It’s ironic that when trying to come up with a title for this blog one of my favourite songs pops into my head. But this is not a post of endearing love from one person to another. No. This is a post about how I have been saying nothing about how bad I am struggling.
if you are a regular reader of my blog you will have seen my post from back in June highlighting my suspected case of Endometriosis. Life since then has been a rollercoaster. Firstly, my insurance kept me yo-yoing back and forth for months on end and rejected my planned emergency surgery on a technicality that could very well be disputed but would take a lot more time, effort and funds than I am prepared to spend. Ironically, they also will now not re-insure me because I am too high risk! Well that is ok… I take great delight in knowing they paid out probably quadruple what I paid them in fees!
Not to give up I set a plan in motion and decided I would fundraise for my surgery. My specialist, who is an amazing man, immediately dropped his surgery fees by a considerable amount when he heard the news. What a legend! He has my trust and my faith and that is why I will consider nobody else for the job!
In the meantime he came up with a pain management plan designed to help me until we eventually get to surgery. This plan consists of 20 pills a day (some of which are pretty heavy duty painkillers I must say) and it feels as if I should rattle as I walk! I objected to taking the stronger ones at first but after a week in total agony on the lesser strength ones I gave in. I’m also on a new hormonal tablet which hasn’t come without it’s issues. I have to constantly curb my appetite, which is not great when Endometriosis often prevents you from working out due to pain and fatigue.
I have been muddling on for a while now on this routine but over the last few weeks have started to develop new symptoms and new levels of pain. I have been feeling intense pain in the sides of my back which causes me some worry in that the Endometriosis may be spreading to the kidney area. I suspect this because I haven’t long been off of a course of antibiotics for a suspected urine/kidney infection which clearly haven’t done the job. This reminds me of when I was told my lower back pain was associated with the discs in my back having moved slightly. I had 2 shots of cortisone and wondered why it hadn’t helped the pain. The pain was associated with the Endometriosis that is why!
I have a fantastic job here in NZ, one that I really love waking up and going to each day. Today, for the first time in eight months I had to ask if I could work from home because I was in too much pain to go to the office. The pain in my sides is intermingled with a particularly crappy flare up of Endo pelvic pain. Gabapentin is my best friend right now!
I lay in bed last night and I sobbed and sobbed (whilst hugging my unicorn wheat bag against my pelvis) wondering why my ovaries were trying to pop out of my body. My mind raced trying to think how I would find the strength to get through this but it came up empty. I reached out to a friend who told me that maybe it was time I really reached out and asked for help.
I’ve have been on my own for so long now that I have forgotten how to ask for help. I run away from any scenario where I need to be vulnerable and instead create the facade that all is well. Even when I created my fundraiser I barely posted it for fear of what people would think of me. I felt so ashamed to reach out and say that I was struggling but in light of my friends advice I am going to choose to look at it a different way. Maybe real strength is choosing to be vulnerable instead!
So here we go. I am baring the ugly parts of myself in the hopes that you won’t all disappear from my life. How ugly does it get? Have a read of a letter I wrote to myself on a night when my pain was high and I was mentally at my lowest. I couldn’t sleep for pain and earlier in the day I had been asked when I was due… I posted it up so that I could always come back and read it and so that I could hold myself accountable to the thoughts and feelings I allow into my mind. It’s no use putting it in a drawer where you can hide it away…
Pelvic pain was intense
Still awake at 3am
I have never been so bloated! Endo tummy is real and it is painful!
I want to thank everybody that has contributed to my fund so far. To my amazing inner circle (or tribe as I like to call them) you have all rallied round and supported me. I love you so much! To the incredible donors who are complete strangers to me… I have no words. You remind me that there is compassion and love in this crazy world and that is all I ever want to believe in!
Even now, as I near the end of this post, I can feel panic washing over me. Should I just keep this in drafts and not post it? Should I just delete it? Am I crazy insane putting this out into the world? People are going to think I am weak…
Time to publish… and breathe…..
S x
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