healthcare | Sandra Jensen

I can’t believe it’s been been five months since I wrote here. I don’t know where the time has gone. My various symptoms were really awful for a long time – the burning feet syndrome (most likely small fibre neuropathy), the nocturnal polyuria made for very little sleep, which in any case is never restorative. I was given a drug to help me sleep, but that gave me restless legs, which was almost worse than either of these, so I stopped taking it. I had an awful, endless viral infection in January, not COVID but a kind of cold or flu, the worst I’ve ever had. It caused a ticking sound in my head which got worse if I moved or even moved my eyes, and this was layered on top of my already horrible tinnitus. But it did pass, eventually. I still have burning feet and I still have to wee throughout the night, but it is better than it was. My pancreas is still not working properly so I have to take digestive enzymes with every meal and snack, and my hormones won’t settle down into something relatively normal. I’ve had weird heart arrhythmias and I’m still waiting to see a cardiologist about this, so too an NHS neurologist and rheumatologist to proceed with the small fibre neuropathy diagnosis. I did have an appointment with an NHS gastroenterologist, and I’ve had an abdominal CT scan for which I’m awaiting results. I’ve had brain and spine MRIs, which showed nothing out of the ordinary (other than the prolapsed disc).

About the prolapsed disc — my sciatic pain has varied from awful to completely manageable and back again, but mostly it is nothing like it was in 2021, not even close, I can’t tell you how grateful I am. I still take a drug for this, but I’ve reduced what I had to take in the early days. Overall I’d say most of my symptoms have eased, even if only a little. Again, I’m so, so grateful. But I still have a tiny window of energy available to me each day, no more than 3 hours usually. I still have severe, crushing exhaustion, and dry eyes and dry mouth and so on.

But….! I’ve had some really good days recently. My mental health is overall better than it’s been in many years – and it is this I mostly want to talk about because I’m going to ask for your help again.

I was long ago diagnosed with C-PTSD – complex post-traumatic stress disorder. I have never really known what to do with this – over the decades I’ve done different kinds of therapy and therapeutic approaches, and I’m sure these helped but I still have had breakdowns and periods of severe depression. And, as you know, after the drastic downturn in my physical health in 2021 I knew I had to do everything I could, both on a physical and mental level, to at least bring me some kind of ease, for otherwise my life as it was then was not worth living.

Thanks to so many generous people I’ve managed to do a lot about my health from acupuncture to seeing private consultants. I’ve talked about Rex Brangwyn, the extraordinary EMDR therapist I worked with for several months, and then early this year I started work with another therapist, Montseratt, someone Rex recommended who has a different approach. As soon as I saw her photograph on her website, I knew she was someone I had to work with. She’s a soul worker, mentor, grief worker, doula, childbirth activist, singer and of course, a psychotherapist. She and I do weekly sessions on Zoom, and 3 or 4 intensive in-person sessions that last all day. I’ve had 3 so far, and the last one was incredible.

I was able for the first time in my life to truly access the deep river of pain that lives inside me, that lives beneath all the dissociative behaviours I’ve learned to avoid the pain. I’ve always been frustrated that I could not access how it actually felt to be seven years old and survive a car crash that killed my father in Crete, and all the associated trauma that unfolded afterwards: my mother’s severe illness, living in a foreign country and so on, not having family or friends around for support. Not to mention my early teenage experience of being an unwitting/unwilling witness to my mother’s violent and overtly sexual relationship with her second husband. And all that followed: the years of bulimia, the suicide of a friend, the near death of my own second husband. I can remember how awful it was when I was older, but when I was seven? No. The traumas that followed just compounded my dissociation, my feelings of isolation, my coping behaviours (be strong, capable, independent).

In this last long session with Montseratt felt all of the pain, all of the grief. So deeply and so fully and so painfully it literally flowed throughout my body – for hours, and at the same time I experienced an extraordinary sense of compassion and love. Montseratt was with me the whole time, witnessing what I was going through, holding me, talking with me. At one point she said, “This is home.” The issue of not having a home has been huge for me all my life – not just because I have lived in so many countries, but because I’ve never felt grounded in myself, never really felt committed to living, to life. And when she said This is home, I could feel the truth of that. And afterwards, something shifted inside me. I’d felt the pain I’d been avoiding all my life, and I’d survived. Not only survived, but discovered within me a compassion I never knew existed.

After this session I had some days and hours of feeling better in my body than I’ve felt in years, actually healthy. And even happy!

And, the work is not over, I need to practise this self compassion on a daily basis. And after this long session I knew I needed to do another one. The original idea was to only do three, but my second session was not fruitful, so it felt clear to me that more is needed to truly ground the work within me, or possibly to access other emotions I’ve repressed (anger, for example, an emotion I so rarely feel I assume I am just someone who doesn’t really feel anger, but….). Montseratt brought it up too, that one more session like that would be really helpful.

But these long sessions are expensive – not relatively, but it’s a six to seven hour process, all in one day and Montserrat is completely focussed on me the entire time. I need help to do this, and as always as I write this, I feel… awkward. I have no expectations, I trust that somehow it will be possible.

If you can help, that would be amazing. If you can’t, thank you so much for reading this far. It’s a support just knowing you have, that you are there.

Here is the link to the fundraiser: Can you support my journey to mental and physical recovery?

Previous blogs of mine on my physical situation:
Doctor, Doctor
44 Weeks
Still Suffering
ROCKS AND FLOWERS
Feeling Normal
The Real Story
The Unendurable, Part Two
The Unendurable
IT’S NOT COVID
More Things I Don’t Want To Talk About
On Being Invisible

There was a doctor in France who told me my post viral fatigue symptoms were due to a problem with my shoulder and sent me to a physiotherapist. There was a consultant lipidologist in Ireland I was referred to, but she refused to talk to me because I was hesitant about taking statins. A doctor in Canada who refused to look at the articles I’d collected on chronic tick-borne conditions and instead told me my problem was depression. The surgeon who almost had a temper tantrum during a consultation because I was feeling faint and needed fresh air. The doctor who neglected to tell me they had a specialist nurse in the practice for menopause and hormone issues, forcing me to go private. The doctor who didn’t like the sleep medication I was on and put me on another that is harder to get off, and has worse side effects. There was the surgeon who didn’t discharge me after an operation because he was too busy, and left me in the hands of a nurse who was unaware of what I needed to know in terms of my recovery. There was the doctor who insisted I had a thyroid disorder in spite of the fact blood tests were normal and gave me thyroxine which made my hair fall out.

The list goes on. But then there was the doctor at university in England who gently indicated my mouth and said, We’ll need to take care of that. I’d had a sore there for months because I was bulimic, stomach acid splitting open the tender skin. The doctor slid open a drawer and handed me an ointment that cleared it up in a few days, and without me asking referred me to an eating disorder specialist. There was a doctor in Ireland, my mother’s, who listened quietly to my endless story of ill health, looked at me and said, We’re going to get to the bottom of this and I knew he meant it. Sadly I couldn’t be his patient because I lived elsewhere.

I have good doctors here in Brighton. They do what they can, but they are not specialists, and they have little or no time, and it’s hard to actually get a face-to-face appointment. They do refer me to specialists but it takes a year or more to see anyone, unless it’s a cancer scare (and I’ve had a couple of those). I’m on the NHS list to see a gastroenterologist, a rheumatologist, a neurologist and a cardiologist.

In the end I gave up waiting for two of these, and thanks to the extraordinary generosity of so many who donated to my fundraiser, I’ve recently seen a private rheumatologist and a private neurologist.

I saw these doctors at two different private hospitals, all quiet and ease flowing the corridors. Free coffee and tea and biscuits, nice comfy chairs. Lots of nurses and other staff to assist with whatever is needed. A universe away from the usual hospitals I’ve had to go to.

The rheumatologist, Dr. Vijay Hajela, had the best bedside manner and I left the session feeling generally better about things. I went to him as I have most of the symptoms of Sjögren’s syndrome. He listened closely, read all the information I’d brought to him, and looked not only at the symptoms that were specific to his speciality, but the wider picture. Essentially he does not think I have primary , but possibly symptoms that are secondary to another autoimmune disorder or a ‘sicca’ syndrome. He’s ordered serum ACE, IgG4, Immunoglobulin profile and ENA bloods. He feels I have an issue with my central nervous system, hence the multi-organ/body symptoms. Possibly neurological inflammation/ sensitivity. He made a medication suggestion regarding this. He was quietly shocked that I hadn’t had a pancreatic scan yet given the diagnosis of severe pancreatic insufficiency in the summer (another specialist I’m still waiting to see), and pressed for this.

The neurologist, Dr. Dennis Chan, couldn’t have been more different in manner, but he wasn’t arrogant (unlike the private surgeon I saw last year), just very comprehensive, methodical and specific with his various investigations and questions. He took a full history and then poked me everywhere with a pin; told me to walk as if on a tightrope, and did all those finger to nose tests you see on TV. I felt a bit like I had an incredibly efficient robot doctor, but I knew I was in good hands!

Dr. Chan thinks I most likely have small fibre neuropathy, which is what I thought. He has ordered a variety of tests to exclude other possibilities, including an MRI of the spine. If these don’t show anything untoward, then I will need to see a peripheral neurology specialist. He also works for the NHS and was able to order the MRI on the NHS. Probably you will get an appointment in January, he said. Or maybe February, he added with a disappointed frown. I could hardly believe it – I knew I’d normally have to wait several months or more. Later, I realised I’d forgotten to ask him about further investigations regarding various ‘head’ symptoms I have (sense of pressure in the head, extreme tinnitus, etc), and so I emailed him to check. I promptly got a call from his secretary saying he’d be happy to order a brain MRI.

A few days later I get the appointment for both, January 9^th. I’m still in shock at the speed of this. I consider myself so very blessed to have been able to access these two doctors, for the choice I made, and for the support I’ve received to see them. I think about all those who haven’t been able to do what I have, who have to wait a year or more to see someone in a crowded and confusing hospital where you hear weeping and cries of pain. The exhausted nurses rushing about. They will be striking this month and I can understand why, and I wonder how it will be for those who have to visit an NHS hospital during that time.

And me. There’s more to do, and I’m still suffering physically, but knowing there are doctors like with Dr. Chan and Dr. Hajela on my case give me hope. I just wish they were easily available for everyone.