ROCKS AND FLOWERS

Posted on August 20, 2022 by Sandra Jensen

Rex coiled a thick rope along the wooden floor of the treatment room, dragged out three plastic bags from a cupboard. One bag was full of large rocks, the other full of smaller rocks, and the third full of artificial flowers.

‘The larger the rock, the bigger the trauma,’ he said. ‘Flowers are for positive events in your life.’ He placed a bouquet at one end of the rope. ‘That’s for your birth.’

I did the rest: placing rocks and flowers along the rope, the rope being the timeline of my life. As I did this, Rex wrote down on a sticky note a one-line description of each event. I wasn’t to enlarge too much, I was creating an overview, a way to see patterns and themes that might affect my thought processes, my feeling about life in general. For me this has always been clear: life is unsafe. There is no one to be there for me when I’m in trouble. But I discovered much else. It took three sessions to complete, normally it would take two, but there were just too many events it was almost laughable. After I’d finished each session, Rex photographed everything, so he could put it in a spreadsheet for me to tweak.

It was an extraordinary experience, the rope and the stones and the flowers, a piece of art, really. The act of placing them along the rope a kind of performance art, even. And to have someone witness, hear, ALL of my life, in that way, well, I have no words really. And although there were so many traumatic events, I felt a kind of awe, that I’d gone through all this. That this was my life.

‘It has to amount to something,’ I said.
‘You’re a writer,’ Rex said.

In fact I’ve hardly written for many months, and I’ve not blogged about my health since April. I’ve kept waiting for the moment I could say I’m doing great. That all the sessions and the PEMF mat so many generous people have contributed towards are finally healing me. I wanted to say, I feel so WELL.

I’m better than I was. And, I’m not well. I realise I only started this particular journey in February. Seven months. I’ve been seriously ill with post-vaccine syndrome since March 2021, in extreme sciatic pain for nearly a year, and ill with an ME/CFS type illness for nearly three decades. Healing takes time.

On the emotional side, I see Rex every two weeks for trauma / EMDR therapy. It often feels boggy and difficult and painful, but it’s still very early stages and for someone with a history of complex trauma, certainly there are no overnight miracles. And Rex has a real gift, is a gift, a gift – a flower – that has been given to me, by all those helping financially.

On the physical side, there’s no question I’m in a better state than I was in February when I wrote The Unendurable. I do not have excruciating pain, just ongoing discomfort, sometimes low-grade pain. For this I am truly grateful. I’m still on morphine patches and still taking meds for nerve pain. I’m still having weekly acupuncture sessions and cranial sacral sessions every two weeks. I lie on my PEMF mat twice a day. All of these things are helping, I know they are.

The resurgence of hot flashes has abated, instead I have burning foot syndrome, most likely small fibre neuropathy (still to be diagnosed, but quite common in vaccine injury) waking me up every two hours in the night. I asked the doctor to precribe a capsaicin cream (basically chilli pepper), and this does help (I thought it might, given cayenne pepper eased my burning mouth syndrome in 2021 – you couldn’t make it up, could you!).

And I am frequently unwell, with viral type symptoms, possibly Epstein Barr flare ups. I haven’t returned to my pre-vaccine injury baseline. Some days I’m out for the count, feeling truly grim. Every day I have to lie down for an hour and a half or more, this in addition to the time I spend on the PEMF mat. I get up late, go to bed early. By nine at night, the pressure in my head, the ratcheting up tinnitus is so unbearable I basically swallow sleep meds and wait for darkness to take it all away (not to mention the sensation someone has taken a tiny vacuum cleaner to my tongue. No matter how much I drink, it gets dryer as the day goes on).

What else? Brain fog is bad. I mix up or lose words, forget names, forget what I’m supposed to be doing. My eyesight still blurs for several days in a week, so much so I can’t read emails or text on my iPhone, or even subtitles on the TV screen. (If you want to know more about basic ME symptoms, much of which these are, here is a helpful quick look guide).

*(I actually collect rocks and stones!)*

And I’ve just received two worrying test results, taken because I’ve been having uncomfortable digestive issues for the past 6 weeks. I’ve now been fast tracked for a colonoscopy to screen out bowel cancer. And on Wednesday, as I scrolled my phone on the bus, on the way to have a reiki session with someone a friend recommended (Carly Steadman) I learn that another test result indicates ‘severe pancreatic insufficiency’. Googling my results was not uplifting. Worst case scenario is pancreatic cancer – which I doubt – best case? I’m not sure. Supplementation with enzymes, dietary modification. I’m still waiting to speak to my doctor. Or perhaps my pancreas will heal by itself, like the thyroid goitres that popped up (!) earlier this year, and then disappeared. I hope so. But I freaked out when I saw that test result. Yet one more thing to contend with.

I can only bless my friend (a fine healer in her own right) for suggesting the reiki session. The timing was perfect. Carly is a special kind of angel and she’s someone who has been through similar health issues as myself. I felt eased after the session and perhaps more importantly, that I’d met a kindred spirit. Another flower.

I’ve also joined an incredibly supportive vaccine injury advocacy group based here in the UK, called UK CV Family. We’re not moaning about our symptoms, we’re mostly looking to raise awareness so that vaccines can be made safer, that the Vaccine Damage Payment Scheme is actually taking us into consideration, as in many other countries. There needs to be more transparency in general, and scientific studies done to find out why some people react so badly. The mainstream media does not want to touch this issue – or has been told not to – but slowly more and more information is coming out.

Perhaps the biggest flower of the past four months, was going to Lesbos. It was touch and go whether I’d be well enough, but I decided I had to, either way. My partner, David Crean, held a Body Resonance Goddess retreat in the beautiful Milelja Retreat Centre near the little town of Molyvos. Twelve women attended. Exquisite women, inside and out. I participated in most of the meditations and sharings. I felt so loved, held, appreciated and seen. And I was in Greece, land of my heart. The food at the centre was incredible, not to mention the surrounding gardens. I would pick fresh mint and rosemary every morning to make tea; at dusk the mimosa trees filled the air with the most exquisite perfume. Bliss.

Yes, I was exhausted most of the time. Yes, I was sick, for at least two of the ten days. But it didn’t matter. I didn’t spend any time on my computer researching my symptoms and illness, I stopped scrolling my phone endlessly. There was too much beauty all around, nothing else mattered.

When I returned home I didn’t have a massive relapse (remarkable given the awful journey home). In fact for about a week, I felt truly myself. A feeling I hadn’t had for…? Years. But it passed.

Once again I understood I need community (and not just any community), I need nature.

Is this possible? David and I are still very much involved in Heartward, a group of like-minded people wanting to build an eco co-housing community in this area (there’ll be a zoom meet-up in early September to find out more if you’re interested). And, this will take time. Until then? I do what I can.

I found a day I had enough energy to be interviewed by Ruth Millington for her Extreme Holidays Podcast (the episode will be up in the Autumn), she’s another kindred spirit and the whole experience lifted my spirits. The story is one I hope to write as a memoir.

And, in spite of not feeling well, of not being able to write or read really (too tired, too ill, eyes too blurry), I decided our much-neglected patio needed help. So I’ve been planting, little by little. It’s not a private space (a thoroughfare for the shop we live above), and it’s a hot little sun trap, so I rarely sit out there, but it’s lovely to see the flowers blossom, to dig my fingers into earth. I’ve mostly planted bee and butterfly friendly plants, and some herbs. My sciatica has suffered, but it takes me out of the flat, gives me something to think about other than my health.

My dear cousin Jenny visited from South Africa recently and she asked me if I would continue to fundraise. To be honest, it’s still really hard for me to ask for financial help. And if I’m to keep working with Rex and the others, I’ll need to.

Or perhaps I’ll sell my novel instead! It is this I want almost more than anything — my child, out in the world. In the meantime, I tend to my anemones; wonder how to stop snails eating my cosmos flowers. I wait for my sage bushes to grow large enough to start plucking leaves for pasta.

I place rocks around the base of some pots. I think of them as stepping stones.

Previous blogs of mine on my physical situation:
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

FEELING NORMAL

Posted on April 17, 2022 by Sandra Jensen

A couple of days ago I had an unusual thought. Unusual for me, that is.

I thought, I feel normal. In body and mind. I can’t remember when I last felt like this – or if I’ve ever had this thought before, given how abnormal I usually feel.

I do not wake in the night in pain, I do not wake in the morning in pain. To think that just a matter of two months ago I could not stand on my left leg first thing without excruciating pain, and by the end of the day I’d be weeping with the relentlessness of my suffering.

The change is miraculous. I’ve used this word before in recent updates, but it is. If anyone has experienced chronic pain, and then the lessening of it, they’ll know what I mean.

I’ve also talked about feeling gratitude, and I mean really feeling it. Over the years I’ve listened to meditations or been instructed by spiritual teachers to ‘feel gratitude’ – to find something to feel grateful for. I’ve searched in my mind and usually found something, although it has sometimes been a struggle. But it’s been a thought, not a feeling. I thought, I feel grateful for X, but in fact I didn’t really feel anything. I just knew it was good that X was in my life, or good that I experienced X.

Something shifted in the past weeks, where I actually feel grateful. I’m not thinking it. I’m usually lying down, waiting for sleep, and a sensation washes through me, a deep relaxation. It’s not joy – joy can be so ephemeral, almost unreal, perhaps a bit ungrounded. But this sensation is very real, and very grounded. It also doesn’t last that long, but I have a feeling it stays in the cells. It’s like I’m a plant dying for water, and now the rain has fallen long and deep into the soil to the roots. Perhaps it’s closer to one of those moments of spiritual well-being, of connectedness with all that is.

If you’ve been reading these blogs you’ll know the main reasons behind my gratitude – the shift in my pain levels, certainly, but also the support I’ve received, enabling me to step on this path towards healing–both body and mind.

I’ve done a lot of therapy in my life, of all kinds, from shamans to psychiatrists. I have a history of what they call complex trauma (exposure to multiple traumatic events). But, perhaps I’m finally getting the support I’ve really needed. It could be the multi-pronged approach I chose to help me with the pain: acupuncture, cranial osteopathy and EMDR, that latter of which I had my first ‘real’ session early this week. In fact, my therapist used a slightly modified version, using bi-lateral body movements as I re-imagine traumatic events (in particular recent ones – see The Unendurable and The Unendurable Part Two).

Even my therapist was surprised at how deep the session went. You process fast, he said. I’m sure this is because I’d already had several weeks of the other approaches, and perhaps also because of all the work I’ve done over the decades. I’ve also taken on board the fairly radical theory of back pain promoted by Dr. John E. Sarno.

And—and this is the news I really meant to write about—thanks to so many of you donating and to three dear, amazing friends covering what remained, I’ve had the PEMF mat for nearly two weeks and been using it three or sometimes four times a day. In theory someone with a long-term chronic condition like ME/CFS would only see results after 3 months of use, but I suspect it’s already helping.

I think back to when I started on this path in early February, writing The Unendurable. And to what forced me on the path: a year long’s worth of suffering, my utter desperation and despair. And now? Yes, I’ve recently had two nasty viruses, I still have weird symptoms (my eyesight randomly going blurry), I still have to rest much of the day, and I still have pain. Mostly it’s discomfort rather than pain. But that I can sit here, I literally mean sit here on a chair and not be in agony…well, I know I’ve written a lot of words, but there are no words really to express my appreciation towards all of you who have been so kind and generous. Perhaps in French: Je vous embrasse.

In the past normal was never a descriptor I wanted applied to me. I wanted to be different, unusual. I prided myself on my so-called artistic temperament, my mood swings, my emotional upheavals. But I’ve come far from this—I’ll gladly accept all the moments of feeling normal that come my way (although Ronan might have other thoughts…).

Previous blogs of mine on my physical situation:
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

THE UNENDURABLE, Part Two

Posted on March 8, 2022 by Sandra Jensen

It’s just over a month since I wrote The Unendurable, a month since I had my operation to remove a large ovarian cyst, and two weeks since I created my fundraiser. The response to the fundraiser has been utterly overwhelming, so too all the messages and notes sent to me, many from dear friends, many from people I’ve never met at all. I haven’t managed to thank everyone. I’m sorry about this, know that you are all in my heart and that I’m so very, very grateful.

Every day of these past two weeks I’ve wanted to write more, to express something that perhaps is inexpressible, a healing process I had no expectation of. Perhaps this process began when the pain started, last March.

I’ve not been able to write about any of this, because the operation triggered yet another severe ME/CFS “crash”. I was told recovery would be two weeks, but no matter how long I rest, tremendous exhaustion isn’t alleviated. Even my sutures aren’t healing well (I’ve just finished a course of antibiotics). Other ME/CFS symptoms are flaring up- swollen glands, feeling as if I’m coming down with something. There are precious few moments available to do something unrelated to my physical state–from resting or taking my numerous pain medications and supplements, doing my physiotherapy movements, or going to medical appointments and therapeutic sessions.

Most of these appointments I would not have been able to do without the support from the fundraiser, and I’ll write a little about these first.

I had a consultation with a private surgeon. Not an uplifting experience. The situation in my back, at least according to the MRI done last September, is rather worse than was initially implied. It’s not just a disc bulge but “an extruded prolapse on the back of a broad based prolapse eccentric to the left.” This pinches a nerve root, hence all the pain I’m in.

He listed my options (in his opinion):

– do nothing, many such issues resolve in a year, but my year is pretty much up.
– have another nerve root block, but since the first one only helped about 15%, he didn’t think more would help.
– have the operation, a microdiscectomy. He outlined all the (frightening) risks, and the post-op protocol – 5-6 weeks of no sitting, perhaps propped up in bed with pillows. This alone terrified me, given how long it’s taking me to recover from a relatively minor operation.

The surgeon told me he typically gives an 80 to 85 % chance of surgery benefitting my kind of symptoms, but due to my health profile, it would be 70 – 80%. My gut instinct is it could be even lower.

I was quite depressed after this consultation. Thankfully, just afterwards, I had a face-face consultation with the lovely NHS physiotherapist I mentioned in the fundraiser, the one who’d talked to me about central sensitization, where the brain sends out ‘this is dangerous pain’ signals when perhaps the pain is not as bad as that (and just to be clear, the pain I’m feeling is as bad cuaas I feel it, but it’s possible, due to the trauma of the past year and ME/CFS, my pain threshold is lower than it might be). He was lovely, and suggested I at least try another approach, a kind of CBT of movement of the body, very, very gently teaching the body-mind to try movements I’ve so far freaked out about – and not done if at all possible – for fear of them causing me pain. It was a relief to at least consider something else before going for surgery, and would take time, weeks, months.

The next day my throat lump was scanned. It’s a benign thyroid nodule, nothing to worry about. A huge relief (unfortunately the drive there and back, about an hour and a half in total, caused excruciating sciatic pain for the rest of the day/night. Car seats seem designed to do this!).

In the meantime, thanks again to the generosity of everyone donating to the fundraiser, I’ve been doing sessions of acupuncture with Nik Tilling who specialises in pain. Initially he treated the ‘reason’ for my pain, the disc prolapse, but then he worked on settling my nervous system (in constant ‘fight/flight’), and, well, my whole being. Nik is one of the most empathetic people I’ve ever met, sessions are closer to therapy/healing sessions.

I’m seeing a cranial osteopath and she too is focussing on settling my nervous system, and healing the damage done by the operation, and misalignments of my spine/sacrum. I’ve had one clinical massage session with another specialist in this area and will be having one this coming week.

Also, my dear partner has been doing healing bodywork on me, something I’ve not been comfortable with in the past. Partly because it is his ‘job’ and I felt it would just take too much from him to be working on me too, in particular at this time, when his own work situation due to the pandemic and Brexit has been horribly stressful, uncertain and worrying.

With all this, the pain is still there–last night it was as if my calf was being squeezed in a vice and as I write this a burning snake of pain wraps itself around my thigh–but something else quite profound is shifting in me.

And it is this I really wanted to write about.

As I said in that fundraiser, “To be asking for help, for funds, for myself, feels absolutely the opposite of what I ‘should’ be doing, when I know there is so much suffering that I could assist in alleviating. The truth is I’ve never found it easy to ask for help, of any kind.”

Well, in addition to the fundraiser, I steeled myself to make a post on a local neighbourhood website to see if anyone might be willing to ferry me to and from some of these appointments, in exchange for writing help. I didn’t expect any response, but over a dozen people volunteered, and most don’t want anything in exchange. Amazing.

And the other night I spoke to someone who knows physical pain intimately, an animal rescuer amongst other things. A very dear friend (who also truly knows pain) put me in touch with her. In addition to sharing what has helped her, this lovely woman invites me to her house in Ojai, California (one of my favourite places in the world ) where I can soak in her warm pool and learn from her experience. A total stranger, inviting me to her home. What a gift! The dear friend who introduced us has also invited me to her home in the States, in a town that abounds with amazing practitioners and another friend to her home in Austria where she would give me sessions…

So, how to fully express what it means to me to be receiving such incredible generosity? Of course I’m grateful, but it’s more than that. Something seems to be working through layers of past trauma, breaking down an unhealthy idea of how I should ‘be’ in the world. It’s kind of crisis of identity. I’ve had ME/CFS for 25 years but I’ve tried to pretend it wasn’t there and pushed myself to continue to be an independent, ‘strong’, do-it-alone sort of person. And now I can’t be this person anymore. The pain has forced me to surrender, to let go of who I thought I was, who I thought I should be. And in letting go, support and kindness and love just keeps flowing towards me.

I’ve often thought of my mother in the past while. Yes, wanting her to be alive, so I could hear her voice, but also because of who she was, how she behaved in the world. Such an extraordinary person. Someone who also believed in being independent, in not needing help. Someone who helped others, not the other way around. She was a powerhouse of a woman – a force of nature, people said – until her 70s, when things started to crumble, when her way of dealing with life was no longer possible (make a sculpture, build a house, organise a community centre, dig a garden). She was suffering from a variety of debilitating issues (including pain) yet spent the last years of her life alone, lonely, isolated, because she could not bear to be seen as vulnerable. She pushed people away – even dear friends, and family. She once told me she’d wake up in the night weeping.

I could so easily have walked the same path, ended up alone and isolated and afraid.

After one of my healing sessions I had such a powerful wave of loneliness wash through me. Not that I don’t know loneliness – chronic illness and chronic pain are lonely conditions—but this felt deeper, stronger, a loneliness I’ve probably had most of my life, ever since the car accident that killed my father when I was seven. Or earlier. Perhaps, even it’s my mother’s loneliness, or further back, her mother or her mother’s mother, or even further back. This wave of loneliness seemed almost touchable, so that I could truly acknowledge it. And in other sessions, acupuncture, for example, something similar is happening around feeling joy (I can hardly remember when I last felt joy), seeing if I can allow an opening for this, and for transformation in all areas of my being.

So, while I’m still in pain 24/7, still crying with it sometimes, I sense a possibility. I can’t see how it will look yet, but it’s brighter than where I’ve come from.

I have you to thank for this, all of you who manage to read these long posts; all of you who have reached out to me in so many ways. Thank you.

What is next? The NHS has put me forward for another kind of injection, ‘radiofrequency denervation‘ (essentially cauterizing the nerve). I’m a bit nervous about this and the surgeon didn’t even mention it, but it’s not till May so I have time to consider. [Update: I was given incorrect information – it’s just another kind of steroid injection.] I have enough in the fundraiser to explore not only acupuncture, cranial osteopathy and clinical massage but other modalities for several weeks. I’d so love to take up the kind invitations to stay with people in a healing environment–I’ve often said if I could wave a magic wand for myself it would be to be in nature near warm water–but I need to be much stronger to make any kind of journey. I wonder if this will ever be possible, given how unwell I’ve been for so long, over and above the pain. I’ve known of some approaches that have worked wonders for others with ME/CFS, intravenous glutathione and vitamin C or a PEMF mat – pulsed electromagnetic field therapy – for example (some studies used PEMF for Long Covid and chronic pain). And these would eat up my entire fund and more, so in the meantime I will try to keep myself open for ‘what wants to happen’ – an approach I use in writing, actually!

[Update: a friend just read this blog and said that in my wording of the very last sentence she heard the old voice of scarcity and limitation, that I shouldn’t assume the support I’ve been given would be over… so once I feel more sure about what might help, perhaps I’ll do a new fundraiser –argh, even writing this feels once again SO uncomfortable!]