Being constantly ill...
Hey, this is going to be the story of how i became ill, and how that effected a lot more than just my health. Right i'll start at the beginning. So i had a pretty good childhood, up until i got to year 4 (9yearsold) i started gettign bad pains in my back, like everyday, all the time. So my mum put it down to my bad posture, she got me a new mattress and still no improvement. Then she started taking me to the doctors everytime i started crying about the pain. And everytime i had to do a urine test (i swear i have done hundreds of those) nothingcame up. The pains started moving around to my stomach, it felt like i was being stabbed again and again. i had lost so much weight. i was 4 stone at 11years old.So i was taken to a specialist you refered me to a hospital for an emergancy scan (this was after a year of fricking urine tests) they found that i had an inflamed bowel so i got sent to alder hey childrens hospital who might know what the problem was. I had to wait months for my appointment, and when the day came i was so excited to finally find out what had been causing me so much trouble
i had been put to sleep and had cameras looking inside to see what theproblem was and when i woke up i saw my mum crying in the corner of my room, she didn t understand what i had and neither did i. i got told i had crohns disease and that i had a tube in my nose to give me my food. i couldnt eat anythin gother than ice lollys and boiled sweets for 8 weeks, the hospital was a lonely place to be and as i didnt live in liverpool my parents had to leave me at night. I would cry myslef to sleep eveynight. This was a lot to take in at a young age, i hated my body for being the way it was, i wished i had just been normal. I hated that i had to put on a lot of weight fast, i hated the looks in the street because people thought i was dying or something. Anyway i got through it, i got better, finished primary school and went onto secondary school.
i was great for 6 months and then i started to get the symptoms again stomach aches, weight loss, frequent unpleasant trips to the toilet. i saw it coming back when i looked in the mirror and told my mum that i may be ill again, i saw the scared look in her face. No mother wants their child to go through that again. We headed back up to alder hey where i seen my consultent, he examined me and it turned out i had a flare up of my crohns. I burst into tears i had to go back onto modulen feeds agian and stay in hospital until i put my weight back on and got better. This was in year seven, i recovered quicker this time and was happy that i had got better, i had increased the dosage of medicene and everything seem fine. But it wasnt.
Since then i had got ill every couple of months sometines weeks, i had been on modulen so many times, i had medicene infusions into my vein (didnt work)i had steroids with the most horrible side effects didnt work), i missed so much school.i rarley seen my freinds, though they didnt care to much that i was ill, it sisnt seem like that big of a deal to them.i felt so lonely andihated myself, i spent my 14th birthday in a hospital bed tied down by my hospital drip. then finally in 2013 november i was on my ward just watching tv and my doctor came up to me and said he needed an important talk with me. He also brought a speacialist nurse with him. He said that we werent getting anywhere with the medicenes and that the time had come to look at a different option, surgery.
In my mind i was like "no way" i knew hwta the surgery for crohns was, it is either a part of your bowel out of the entire thing and you are left with a bg on the outisde of your abdomain. He said it was the only option and that if he didnt do something soon it could be fatal. i agreed to it after a lot of thinking and had my op date set. i was so scared during this tim eall i did was stare at my stomach in the mirror imaging if some ugly bag was there and how it would effect my life. When the date came i was so scared yet excited that this could mean i could be 100% better.i waved at my crying parents as i entered the surgery room and in that moment i was so terrified. Why had i choosen to do this, the doctor said that even though i didnt want an ostomy bag if i need it he would have to.
When i woke up i felt the most excruciating pain i had ever flet in my life, i felt searing pain all over my stomach i knew what they had done it. My head was so foggy i can only remember bits and pieces now. But i just remember knowing that my dad was there and i drifted back to sleep. This was the hardest thing i ever had to do, sitting up i could feel my stiches pulling, i took a while to heal properly and when i managed to look in the mirror for the fist time i just broke down in tears. No one will ever love you with that thing kept playing in my mind. i tried to push it to the back of my mind but couldnt. How could i? i had to seem the damn thing everyday, i was embarassed,
when i made it home, i got a lot of love from my family but none from my "friends" i just ignored the fact that my friends didnt ask how i was. And this is where the emotinal side begins... My "freinds" have never really given a sh*t about me, and i should really be used to it by now, but i needed them through all my hard times and they were not there. Recently when i have been going to school i am an invisable person, i never speak at anytime durng the day. Maybe one sentence if im lucky and that would be to a teacher. I still sit wioth them at lunch but obviously im not there so all backs face me. i am socially awkward not in the cute way in the movies i literally dont know what to say due to lack of interaction. I find myself at home every night, just watching supernatural,the vampire diaries or doctor who. Basically a loser whos only happiness is found in tv actors who dont know that i exist.
Because most of my life i have been underweight, i cant stand to lock at my body anymore, that cant get added to the long list of insecurities. Its like i have a gollum in my head saying, that im so fat, im so ugly, you have a horrible scar... i hate everything about myself. The only thing i can complemnt myslef on is that i am a good caring friend, but i dont have anyone to be close with. I have no one. Most of my days i think ho easy it ould be if the world ended tomorrow, id actually be happy. I have stress about my social life, school, home, future.
If you have read all this, i apogogise that it is so long (although i could have added sooo much more :) thanks for reading my story xx
Sorry for your struggle and not having good friends. I can relate to you in many ways. I dont have those wonderful things you speak of called friends. I feel like I live in a bubble because of my conditions and since no one understands there is no one to talk to. Would love to chat anytime
I would love to chat sometime, I'm glad that someone understands what I'm going through. Thanks for reading it was quite long :) xxxx
I'm sorry to hear about your health struggles and that you haven't been recieving the full support that can make that journey a bit smoother.
I'm glad you've found this site! This section may be of interest to you:
https://www.7cups.com/forum/ChronicPainIllness_88/
First Chronic Illness and Pain Support group Discussion
To Be Held on Wednesday, April15th, at11pmEST In the Pop up Guided Discussion room!.
Now this is just the first, we want to see how many people are interested. Depending on the turnout this will just be the first in a series of discussionsand it may become a regular thing, also we may switch up times. Thank you. If you have question or comments pleasepstthem inthis thread
Much love,
Listener andSpoonie,Jaelinand@HiddenGrace
Many people think that "Being Ill" is like when someone comes down with a cold or gets a stomach bug, but there are so many meanings to the term "Being ill" it's almost impossible to explain all.
When I was 11 I was diagnosed with depression, it shocked me and I didn't understand it myself, because I was so very young. I can't even remember how I came to be so depressed. I guess it just got progressively worse, I wasn't sleeping. I was either eating too little or too much, there was no in between, but this lead to me putting weight on at some point, you could maybe say it was a fast weight gain too, which just made me vulnerable to bullying which made my depression even worse.
At 13 years of age I was diagnosed with Social Anxiety along with a few others, but those were only minor, the Social Anxiety was the biggest worry. It got worse over time, just like my depression, I started going out less, spending more time on the internet. Before I was diagnosed my mother got worried that I was just becoming a lazy teenagers etc, but it seized to be a lot more than that. I started having regular panic attacks, throwing up whenever I had one and I seemed to develop insomnia too. When I finally did sleep, i suffered from nightmares and my insomnia tablets only made the nightmares worse.
I'm now 16 and still suffer from all of this, I have grown in weight considerably which, yes, pulls my emotional level and self confidence down even more, but I cannot exercise in front of others without the fear of them watching me, even though they may full well not be. I am all up for exercise, believe me, but I'd rather do it whilst I'm on my own or with one other person I trust and love, like a family member or a close friend. But there's always help around the corner, it may take a while for it to come to you or for you to find it, but it's always there! Don't stray away from it just because it may seem a little scary at first, but it's the first step of recovering!
I was advised to have tablets for each mental problem I have, and I do take them every day (If I remember - Don't make a habit of forgetting to take your tablets by the way), they help, they really do. You just have to give them time to work.
The doctors told me that there's a high chance that I will never fully recover, that I will always have some form of anxiety and depression until the day I leave this world, but it's not all doom and gloom. I find ways of controlling how I feel sometimes, I love reading and writing, I write books online and stuff like that, along with reading constantly, I cannot even count the amount of finished, unfinished and unstarted books in my room!
Please, if you have problems...don't just stray away, you'll only make yourself worse in the long run, find help, use it to your advantage, and get on the path of becoming better :)
