Endometriosis & I : Saying Goodbye
For my consistent readers, you will all know about my Endometrosis diagnosis back in November 2018 – for those readers that are new (click here) for my journey or (click here) for more general information around the disease – since my diagnosis my life has dramatically changed.
I took full advantage of my wellbeing before my diagnosis.
Although before my diagnosis, the symptoms were still as painful as now, the medical intervention that has followed will have a large impact.
At the age of 19, I wouldn’t have pictured myself saying goodbye to so many different aspects of my life. I pictured myself travelling, working, studying and being a typical young adult. However, I have prepared myself to say goodbye and welcome my new life with open arms.
I prepare to say goodbye to my organs – over time multiple organs will be removed to reduce pain and prolong a healthier life. Before the age of 21 I will have had 3 major operations and would have had my Douglas Pouch, Rectum and Bowel removed.
I prepare to say goodbye to alcohol – although I’m not a massive drinker, over time, alcohol will be an avoided substance. Heavy medication and pain management schemes will be the focus rather than nights out.
I prepare to say goodbye to friends – friends come and go in life, but with a lifelong illness they tend to disappear a lot quicker. People will not understand the pain and the last-minute cancellations. Friends have busy schedules, life plans and expectations. Ones I simply can’t fit into.
I prepare to say goodbye to family – again, although I am related through blood, doesn’t mean the same level of commitment is there as genetic similarity. Numerous hospital admissions and increased levels of reliance on family members will test relationships and most probably shatter many.
I prepare to say goodbye to spontaneous trips and holidays – it is hard to plan around unpredictable pain. It is hard to act on the instant when repeat prescriptions are due and scans are only around the corner. Travelling will become harder due to finding insurance companies willing to cover my condition.
I prepare to say goodbye to my mobility – for years I loved going to the gym, I adored running in the morning and attended spin sessions every week. However, medications and surgeries will make it harder for me to be as mobile as I once was. The flare ups will leave me bed bound for days and weeks. Leaving me with light yoga.
I prepare to say goodbye to conversation – you find people tend to ignore you when you have an illness, people tend to forget your invite a lot more and contact becomes more limited.
I prepare to say goodbye to memory – although I’m well known to have terrible memory, brain fog and ‘writers block’ will come in waves which can not be stopped.
I prepare to say goodbye to fertility – although chances of having children are low but still there, I prepare for IVF and adoption. This is a harder pill to swallow but it’s a pill I would rather swallow now. With a weaker womb, lowered levels of fertility and medication, I don’t want to tell myself I will carry I child when the probability isn’t in my favour.
I prepare to say goodbye to my hair – Chemotherapy drugs are used to treat Endometrosis, symptoms such as hair thinning are evident in Endo making it easier for hair to fall out in clumps when Chemotherapy has begun.
I say goodbye to working full time – work prospects become limited due to the diagnosis. Although I will be able to work 9-5, tiredness and fatigue along with missed days due to flare ups limit my ability to work as much as before.
However, there are many things I am welcoming.
I am welcoming scientific discovery – being a endometrosis patient, trials and medical discovery are being announced every year. I am optimistic and one day I believe they will find a cure.
I am welcoming true friends and family. – replacing those lost will be genuine and infectious characters from different backgrounds. Inspirational and humble.
I am welcoming skilled surgeons.
I am welcoming walking sticks and stoma bags – I will age quicker to my fellow students; I will need a stoma bag at a much younger age than many. At times I will rely on a walking aid to help me get around during flare ups and post surgery.
I am welcoming happy memories - after a storm there will always be a rainbow. I am lucky to always be presented with a rainbow after a bad turn. Whether that be smile from my little sister, a card from my mum or a cuddle from my partner. My happy memories will never end.
I am welcoming a pain managed life – all these changes and alterations are all for one reason only. To keep me healthy and give me a sense of purpose and life.
I am welcoming my education – although there will be many pauses in my education, I will graduate, and I WILL get my doctorate in Criminology. Whether it takes me 10 or 20 years, I know I will get there.
I am welcoming children - whether that’s through IVF, Surrogacy or Adoption. Loosing a child was hard but I will not force my body to carry a child if it is not well enough to do so. As the years go on there are so many different alternatives to natural conception. Although expensive, a baby of my own will be worth it. I do not expect it to have the same genetics as me, I will love a child as much as if I carried it myself. I just dream to have a healthy and happy family.
I am welcoming joy and relief – times will be tough, there will be days where I just want to cry but in the end I know it is for a good cause. I will be able to do things I couldn’t do before, like tie my own shoes without squinting in pain.
I am welcoming dedication and perseverance – anyone who knows me, will know that I do not give up easily. I am ready for the symptoms, the hair loss, the weeks and weeks of recovery. I am ready for the hospital admissions and the surgeries. I am no longer a deer in the headlights.
I am welcoming the amazing NHS – I welcome the NHS with open arms. They are a formidable trust and deserve the upmost respect. I welcome their expertise and amazing work.
I am welcoming night gowns and loose clothes – I welcome the less sexy clothes, the briefs (not thongs), the gym pants and the attractive knee-high socks. I am slowly adapting my wardrobe to my disease. Ditching the glamourous and replacing it with comfortable and efficient.
I am welcoming weeks away – although these weeks away aren’t on a lush boat in the middle of the Mediterranean, I welcome the weeks away where I will be cared for by the most experienced nurses and underappreciated surgeons. The three course meals and around the clock medical care.
Most of all, I am welcoming a grateful perspective.
It will take years for me to get used to this disease, its unpredictable flare ups, the medication and treatments. However, I will remain grateful for the hard work and dedication of all those special people in my life, aiming to make my life easier. I am prepared for all possible outcomes.
I am prepared to live.
I am prepared to achieve.
I am prepared to FIGHT