Jo

Where I am now: So I’m 59 and very unwell. Diagnosed with ME/CFS in 1996 after already having symptoms for a couple of years, I also started having POTS/dysautonomia symptoms around 2001, but it took 15 years to get that diagnosed. I also had IBS symptoms since my early twenties, managed well for a long time with diet, but in 2019 I developed severe persistent epigastric pain, lost 20 kilos, nursed myself to some improvement, but for the past year and a half it has come back with a vengeance and I’m really struggling with my ever shrinking life. I think life is precious and have a big capacity for delight and fun, but my level of limitation and discomfort is currently such that I think a lot about the relief of ending it in any way I can, be that suicide or a miraculous cure. I have strived to be well for a long time. I’ve had a fair bit of therapy along the way, but it was only a couple of years ago that I really started to explore my health in light of my nervous system. And to consider that my poor health might not just be about the many courses of antibiotics and radioactive dye injections I had as an infant, but also a result of the repeated trauma I experienced. Finding the Unsilenced website was a massive piece of the puzzle for me, particularly as I’d often felt aware of trauma and inner damage, which manifested in many ways, but I was pretty sure that I’d never been sexually abused. Interestingly after a couple of looks at the website, I’ve found myself reluctant to go back to it, even though I’ve felt it would be helpful to share my story. Now I can see that as a subtle resistance to ‘going there’. What happened then: I was born with a congenital kidney malformation called duplex kidneys. It wasn’t discovered until I was about 4 with my mum having to be pushy because I was having a lot of UTIs. My memories are blurry but this is what I know; presumably my condition was diagnosed via a VCUG. My left kidney was probably infected or malfunctioning because I had an operation to remove half of that kidney aged I think 4. Ten months later I had a second operation to reimplant the ureters into my bladder. I’m pretty sure that I had multiple VCUGs during that time, and also I then went to Kings College hospital in London for a VCUG every 6 months until I was 12. The surgery held up well and I’ve had no further kidney issues. But my health has never been very good, I was always prone to illnesses and then started to get ME symptoms in my late twenties. I also suffered with depression on and off from age 15 and I think possibly earlier than that. I think I probably did need the VCUG tests and that they were done with my best interests at heart, bearing in mind this was happening around 1970. However I think that these painful things being done, being held down and hurt with the collusion of my parents as well as doctors, must have been very distressing and confusing for a 5 year old. My memories, such as they are: My memories of childhood have always been a bit blurry, although some things have come back to me when I looked for them. Of the medical treatments I had there are just a few: I remember screaming and squirming whilst I had a cannula put into the back of my hand, and them possibly not finding the vein straight away. My sense is that this is a compound memory because it will have happened multiple times. My guess is that I usually had sedation of some kind when they put in the catheters, but I have one very clear memory when they didn’t. In the memory I’m quite young, maybe 5 or 6 and I’m sitting in a waiting area, not a treatment room and a nurse is kneeling in front of me pushing a catheter up my urethra. I’m crying and my dad is sitting next to me trying to feed me pontefract cakes. My dad also remembered this clearly and later told me he was also trying not to cry. Another time maybe they didn’t put in a catheter, because I remember being x-rayed on a tilted table and being told to wee directly onto the table, which seemed weird. I think I also spent a lot of time in loos with my mum making swishing noises, whilst trying to get me to produce a urine sample. A final memory indicates to me that I was traumatised by the procedure, it was my last but one VCUG memory. I was 12 and they told me that they didn’t put girls over 11 to sleep whilst they put in the catheter. I was very worried about this and they reassured me by saying that they’d use some numbing cream. When it came to it they’d forgotten about the cream and when they started the procedure I just jumped off the table and ran back to the ward, and in the end they had to knock me out to do it. Of course memories can change and the ones I have might not be completely accurate, but my guess is I’ve forgotten much more than I’ve remembered. The effects: I was a very sensitive child, prone to bursting into tears a lot, a trait that continued into early adulthood. My family used to tease me, calling me camel face when I cried. My mum was quite controlling and critical of my expressing grief or anger, which probably didn’t help. I remember my dad once telling me aged 8 or 9 that I lacked carapace, which stuck with me because I didn’t know the word, which means outer shell. And that’s how I always have felt, to some extent, like I’m missing an outer layer. However I also have a feisty and fun loving side, I was a tomboy who loved playing football and climbing trees, even getting into fights, then I was a punk and a feminist from around age 15. I left home at 17 and went travelling a lot, spending time picking fruit in Europe and a couple of years in Asia getting up to all sorts. When I came back I got very into the free party acidhouse scene, dancing wildly all night, until I started to burn out and get ill. But the shadow side of that is that I had to control my anxiety using drink and drugs from a very young age. I sought experiences of all kinds and I put myself in dangerous situations. I now see that I was managing a very deep sense of worthlessness and I didn’t know how to take care of myself. On top of the traumas of my childhood illness I added a few self inflicted ones. I got on well with men but found it hard to build meaningful relationships, walking away from some friendships with lovely men only to fall drunkenly into bed with mainly idiots. In recent years I’ve really come to see clearly a deep patterning of self loathing and low self worth that seeps into many aspects of my character and conflicts with my generally friendly and loving character. It was only after reading some of the Unsilenced movement website that I realised that I have a shy bladder and have always had difficulty urinating, particularly when other people are around. The treatments: Despite my early hedonistic lifestyle I always had an interest in diet and natural health, initially sometimes entertaining some magical thinking. I also always had a spiritual subtext to my life, although it wasn’t until I found a Buddhist retreat centre, Gaia House, in my early thirties that I established a spiritual practice that I fully had faith in. By this time I was pretty unwell and not able to work. I started to go on silent retreats, initially a week or 10 days, and then on longer personal retreats, often for a month or six weeks and a few times several months. I think in my thirties and forties I clocked up about 3 years of retreat time. In that time I processed a lot of my stuff, calmed down my system and learned some patience and wisdom. However, my health didn’t improve, although I learned that it’s possible to be happy and feel like shit at the same time. Recently on retreats I’ve come to see how dysregulated my nervous system is. Like many people lumbered with the diagnosis of ME/CFS, the NHS gave me some CBT courses and a generic symptom management course and sent me away to rot and slowly decline as the years have gone by, with very little support other than antidepressants, which have certainly helped some. I could write a whole chapter on navigating the NHS and welfare system with a complex chronic condition, but don’t worry I won’t. But I have faced a lot of patronising, dismissal and gaslighting from mainly well meaning people along the way. I did spend three months, aged 21, in a psychiatric therapeutic community at Atkinson Morley hospital in Wimbledon, addressing my depression, and that was actually very useful, but those kind of treatment centres are long gone. In 2021 I had some contact with a Dr Jamie Fulton based in Derriford Hospital in Plymouth, who specialised in POTS and dysautonomia. He was lovely, and the first doctor I’ve seen who had a good understanding of my situation. Unfortunately our contact was limited by covid and then he retired and the autonomic unit closed down. There is no ME/CFS specialist for adults in my area and when I’ve asked if I could go and see the one in nearby Exeter, I was told that my surgery wasn’t funded to to do that. For 10 years I didn’t receive disability benefits due I think mainly to not having any consultant level input. Also like many people in my situation I’ve tried the therapies, done the diets, taken the supplements and wasted thousands of pounds along the way. Some things have helped some, particularly Chinese medicine in all its forms, and the most directly beneficial thing for me has been cranio-sacral therapy, which works directly but very gently with the nervous system. Recently I’ve discovered the mind body approach based on the work of John Sarno and have been retraining my nervous system by journaling every day using a technique called Journalspeak, offered by Nicole Sachs. This feels like the work I need to do, but I now have so much pain and, I’m told, inflammation in my nervous system that progress is slow. I’ve also last year done some online work with a chronic pain specialist, working directly with memories such as the ones I’ve described above. In the past year or so I’ve connected a lot with little snot faced traumatised Jo and gone some way to giving her the love and attention she needs. And finally: So that’s my story, thank you for reading it. I really appreciate the opportunity to share it, as well as the support offered by the website. I hope to make more use of the website, and likewise would be happy to connect with anyone interested in anything I’ve mentioned. With love, Jo