This day two weeks from now I will (hopefully) be preped and waiting to have my second round of excision surgery. The count down is officially on and there is a date in sight, yet despite this I find that I am struggling more lately. In theory I should be re-energised by the closeness of my upcoming surgery, I should be experiencing that last burst of energy that will take me to the finishing line...but it isn't there. Instead I feel like I am sinking further, drowning in a sea of endometriosis, fear and stolen dreams. A chronic illness is more than just the symptoms; it is more than the pain, the physiological changes to your body, its more than the pathology of the disease. The pamphlets and consultants can explain what's happening to you, what your treatment options are, how the disease is likely to develop over the years but none of this information comes close to explaining what the disease will do to your life.
I know this instalment comes with a more negative slant than the rest but hear me out. The reality of endometriosis is that there are times when the disease wins, when the beatings of pain, the build up of opioid, the fear and uncertainty of what the future holds all come crashing in around you. I am sharing my feeling with you not so you will offer your sympathy but as an insight into how this disease can make one feel. Generally I like to think I can see the positives, I can learn, I can understand and I can take control back. I do things my way, at my pace, in a way that ultimately works for me - it may not be how I'd imagine I'd live my life but I still do it my way.
I was never the kid at school who knew what I wanted to do with my life; I sporadically changed my mind from one week to the next. My careers teacher dreaded to see me coming. I was going to be a doctor, a teacher, a pilot, a chiropractor. By my final year at school I decided I would quite like to be a midwife but I was told I was too young. So I done a different course, I graduated without a focus and I started working in the first full time job I could find. A few years after graduating I wasn't happy; i didn't enjoy my work so I decided to do what I had always wanted and I applied to be a midwife. The application process was long but I completed every stage and submitted it one September evening with excitement.
However something more powerful than my dreams was beginning to dominate my body. As I waited to see if I would be called to interview the bad flare ups started; I could go from happy go lucky to crippled on my knees in seconds. The flares would last seconds, minutes and on the odd occasion hours. At this stage I wasn't officially diagnosed but something was wrong. In the December I had my consultants appointment, he highly suspected I had endometriosis. I was given a few leaflets about what exactly endometriosis was and was put on a waiting list for a diagnostic laparoscopy. My consultant was very matter-of-fact about what endo was, it never occurred to me what the reality of this disease would be.
In the March I was called to interview for the midwifery course. In May the university offered me a place on the course. I can still remember the moment I read my offer, in a single moment everything began to fall into place. I actually squealed with joy (anyone who knows me knows that girly screams of excitement are not a common thing from me). When I got home from work that day my partner and I actually danced in the kitchen. We had a focus, an end goal, we would both be professionals, we would have stable incomes and we'd have money to take kids on holidays, we'd buy the silly house with the white picket fence. I accepted the offer without hesitation.
On July 22nd I was called for my laparoscopy; my consultant opened me, took a look and closed me almost immediately. When I woke he told me I had stage IV endometriosis, that I would need to be put on a waiting list to have excision surgery as an inpatients appointment. On that day I told him I was due to start my Midwifery course in a few months and if I would be able to do it, he told me to defiantly start it. I was so happy and relieved to know what was happening me, better still there was a plan to fix it. Our dream was on track.
But the following month our dream was torn apart and our lives descended into absolute chaos, everything we hoped and planned for fell apart. The pain got worse, the visits to A&E become more regular: monthly, then fortnightly until I was going a few times a week in agony I couldn't control. My medication was increased weekly until I was so doped up all the time that I started to forget what I'd done only minutes before: I couldn't remember the classes I'd been to, I couldn't remember how I got to class. I was exhausted all the time that I regularly fell asleep on the bus. I was too out of it to be allowed to interact with women let alone assist in the delivery of their baby. By the middle of November I had no choice but to defer my position and leave the course.
The dream had shattered; I was unemployed, awaiting surgery but I would go back next year so it was ok, this would only be a temporary thing.
I had my excision surgery in the December and weeks later I was in a blue light ambulance in agony. I wasn't ok. I wasn't going to be ok. Endometriosis doesn't allow for a quick fix, it doesn't take a back seat to your life, it controls it. It sits front and centre stage and it dictates the dialogue and the cues. I changed my consultant who found more disease and I find myself right back at square one; eating medication and waiting on surgery. I had to fully give up my place because I am not physically fit to do it and I found a job in retail.
In one diagnosis my life, my partners life, our dreams were shattered. We don't even know if I'll be able to conceive never mind take kids on holiday. The white picket fence, the career, having a job I find challenging and rewarding feel further away than ever. I live life bowed to my endo master, waiting to see what it is willing to grant me or what it will chose to strip me off. We don't deserve this and sometimes it does just suck. Its exhausting and tiring to constantly have to fight against a monster that controls your body, the greatest thing you will ever own being controlled by such an enemy is a cruelty that I do not have the vocabulary to explain.
Today I am tired and today things suck. But tomorrow or the next day I will feel more rested and I will take on the endo and I will win and I will do things my way. I have surgery in two weeks and one way or another things will be different after it and despite the sucky feeling, deep down am so excited for the unknown and whatever the future brings.
Edit: I think it's important that we are allowed to acknowledge that sometimes it sucks. We are allowed to feel craps for a bit. But we are strong, we dont dwell and we don't let it consume us. But we are allowed to take time- a day or two to acknowledge it
I'm a country fan this is my go to tune for these days:
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Available at: facebook.com/theendodiary
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