where doing so would be against formal government advice.
From my perspective, the more people understand OCD the better the chance of OCD sufferers having a chance at recovery. The sad reality is most people still mistake OCD for a preference of tidiness and order, when the reality is very different. The one thing I would change? I would love it if people stopped using OCD as a criticism, or a self reflection of a tidiness or pernickety behaviour. There is a huge stigma around OCD and anything we can do to reduce that should be done. OCD should be referenced only when talking about the mental health issue, which is severe and debilitating for most.
Gastro what? That was my initial reaction to my doctor’s suggestion that a condition called gastroparesis may be causing my symptoms of nausea, reflux, stomach pain, bloating and vomiting. I had also lost a significant amount of weight taking me from a healthy BMI down to a BMI in the 13’s at my worst. Having been back and forth to the GP and gastroenterologist for over a year and a half I was desperate for an answer. Naively I thought an answer would mean a cure. That evening I took my prescription of domperidone home and opened up the NHS website, carefully typing in gastroparesis. As I read through the symptoms I ticked each one off, I didn’t know whether to celebrate or commiserate, here was my answer after all this time. But there is no cure.
Now, I’m no stranger to chronic illness, having already been diagnosed with M.E/CFS, endometriosis, IBS and POTS. But my gastroparesis diagnosis was the hardest to accept as it is such a change to everyday life. Gastroparesis translates to stomach paralysis, meaning the stomach does not contract properly to move food through into the small bowel: it is thought to be caused by damage to the vagus nerve, however gastroparesis is still a little understood condition. For some patients they are able to eat small, frequent amounts of easily digestible foods and manage their symptoms with no medication just dietary changes. For some patients they take medications called prokinetic medications which help encourage the stomach to contract and empty, so they are able to eat more normally again, many patients also take antiemetic medications to stop them feeling or being sick. Some patients manage on a purée diet, others a full liquid diet. For the more severely affected patients their nutrition will be artificial in the form of either oral nutrition supplements (ONS), tube feeds (enteral nutrition) or sterile liquid nutrition IV (parenteral nutrition).
On the 6th of March 2017 I finally had my gastric emptying study, I sat up in nuclear medicine eating my radioactive cottage pie, Sainsbury’s Basic, and stood in front of a scanner at regular intervals to see how much of the radioactive mash potato in my stomach. I felt like the test went on forever. For a few weeks before I hadn’t been allowed certain medications and on the morning of the study I wasn’t allowed anything to eat or drink, including my usual medication for my nausea. Consequently I spent the hours of the study feeling increasingly ill and was relieved when I was finally allowed to go, I didn’t even get my foot out of the door before taking my antiemetic tablet!
Just three days later, the 9th of March 2017, I was diagnosed with gastroparesis. I had been admitted to hospital to begin tube feedings after over a year of supplement drinks and ever decreasing weight and blood results. I initially started with a nasogastric (NG) tube, which slowly dripped a liquid feed into my stomach for 20 hours a day. After a few months it was apparent that the NG was not the right option for me, I wasn’t tolerating my feed and was therefore losing yet more weight. Next up was the nasojejunal (NJ) which was placed into the jejunum which is the second portion of the small intestine. My first one was placed as an outpatient procedure which unfortunately went a little off plan, somehow some bacteria got in with the tube and I ended up with a particularly nasty gastrointestinal infection which resulted in one home visit from an out of hours GP, two ambulances to A&E and another 10 day hospital admission. I left hospital half a stone lighter with an NG tube and a plan to retry the NJ tube in a few weeks as an inpatient for the sake of safety. Luckily the second time round everything went smoothly and after a number of weeks and a feed change I was finally feeling a little better! A few days short of a year after my first NG was placed my feeding tube was changed from the temporary NJ tube to a more permanent PEGJ (Percutaneous Endoscopic Gastrostomy with Jejunal extension), a feeding tube placed through the skin of your abdomen, through your abdominal wall and into your stomach with another thinner tube inside which travels down into the jejunum. This allows access to the jejunum for feeds and the stomach for venting gas and draining bile, acid and built up stomach contents.
At the time of starting tube feeding I was terrified, at the age of 25 I had spoken to my Mum about what I wanted my funeral to be like. I had lost my job from simply being too poorly to get out of bed and go to work most days, often having six weeks at a time off. But honestly, I’m so glad I consented to the tube feeds. Between the feeds and the right combination of medication I’ve got my life back. I once again have the energy to have days out (albeit in my wheelchair due to my other conditions), spend time with family and friends and have even met the most wonderful man who loves me despite my illnesses, wheelchair and feeding tubes both NJ and PEGJ. I’m also a hell of a lot stronger, I’ve met some lovely people I now consider good friends and appreciate life so much more. At the time of receiving my gastroparesis diagnosis I thought my life was ending. But really it was just starting again.
As part of HAN (Home Artificial Nutrition) Awareness Week and Gastroparesis Awareness Month, I thought I’d share my story. My name is Ellie and I’m eighteen years old.
Since the age of 13, chronic illness has played a massive part in my life. I am very new to the parenteral and enteral nutrition community, as I have only had a feeding tube since April this year.
My main conditions are Ehlers-Danlos Syndrome, which is a rare inherited condition that affects all the connective tissue in your body (including your digestive system). I also have severe M.E (Myalgic Encephalomyelitis) which is a very misunderstood neurological condition, that leads to debilitating fatigue, painful muscles/joints, gastric disturbances, poor memory and much more.
Artificial nutrition is a medical treatment which allows a person to receive nutrition (food) and hydration (fluids) when they are no longer able to take them by mouth. This might be through a feeding tube or intravenously fed into the heart. Some people use tubes as assistance while also taking food by mouth, whereas others are fed solely by their tubes.
Without the support of my feeding tube, I wouldn’t be alive. Like any other human being, I still crave food. The textures, temperatures and smells of food get the better of me and I still eat sometimes. Watching people eat around me so freely sometimes can be so hard. Most of the time I chew gum or eat a mint to settle the hunger.
I have had to fight my corner to get the nutrition I desperately needed. I was loosing weight very fast, because of the severe pain and nausea after eating and drinking. Doctor’s either believed it was an eating disorder or just acid-reflix. It took until I was very medically unstable to be admitted to the gastrointestinal ward for help. Although I now have a feeding tube, it doesn’t cure the problem that I have.
We still don’t know what is the reason for all my digestive symptoms and doctors refuse to investigate further, which means the feeding tube will probably be with me forever. I am currently fed into my stomach through a naso-gastric tube, which is still causing a lot of problems for me, even at a very slow rate of feeding (mls/per hour). NG-tube feeding is usually only a temporary solution, therefore I am booked in to have a jejunostomy feeding tube surgically placed straight into my jejunum. This is the middle segment of the small intestine. Most of the nutrients present in food or my special liquid feed are absorbed by the jejunum so the purpose of a stomach isn’t needed.
This hopefully will cause less symptoms meaning that I can start to gain weight and have a better quality of life. Having a feeding tube isn’t glamorous or a fashion accessory. It’s survival. Having a feeding tube stuck on your face 24/7 can be mentally very draining. I find it very hard to cope with sometimes and some people think i suffer with anorexia because of the stereotype of them. Even medical professionals have told me to seek counselling because of my eating problems.
My biggest bit of advice is to never let alone tell you something that isn’t true. Don’t think that just because doctors are medical professionals, that automatically means they are correct.
Currently, I have a sinusitis infection, because the tube has caused so much inflammation throughout my nasal passage. This is one of the many downsides to having a tube.
Despite the feeding tube, i am determined to not let that get in the way of me living life. I’m hoping that after having my jejunostomy surgery, I can attend rehabilitation to enable me to gain some independence back. Anyone who’s facing the prospect of a feeding tube or another form of nutrition needs to realise that it’s in their best interest.
Don’t feel like just because you can eat little bits that you aren’t worthy of needing one. I still snack on bits of food but I wouldn’t be able to sustain myself without the tube! Most importantly, don’t be frightened. I know it can feel very daunting as it’s life changing, but it’s nothing to worry about. The amount of support out there from other young people with feeding tubes is incredible. Even if locally, you don’t know anyone, there are always people to talk to and support groups! Some days will be the toughest day’s you’ll ever go through but in the end it’s so worth it.
On the 5th July 2018, the NHS will be turning seventy years old: that’s seventy years of providing lifesaving healthcare to a ever growing British population.
As someone with numerous chronic and long term illnesses, I am incredibly grateful for the NHS. I’m not sure where I would be without it – probably in spiralling debt. There are, undoubtedly, criticisms regarding the NHS, but this is not down to the 1.3 million people who work for it, more down to the current state of politics, but this is not the time to talk politics and policies. So many of the people who work for the NHS go unnoticed and unthanked. They work tirelessly to keep the British population healthy. Regardless of health or wealth, we can be reassured that if we fall ill or have an accident, we will receive the treatment that we need.
NHS staff see the best and worst of people. They welcome babies in the world, sharing the joy with new parents and they administer end of life care, ensuring that people die with dignity and that the families are supported, during a time of grief, upheaval and turmoil. They are often dealing with people who are going through trauma and they do their best to relieve some of the pain and anxiety, felt by those needing medical care, as well as the people around them.
Needing medical care isn’t an alien experience for me. In fact, it’s the opposite, thanks to the fact that I am diagnosed with various long term medical conditions. But although I’m more familiar with the inside of my local A&E department and other departments in near-by hospitals, compared to most people my age, the familiarity doesn’t change the fact that it is still a frightening experience. But I can honestly say that I remember every single nurse who has looked after me on those occasions and ensured that I felt as safe and as calm as possible. This is not an easy task when you are overworked, underpaid and often unappreciated.
I can remember the nurse who held my hand during a particularly bad night, during one hospital admission. I was crying in pain, with pain relief not even beginning to lessen it and this one particular nurse sat with me until I was calm and we talked about my life, hopes and ambitions and things that I enjoyed. She told me that she had moved to England from Brazil because she was so desperate to work for the NHS.
I can remember the nurses and occasional therapists who went out of their way to ensure that I was at ease prior to me having surgery at the age of eight. They made me laugh and brought Guinea pigs into my room, as part of animal therapy. They also reassured me post-surgery when I was afraid and wanted my mum.
I can remember the health care assistant who apologised repeatedly when she had to cut me out of a Crew Clothing jumper, when I was on a spinal board, and then suggested that I wore cheaper clothes next time I ended up on a spinal board with a suspected fractured neck and bad concussion. Thankfully there hasn’t been a “next time” but the joking eased the fear.
It’s not just nurses who make the NHS as good as it is. There are so many people who do their job every single day and remain pretty much unnoticed. There are the porters walking miles every single day, making sure patients are where they need to be; from experience porters are some of the kindest and funniest people I’ve ever met. True NHS heroes.
I can’t write about the NHS without mentioning GPs, in particular, my own very wonderful GP. My GP has been my biggest supporter for over ten years. She has fought a near-constant battle for me to receive the correct treatment for my various conditions and has never once given up on me, even when I have very much given up on myself. When you are diagnosed with a rare condition, one of the biggest hurdles faced is the lack of understanding from medical professionals. Yet my GP knows my body as well as I do and has gone out of her way to research and find out more about my conditions, so that she is able to treat me in the best possible way.
So, I’d like to take this opportunity to take everyone who works for the NHS. Thank you for caring.
This post has been written in conjunction with Scope and will be appearing on their website.
This month’s guest post is written by Nattie. Nattie lives in the Midlands with her husband and two children, Grace and Amelie and her family is the perfect example of the wonder of blended families. Nattie works in with a PR company, specialising in event management. Life for Nattie’s family was turned upside down a few months ago, following Gracie being diagnosed with leukaemia.
What can I say about Gracie? She’s 10 years old, absolutely gorgeous, funny, kind, intelligent, an animal lover, a fantastic big sister and a lover of hugs and cuddles. Gracie is also a cancer patient.
Earlier this year, Grace was diagnosed with leukaemia. She had been poorly off and on since the winter and we, along with doctors, thought that it was a lingering viral infection. She was very tired, often coming home from school and falling asleep on the sofa until tea time. On top of this, she was also having a difficult time at school with friendships and she is starting to get anxious about moving to high school in September 2019. Nothing major but Gracie is sensitive and we know from past experiences that she doesn’t deal well with conflict or change, it emotionally drains her.
We were’t too worried. That is until her energy levels dropped further. Her teacher rang us to raise concerns: Grace was falling asleep in school and she wasn’t managing to take part in PE lessons, a lesson that she loved. In general, she was very wobbly and her balance was getting worse. She was sad, something very unlike Grace.
When Grace contracted her fifth cold since January, we felt that enough was enough: our previously healthy little girl was struggling and our instincts knew that something else was going on. We decided to keep her off school for a week. On day three of Grace’s week off school, she had a nose bleed, which would not stop. After the 15 minute marker, I ended up calling paramedics. Gracie was dizzy and faint and as the nose bleed continued, the colour was literally draining out of her. Deep down, I think I knew that I wasn’t calling paramedics just for a nose bleed, there was something bigger going on here.
This view was echoed by the paramedics, who told me, very kindly, that they felt that Grace needed to be in hospital now. Upon arriving, Grace had numerous blood tests and her obs and sats caused the doctors some concern.
After what can only be described as the longest wait I’ve ever endured, a paediatrition told me that I might want to consider calling my husband. I explained that he was due to pick up my younger daughter from school but would be here later. My world shattered a bit when I was told that David needed to be here now. Gracie was also asking for her daddy, in between sleeping and being confused. I rang David and told him to get to the hospital right now and then called on my fantastic friend, Essie, to ask her to collect Amelie from school and look after her until I knew more.
David arrived at the hospital and we were taken into a private room. This was the point where we were told that our beautiful little girl had cancer.
The prognosis was “good” we were told. If a child is going to get cancer, the cancer that Grace was suspected of having was the most easily treated, with high chances of going into remission.
In the space of a day, our lives went from talking about phonics and the girls’ homework, arguing over who was going to clean the guinea pig’s cages, telling the girls to eat their carrots, CBBC programmes and ballet classes to talking about chemotherapy, Hickman lines, Picc lines, steroids, bone marrow, blood transfusions and side effects.
Grace was very muddled when we told her. She understood that she was extremely poorly and would need to stay in hospital to get better. The extreme nature of her treatment plan was lost on her and we made the choice to only tell her what was completely necessary. She asked if her hair would fall out and we told her that it probably would. Grace new about the Little Princess Trust, thanks to Laura cutting her long locks a few years ago and she decided that she wanted to shave her hair ASAP and donate it. Her next question broke us, she asked in a tiny voice if she was going to die.
A ten year old child should not be having to think about their own mortality. David and I explained that all of the doctors and nurses were going to do everything possible to make her better and all she had to think about was fighting as hard as she could.
In the weeks since Grace’s diagnosis, she has had six blood transfusions and two platelet transfusions. She’s had three lots of bone marrow taken, four general anaesthetics, one of which was to place a line into her chest. She’s had more blood tests than I can count. She’s had different sorts of chemo, including having it injected into her spine, which made her very unwell. She’s been on steroids and is on a cocktail of medicines to try and fight this beast. She’s spent time in ICU with suspected sepsis and has been so so sick. She has spent most of her time in hospital, only having half days at home here and there.
Side effects have included sickness and fevers. Her month and throat have been covered in large ulcers, making eating almost impossible. Grace has had headaches which have made her scream with pain. The combination of treatment and being bed bound has caused serious muscle wastage so now our once energetic and sporty little girl is confined to a wheelchair, on the rare occasions when she manages to get out of bed. The steroids made her angry and emotional, on top of making her sleep deprived and exhausted.
Then there was the hair loss. Nothing prepared us for that, even though we knew it would happen and had talked about it. Grace dealt with it better than us, simply rolling up the hair which had come out during the night and then saying “I think we should shave it because I don’t need my hair right now.” So that’s what we did. Grace has been rocking hats since then.
Amelie is struggling. At the age of seven, it’s a huge change to get used to and due to infection risk, she’s only been able to see Grace a handful of times. Our friends and family have been taking turns to move into the house, to look after Ame, to try and maintain some normality.
Ame and Grace’s school have been wonderful, fundraising to help us out as a family. Grace’s class write a letter to Grace every week to talk about what they’ve been doing. Even though she’s not at school at the moment, they still want her to feel included. Ame’s teacher, along with teaching assistants are giving her 1-2-1 time every day, to give her the time and space to talk. The nurses at the children’s hospital, where Grace is being treated, are also helping us to support Amelie and are helping her to understand what is happening to her big sister.
I’ll be honest, my reason for writing this is to ask for help. If you can give blood, please give blood. It takes less than an hour and will literally save a life. Prior to Grace becoming ill, I hadn’t ever stopped and considered how important blood donation is. The simple fact is, Grace would not be alive right now if it wasn’t for the wonderful people how have already donated blood and I wish that I could thank every one in person for saving my little girl’s life.
As a family, we are scared right now. It physically hurts seeing Grace so unwell and it hurts seeing Amelie so sad and confused about what’s happening to her sister. Forcing your child to go through procedures which you know are going to cause pain goes against everything you believe in, as a mother. But the alternative is so much worse. I hate seeing Grace in pain and scared. I hate hearing her cries but I hope that one day, she will understand that it was all necessary to make her better. We know that we have a long journey ahead of us but our unconventional little family will only get stronger during this fight. We are Gracie’s Gladiators and we will not give up the fight.
This month’s guest post is written by Nikki. Nikki is 60% deaf and relies on hearing aids and lip reading, she’s also uses sign language and her skills helped me through a sign language module at university! I’ll be honest, the majority of the time I forget that Nikki is deaf but she has taught me vast amounts about communication and what it’s like being part of the deaf community. You can follow Nikki on Instagram @knickers92.
My name is Nikki or as Laura calls me the “Little Irish One”. I’m 25 years young and live in little Northern Ireland. This guest blog post is about growing up deaf in the world of hearing. I was the tiny age of two when my family were told that I had glue ear. For those who don’t know what glue ear is: it is where air cannot enter the middle ear. When this happens, the cells lining the middle ear begin to produce fluid. This is a runny liquid which can get thicker as it fills the middle ear making it difficult for sound to pass through the inner ear (National Deaf Children’s Society website).
From then on, I was getting ear infections and had many issues with my ears. I was in and out of hospital due to numerous appointments and surgery on my ears. They kept putting grommets in my ears to help with the fluid but unfortunately they kept falling out into my hair. They were only noticeable when my hair got brushed, and we realised that they had came out. In the space of six months, I received three sets of these but they didn’t do anything except making my ears worse so we gave up.
When I was eight, I kept coming home exhausted from school and all I wanted to do was sleep. I had no energy for anything. This only kept getting worse and we could not understand why. At the age of ten, I went into hospital for a skin graph to take place on my right ear drum,due to the fact that I had a hole the size of a malteser, on the skin of my ear drum. This involved cutting the back of my ear open. So you can only imagine my face when I was told that part of my hair would have to be shaved off to allow for access in the operation: no ten year old wants that to happen! This took place during my final year of primary school meaning that I missed three months of school, to allow me to recover from it.
I was told the operation can work for a long or a short period of time. My main worry about getting my surgery was that I couldn’t fly for three months afterwards and I was due to go on a big trip with my school to Amsterdam during that period of time. Thankfully it worked out that I was allowed to fly again, literally the day before I was travelling. I had been looking forward to this trip for a whole year.
After the school trip, I had finally moved to secondary school. I was nervous as I was moving away from all my primary school friends to a new school, where I knew no one else. I settled in well within my first day and had a lovely class. I was still getting exhausted after school and didn’t have energy for any homework. I went through my first two years of secondary school wondering why I was starting to struggle to hear the teachers even though I was sitting at the front in all my classes. I was missing the instructions and asking my friends what we had to do or copying from their books.
When I went into year 10 (England’s year 9) I was preparing myself to do exams to proceed into a grammar school. I was still only 13 and in March 2006, I had an appointment with the hospital to test my hearing whilst going through important exams to determine my new school. I was finally told I needed to wear hearing aids as my hearing wasn’t at a level whereby I could manage without them. We then realised this is why I was so tired all the time: I was relying on lip-reading to understand what was going on in conversations. Meanwhile I was a teenager, who within the previous four months, had been given braces and told I had to wear glasses. The hearing aids made me realise just how much sound I was missing out on but being a stubborn teenager, I refused to wear them and was embarrassed that I had them. I kept going through life missing information given out, during my GCSE years I was relying on friends to copy work from. I didn’t have any deaf friends or know of anyone my age that was deaf. I received no help from my school whatsoever throughout the four years of attending it.
I had just finished my GCSE exams when my social worker was trying to get me to join a charity where deaf teenagers got together and took part in loads of activities whilst socialising with one another. I kept saying no as I wasn’t interested in doing so. No one knew I had hearing aids, apart from my family, as I was able to hide it with having developed my speech before I lost my hearing and relying lip-reading all the time when socialising. I finally gave in when an interesting event came up which involved working with the BBC to make a movie with them. I had always loved acting and thought it would be a good opportunity.
When the week came I was nervous about meeting other deaf teenagers as I had never met another young deaf person prior to this. I was worried about communicating with others as I didn’t have much sign language knowledge and didn’t know how many signed or used speech. I kept thinking “how am I going to communicate with only knowing the alphabet and spell my name?” When I arrived everyone was so friendly and made me feel welcome. At this point, I was still refusing to wear my hearing aids even though I carried them with me. I made friends very quickly and realised how normal being deaf was to them. I learnt so much sign language that week, meaning that I could have a small conversation asking how are you as wellas learning random signs.
I kept in contact with everyone I met and they helped me, along with NDCS, to come to terms with my deafness. I returned to school, slowly wearing my hearing aids more and more. I always wore my hair down so no one asked me any questions about them. By this point, I was now in 6th form and we had to take up an enrichment period each week as an extra lesson to our studies. None of them appealed to me so I decided to ask the vice principle if we could offer sign language as part of our enrichment choices. Thankfully it was a popular request and the vice principle allowed us to go ahead with it and found someone to come and teach it. It has now been going for 10 years and getting more popular every year.
My confidence started to build and I kept attending NDCS events and meeting up with my deaf friends when we were free. I had a part time job working in a cafe and I had a badge for people to know I used lip-reading as communication.
The time came to move for university and I decided to attend York St John University. I couldn’t believe my luck when I was given so much help to make university easier and get everything out of my education. I was so lucky to have been given the best notetaker ever, Lyndsey, and to this day we are still great friends (sharing the love of disney). I was nervous about having a notetaker as I didn’t want them to make me stand out on my first day or have to explain why I had one. Thankfully Lyndsey was close to my age and I was so happy to have made a friend and the nerves of walking into lectures were made a bit easier.
Moving away from home I was not nervous about because I had met my house mates on a group chat before moving. We got to talk a lot before the big day of moving in came. I don’t think I could’ve asked for a better housemate than Laura. She understood my deafness and if any fire alarms went off she came to my room, making sure that I got out safe. We had the best three years of university looking after each other even when we had new houses and different housemates. We are now reaching the seventh year of friendship so she is stuck with me forever!
I was so lucky with the friends I made in university as we all looked after each other and still chat even though an ocean is between us. It never got old having to ask lecturers to ensure that subtitles were on during film or television screenings: we were like a big choir in the back shouting at them.
My course was Film & TV and in my second year I wanted to make a documentary about living as a deaf person in a world of hearing. I got talking to my group that I was in and they were interesting in helping me make it. Then, I spoke to another deaf student, who agreed to be the face of my documentary. It was to prove the stereotype wrong that people had about being deaf.
It took a lot of hard work and I was able to put my sign language to the test. I entered my film into a film festival, held in York and it got through to the 3rd round – I was happy that it got so far!
I am now living life with a degree and have brought sign language into my old college. I have lived independently, with friends in different country and I am now working as a Classroom Assistant helping other students. I love to travel but I have to keep flying time to a minimum of 3 hours to protect my ears. My hearing has, thankfully, not got any worse but it is sitting at 60% loss in each ear. I still worry about not hearing noises at night so like having company, so I know if anything was to happen, I can be woken up. I have been diagnosed with vertigo meaning I can get dizzy and light headed very quickly. I have major balance issues, I always joke about having a daily trip even if it is over air. I still struggle constantly with ear infections making it hard to wear hearing aids and unfortunately I keep getting allergic reactions to my hearing aid moulds. I have been waiting after a year and a half, with a lot of fighting, to try new moulds to see if they help. I am already on anti-hypoallergenic hearing aids so I’m hoping that I can get sorted soon to ease infections and irritation to my ears.
There are still barriers between the deaf and hearing worlds but we are determined to break them down bit by bit. My biggest tip, when talking to deaf people is if they ask you to repeat something just do it instead of saying that it doesn’t matter. It can make us very angry!
The grief cycle, following the death of a loved one is something that we are probably all familiar with. When the chronic illness diagnoses started rolling in and in the years running up to diagnosis, my life changed drastically. As a teenager, I was dancing (ballet and Irish dancing), playing netball and hockey, trampolining and either cycling or walking two miles, to and from school every day. On the surface, I appeared fit and healthy, but was constantly being labeled as clumsy, thanks to a catalogue of weird injuries, resulting in me annoying the school matron and many many trips to minor injuries and the emergency department.
As I progressed through secondary school, I was displaying more and more symptoms of Ehlers-Danlos Syndrome, but because no one was looking for it, I remained undiagnosed until the age of 22.
By the time I reached my GCSE years, I was fighting kidney, throat and ear infections more often than I wasn’t fighting them, I had periods of extended and unexplained dizziness and my joints (in particular my fingers and right knee) started to do their own things, with frequent dislocations and constant pain. Things went downhill further when I was in 6th form, I’ve genuinely “lost” about six months of my life, at the age of 18, because I was in so much pain and the combination of all the medication I was in and battling through A Levels, despite being told to take a year out. I can’t remember taking my final A Level exams, which isn’t a bad thing to be honest but I’ve lost other memories which would have been nice to have.
So because of all of this, getting a diagnosis of EDS and fibromyalgia at the age of 22 should have been a relief. In part it was, I finally had reasons as to why I felt so rubbish at times. I wasn’t imagining my joints popping in and out, it was actually happening. I wasn’t being pathetic when I was ill, I have a weak immune system. The pain wasn’t in my head, it was real. But at the same time as the rush of relief, being told that I have life-long illnesses which are probably going to get worse felt like a door being shut and locked on my past life.
I hadn’t ever considered the fact that I was going through a grieving process for my healthier teenage years. It wasn’t until my physiotherapist pointed out that I was going through a big adjustment in how I lived my life and that I needed to take time to come to terms with that and grieve. I struggled to get my head around that initially, I wasn’t dead and I wasn’t dying but I wasn’t going to get better.
Personally, I haven’t found the grieving process for my old life linear. Some days I can be rational and logical about things, other days I can sit and cry and mourn, although the latter is becoming rarer.
I still struggle with the concept that I am not the same as my friends. Because of this, I can be reckless and not look after my body, which results in me ending up bed bound to recover. Sometimes, I can’t make sense of what is happening. I try not to go down the “why me?” route, but being the only person in my family with EDS is hard to get my head around. At times, I have pretended that I’m not ill and if I’m honest, that doesn’t tend to end very well. Sometimes I am numb to all feelings surrounding chronic illness, I like to think that it isn’t there. There are days when this thought process makes life possible: it allows me to get from one day to the next with as little fall-out as possible. Denial isn’t always healthy, but I see it as a basic survival method.
I’m not an angry person. It takes a lot for me to feel anger about a situation, partly because I don’t like the sensation of being angry. But, there are times when I could happily go on a rampage, screaming and swearing about how unjust everything is. Again, this links to the “why me?” thought process, something that can’t ever be answered. A sure-fire way of anger surfacing is when someone makes uneducated and insulting comments about illness. You think that I’m lucky having afternoon naps or needing to spend the day in bed? It is natural to feel deserted and abandoned- the majority of the time, we live in a society that fears anger. Anger is strength and it can be an anchor, giving temporary structure to the nothingness of loss or overwhelming change.
Before being diagnosed, I found myself bargaining with myself, as a way of preventing the earth-shattering news of a label. I was in a very conflicted place, both wanting a diagnosis and fearing it. If I looked after my body better, it would stop me from being unwell: I would swim every day, eat clean, take all the supplements and actually listen to what my body was telling me. I wanted to go back in time and not dance as much or do sports which put unnecessary strain on my body. Finding fault in my actions and choices as a child and teenager were not the reasons that I developed EDS, I can thank gene mutation for that. Maybe things would have been different if I didn’t do ballet or Irish dance, or tap and modern dance as a child, then possibly my joints wouldn’t suffer so much as I got older. But I enjoyed dance so I try not to view it as something that I regret.
The depressive stage feels as though it will last forever and I think that at the moment, this is the stage that I keep revisiting. It’s important to understand that the depression around diagnosis is not a sign of mental illness. It is the appropriate response to a great loss or change and that does not make it any less valid. I’ve found myself withdrawing from life, left in a pit of intense sadness. I’m not dead or dying but a chronic illness can, at times, feel like a life sentence. The uncertainty is scary, I can’t predict from what day to the next how my body is going to feel or how much pain I might be in. It’s hard trying to make plans and then needing to cancel because I’m too unwell. I’m not a flake but sometimes it looks like that, more so because I don’t look sick, so there isn’t any obvious evidence to me feeling horrendous. It takes a very understanding family and friendship group to pull you through the depression.
Acceptance is often confused with the notion of being “fine” or “okay” with what has happened and the new diagnosis. This is not the case. I don’t think that I’ll ever feel fully okay about chronic illnesses. I don’t like my new reality but I’m learning to accept it. I’m learning how to make acceptance easier: having friends who are going through similar helps so much. They understand on a level that no one else does. I’m also learning that not everyone will get it and that’s more of a reflection on them than it is on me. When possible, instead of denying my feelings, I listen to my needs and I change and adapt my lifestyle. I am able to start living as well, with a different set of goals and dreams.
I am not the healthy person that I was ten years old, but slowly, I am adapting to that.
Starting a new monthly feature of guest posts, I’m handing this post over to one of my favourite humans, Megan. You can follow Megan on Instagram @megans_healthjourney.
I’m not exactly sure where to start this but I guess I should start by introducing myself. I am Megan, a girl in her twenties, who has more pyjamas and dressing gowns than clothes, as well as a slightly unhealthy addiction to handbags. Which I guess could (possibly) be considered an economical purchase as a handbag will always fit me regardless of whether I’m in a flare or on the dreaded steroids. Well at least that’s how I justify the occasional one when I’m going through really rough patches health wise. Something I also collect, without any choice in the matter I may add, is chronic illnesses, because I mean why have just the one when you can have several? Hey, life would be too simple! For this blog post, however I am only going to focus on one of those illnesses and that illness is Crohn’s Disease.
My official diagnose of Crohn’s disease was on September 18th 2014, a day that unfortunately I will never forget. But whilst I left that consultation room speechless and in a daze, it finally gave me answers I had been looking for to explain how I was feeling. I had been getting symptoms for more than a year or two before hand with fevers, severe vitamin deficiencies, frequent toilet use, overwhelming fatigue etc but things got much worse in December 2013 leading to various hospital admissions to bring in the new year in 2014. I saw various doctors during my early admissions, but they couldn’t figure out what was the cause of my symptoms and I was left being promised gastroenterology input and medical investigations, but nothing materialised. In fact the referral didn’t even appear to have been made. At the same time as the roller-coaster with my health, I was in the final year of my psychology degree, which in itself was a very stressful period and I ended missing some of my final year exams as I was hooked up to drips and IV antibiotics. I had barely been making it to lectures even though I was only due in twice a week, but the more people told me to postpone my course, the more I wanted to defy them and prove that I could do it and that my body no matter how hard it may try- would not beat me.
It got to a point in May that year, however, when I was verging on a breakdown and I could barely move from my bed or the couch and had a fair bit of lost weight on top of feeling so weak. I truly didn’t think I could go on much longer. I phoned up the hospital and said to them that I physically couldn’t wait any longer, and if I didn’t see a doctor within the next few days, and doctor was someone who would actually listen and follow through on their actions for once, then I felt I truly might die. I had no fight left so this felt like my last option. Fortunately, the week after, 6 months from the initial admission, I met my gastroenterologist and I felt for the first time maybe I was finally on the road to some answers. After various invasive tests, including endoscopy, capsule endoscopy and colonoscopy, she told me I had Crohn’s disease- a type of Inflammatory Bowel Disease. Although I knew in myself there was something wrong I couldn’t and still can’t quite believe I finally had an answer.
So, what is Crohn’s disease? It is a long -term condition that causes inflammation anywhere in the digestive system from the mouth to the back passage. It is so much more than a ‘toilet issue’, although that is a big part of the condition: sufferers can have anaemia, joint problems, fevers, a lowered immune system, depression as well as lots of other symptoms. I am grateful to have my diagnosis in the sense that I know what is wrong however knowing hasn’t meant that my journey is over- rather it has just been the beginning. I have had countless flare ups, some requiring hospital admission, as well as sepsis which is likely to be a result of the immunosuppressants I am on to try and control my Crohn’s disease.
Ultimately, I have and still do often feel very alone and ‘labelled’ with my conditions and though it’s easier to say, ‘you’re fine’ then say how you’re truly feeling? How can you really explain it to someone when on the surface you do look fine. But becoming chronically ill has also allowed me to make lifelong friends and for that I am truly grateful as the obstacles would be even harder to try and face alone. Finding out you have any condition at all gives you a new dimension to your identity, it’s made me change my life completely. I’ve learnt who and what really matters and just how precious health is. If I could end with one ‘spoonie tip’ it would be to always listen to your body and fight to be heard as no one knows your body better than you. So, if you instinctively feel something is not right and you are met with resistance by the professionals you initially meet, it doesn’t mean your problems don’t exist.
Don’t give up fighting because you’re worth it and there will be other professionals who are willing listen and help.
If you would like more information about Crohn’s Disease or IBD you click here and there’s lots more information over on Crohn’s and Colitis UK. Hannah Witton vlogs about life with IBD, having recently had major surgery, resulting in a stoma.