Trying to find the flow

Hi and welcome.

If I'm honest I've not known how to start this blog. What am I even writing about? I have felt that I want to complete the patient experience section first, so that it's there as a reference. However, I think it's best not to assume people have read it first, or to remember.

I think talking about my experience of endometriosis and breast cancer might be of use to someone. But my brain is drawing up blanks. I could give you a play by play of what happened, surgery, chemo, radio-therapy.... but details and emotions seem to be missing from the account. Not because I wasn't emotional! I was an emotional wreck. But because a lot of my memory of my experiences from those few years is blank, void, gone from the memory bank. So how do I talk about it? Do I even want to drag up the past when my brain has so lovingly kept me safe from the pain of that experience? My mind wavers between yes, maybe and no. It was my therapist who mentioned that maybe it was my brains way of protecting me. Maybe in time the memories will come back. Maybe they won't.

So where am I at now?

If I'm honest I feel somewhat lost on that one too. Healing from breast cancer, still. Not knowing what is the way forward but knowing that my interest in alternative healing is something I want to investigate. I think if my mind and body are pulling me in a certain direction, I should follow. Listening to my body wasn't easy and I have a suspicion that my endometriosis may have gotten worse recently. Although I'm completely at a loss as to how to move forward. My GYN is not able to operate on the thoracic endo. I respect him for being honest.

So how do I move forward. And in which direction. Is there an approach that can alleviate my pain? And what does this approach look like?

Western medicine saved my life. 

But, it has also made me sick. 

I was put on codeine at the age of 22. and I have been on and off of it ever since. I am tired of using a painkiller that does nothing for my pain, but keeps me addicted. I will be honest that I have used Cannabis for my endo since the age of 16. It's the only painkiller that has ever erased my pain completely. 

I'm in the process of coming off he codeine again. This time I hope it sticks. I have asked for help from the musculoskeletal team to help me with my pain, pacing and day to day tasks. I'm still healing from trauma and trying to process everything that has happened. 

I'm learning to accept myself. To turn the self abuse into love and be my own protector. It's probably one of the hardest things I'll ever do.

I think at this time I need guidance, and that engaging in therapy again would be helpful. I would also like to investigate more alternative therapies. 

I've come to realise that healing isn't linear. It seems to go in spirals. Each time taking you back to the start of the trauma. Each time gaining more knowledge. 

Each time I notice the fear building in my body, I remind myself, "drop your shoulders", "breathe into your body", "focus on the breathe". 

So maybe at this time, everything is a little unknown. But that's okay. I can only go at the pace of what my body allows, and the pace of the medical staff helping me. At the moment, it's pretty slow. But hopefully as I start the pain exercises I can build some more trust in my body. And start to be more present.

Much Love 

Mx

*edit: I should mention, for clarity. Yesterday was spent in A&E, due to a strange lump on my leg. I am on medication that can cause clots so I calmly called 999 and got through to the ambulance service who told me to make my way to A&E. I made sure to get a lift to the hospital. The doctor ran a D-dimer test and everything came back normal. In retrospect, it looks like a weird bruise, another I do not remember getting. But probably nothing serious. I am, however, glad that I checked it out.

I believe there is a time and a place for hospital treatment. When it comes to life saving care they are excellent. However, when it comes to living with long term illness, it has often failed me. I have lived with Endometriosis long enough that I am willing to look for other options for care. This will be my journey discovering what works for me, and what doesn't.