On Having Bad Days

This was meant to be a different post. I was going to apologise for not updating this blog more often and let you know this was because I had started working again... I was going to write about the fact that I more or less had my pain under control. I was managing it successfully and was finally back on track, some new equipment had arrived for the office and I was excited!! All my siblings were around and we were headed to see the new X Men movie - this doesn't happen often enough, so my excitement was justified.

I decided to plan out this very uplifting and borderline over excited post, while waiting for everyone to get ready. I got up to get a drink of water and the little twinge I had felt all afternoon suddenly sharpened, my pelvis twisted- it's the only way I can explain it and the pain made my knees wobble, I convinced myself that it would go away, took my prescribed pain medication and went to sit quietly in a corner. 

Five minutes before we left I knew it was a bad idea, the pain tightened and my back hunched over into a standing foetal position, as though my body was trying to retreat into itself. My sister took my bag as I hobbled to the cab, the whole journey there, I clutched the seat and held myself as still as possible. It didn't help and while my family ordered food- literally enough to feed a small town, I ordered a bottle of water which I proceeded to sip intermittently throughout the movie - I still needed to take two bathroom breaks because the pain from trying to wait till the end of the movie was impossible to bear.

It occurs to me as I write this that in trying to present endometriosis as 'bearable' for lack of a better word, I might have inadvertently trivialised the pain it causes. Yoga, exercise etc, all pain management techniques I have mentioned definitely help me 'manage' manage being the operative word- they do not make me better and I sometimes forget this. I have some relatively pain free days and I risk it, I relax and let all my 'management' habits slip out the window, just to have a few days when I don't actively think about endometriosis and its complications. The days after these are often the worst.

So here I am nearly a week later still coming to terms with the fact that this body of mine needs work, that the best days are the days when I work to make it stronger, both physically and mentally, the days when I don't take it for granted, maybe the days when I don't pretend. Acceptance can be a beautiful thing.  

The 5 (or 6) stages of Endometriosis

Receiving a diagnosis for endometriosis will generally cause a flurry of emotions, running the gambit from mild confusion to eerie calm or mild hysteria.

I had spent the majority of my life as an athlete, eating healthily and staying fit were priorities for me and in one afternoon, I was informed that it hadn’t mattered at all. The body I had worked to keep fit had let me down and was falling apart and I came to know it intimately.

It was only after I abstractedly reached the end of the process that I realized that my process for coming to terms with the situation had closely mirrored the stages of grief.

Disappointment

While this is not generally part of the recognized stages of grief, it was a distinct and momentarily crushing part of my process. I had researched endometriosis amongst other possibilities for my symptoms and while cancer is infinitely scarier and more serious, the confirmation of endometriosis after finding a cyst was the most likely and as a result the most dreaded.

Denial

Despite hours of research and despite the fact that endometriosis was by all accounts the least life threatening- in an end your life kind of way, not make your life miserable kind of way. I still couldn’t process it. I decided that while I had endometriosis, it couldn’t be that bad. They would go in, drain the cyst, cut out the endo tissue and I would be done. Finished. Healed. Back to normal… Lets just say I spent a while on this part.

Anger/Fear

There is no cure. There is no cure? There is no cure! Seriously? Seriously! What do they mean there is no cure? Of course there is no cure they don’t care. I mean seriously? There’s no cure? And so it went, over and over and round and round. In truth I knew the anger masked the fear slithering through me. Would I be a weaker person now that I had a condition? I worked in a fast paced industry and even if I didn’t, being in pain and on constant medication was incomprehensible.

Bargaining

I didn’t bargain.

I don’t know why.

Maybe I was too busy being angry and afraid.

Depression

It felt like punishment. Rationality and logic lived on another planet and the feeling of helplessness was insidious and for a few weeks I wallowed. This particular stage hit me at different times, right at the beginning, when I was in denial and even after acceptance. It comes and goes albeit to a much lesser extent and I have learnt to treat it as good days and bad days. On bad days I try a little harder.

Acceptance

And here I am. Acceptance. Accepting… with the nuanced and evolving – if untreated, nature of endometriosis. I’m sure I’ll be dealing with this stage for at least the rest of my pre-menopausal life.

Bringing me to the first stage of the pain toolkit by Pete Moore, which gives an action plan for living with chronic pain. I will post about this next week, if you would like to check it out in the meantime click here.

What process did you use or are you currently using to accept that you have endometriosis?

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