So, what’s changed during this past year? In short… Everything.
I don’t think I’d ever really understood what a chronic illness was, or how it could impact your life. I, alike my doctors had always attributed everything to being stress related; and whilst undoubtedly the last 13 months have been stressful… It’s also the first year in a very long time that I’ve not had anxiety and stress towards my mum being terminally ill. So in some ways, I now have less stress in that respect.
Life now is all about planning, preparation and not being scared to cancel any plans last minute. My health and wellbeing must remain my main priority, and this is what each day revolves around. After two surgeries and two diagnosis, I thought my pain and quality of life would both get better. I hoped, I prayed and I sought every type of advice I could to ensure my future would be better and easier… But life hasa different plan for me, one with additional illnesses and complications.
My days are still filled with chronic pain around my left ovary and right side of my diaphragm. Why? Because even my second surgery was unsuccessful in excising all of my Endometriosis, meaning the pains will likely continue until such time when they have the equipment and facilities to remove the remaining amount. I’ve since developed nerve pain in my legs, and my right leg is almost always experiencing effects of this. My joints click and move out of place meaning walking on top of never damage can often be difficult and painful.
I’m currently stuck in a system waiting for referrals to specialists, to understand if I have arthritis, hypermobility, fibromyalgia and to better understand the nerve pain. Why? Because my entire body hurts, from the top of my neck to my tippy toes, and because the pain and difficulties I’m experiencing are suggesting a lot of auto immune problems. Yet I’m 28 and facing alot of people who simply belive, that at my age, I can’t be experiencing all this crap.
Thankfully I’ve found a few people along the way in the medical profession who can vouch that age means fuck all, and even if on the outside I appear okay… Its likely there are other things contributing to my chronic pain.
I work full time and have to ensure that other than my health, this is what I prioritise in my life. Working means I have to ensure I have energy, that I don’t take medication that can impact my thinking and that I exist in an environment in which everyone believes I’m fit and healthy. Endometriosis doesn’t really have a place in a corporate environment, but that doesn’t mean it shouldn’t. Recently I visited occupational health who have helped put things in place to make life a bit easier, and to help my employer understand my illness and the implications that are unique to me. It also meant I received protection under the Equality Act 2010. My illness was seen to be something that impacts my day to day life, and the report concluded that they consider me to have a disability.
A year ago, I’d never have imagined such a report to have been created. I didn’t understand the actual impact a chronic illness could have. From pain, fatigue, exhaustion and nausea…the working day leaves me with no energy at the end of it.
It’s been difficult cancelling nearly every plan I’ve made this year, but it’s simply because if I do one thing that requires energy I’ll often exhaust myself and this will have an impact in the days that follow. Don’t get me wrong, there are most definitely times where I’ve over exerted myself, celebrated on the day of things, and made beautiful memories. Yet I now exist on a different frequency, one where I have to weigh up the pros and cons of everything. I’m getting used to it, but it’s a big change.
I spend alot of time advocating Endometriosis, talking to people in the community and trying to help women not have to wait as long as I had to for a diagnosis. I read and listen to a lot of stories, I’ve become completely gluten free as well as already being vegan to ensure I’m truly loving and helping my body from the inside out. This means eating out can be done after heavily researching an establishment, and so I’ve learned to cook alot more food this year that helps with inflammation.
I’m less reliant on a walking stick at the moment, but I know if I flare up, then I need to have support. I even took my walking stick on a recent trip to jamaica and without it, I’d have been confined to a hotel room for several days.
It hasn’t been the best year by any stretch of the imagination, but jesus, this year’s taught me how strong and capable I am or can be… In any situation. Its taught me to know my body and my pain and to fight as long and hard as I need to in order to get answers and help.
If I could tell myself a year ago anything it would be this:
It will not break you, I know it may not seem the way, but the journey you’re about to endeavour on will change the whole course of your life. It will make you more empathetic, more insightful, more considerate and more aware of your own self. You are stronger than you know, just believe in yourself.
Until next time,