Isn’t it weird that you remember one day you woke up and became ill yet you don’t really remember that exact day? You remember starting to gradually feel worse, watch your weight drop, the toilet trips become more frequent followed with more blood loss but again can’t remember the exact day when it got worse? All I remember is my life before being ill then my life after getting ill and no inbetween and it never really occured to me that one day I would ever get unwell. I know what you’re thinking.. every blog you read from a chronically ill person states this, but it really is so true. Noone who gets ill ever did think that they would end up unwell for the rest of their lives and that is certainly how it was and is with me.
I didn’t realise what being strong or brave truly was untill I got poorly. I had no idea about needles, cannulas, scans, stool and urine samples or even what swabs were! (oh boy don’t I know ALL about them now!!) I didn’t know what weight gain drinks were or that weight issues were so important to my journey and how up and down it could go. See, these things have no relevancy to someone who is well/healthy yet has such a huge relevancy to someone who isn’t in such good health or going through the diagnosis part of their life.
At 13 my issues started yet I didn’t know the severity of them untill I was 17 and just what path my life journey was going to take back then. Sometimes I would be going to move my bowels non stop and other times barely at all. This continued untill I was 17 and for 4 years I was at the doctors one or sometimes four times a week just trying to get some relief! As time went on the doctors visits become more and more, my weight dropped more and my pain got worse. Everytime I woke up from the little sleep I got I said to myself “surely this shit cannot be real. It just can’t be.” But it was and it wasn’t a dream, more like a nightmare.
Eventually at 17 I got my final diagnosis after 4 years of not knowing why I was always being sick or on the toilet but how can I even describe the feelings of that day? I felt relief that there was something wrong with me and after all the doubts of doctors and people, I could finally prove to them they were wrong. The other part of me was scared, wondering what this meant for me and my family, our future.. my future.
This is the part that was hardest for me. Medication. Never once did I ever think to myself that i’d have to be on Chemotherapy drugs for a severe disease. Not once. As a chronically ill young woman with no understanding of what these drugs really did, I gulped them down with some milk or injected them into my stomach hoping that the next one and then the next one would finally be my life line. That day was never coming round. My teenage years were spent partying with old friends who I imagine mostly now have full time jobs, children, their own home, a car or are married. I would struggle from time to time but I would push myself to enjoy my weekends at house parties or marquees and even though those days are just but a distant memory, it’s those days I miss. School days were mostly spent in bed or on the toilet or spewing in the toilet nearer the age of 16/17. The days I did make it to school were pretty similar but the worst day I had was when my stomach bloated so much that school kids would joke that I was pregnant and it was humiliating.
At the age of 17 just before my diagnosis I had managed to convince my Mum to let me leave school and move on from that chapter of my life in hope to start a new one.. but I soon found that that was the beginning of my rollercoaster ride with IBD. I tried college twice and I failed to attend most days because I was constantly on the toilet or really unwell with infections which is the main side affect of these Chemotherapy drugs. I was gutted and again I never thought college was something I couldn’t do. Mentally I was motivated to do nursing and help others who suffered all bowel related issues, physically it was impossible. The journey there was just over an hour and the same on the way back. College days were spent in the female toilets shitting for my life, it just kept coming and coming out till I was horrified as to how much could still be inside my tiny little body!
The second worst thing that I never thought would happen to me? Being a target for bullies or loosing friends due to being ill. Still to this day people think it’s acceptable to treat me like dirt because I am disabled and i’m an easy target. Shame on those who have and do it now. The ‘friends’ that left or treated me like garbage because I was vulnerable. When I was young I never thought people would disappear because I would be unwell. I never once thought people were so cruel to disabled people with sly comments or digs at you for using a disabled toilet. Social media used to be the worst and it still can be for all chronically ill and disabled people. You wouldn’t believe some things you read about stomas or having IBD. One guy i rejected at a place I used to work at as a bar maid one time, before my surgery, even wrote on twitter that my picture of me with my stoma bag sunbathing “put him off his food and was disgusting” HEY SORRY MAN NOT LIKE PEOPLE ASK FOR YOUR UNNEEDED OPINION, JERK!😁. That’s what it hardest for chronically ill people and ostomates. Acceptance. Let me tell you now, acceptance comes from within you. Not anyone else. You! You don’t need anyone else to accept you for you to feel accepted in life or to tell you who you are or who you cannot be!
I am so certain of one thing though. That’s my inner strength. I’ll never give up and yes I do struggle even if I do look well via facebook or snapchat pictures. Yes I am in pain every single day even if I smile. Being ill with multiple conditions has really taught me that you should never expect respect from other people and not everyone wants to understand or treat you well. So, that taught me to be grateful for all the support and respect I do recieve unexpectedly and it’s nice. I feel free of all the negativity I had from people in the past. I am still struggling with people such as neighbours or family or people I know that just don’t understand and can be really disrespectful to me.
They say that until you get it, you don’t get it. It’s such a true statement because you will never truly know about struggling to do the basic of tasks untill you become that person who is struggling.
Illness will never win even when i’m knocked down. It’s gonna be one hell of a ride but i’m already halfway there and still ready for the road ahead.🖤