Before the tube I was a frequent hair dyer, there was very few colours I hadn’t had at some point. But then the tube came and I stopped dying my hair and then i rarely put make up on. I mean whats the point of changing out of your pjs when there is nowhere to go. To many people there doesn’t seem anything wrong with that, I mean I’m ill aren’t I?
No to me this was neglect, maybe not serious neglect but neglect all the same. The simplest things can make you feel just that bit better and normal. Brushing your hair, using a pair of straighteners [this is a must for my hair], washing your face with a million and one products and then putting some make up on. Finally getting changed into some real people clothes instead of PJ’s. Sadly I’ve been sinking back to the place I was in November when said tube was fitted. Spending all day in bed, not getting dressed or brushing my hair and not getting out of the house. My depression has got worse but that’s just one vicious cycle: you get ill, you stay home in bed, you feel sad, you don’t see anyone, you stay in bed…..over and over again. Prozac seems to be the answer according to the docs I’ve had it upped a few times now and I find it does help. What is even more helpful is a demanding mum and dad along with a supportive boyfriend and group of friends. These guys just won’t let me fail, stop going or give up…it’s just not an option…apparently! Now as for hair dying and pampering myself. I am sat writing this covered in brown henna from Lush. It’s all natural and wont harm me if it gets near the tube or the picc line hence why I have put it on my head! This is part of me getting my sh*t together, I’ve decided I just need to start getting on when I can! But no mater how I feel I need to spend a little more time on myself cause no one wants to be near an unwashed, crazy haired recluse now do they? x
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My feeding tube has been the best and worst thing to happen to me in the last 6 months. I mean I hate it but then I really do love it.
Yesterday for example I hated it again, I was changing the balloon water and the balloon came out and the wide balloon part got stuck in the small hole Just imagine giving birth, not to a baby but to a tube in your stomach! Luckily I had a pair of amazing paramedics who broke the rules and took me to my specialist hospital even though my local is nearer! These are the real gems of the NHS, prepared to get shouted at for giving their patient better care! Anyway my feeding tube.. It’s a GJ tube which goes through my stomach and through into my Jejunum. I take feed, water and medication through the Jej tube and then I drain my stomach 24/7 through the gastric tube. It’s been amazing in regards to me gaining weight and being nutritionally complete for the first time in my life. I now aspirate very little and I don’t vomit, just drain! But then there is the bad side to the tube…I had just begun to start to like my body and was finally gaining a bit of self-esteem. Then the tube was fitted. For me it took me right back to square minus 1 and I felt like it was no longer my body, it was the tubes body. My boyfriend has been the most amazing support though! He has constantly reminded me that I am still ‘beautiful’ and perfect to him. He assures me that he really doesn’t care which is so lovely! Once you learn to live with the tube it becomes second nature! I have created a massive supply of towels, mattress protectors, sheets and clothes! These things are needed but no doctor will tell you that, your just expected to know Now you’re probably thinking why the need for all these things? Well you will leak, failing that the feed pump will leak or you will spray drugs over yourself. You suddenly start producing many varieties of inconvenient fluids and they all get produced at the most awkward of times! Like when you are in the middle of town with only one t-shirt, that’s the perfect time to cover yourself in stomach acid! [Thanks tummy] So yes the tube can be painful, irritating, annoying and time-consuming however it also giving me a new chance at life. I am a healthy weight, I’m no longer vomiting and I’m getting all the nutrients I need. This tube is keeping me alive and giving me the chance to follow my dreams, so it’s not all bad……………… Unfortunately from the age of 16 I stopped being so stable health wise. My body saw I was getting ready for GCSE’s and said “Look what I can do!” My lungs and stomach decided they could both malfunction at the same time, helpful I know! I was suffering bad asthma, GORD and recurrent chest infections. Gastro-oesophageal reflux disease [GORD] for me was and still is the biggest issue for me. Due to my TOF/OA I didn’t develop any peristaltic muscles in my oesophagus and the muscle that holds my stomach shut was rubbish. This meant anything that goes down can come back up just as easily! This is bad news for my lungs as when asleep I would aspirate on stomach content. This meant that stomach acid would come up and go down my trachea into the lungs. This then leads to a chest infection after chest infection. GORD also left me with a very damaged oesophagus as the base of it had been doused with a lot of acid. I was given enough reflux meds to neutralise a whole sea of acid! My unique set up however was still refluxing and it was still acidic!! At 18 I was left with the option of yet another operation to wrap some of my stomach around the base of my stomach. This procedure is called a Nissens Fundoplication and is one of the last resorts for reflux. Once I’d had the operation my reflux pretty much stopped, result! The good feeling didn’t last too long though as I experienced nerve damage. This meant every time I ate or drank I would be in severe pain which at points required morphine. The operation had to be reversed 6 months later. Almost as soon as the operation was reversed the reflux returned and if anything it was worse. After 3 months I had dropped to 47/48kg and was really unwell. I was suffering more chest infections and severe sickness caused by reflux. November 2015 came the biggest change of my life. I was so underweight, unable to keep food down and suffering. My only option was to be nil by mouth and the insertion of a feeding tube. I was fitted with a GJ tube which meant I could drain my stomach of acid and feed straight into my small intestines. At the time you may as well have offered me a death sentence. Nil by mouth with a tube at 18 wasn’t where I thought I would be. You’d think after 19 nearly 20 years of chronic illness you would be sort of use to it. I can tell you now you never get use to it. You just live with it.
“I’m fine” a phrase that is repeated in my head over and over in the belief if i say enough times it will suddenly become reality. The problem is it’s not always fine and you know what thats okay. I’ve learnt in the last few years you can’t expect to be fine everyday, not with everything I have to deal with. Chronic illness can be the most isolating thing ever especially for teenagers. I’m apparently in one of the most exciting times of my life; university, nights out, parties and exploring the world. Not for me. As all my friends move up and on around me I am grounded in exactly the same place I was 3 years ago. This makes me so frustrated as 3 years ago I had dreams of travelling the world, becoming a child nurse and going to uni. Now I am unable to travel the world and uni won’t be on the cards for a while. I’ve been feeling so down in the recently as the constant admissions and IV antibiotic treatment has really taken its toll. I know longer feel human and thats difficult. I feel like a malfunctioning object that is constantly displayed to doctors and other medical professionals. I am tired…tired of my illnesses, tired of how I affect others and tired that I can’t do what I dreamed earlier in life. Now I said chronic illness can be one of the most isolating things but that’s not always true. Thanks to some amazing Facebook groups and instagram* I have found a whole network of people who understand. I have met some amazing people in the last few months and although these people are not physically in front of me their constant support has been..well its been amazing! Thanks to the internet I have gained a 24/7 support group cause no matter what time I’m struggling there will be someone around and that is a real blessing. Now I bet your thinking why the stupid people bit of the title, let me explain. When you’re chronically ill you come across lovely people but unfortunately you come across a million and one stupid people. “Well you don’t look ill” why thank you cause ‘you don’t look stupid” but I guess you are! I hate that phrase so much, I mean what am I supposed to look like? Some people’s perception of chronic or severe illness is a thin and pale person in a wheelchair attached to oxygen. NOT ALL ILLNESS IS VISIBLE!! The days most people see me are my good days, when I can get out of the house for a few hours. “You’re too young to be ill” well thank you but I am. How unhelpful. Chronic illness does not discriminate, it doesn’t have an age of consent and it wont ask for ID. Sadly you cannot be too young to have an illness and many people are born with their conditions! The worse person to hear that phrase from is a doctor or a nurse. You’d think they would know how stupid that is. Yes I’m not like the 10 elderly women on the ward but that does not mean I cannot be ill. Also the Public Parking Police [The PPP] need to just stop, you are not helpful! Now let me explain I have a blue badge as I am registered disabled and my lungs are less than helpful. However there is a common misbelief that you need to be old or in a wheelchair to own a blue badge. If you are young and “Normal” looking you have either stolen the badge off your grandma or you don’t own one. The amount of PPP that have approached me is ridiculous and the sad thing is only a few have every apologized. The wheelchair symbol that blue badge bays have are really unhelpful when getting rid of that stereotype! So yeah you come across a lot of stupid people when you are chronically ill but as I said there are a lot of amazing people out there too! *Instagram: @Chronically.kate Hello I guess we better start with introductions. I’m Kate, a chronically fabulous 19 year old. As the tile would suggest I have quite a few chronic illnesses! I have been chronically fabulous from day 1 which in a way is a blessing in disguise, more on that later. I live in a little village in Suffolk which is lovely, if not a bit boring! I live with my mum, dad and younger sister. More importantly I have my two furry nurses Pickle and Lily. Lily is my pup and is pictured left, they are responsible for a lot of emotional care as well as keeping me company! [Why don’t they let dogs in hospital!] Right then chronic illnesses, as suggested I have many and they they all seem pretty chronic! I was born with Tracheo-Oesophageal Fistula [TOF] and Oesophageal Atresia [OA], this was diagnosis number 1. The top of my oesophagus came to a dead end and the bottom of it came up to my stomach and went into my trachea [oops]. Mum and dad didn’t know anything was wrong with me, apart from a 3 day labour [Sorry Mum!] On my first night in the big wide world I went blue cause all the milk went into my lungs That was the start of my long hospital journey! Once I had one problem my body decided it might as well have them all! Helpful I know, thanks body I was then diagnosed with Tracheomalacia, this pretty much means floppy windpipe. My trachea didn’t want to stay open so I needed another operation called an Aortopexy which help to stop it collapsing. It was then discovered I had a small hole in my heart but that doesn’t affect me, just yet another body part wanting to be “unique”. Just when the doctors thought they had my body in order my stomach stopped working. I had to have another op [Anyone noticing a trend?]. This op reversed the pyloric stenosis which allowed my stomach to empty again. [Whoop whoop] After the first 8 months of my life in hospital i managed to stay at home for a bit! But when I was 3 I developed an adrenal tumour on the right adrenal gland. This meant I started to go through puberty at the age of 3! [Really not cool body!] Mum and dad also noticed my face had gone all moony because as well as hormone levels my steroid levels were all over the place too. I had to have the whole adrenal gland removed in order to correct the problem. This means I have to have hormone and steroids levels measured each year. Then because my oesophagus was… well lets just say faulty, I’ve had to have regular stretches through my life to keep the oesophagus open and functioning as well as it could. Then all this conditions have left me with asthma, recurrent chest infections and Gastro-oesophageal reflux disease [GORD] but more about all that later……….. |
About MeI'm Kate. A chronically Ill person just trying to live life the best I can. Please join me on my journey! Don't be afraid to ask me things :) Archives
May 2017
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