Recently, I celebrated a big birthday – I’m now 21!
I also recently saw an article posted by The Mighty, ‘22 signs you grew up with chronic pain’ and it really got me thinking. What has it been like to grow up with chronic pain?
A roller coaster? A journey? A life lesson? My life? Luck? Bad luck? It is what it is…
There’s not a single day, since the age of 10, if not earlier, which I can remember without the memory of physical pain. Growing up with chronic pain ain’t an easy life to live, I’m not going to say it is, but it’s my life and I will make it the best that I can, I promise you this.
I am used to pain. It’s not something, that I am happy to admit but I’m used to it. If I was to rate my pain out of 10, like they ask you to at the doctors without my meds, I would easily say 7/8 out of 10. Ask me when I’m on my meds (now I’ve increased and changed some of them), hmmm this is a difficult question; I would say that it goes down to… to what? a 4ish out of 10? These scores are, however, variable. And this is not just a day to day question, but this is a question of hour by hour, minute by minute.
You ask me when my first major memory of pain is – I was in year 6 in PE. I had always been an active child, loved the outdoors, loved the arts, joining in with extra-curricular activities and I loved to dance; dance is and will always be one of my greatest memories and passions in life. We were in the hall doing gymnastics, and I felt my knee pop. My right knee. I had just been walking along, nothing major right? Well from that moment, my right knee was never the same.
Next major pain memory? Year 7… Walking to school, going through the gennel, collapsing in pain straight to the floor. That shooting pain in my knee is not something that I think I will ever forget. Not from that particular day anyway; if you ask me if one of my joints is shooting or in agony about two weeks ago, my answer – probably. My pain diary in my brain is just a huge blur.
I’m sorry to my friends, people in my classes, people in my year and to my teachers. I’m sorry for being a pain about being in pain – those days were I was ruder than normal, not concentrating as much as usual – the pain isn’t an excuse, far from it, but it affected me at school a lot more than I ever realised.
I’m sorry to myself, for letting my health and my pains get in the way of my ability to reach the grades that I wanted to achieve.
Psychological pain and torment is a different kettle of fish. The psychological impact of having a chronic illness and chronic pain, affects me differently day to day. Until recently, this psychological impact of my EDS, is not something that I’d considered or even thought about. Tomorrow, I will have my first ever counselling appointment. This is a huge step for me, this is me admitting that yeah, maybe my chronic pain has had an impact on me. I don’t let many people see me on my worst days, is that cause I don’t want to let them/myself down? Is it because, even if I don’t want to admit it, there’s some anger and resentment in me? Am I annoyed because my life hasn’t followed the plan that I envisaged from such a young age it would?
I’ve done a lot of research, and spoken to many people, including people who I know and call friends who I have met through health forums, about chronic pain. But having it from such a young age, is something that I honestly feel nobody fully understands unless you experience it for yourself.
There are other memories that will always stick in my mind; my first dislocation for each of my joints, the many doctors’ appointments, the many, many, many Physiotherapy appointments, my scans, my X-rays. These aren’t the standard memories of a 21 year old.
There are certain people in life, who help you along the way – not just your family and friends, but the people you are pushed towards due to your lives struggles. For me it’s my physiotherapists – I have seen many different physiotherapist since the age of what, 10? But there are the certain minority who have impacted my life in many ways, and they have supported me through growing up, not just with the acute and chronic problems and the negatives which life throws at me, but with many of my life choices; they’ve helped me make career choices, boyfriend choices, decisions of what to have to eat even. I hope these therapists know who they are, cause there are a lot of good physiotherapists out there, but there aren’t many like the ones that have treated me and that’s a given.
It’s not just physiotherapists, however, who have impacted my growth into an adult, but also my pediatricians, my orthopedic consultants, my rheumatologists, my occupational therapists, my geneticist, my general practitioners this is just a list of my medical family – these are the people who I trust with my life; making decisions which have made me the person I am and am happy to be today and for the rest of my life. The impact these people have made on my life is huge, not just helping me to cope physically but also with the mental torment and struggles of living day to day with chronic pain. And I’m also so happy and grateful to have these medical professionals, in my life many of whom I am now proud to say I work in the same NHS trust as.
Being a staff member of the NHS, is and will forever be one of my greatest achievements in life. This is my time to pass on my knowledge, my inside knowledge of being a patient, to my patients. Seeing my patients leave after an appointment happier than when they came in, is something that I hope is something which will continue. Me making my patients happy, makes me hope that this is how the people who have treated me will feel. Appreciated. Loved. Happy. Ecstatic. The NHS is one of the things in my life which I am happy to have grown up with.
Growing up as a child in chronic pain – I haven’t done too bad! I’ve done so many of the things that I have wanted to; gone to London so many times now I can’t count on one hand, been on holidays, danced in shows, gone out with my friends. The main thing for me, however, like I have said in previous articles, is that I’m still reaching and I will continue to reach and succeed in life. I’m currently continuing my education to be an audiologist (yes, my plans have changed – but who doesn’t have a change of life plan ey?), a job where I feel successful I can do to the very best of my ability despite the struggles.
Here’s to the many, many more years as a girl in chronic pain.
One last note.
Thank you to my work family. Getting diagnosed in my apprenticeship, people finally realising that hey maybe there is something wrong, will stay with me forever. I’ve grown from a slightly lacking-in-confidence-18-year-old, to the 21-year-old I am today, with the love and support from all of you. Thank you for making my life so much easier and helping me to get by day-to-day. And to a particular few of you at work, thank you for wiping my tears when I’ve had enough of the pain but I’m wanting to carry on. To my work family, I appreciate and love you all more than you will ever realise.
Thank you to the girls who have stuck by me since day one, accepted that maybe I can’t do everything with you all the time, coming to my house when I’m struggling to walk, coming to see me in the hospital. Thank you for accepting that my body’s just a little bit shit. You girls are my biggest support.
Thank you to my family, to my mum, to my dad thank you for attempting to understand. Thank you for accepting that this is how I am, and that every day is different, and that my body’s bloody unreliable. Thank you for absolutely everything. I love you more than words can say.