UPDATE 24 June, 2024: Things have been for the most part
better, and then recently.. not so much.
I write about what's been happening in my new fundraiser.
I'm asking for support for two sessions with Dr. Ben Sinclair,
a private consultant/specialist on long term, chronic health issues,
specificaly tick-borne illness and retained pathogens like Epstein
Barr Virus. I've been ill now for 30 years and have tried
everything. I always prefer the alternative, 'natural' approaches
but they haven't worked, so now I'm trying something different, and
I'm hoping for your help to have someone experienced guide me on
this journey.
Thank you so much!
Sandra
UPDATE 10 October, 2022: I'm starting to fundraise again. i
have a new blog called Still
Suffering, which outlines where I'm at now, including the
following image I used from Caroline
Pover’s wonderful book “Covid Vaccine
Adverse Reaction Survival Guide”. The basic image is hers, but
the symptoms mine.
UPDATE 20 August 2022: A blog about where I am, how
I'm doing:
Rocks and Flowers
UPDATE: Enough has been raised to buy the PEMF mat!
Please see my latest blog "FEELING NORMAL"
[For original text from February 18, please scroll down]
21 March, 2022 - This is harder….
It’s just over a month since I created this fundraiser to help
me see a private spine surgeon and do a month’s worth of sessions to
help calm my nervous system. I also recently posted a new blog, The Unendurable,
Part Two, which describes some of what I have managed to do and
my journey of gratitude.
My pain is now perhaps 20% better. My every waking and sleeping moment is no longer focussed on pain. I am no longer “nothing but pain”. Yes it’s there, and sometimes it’s bad – at night, after car drives - but for the most part it’s manageable. This is, to me, a kind of miracle. And all thanks to you.
What hasn’t improved is my crushing exhaustion and fragility. This is over and above my ‘normal’ ME/CFS symptoms. If anything it is worse than a month ago – perhaps due to all that energy taken up with pain? I don’t know. It’s so bad I believe it’s affecting my eyesight – I have days I cannot focus on type - at any distance. This is not an unusual Long Covid symptom, I’ve heard, and some people with ME have it. It's a bit devastating for me, as a writer. I have a referral to an ophthalmologist but that could take 20-30 weeks…And one of my sutures from the operation is still not healing – this after 6 weeks. I hope it is all just exhaustion.
I mentioned in the above blog and elsewhere a PEMF mat (pulsed electromagnetic field). I’ve known about these for years as being used for those with chronic fatigue, MS, bone and wound healing. A friend swears by hers and is certain she would’ve succumbed to a second hip operation without it. There are numerous studies – for use with Long Covid, chronic pain, post-operative wound healing – and it’s used fairly extensively in some veterinary practices. This article covers the latter, but also goes into what PEMF is in detail.
A PEMF mat will be something I can use at home, and for years to come, hopefully obviating the need for all kinds of other ‘help’. Perhaps it'll help me get strong enough to take up some of the lovely invitations I mention in the blog.
OK, so. The title of this fundraiser is This is
hard. To then ask for help with something like this, feels
harder, much harder. It’s a lot of money, for a ‘thing’. That
many of you will not believe in, I suspect. It feels greedy, almost
shameful. But I’m taking a leap of faith, one without expectations.
I’ve done my sums:
After having uploaded all the offline donations the total that came
in minus Paypal and Fundrazr fees is £3332.
I’ve spent £962 - rather more sessions in the month than the 8 I
listed, ensuring I found the right ‘people’ - plus had some expensive
taxi rides (which I don’t need anymore thanks to kind neighbours now
ferrying me around).
So I have remaining £2370, and I’d like to do some more sessions.
These are the people who really help me - Nik Tilling for
acupuncture, Frithe Johnson for cranial sacral osteopathy and Rex
Brangwyn for EMDR therapy (I had an extraordinarily powerful first
session – see this article
on EMDR for pain ). It would cost me £540 per month to continue to see them.
If I plan on two more months with them I have around £1290 left over
from what is raised. I would like to continue to see Nik and Frithe
occasionally, and Rex for a bit longer than two months.
So I would put £1000 towards an IMRS Prime PEMF mat at £3858
(this is a special offer for March from the Swiss manufacturer – you
get an upgrade to the next system which would normally cost £5278).
I’ve done extensive research, and asked friends to do the same. It
comes with very high ratings and is the brand my friend has.
Which means… £2858 is what I’m hoping to raise in addition to
what has already been raised, plus Paypal and Fundrazr fees. So this
is *definitely* harder, for me to ask for this, compared to the
original fundrazer goal.
And as I said, I do this with no expectation at all. If it wants
to be, it will be. Thank you for reading this far, that alone is a support.
I’ve upped the goal to reflect what would still be needed (if you
want the full breakdown please let me know):
Total goal including Paypal and Fundrazr fee: £6845 - and over
half of this is already raised, thanks to your extraordinary generosity.
If a bank transfer is easier, let me know. My email is sandra@sandrajensen.net.
If you prefer to
donate directly via paypal it’s to sandra@sandrajensen.com (not the .net for my email
above). Fees are generally less if you do it directly.
***IMPORTANT***: If you donate via this fundraiser,
you can adjust the tip amount to 0 before sending your donation. Click
on the "Change tip amount" link, go to "Other" and
type in 0 before you confirm with "Count me in". This way
you will not be charged any extra fees for your donation, fees still
just come off my end, but it means you’re not sending more than you
mean to.
Scroll down for the beginning of the 'story'....
February 18, 2022
This is very hard for me to write. I have for many years been
fundraising to help animals in Bosnia Herzegovina, and on occasion,
for people who need help. I have raised thousands of pounds for
animals – vet care, rescue work, adoption out to other countries, food
for strays. I’ve lost track of how much. It’s probably in the hundreds
of thousands.
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.
But I’m in severe crisis. I’m not someone who would ever commit suicide, but pain has made my life intolerable.
The blog I wrote recently describing what’s going on for me (“The Unendurable” ) was posted before I had an operation to remove a large ovarian cyst. Since then the pain I describe in the blog has increased to the point I am obliterated by pain. I am nothing but pain. I can do nothing. I feel like I am nothing. For nearly a year now I haven’t been able to help animals due to what’s going on. For months I’ve not been able to write, or even read, I can barely smile. I’m on pain medication but I am never out of pain, day or night. This is not living. This is surviving. Barely.
Two dear friends who read the blog reached out and said, We want to help. What do you need? I burst into tears, what an extraordinarily loving thing to say. No advice, just what do you need?
And the truth is I don’t know what I need. What do I want? That’s easy. to be pain free. I don’t know how to achieve this. Bi-locating to hot springs and woodlands where there are exceptional bodyworkers who know how to help me? I don’t know if that would do it. I have no idea. I’m desperate for answers, for help of any kind really.
What I do know is it could be months before I get to see a spine surgeon on the NHS. It could be months before I get a second steroid injection/nerve root block (I’ve been told sometimes the first doesn’t work, it didn’t for me, but the second might). And I know I’ve run out of money to see health/body/pain professionals who are not on the NHS, having spent the last of a literature grant on sessions with physiotherapists and so on with no relief.
So I am fundraising to have a private consultation with a spine surgeon (essentially I have a back injury that caused a disc protrusion that pushes against the nearby spinal nerve root, this began in March 2021, causing severe sciatic pain). I can have a consultation in a week if I’m able. This would at least give me information on his point of view of the situation, and he’d also know about steroid injections. And, I do know that back surgery is dangerous, and doesn’t necessarily help. But I feel I need to know my options.
And I’m fundraising for some help for my nervous system. After nearly a year of waiting, I just had a phone consultation with a NHS physiotherapist. The head of the department. He will see me face-to face, but he wanted me to at least consider something called central sensitization: heightened sensitivity to pain. This can happen in chronic pain situations, and especially with a backround in ME/CFS and trauma. It’s a condition where the brain sends fight or-flight pain signals when they are not needed, or not to such a strong degree. For central sensitization to occur, an intense stimulus has to happen repeatedly over an extended period. This would make sense, given I have been suffering for nearly a year, and the pain I was in for 24 hours after the operation – the worst in my entire life, due to post-operative gas-- could possibly have tipped things over. Perhaps my brain can’t tell what is really going on.
Now, central sensitization isn't necessarily what's going on, but it makes sense to take approaches to relieve this – anything to calm the nervous system, and possibly a therapy like EMDR. A psychiatrist I met who works specifically with soldiers has told me he’s had success with chronic pain, but it requires around 20 sessions. This is very expensive, as most EMDR therapists cost around £75, so a total of around £1500. I feel too uncomfortable raising money for EMDR, perhaps another time.
But many of you have suggested wonderful things: float tanks, Bowen
technique, special massages and so on. And, I simply can’t afford any
of them.
So I would like to see the spine surgeon and to try a month of
weekly sessions from two people recommended to me: an acupuncturist
who specialises in pain, and a massage therapist also specialising
in pain.
Here's what it costs:
Spine surgeon consult: £300
4 sessions of acupuncture: £260
4 sessions of massage: £240
Total: £800
Paypal/Fundrazr fees @12% £96
Total: £896
If the percentage I've put for Paypal/Fundrazr deductions is too
much, I’ll put it towards animal rescue.
If someone wants to buy me a float spa session… it’s
£65 :-)
If you want to help but only feel comfortable supporting one thing or the other, just let me know.
If a bank transfer is easier, let me know. My email is sandra@sandrajensen.net.
If you prefer to
donate directly via paypal it’s to sandra@sandrajensen.com (not the .net for my email above).
***IMPORTANT***: If you donate via this fundraiser,
you can adjust the tip amount to 0 before sending your donation. Click
on the "Change tip amount" link, go to "Other" and
type in 0 before you confirm with "Count me in". This way
you will not be charged any extra fees for your donation, fees still
just come off my end, but it means you’re not sending more than you
mean to.
***8 March: update blog
on where I am now with everything
Articles on massage and central sensitization:
https://www.academyofclinicalmassage.com/central-sensitization-benefits-massage
https://www.jmbmassage.co.uk/central-sensitisation
https://www.amtamassage.org/publications/massage-therapy-journal/pain-and-mind-response
Articles on acupuncture and central sensitization:
https://www.hindawi.com/journals/ecam/2019/6173412
