Tuesday, 27 October 2015
The problem with a journey of a thousand steps is that you have to decide when to start telling your tale. Start too soon, and you don't know you're on a journey at all. It's just Every Day Life. Leave it too long and you miss the nuances, the details and the things that make it charming and tragic. You risk minimising the experience, and then feel the burning shame of regret for ever letting it have bothered you. Yeah, I had depression. Yeah, I know millions do too. Yeah, it took me a good couple of years to recover from that having happened to me (OHMYGOD WHAT IS WRONG WITH ME?!)
This year I used my blog as a platform to challenge the Hull Marathon about their inclusivity stance. It got a lot of coverage and interest, although not a lot of movement from Hull Marathon, sadly. Little did I know, as I was using my blog to make my points, fate was laughing at my expense. I wish I believed in Voodoo or Hexes; it would make this easier.
I stopped training for the marathon mid August. I was too unwell. I had run several long, long runs (16, 18 miles) having had to spend most of the day in bed in preparation for the effort, and then needing to take several days to recover. There is a balance point and, even though I hated myself for it, I realised that it was all pain and no reward. It took me the best part of a month to admit to myself that I had given up.
The night before the marathon I had such severe pelvic pain I was admitted to A&E. They, like I, assumed it was my gynaecological issues (adenomyosis, endometriosis and ovarian cysts). I was sent away with Tramodol and an appointment for the emergency gynae clinic.
That night I went to bed, the same as every night for the last 41 years.
I have never peed again.
I have had two months of hospital admissions, A&E, inpatients, invasive and degrading tests, pain and catheters. Two months of feeling dreadfully unwell. Two months of being entirely absorbed by my bodily excretions. Who knew you could become so knowledgable about piss?
It has been a profound shock to cease to be unable to perform a bodily function that is necessary for life. If I had lived a hundred years ago, I would be dead now. That is a very strange and uncomfortable thought.
I've not blogged because I don't have a diagnosis yet. The gynae stuff is still there. I am still taking Prostap (a chemo injection that is used in cases of Prostate cancer, that also seems to help endometriosis sufferers) and still experiencing all the side effects that that generally causes. It's horrible. I have not felt well since starting this regime. Now I have the urological stuff happening too. So far, my kidneys have proven to be pretty much fucked (one is shrivelled and does very little - "atrophic" being the proper medical terminology and the other, good kidney has substantial scarring and cysts.) My bladder is fucked - the muscles have given up. They don't do a darned thing. That's atrophic too. I feel for that good kidney, scarred as it is, dragging along its atrophic twin and sibling. That good kidney, with all its battle scars and lumps and bumps, is what keeps me between life and death.
That is a very strange, very uncomfortable feeling.
Tomorrow I am having a cystoscopy with the Consultant - he basically shoves a camera up your pee hole and has a nose around. I am at once horrified and curious. Its not so much the dropping your knickers to anyone who asks (and, believe me, I am entirely brazen about this now) but the feeling of being invaded by someone you don't know. Ugh. The one thing that I am anxious about with the hysterectomy I am due next month is the idea of someone accessing my vagina whilst I am unconscious. I *know* its surgery and I *know* they're professionals. This comes from a deeper place and the very thought of it makes my blood run cold.
That said, I have been peeing blood for two days and pretty much unable to sit down. I want to look my enemy in the eye, so to speak. I don't know if mine has eyes. It has horns, I am pretty sure. I am very curious to see this bladder that has caused me so much trouble of late.
The diagnoses range from "it'll get better on its own" to a gynae prolapse, to cancer and MS. It is very hard to get your head around the difference in severity. I am trying not to think too much about it, which is pretty much impossible. I have already told my husband that he does not have to stay with me if I have some awful, disabling, lifelong illness. At 3am it didn't feel like I was in the throes of melodrama, although I am embarrassed to commit it to paper now.
I started this blog post in the hope it'd be light and witty and amusing. However, within a couple of hundred words, I am staring humourlessly at the truth I have been trying hard to avoid (except when it's 3am, natch.)