Breaking the highlight reel; Please help me access urgent medical care

I never thought I'd write something like this. But I've run out of options and out of time.

I have often been told that I inspire others, for my resilient approach to the hand have been delt, and the fact I do not seek sympathy or make excuses, but I have met my limit. If anyone can help even a little, I would be eternally grateful. I felt I had to try swallow pride, stop suffering in silence, and reach out. Please, no negativity. If you don't like it, just scroll by. My nervous system cannot take more battles.

The short context:

Most of you know me as an adventurer, an academic, a climber, and a former competitive fell runner. On paper and on social media, I look like the epitome of health and fitness. But concurrently, my life has been crumbling for years, progressively, and my physical body deteriorates behind closed doors.

The grid of photos you see here has been my increasing reality for years, and is my full unbroken reality now. I am 31 years old. I have been locked in a brutal, escalating battle with a cascade of severe, hidden, progressive disabilities since I was 15. This illness has already stolen my competitive sporting career, taken away my career in the biomedical sciences, subsequently my tutoring career, and now threatens my mere day-to-day existence. - My body is a complex web of genetic and structural failures that feed into each other every single day. To give you the blunt facts, I am managing:

- Hypermobility syndrome (hEDS/HSD): The collagen in my body is faulty. My joints and spine are structurally unstable. My muscles have to work at 100% capacity just to hold my skeleton together, leaving my upper body trapped in knotted, scarred, agonizing tissue masses.

- Intractable Migraines & Brainstorm overdrive: My unstable neck and overactive autonomic nervous system trigger violent, blinding migraines that confine me to a dark room in the fetal position for days on end, unable to speak or move without vomiting.

- Rectovaginal Endometriosis: Severe internal scar tissue has physically bound my bowel and pelvic organs together, causing constant digestive distress, incontinense, intense pain, heavy iron loss, and making certain basic functionsagonizing gamble. I have had 2 surgeries for this so far, and face another soon.

- Severe Esophagitis & Gastric Dysfunction: Because collagen structures the digestive tract, my esophageal sphincter fails. Acid has severely burnt and blistered my throat and voice box, making eating and drinking a constant battle against chronic inflammation.

- Bipolar 2 with severe anxiety: An adrenaline driven storm (from the hEDS, again) that wreaks havoc on my sleep, and physical stamina, sometimes rendering me shaking and rocking in a corner, wondering if the living hell will ever pass.

- BRCA2 cancer mutation: I faced a double mastectomy last year to prevent the breast cancer, and face my ovaries removed in the future

I have lost running. I am unable to swim. I am unable to sit still for too long, even to watch a film. A normal day many take for granted, my body cannot do without severe repercussions. I have to move enough to stay more loose but not in the wrong ways and not too much. I have lost most passions. I have to try climb still occasionally to try retain the muscle I have as that holds my joints together and prevent even more deterioration at a joint and bone level, but am stuck at a way lower level now, with way less frequency, as I am far less often able to even do that basic level. The more physical conditioning I lose, the more ill I become, and the more I lose again. I am spiralling. I was a naturally gifted athlete, juxtaposed with severe illness.

I am not looking for sympathy; I am looking for a lifeline to fund the final few medical interventions that can literally save my life. NHS Neurology is an 18 month wait list, which I will not make. I am trapped in severe chronic migraine, with nausea, sickness, photophobia, and crippling mysofascial pain all the time now. I recent had an A&E stay where they kept me for 24h, said they wanted to refer me to their HOT neurology team (urgent days to weeks ref) before telling me after 12 more hours they wouldn't because of my postcode... Go back to the GP, start again from the bottom. A CT scan revealed a totally opacified maxillery sinus also, which will not be the cause, but will be contributee, to the severe migraine and head pressure. It requires surgery, but for years I've been fobbed off by NHS ENT with steroid sprays, nasal saline douching, decongestant sprays, all of which I've diligently followed. The last hoop they said? Weeks of steroids... I already have severe reflux (requiring 9 gastroscopies a couple years ago), oesinophilia in the esophagus, cystic acne flares, severe anxiety, immune system dysfunction and rectovaginal endometriosis on my bowel, steroids would make me severely more ill in a number of ways, and still unlikely treat the maxillery sinus full blockage I am informed by GPs and private ENT. - To get the help I need urgently would mean neurology and ENT being the main two services, (other necessary but less urgent services I will have to wait for the NHS).

The treatments left:

Botox & nerve block with neurology are some of the only 2 things I can now try for the migraines, and ENT? A FESS surgery for the sinus, it comes to a total of £8005 for just the next 3 months... (£395 neurology consult + £220 ENT consult + £1500 for just 3 months of nerve block & Botox in Birmingham + £5500 for the FESS endoscopic sinus surgery with Yorkshire Clinic). - The £1500 would then be a repeat fee every 3 months also. This is after years of spending thousands already on: iron infusions, (NHS wouldn't offer one despite me being iron deficiency anemic without ability to absorb iron from supplements or diet because of the severity of reflux and need for PPIs), neuromodulation devices, medical cannabis, physios, a private gastroscopy and acid studies to initially prove severe reflux so NHS would continue gastroscopies and biopsies, and a number of other things to fill the void that the NHS kicks complexly ill and desperate people into.

What I have tried - (The main ones, not an exhaustive list):

When I say I have tried everything, I mean it from a clinical and holistic standpoint. My science background has been life-saving in navigating this, but across 16 years, the list of failed interventions is overwhelming:

Osteopathy, chiropractors, specialized physio, spinal exercises, neck bracing, traction devices, TENS machines, acupuncture, mysofascial release, infrared, hot cold therapy, dry needling, extended fasting, intermittent fasting, targeted diets, gut microbiome protocols, pre-digested prescription shakes, medical c*nnabis. Heavy pharmaceuticals: opioids (including morphine), therapy, meditation, gabapentin, amitriptyline, topiramate, propranolol, and CGRP (Erenumab) biological injections — all of which either failed or caused devastating side effects that clashed with my other conditions. I’ve even undergone Prolotherapy (painful dextrose and ozone injections into my spinal ligaments and the base of my skull).

Every single door has shut in my face and not worked and/or caused severe side effects for my other conditions.

I have spent a significant portion of my life in hospitals, but the system is entirely broken for multi-system, complex patients.

Recently, after a severe physical breakdown in a public car park where strangers had to sit and hold me while I scream cried from the sheer volume and intensity of pain, I ended up in A&E. Instead of full help, I faced a traumatizing ordeal of being dismissed and passed around like a bad egg. A contrast CT scan revealed a opacified sinus. They wanted to refer to HOT neurology (urgent) for the migraines, but after waiting for 12 more hours on a hard trolly, I was eventually told they wouldn't refer me to their urgent Leeds neurology because of my postcode... But the area in my postcode (BRI, Bradford) doesn't offer Botox for migraine (it's postcode lottery now, regarding funding)...

Just this week, due to administrative incompetence between different hospital sectors and my GP, an urgent referral for the next crucial steps in my care was completely botched. In the span of 24 hours of bureaucratic finger-pointing, and me exhaustively calling between services doing admin jobs for them, my urgent treatment window was pushed back into next year, and I've had to ask the GP to re refer again to a clinic who can offer Botox eventually, with at 12 - 18 month wait list... I am currently left in total limbo again, without a neurology referral anywhere, while my conditions progress. I am so utterly exhausted from fighting the systems supposedly there to help me, on top of fighting extreme multifaceted pain, nausea, injuries, reflux, immune system dysfunction, allergies, skin problems, and now, crippling anxiety.

For the longest time I've advocated for hope and raising hidden disability awareness as a athlete, but my hope has run out with my finances and last bits of health, and I don't know how to endure each day any more in this much pain and suffering. I have had to stop teaching online now as I am too unwell to do so (sitting still is a trigger for the pain and migraines with hEDS). I need money for health but health to make money... I am at the end of the road.

I am down to the very last few medical interventions that can offer me structural and neurological peace: specialized private nerve blocks and targeted cervical Botox to chemically cut the pain loop and allow the private physio I'm also having to pay for to have a chance at working.

I have fought this alone until mine and my families bank accounts are empty. I need to raise funds to actually access the care I should have been given years ago.

No amount is too small. If you cannot donate, please at least share this post. I want this page to not only help me survive, but to give genuine hope and perspective to anyone else suffering in silence behind a highlight reel. I will not post my medical records or invoices on here for obvious reasons, but if anyone is wanting to donate to help but would like proof, I have no problem sending you screen shots of relevant medical records, letters, scan results and invoices if it provides peace of mind that I am a genuine case.

I have lived off very little money. My travel is only fuel due to staying in my vehicle, my hobbies are mostly free, I don't eat out, my clothes and shoes all have holes in them, I'm not materialistic, and I scrimpt every penny that I can, I live like a hobo in the wilderness and I never complain about that. I treasure what I have. But I do not have a lot of money to live off, I never have, and now it is a serious problem, as what little I do manage to save goes on trying to rescue my body. The problem is, in spite of this, I continue to worsen.

Thank you to my incredible circle of friends who have tried their best in all ways they can, and show they care. I have been willed to do one of these for a long time and been too proud to do so, as everyone has their battles. But now that I am completely at the end of my rope, and out of options, with zero quality of life left, I have finally decided to at least try.

A link to an article that describes the connective tissue condition I have, I'm case anyone relates or is interested:

https://www.movebalancesport.com/hypermobility-syndrome

This is the hardest thing I've ever had to write. If you take anything, take this message: never, ever, take your health for granted. Look after eachother.

♥️

Lots of love,

Pippa x