Chloe's Chronicals of Chronic Illness-My HPV Vaccine Injury Journey.

27/03/2026

I was so pleased to be able to chat with the wonderful Ian from Arc4Health today who kindly visited us after I recently won an 8-week trial of their Microcurrent Therapy device.📳

I actually managed to talk / listen for quite a long time - probably because of the adrenaline, but I was so invested in his story: how he come about the technology, his own healing journey, the connections he has built, the way the tech has been made more accessible and how it’s now having a positive impact on so many people (and animals) across the globe! 🌎

It was refreshing to not have to discuss my health with a doctor for a change. Plus, hearing that this evidence-based tech has helped 1000’s of people with similar symptoms & diagnosis’s as me is something that has not only sparked my curiosity, but given me a new lease of hope.

I’ve commenced programme 1 today (Friday 27th March) for 6 weeks. Mum will also be trying it out and I will be documenting any improvements (or side effects) we experience, so watch this space!

Side note: I’m always skeptical about these kind of things and weary of businesses potentially praying on vulnerable people for financial gain… because there’s unfortunately lots out there!! However, I can confidently say that I have absolutely nothing to loose by trying this. It’s a free trial, has multiple studies published in reputable medical journals and I’ve been assured it can’t do me any physical harm.

False hope is the only possibility. While I’m incredibly excited by all the case studies and stories about people who have healed from their life changing chronic illness / pain / injury as a result of ‘The Arc’, at the back of my mind - because I’ve been so unwell for so long and let down countless times by mainstream medicine - I worry I could be an exception to their success and how much that could crush me.

But we won’t know unless we try.

I was told I must be patient and keep an open mind, so optimistic is what we will continue be. 🪷

Let me know if you would like to know more about the device and I’ll work towards sharing info and addressing any questions you may have in my instagram story / highlights.

Blessings, Love & Light
Chloe.✨

26/03/2026

(Update 3/3)

After 5 days home from my sepsis admission we ended up back in hospital.

I’ve been home 2 weeks now.

On the day I was discharged we got a cancellation appointment with a kidney stone specialist who was literally in the same building. We thought this was perfect and he could come up from his outpatient clinic to see me on the ward, like the GI surgeon did… Unfortunately the consultant who I’ve only seen once (and on that occasion said I “should be put in a care home!”) interfered and made it into an telephone appointment, despite me making it clear we wanted to see him in person. She told us that the urologist said he wouldn’t be doing any procedures today and didn’t need to see me. So, we got home, and at 4pm he rang. I wasn’t in a good way and had another episode that would have warranted another ambulance if we didn’t self administer extra steroid. Before mum had to leave the call she quickly explained the situation and he was incredibly apologetic. “I’m really sorry mam”, he repeated. He wasn’t happy as he knew how important it was for me to see him and for something to be done about these stones. He said if he knew where I was he would have come to see me and sorted something out. We are fuming. We will probably have to wait months now for another outpatient appointment and the UTI already feels and looks like it’s returning. These stones are like a ticking time bomb, I just want them gone!

13/03/2026

I have some good news to share for once! ✨

(Hospital Update 2 of 3)

▪️ Finally had a consultation with GI surgeon.
▪️ Been referred to Oxford Intestinal Failure Unit.

We’ve not heard anything back yet, but it’s a step in the right direction…

Fingers crossed that this year will bring an end to my over four-year battle with a feisty bowel-to-skin fistula and that the involvement of a new [and more specialised] GI team will equate to me receiving the medical care I very much need and deserve.🤞🏻

~Chloe🪷

08/03/2026

Sorry for the radio silence. I was admitted to hospital on February 2nd with Sepsis #8. Luckily we caught it early and they got right on top of it with antibiotics this time.
Unfortunately it still travelled to my precious central line, which only lasted 3 years 5 months compared to almost 6 like my previous one.

Besides the temperature of 39.8 and 130bpm heart rate (I’ve had worse) I wasn’t actually much more unwell to how I have been feeling for a while but I went further down hill due to a horrible experience in A&E, yet again…

Due to medics not listening about my very poor veins or my ongoing requirements I had 15 failed attempts of peripheral cannulas – 3 tissuing immediately after medication – and was left without IV fluids and potassium for 36 hours… (with kidney/bladder stones and Sepsis!! Make it make sense!!) This resulted in me uncontrollably spasming for hours on end, becoming very weak and much more unwell than necessary.

I felt a bit safer once my GI/nutrition team at GRH intervened. As soon as they knew I was there they came to see me in person, got me moved from the ED to AMU and got a plan in place while I was off TPN. The consultant warned us that critical care were on standby since I “had no reserves left.” Thankfully it didn’t come to that. I responded to antibiotics quite well… but the suffering was inhumane and once again avoidable if doctors simply listened to us about getting vascular access team straight away and that my body NEEDS something running pretty much 24/7 [with at least potassium to maintain my muscle function].

The excuse is always associated with me being “too complex”… I may not be the average patient, but it’s really not that difficult to comprehend and it’s not like these medical events are not in my notes or happened several times before…🤷🏻‍♀️

The most concerning thing was that one of the medical consultants were willing to use my line before cultures were back to see if my temperature would rise again... to either confirm line infection faster or send me home.

That could have ended me.

The cultures grew Staphylococcus A, a bacterial infection in my blood and central line. We believe it originated from my fistula since I previously had chronic Staph.A there when I had my jejunostomy tube and the skin has never looked so good since being on two courses of antibiotics — IV Gentamicin & Teicoplanin. I haven’t been screaming in pain with it, the skin is no longer raw, splitting, weeping clear fluid or bleeding at slightest touch like it was. I also haven’t had what I thought was mucus, but possibly pus, coming out with the bile output. Let’s hope this lasts.

As I began typing this (Friday 6th February) I was waiting to go down to theatre to have the infected tunnelled line removed under GA and a 2nd temporary femoral line placed for more permanent access, until the infection was cleared from my blood. Apparently it was incredibly hard to remove from my chest, so I’m glad I wasn’t conscious.
The first midline vascular access inserted in my groin would have lasted the entire stay if it wasn’t for me being left to get so dehydrated and into the seizure-like state which caused it to come out bent after only a couple of hours… luckily just after I had my essential-to-life steroid and antibiotics!

Anyhoo, all my vitamins and minerals started being replaced separately in my femoral line. I had my new central line placed on Monday 9th February and restarted TPN slowly. Thank goodness they found somewhere viable or the conversations had would’ve gone in a very different direction…

Before the line was removed a doctor wanted to insert a jugular CVC (line in neck) at bedside. But my instincts told me that this could have transferred infection where they would meet internally near my heart and would have compromised my ability to have my long term central line placed, and I was told I was right. But I would’ve had no choice if anaesthetics couldn’t get a decent cannula in a deeper vein in my arm to tide me over that night.

Once again I have not seen an endocrinologist despite adrenal crisis symptoms and my ongoing concerns.

I had an abdominal CT & ultrasound which showed another gallstone plus the culprit to my catheter issues and discomfort. An approximately 1.7cm stone (likely bigger, it kept moving) in my bladder and smaller ones in my kidney. We showed everyone the stones I have somehow passed naturally and they were wide eyed at the size but I’ve been told the remaining boulder in my bladder is definitely too big to pass without being broken up.
Despite this, my history of urosepsis and kidney stones that got trapped, Urology wouldn’t see me because “it’s not an acute problem”… They insist on seeing me in clinic despite me being bedbound, not being able to get patient transport, and lack of urgent care in the community for reoccurring / chronic UTI.

Why it is so difficult to have multi-disciplinary team and get things sorted as an inpatient to prevent these acute situations is beyond me…

Nevertheless, I had one more test on Friday 20th and was home by 10pm that evening. Just in time for my Mum’s 50th birthday on the 23rd.

I was so relieved to be back in my own bed [replaced frame & new pressure mattress!] and glad mum got to see some family, even though it was a hectic day and I was unable to. I’m just devastated I didn’t finish my surprise project in time, but I managed to do a funkypigeon card in hospital and her special gift will hopefully be here in time for Mother’s Day! 💕

28/12/2025

James Timony & his mates have kindly set themselves a challenge and in the New Year will be walking 24 miles around our hometown to raise funds for me!🥹

Please sponsor them if you can. 🏞️🥾

We have various ongoing expenses but the main thing this money will go towards will likely be a fully reclining powerchair which would allow me to escape the bed I’ve been bound to for a decade.👩🏻‍🦼💨

Thank you to those who have shared or donated so far. Already over £600 raised with still a week to go until the event!

Hi, a group of friends and I are hiking 24 miles with 3500 feet of elevation… James Timony needs your support for 24 mile hike for Chloe on the 3rd of January

21/12/2025

Hello Winter Solstice.

It’s 4 sleeps til Christmas. I haven’t even got my decs up in my room yet as a deep clean is warranted first. Mum has got them down from the loft and is ready to bring them in when I’m up to having her tackle it.

I didn’t realise that my previous update on Go Fund Me didn’t automatically post here 3 months ago. Feel free to read that first. (Warning: it’s long!) https://www.gofundme.com/f/help-chloe-live-a-better-quality-of-life

Now on to my most recent entry to my blab-on-a-lot about my health journal… 📝

We were supposed to have genetics video appointment on the 1st December (we did check beforehand because we have never heard of an appointment being on a Sunday!) but we waited 3 hours and nobody came online. We haven’t heard from anyone since. Hopefully I’m still in the system after all these years waiting for this pretty significant consultation. 🙃

I was also supposed to have a surgery consultation at a local hospital on 4th December, but the letter went elsewhere and was too late notice to book transport by the time we received it (less than 72 hours beforehand.)
I was not physically or mentally prepared for it anyway, but it would have been nice to get it out of the way before Christmas and have a plan for the New Year! It’s been rescheduled for 14th January, but with someone else. The main surgeon (who my local GI referred me to for my complex case and I sent a begging letter to) does do private appointments so we’re going to see if we can see him and pay a little extra for a home visit. That way we can discuss things thoroughly without me being in a state from the travel and risking catching anything at the hospital. Worth a try. Then he’ll hopefully be able to refer me on to the NHS list, if I’m approved.

As far as I’m aware I can’t get this surgery done privately due to being on TPN, but it is definitely something I will ask about since ‘elective’ (non emergent) surgeries currently have an over 6 month waiting list. Cancer patients are being operated on first, which is understandable, but also means more cancellations and increased backlog for the non malignant patients who often get their surgeries cancelled due to uprise in emergency cases at this time of year.

Unfortunately I’m back to screaming and crying every day with my fistula again and can feel my bowel shutting down — I’m just so mad because the intestinal motility improved a little over the past few years, and is a result of nobody repairing the damage from the degraded stoma, the tube protruding my abdomen and me being left on TPN!! Yes it was necessary, but NOT for 4 YEARS!! My liver enzymes are also increasing again; which could be a side affect of the TPN or the return of gallstones.

My bladder stones feel far too large to pass now and causing so much discomfort. I’m not liking how my urine is looking either, but nothing gets done about it unless there is a change in my blood. Hopefully I can continue to avoid acute infection and wait it out to have them blasted with a laser whilst I’m under GA for the fistula surgery. That would be the logical thing to do, but this is the NHS we are talking about!

Last but not least, for over 6 months I’ve had what I thought was a mixture of mast cell reaction to my sweat and some dodgy moles / skin lesions on my back that keep bleeding from the slightest friction… but my GP thinks it’s a gnarly fungal infection and since I’m bedbound [more susceptible to pressure sores] he’s concerned that it could turn rather nasty quite quickly.
It doesn’t help that my pressure mattress is broken (it is 9 years old!) and the company can’t change it until I’m transferred out of it. So we have to ring them when I next go into hospital.
I have been prescribed anti fungal cream which I know I will react to due to multiple incompatible ingredients, but been told to patch test and to see how bad. IV anti fungals are hard to get in the community and I wouldn’t tolerate oral solutions via my tube, even if my bowel didn’t have a hole in it… So, for now, I’m keeping up with my natural regimen of soapless cleanser and Colloidal Silver gel and trying not to itch or wet scrub the peeling skin off. Need to keep it as dry as possible and have my eye on some bamboo cotton mattress protector pads to replace the disposable ones that are likely contributing to the problem. They would also be easier to slide underneath me as often as we like rather than having to remove/replace the bottom sheet, which takes so much time and energy.

Maybe when I’m in hospital next someone will prescribe the IV anti fungals since I have had oral and vaginal thrush for 4 years, fungal nail for over a year and now this thriving on my skin. The last thing I need is it causing open wounds or travelling to my bloodstream via my central line.

Every day there’s something that makes mum say “shall I ring somebody” thinking that I’d get the help I need - but that’s never been the case. So I get fustrated with her, even though I know she’s only trying to help and doesn’t like to see me suffer. We both need life to get better.

It will be interesting to see what the appointments in the new year bring. Longing for just one medical professional to be willing to take charge and just sort everything out once and for all, because there IS a solution for a fair few things going on and it’s all just getting ridiculous.

I just hope I don’t end up in hospital for Mum’s 50th in February, because I want to make it as special as possible for her. I’ve been working on a surprise project since February this year yet still far from finished. So I’ll be getting on with that now!

Incase I don’t get the chance to make another post, wishing all that celebrate a Merry Christmas / Happy Yule or simply a great day. 🎄

Love & Light,
Chloe. ✨

23/10/2025

June 21st: On this sweltering summer solstice evening I managed to do a mini facial and lip exfoliation with colloidal silver and aloe vera.🍃
I felt radiant and beautiful, and more myself for a as long as it lasted.
After tackling the task of doing my full body and bed the day before, and being awake since 2 am, I'm surprised I managed this... Thank you universe for this brief moment of joy after such a long time of not catching a break in symptoms - at all - to practice self-care.

It's the little things.✨🌞🌻🌛

I have not managed to feel or look so put together since. My hair is back to being a birds nest on my head because I can’t tolerate having it brushed or I have purposely put all my energy into keeping my body clean.
Having a full on bedbath is a 3hr marathon. I need to prepare for it at least 5 days in advance (often much longer when symptoms interfere). Before changing the sheets I use Safflower oil - my only source of Essential Fatty Acids - to gradually exfoliate the skin off each body part. My arm one day, my chest and neck the next etc... It is not a pleasant experience when you are sensitive to touch, have chronic pain, limited energy and can’t easily wash off the gunky mess it creates without running water connected to a drain… but it’s the only way I can get the job done and keep skin infections away. It’s one less thing to do on the main event day, whenever it arrives. This consists of having my toenails clipped, more skin removed from feet, then washing, drying & moisturising my entire body. If that wasn’t enough, I often have to deal with my stoma and do a bag change in between, before we’ve even managed to put on any clothes or sheets. After at least an hour massaging out and cleaning up bile I’m well and truly spent. I rarely get to do my teeth and hair the same day or this would add another 1hr45+ and forcing myself to do so would make me even more unwell, especially in the following days when the delayed symptom exasperation hits me 24-48 hours later. Having my room cleaned is another ordeal. This is why I don’t get to see my friends, rarely see my family or have to neglect my hygiene to be able to do things I want to do.

03/09/2025

🪷 June Moments of Reflection. 🪷

I can’t believe we’re half way into this ‘new year’ already.

Instead of the improvements I could’ve made, below I’ve listed the unwanted’s I’ve gained…
• Deformed toes/feet from curling them under and rocking on them in pain.
• Unable to straighten both legs (an obvious contracture on my left) from being in a near constant foetal position on my back for approx. 4 years.
• My spine and hips are totally out of alignment - the minor curvature of spine has probably worsened. Subluxations increased. Likely because I am stuck favouring one side whilst changing my stoma bag / massaging it for hours on end night and day.
• I haven’t been able to decrease my fentanyl patch dose (but I have refused to increase it, despite being suggested.)
• I’ve had to add another IV drug to my regimen.
• Still dependent on TPN and unable to replace J tube to resume tube feeding and MCAS meds - leaving me symptomatic and extra vulnerable to complications.
• Unstable chronic illness baseline (especially Adrenal Insufficiency & M.E. symptoms) due to the daily physical stress and emotional toll on my body.
• Worsening of ? / Neuralgia (jaw & facial nerve pain) due to clenching my jaw and straining head/neck in awkward positions.
• Low mood. Most recently crying daily in pain or out of pure anger / frustration.

This isn’t to be negative, but to document the reality of an ordeal that could have been prevented since the above is all stemming from this FIXABLE hole in my abdomen /bowel.

Many basic Activities of Daily Living and Self Care, to getting my eyes/ears tested, having my first cervical screening, doing my self-directed physio, tVNS, Reiki therapy, meditation and more has been put on hold because so much time and energy is spent dealing with this.

02/09/2025

All this started in April. I can’t tell if it’s /allergies or infection. Colloidal silver has brought some relief, but it gets worse after applying anything, even water, and keeps flaring up.😩

- My eyes are a mess: irritated, itchy and gunky with annoying floating black/white dots & threads.
- My ears are blocked yet I’m somehow more hypersensitive to sound & tinnitus.
- My skin is erupting with warts, skin tags, fungal infections, welts & hives.
- Chronic Thrush & BV keeps coming in waves.
- Temperature dysregulation is the worst it’s ever been.

The little things add up and the Tube/Fistula saga continues.

On May 12th I received a letter stating that my local hospital are contacting thier GI surgeons. So I spent a month working on a detailed email basically pleading my case across. No response yet.

15/06/2025

Not surprised by this in the slightest. The pill has so many side effects. I was put on it at age 14 for my heavy painful periods without anyone informing me of the risks. Was on it 8 years before I stopped because I couldn’t administer it (feeding tube complications). I was thinking of stopping anyway but worried that it would worsen my MCAS which can flare during menstruation and was gravely ill at the time. I’ve now been off it 4 years and still haven’t had a period. I believe I’m in premature menopause but don’t know if it’s because of the pill or the HPV vaccine which triggered the gyne issues along with chronic illness and need for the pill as symptom management in the first place.

Literally nothing is safe for everyone & if you need to take pharmaceuticals (because it’s not *always* possible to go without) we are a part of one big experiment.

Important to know 🚨 Read more: https://trib.al/kVpjhKO

07/06/2025

Thanks to those wondering how I’ve been doing. I thought I had already posted this in March… but perhaps I fell asleep whilst I was reading it through and never published it. Ooopssiee! 🤦🏻‍♀️
To avoid overwhelming you with my babble and instead of delaying further trying to edit / combine them, I’ll schedule the more recent updates separately.

I’ve more or less been on a gradual decline since I was forced to reduce my hydrocortisone dose (which my private specialist increased for a reason) based on one high cortisol blood test done randomly in hospital *after* my two steroid doses! It’s only 5mg so it could be a coincidence… but I have refused to down it anymore until endocrine actually see me because I feel so odd and get all the adrenal crisis symptoms; especially after screaming in pain and/or overexerting (which literally happens just by talking.) My GP noticed the difference and agreed they have not handled it appropriately and should do more investigations as they’re going off nothing but ‘guidelines’ rather than individual patient experiences and there’s still tons of hormone tests which were abnormal years ago that the NHS haven’t acknowledged. I’m also yet to have my pituitary gland/brain scanned [to rule out a hormone secreting tumour] despite being in hospital several times and undergoing CT’s for other things. Very frustrating.

Fatigue has been extra bad latlely, turns out I’ve been deficient in both Iron and Copper… since August! So that’s likely something to do with it! Why we have just been told now, and this wasn’t addressed during my last hospital admission, [or maybe it was and this is old news] we don’t know… but my nutrition pharmacist kindly contacted us mid-November and asked if it was okay to add the specific supplements to my next TPN (as she remembers that I have many intolerances.) We were hoping that doing so would’ve given me a slight boost in time for Christmas, unfortunately no bloods had been ordered therefore nothing was added.

Whilst on the topic of nutrition, we had a call with the nutrition nurse on the 8th January. Once again it was not the consultant who is supposed to be specialised in fistulas. The one that was supposed to answer my questions since February last year, scheduled to come to our house in September but cancelled using the excuse of my GI bleed and “talks between Cheltenham & Bristol hospital”. But, once again, communication seems to be non-existent. The nurse wasn’t aware of the outcome of any discussions. The team wasn’t even aware that I had 2 blood transfusions… and that could have been very dangerous if iron was supplemented without the repeat bloods I’ve been requesting beforehand.

There’s still no news about this fistula procedure and I’ve only got a few doses of fentanyl injections left because my GP can’t prescribe those either anymore… despite the hospital saying he could. Infact, I apparently shouldn’t have been allowed home on them. But the acute pain team consultant in hospital authorised it due to no other analgesics suitable for me AND because she thought it would be short term— in her mind, nobody could possibly leave someone in this much pain with a fistula after having a severe bleed? Everyone thought it would be sorted in a few weeks. But here we are (now 8 long traumatic months later) and not even another appointment booked for the consultant to do the initial consult with us on the phone or at home.

Thankfully, 23rd December I had a video appointment with the local Chronic Pain Team, who were actually very helpful and understanding. Two consultants attended from different offices and listened to my mum first before being introduced to me. Consultants rarely do this, so it was a major win that I didn’t have to discuss my entire history before answering their questions and listening to my personal ramblings to fill in the gaps. They were empathetic of our situation, didn’t rush or interrupt me and raked their brains with how to help me. Most importantly, I didn’t feel like they were going to commit me for getting upset! They understood that I’m desperate for relief, not abusing the Fentanyl and opt for the lowest dose, but due to risk of abuse/addiction/overdose in the community they can’t continue to prescribe it. Before having a break from the call for 5 minutes they went through the holistic / non-drug methods with me, but it wasn’t psych focused. They came back to say that they discussed and agreed to 4 more vials to tide me over Christmas as long as Narcan was in the house. So they prescribed that plus paracetamol suppositories to try, even though we don’t know if I’m okay with them as it has completely different ingredients to the diclophenic ones I was previously on. We need to contact the manufacturer to determine what the main ‘hard fat’ is derived from and patch test castor oil on my skin before administering.

They put a stellar 3 page letter together which I hope will encourage my GI teams to do something faster. And I have a follow up booked for end of January... THATS the type of doctor(s) I need in ALL specialties!

The UTI/bladder situation is ongoing. I already have a pre-existing diagnosis of Fowlers Syndrome & Interstitial Cystitis, but ever since I was left without fluids for half a day + the CT contrast dye in September this has been extra and bothering me a lot. I’m pretty sure it’s also contributing to me not feeling great… but I’ve not been admitted for IV antibiotics.
�Medics seem generally worried about me becoming resistant to the reduced amount of IV antibiotics I can tolerate. Because if - or more likely when - I get sepsis again, we’re even more limited. I will eventually succumb to infection because nothing will work. So I understand that, it’s super scary, but how are we supposed to safely navigate this? I want to PREVENT going septic, not just wait and see!!! I can’t even try anything like prophylactic antibiotics or alternative treatments (D-mannose) down my J tube because it’s still displaced and won’t absorb anyway due to the fistula/meds draining out into the bag.

My GP was initially reluctant to treat due to lack of tick box infection signs (don’t get temps that stay or high CRP in blood etc until septic) and said my samples were just ‘contaminated’ but he has looked into it more (as have I) and turns out that studies show Standard Urine Cultures are only 50% reliable and contamination can mean more than one bacteria present or ‘biofilm’! He has since wanted to treat me but can’t physically prescribe the drug(s) and nor can community rapid response team. They could 6/7 years ago which was the last time I had IV Gentamicin at home but there’s been policy changes. So no wonder why hospitals are overwhelmed… it’s so silly.
Anyway, after failing to get a consultant I’m under to prescribe it and a home IV team to administer, my GP contacted Urology & Microbiology. I was eventually prescribed a treatment to irrigate my bladder. A product called IAuril – a Sodium Chondroitin Sulphate solution. It’s essentially as natural as a pharmaceutical can get and was recommended to me in 2023 by a specialist nurse. Someone I follow online has also had success with it. We thought we would have to find a private urologist and pay for it (£85 per 50ml instillation) as my GP was initially blocked from being able to prescribe it… but we managed to get it on the NHS in the end. Good job really as we only have half of that amount remaining from fundraising.
Hopefully I can start this treatment soon as it can take up to 4 treatments (4 weeks) to have an effect on the pesky biofilm. It would be so great to be able to get rid of at least one long term problem!