With the current Covid-19 pandemic happening right now I have seen the impact self-isolation, has had on able-bodied people and their lives but the truth is that a lot of disabled and chronically ill people have been isolated, fighting for adequate care and living in uncertainty for years. My first operation is a true reflection of a scary and eye opening time in my life. It was also the first time I felt the affects of being bed bound and not being able to enjoy all of the things I once loved doing. I hope the Covid-19 situation results in positive changes and opens your eyes to the life that many people live everyday.
It's also heart breaking to know that many people in the same position as me or worse are not getting the care and medication they desperately need during this time and/or are being asked to sign DNR (do not resuscitate) forms. I think it's so important for disabled and chronically ill people to continue getting adequate care, support and medication during and after this pandemic. From what I've witnessed, I still don't think a lot of people truly understand what we go through on a daily basis.
"Self isolation is temporary, chronic illness is permanent"
With this being said, I wanted to take the time out to write about my first operation because it changed my life drastically and taught me a lot about not being able to physically go out. I have previously written a little bit about how I became disabled and my first operation, but didn't go into depth about why I needed surgery and how I felt at that time.
From my first operation up until now, I've spent long periods of time in hospital and have been bed bound and housebound for longer recovering at home. I've had to learn how to adapt to a new way of life every single time. I will continue to document each operation I've had in the hope that'll help you or just simply be relatable.
"You never know how strong you are, until being strong is your only choice"
As I have mentioned in past blogs, I've always had problems with my joints dislocating and I lived a somewhat healthy/active life up until the age of 10 which is when I had a really bad knee dislocation that resulted in me using crutches, becoming disabled and needing to have multiple surgeries.
I was born with talipes also known as 'clubfoot' which is a deformity of the feet and ankles that babies can be born with but luckily, my mum was able to help with exercises that she was taught to do before leaving the hospital with me. I eventually started walking when I was 2 years old and my knees started dislocating when I was about 5 years old, which is also the age where my ankles started to swell when I walked for long distances.
Growing up it was very easy for my knees to dislocate and it started to become a normal way of life for me. They could effortlessly pop out of place by being knocked against something or by my body twisting the wrong way where my knees have even dislocated while I've been on the bus but I'm fortunate that my mum has always be there to put my knees back into place. I started to do day to day activities with caution and eventually grew to hate sports in fear that I could potentially injure myself, although I've never really been a sporty person.
The worst dislocation I've ever had resulted from one small fall which lead to my first operation when I was 11 years old. As I hit the floor, I felt my kneecap twist all the way to the other side of my leg and it was out of place for about 4 hours before I was taken to the hospital where they were able to put my knee back into place. I was then bandaged from my thigh down to my ankle and got sent home with crutches.
"It's frightening how one day, one moment, one event, can change your life completely"
After dislocating my knee that day and being taken to the hospital, the plan moving forward was to have physiotherapy to get me back on my feet, however I didn't receive physiotherapy until 8 weeks after the initial dislocation (you can read more about my experiences with medical professionals/consultants in my #BelieveMe Blog).
During the time of having no care from the hospital my quadriceps wasted away, the muscles around my knee fused making them short and unable to have the strength to bend. It was a long few months of having x-rays and MRI scans to find out what was happening in my leg before they decided to put me under anaesthetic to investigate. At this point, I was terrified because my leg felt strange and unfamiliar, but as an 11 year old I had hope that after this procedure I'd be able to walk, run, dance and do all the things I once loved.
My mum and I had an appointment with the surgeon where he decided that the only option was to 'break' bend my leg while I was under anaesthetic, put my leg in a cast and bend it a few more degrees every month until I reached full range of motion. Looking back now, it seems weird that they didn't do an arthroscopy procedure (something which I had done years down the line) to see what was going on inside my knee joint which is where the root of the problem started.
I can't remember much leading up to the day of my operation, but I knew I just wanted all of this to be over because it had been a stressful few months for me, my mum, dad and family too. The day of my operation I felt scared as I didn't know what the outcome would be, but I had my mum and God mother there (and the rest of my amazing family a phone call away) so I knew everything would be okay.
I vividly remember being wheeled down to the operating theatre where I had to smell crayons until I was unconscious (something they do for children when they are given the anaesthetic I guess) and a few hours later, I woke up in the recovery room. I recall looking at the end of the bed expecting to see a cast on my leg, but instead my leg was moving up and down in a machine.
I don't actually think I noticed that both my legs were completely numb until I was taken back to the ward where everything was explained to me. It turns out that while I was under anaesthetic the surgeon couldn't bend my leg, even with force. My mum had to make a very hard decision to allow the surgeon to try another route in the hope that my leg would finally bend after 9 months.
I was injected in my back with an epidural which is commonly used for childbirth and some other types of surgery. The epidural allowed my whole lower half to be numb and allowed my leg to endure being bent in a Continuous Passive Motion (CPM) Machine which I ended up being in 24/7 for 3 weeks.
A few hours after my procedure, I was given a catheter which was a really weird experience for me where I had several complications after having it put in as it should have been inserted while I was under. Another weird experience was the fact that the epidural wore off on my left leg a few days later which mean't I could feel the excruciating pain of the CPM machine bending it. It's like I could feel my knee and muscles stretching and it felt like it was doing more harm than good but it was the first time my leg was bending in months.
One highlight from my first stay in hospital had to be the nurses and 'entertainment' that came round the ward every so often. From magicians to the Chelsea football team, there were always people to make me smile and take my mind off of my leg.
This all took place in December 2012 and I remember it being so so close to Christmas. All I wanted was to be at home with my dog and feel normal again. I was able to go home for Christmas and New Years, but I had to go back to continue my treatment. I thought it would all be worth it in the end with a few more weeks of physiotherapy and I would be back to walking, running and enjoying school.
I would never have begun to imagine the battles I would face years to come from this day with the amount of hospital appointments I would attend, the fear of not knowing how my life would pan out in the future and not knowing when it would all come to an end. Needless to say, it hasn't ended and it all still remains uncertain.
One thing my first operation has taught me is that life shouldn't be taken for granted, the ability to walk and run should never be taken for granted also. Your health should never be taken for granted and I say "live in the moment and try to enjoy your life for what it is and make the best out of it".
Learning to accept your new way of life is important to move forward.
You know your body and condition better than anyone else so always listen to your body.
Fight for what you know is right - It's your body!
Embrace what you're going through because that'll help you to move forward and grow as a person.
"Gratitude turns what you have, into more than enough"