'M.E. myself and I' by Anna Redshaw

Content note for childlessness, death

A place (and a post) for all the things I felt before surgery.

Surgery felt enormous and terrifying, and to not let that consume every second of every day, I didn’t tell many people my surgery date. But of course, I still wrote about it all; I just didn’t publish anything at the time.

Physically, mentally, and emotionally, this has been the biggest thing I have done in my life, bar getting M.E. in 2010.

I was to be an NHS patient in a small private hospital. Pure luck. Lucky again, my surgery was to be on a Sunday; a rare occurrence when the hospital would be much quieter. I would have my own room as is standard at this hospital. And my husband was given the Okay to stay overnight with me. An absolute jackpot for an M.E. patient. 

When my surgery was cancelled by my anaesthetist three weeks before it was due to happen, I became paralysed with fear at being admitted to a huge, NHS hospital. I won’t need to explain any further than that to the M.E. community. With patients currently fighting for their lives and being referred to psychiatry rather than receiving the care they need…it was the most terrifying few days of my entire life and I was not okay. After incredible efforts from my husband, consultant, and an admission’s secretary, my original surgery was reinstated. The relief! I cried, he cried, the secretary cried!

It is a very bizarre thing to be doing something that could trigger a worsening of M.E., or add further medical complications to your life. I have lived the past fourteen years with the deepest desire, and every intent, to do all I possibly can to avoid returning to life in bed. So it has been…quite something…to do something (albeit something that I needed) that would likely leave me back in bed and more frail for awhile.

January 2025 very much had an element of being the last month of life as I knew it. There were even fears of dying and I thought about writing a will, such was my belief that my body would not cope with what it was about to go through.

I am prone to little cuts and grazes, even from handling the hay the guinea pigs eat, and so was extra careful in the final few weeks before surgery incase I got an infected cut that would undoubtedly postpone my surgery.

I studied for this surgery as if it was an exam. You very rarely get a chance to prepare for severer M.E. But we had one. We could batch cook, get a care schedule in place, make sure snack boxes and medical supplies were by the bed.

I knew as much as I possibly could about every potential risk and every potential outcome. Bladder issues, bowel issues, prolapses, cellulitis, surgical menopause being “menopause on steroids”, blurred vision from the anaesthetic, blood clots, blood loss, blood transfusions…

At times I questioned what on earth I was thinking putting myself through major surgery. I can’t stress enough how terrified I was. My internal monologue became an expert at gaslighting; trying to convince me I could just carry on as I had been for years. Thing is, the Zoladex would have to stop; the one thing that had increased my quality of life exponentially (I mean the bar was quite low wasn’t it). And the coil…you know my thoughts of the coil by now (I hate it).

But then one day a thought popped in to my head that went a long way to quiet the loud, worried, little voice that had been front and centre since I’d got my surgery date:

“I am allowed to give myself a chance at a better quality of life.”

I was truly terrified about afterwards; the effects of anaesthesia, the recovery, the menopause. 

The surgery was just the beginning and that felt far too big. I don’t like unknowns. And this had so many of them. Would it be out of the frying pan and into the fire?

Nothing I read about the menopause, particularly surgical menopause, was good. Yet what I found for myself, with a sort of ‘mini menopause’ on Zoladex, was that nothing is as bad as Severe M.E. The fatigue was/is different (more like sleepiness than I’ve ever had with M.E. fatigue). As we have learnt through experience that my paralysis episodes were triggered by heat, I was worried about the hot flashed and night sweats.

I was warned that my feelings of childlessness may ramp up, despite years of counselling and years of already knowing I wouldn’t carry a baby or become a parent. In my mind, though, it felt like a relief to be having a surgery that would finally cement my childless status.

Along with the fear, came a weird excitement. Anticipation is perhaps more accurate; a nervous energy. I worked really, really hard on breathing exercises. What worked better than any breath-work, were little rays of sunshine in the form of my tiny little inner circle, made up of people who had had this surgery before me in similar circumstances. They were my guidebook; selflessly sharing every tiny thing that they wish they’d been told when it was their turn to face this surgery. Nothing, absolutely nothing, made more of a positive, calming influence or impact than those people. One in particular wrote me separate notes on what to expect at a pre-op, what the day of surgery would look like, and what essentials I shouldn’t try to get through without.

I felt guilt for making everyone worry; my husband in particular was beyond worried. It was paramount that he had good support in place for the day of surgery and the weeks afterwards.

It might sound strange but my ‘coming home outfit’ also played on my mind. I really felt like coming out of hospital was the start of a brand new chapter and hopefully a new me. I also never got to do the newborn baby’s first outfit thing. You know, packing the hospital bag for the maternity ward. Choosing the essentials but also a few nice bits. This surgery felt symbolic, and the closest thing I was ever going to get to ‘all of that’. So I wanted something new for me to go home in, as kind of a nod towards that. Yes I have always been a sentimental overthinker! In the end I didn’t have the money to do that and probably wouldn’t have felt well enough to really know what I was wearing.

Saying goodbye to an organ that never got to do it’s one job didn’t play on my mind too much. It’s easier to declare my uterus, ovaries and fallopian tubes as faulty and approach things that way. My hormones were daft and detrimental to my mental wellbeing. I know it has been different for others.

I should mention, too, the absolute disbelief that this was happening. I have never been treated before; no-one has ever tried to treat my M.E. symptoms with anything close to enthusiasm. Yet here was a consultant who could do something, albeit not for M.E., and he was now willing to do it (after his initial refusal in 2022.) I am sure that me accepting the mirena coil as a first treatment option worked in my favour; I showed willing I suppose, despite being crestfallen that I did not want one and wanted only a hysterectomy as the only long-term, and absolute, treatment option for Adenomyosis. It has been bewildering t receive treatment, truly. 14 years of M.E. and nothing but sleeping pills and a few referrals that have led nowhere. It’s been baffling to be treated for something.

This surgery was a huge gamble, and I am an incredibly risk-averse person. But it’s a gamble I have taken; daring to hope that it is the lesser of two evils.