Cella Marshall, England, UK
Where do I start?
I think I’ll start with today. Friday 11th September 2026.
Broached the topic of Hydroxychloroquine with a Consultant yesterday, finally – it’s been sitting in my head a while, and needed to find the right time. It just so happened that instead of my Gynaecologist who I was scheduled to see, it was Dermatologist H who came out to get me from the waiting room. Which meant I was in luck re the medication request that I’d been wanting to email through somehow – not so much luck perhaps re the gynae/hormones. However gynae biopsy was taken. (Had had biopsy at previous hospital 2013)
(NB FOR ME – I was going to ask Gynae at the appointment yesterday to ask Derma, (though then also thought maybe Gynae would be able to prescribe perhaps, also just remembered we discussed Immunology) based on previous Gynae appt where I was to see Derma, as I had spoken of systemic situation when discussing my scalp biospy results as they were saying this happens with straightening chemicals, however I also have Urticaria, dermatographia and the LS, plus the now stuff. Gynae S wrote a letter asking H to see me again and an appointment never came through. I was so busy chasing pain relief and sorting Urology and Pain Managment, that I was in no position to chase.)
Prev private Rheumatologist offered Hydroxychloroquine in 2017, and I then went on to see NHS Rheumatologist who wouldn’t prescribe and then it all got lost, she also wrongly said I had a very positive Lupus LAC. I believe it was erroneous anyway, I haven’t checked myself, but as per Colorectal G’s lovely 2.5 page letter about me, it is. What a spiffing chap he was – 🤨
Still Friday, actually it’s Saturday as its 00:41
I have been in so much pain. That’s really an understatement. My skin and scalp (plus biopsy stitches area). I really can’t actually explain how much or what the pain is like. It’s all encompassing, eyes welling in the shower, which I’m having due to the pain, trying to wash the scalp to make it less painful. I’ve been plucking my scalp with the tweezers again. First used steroid Synalar gel, then lidocaine, then washing, then plucking. I’m feeling pretty worn out now. The skin is painful all over, it’s massive urticaria attacks without me scratching all over so the welts don’t come up like whips. Not much to see as I’m a non scratch pro, but a LOT to feel. Going through the thoughts of wish it hadn’t happened, why, blame, anger, sadness, extreme sadness. What a way this turned out. The earth chipped me up, churned me and spat me out.
Sunday 13th September 2026 12:46
Well, weekend has been a haze of pain – constant, itching almost constant. And a strange numb feeling in me that I just can’t do this anymore, but I have to. Wrack my brain to think what I can do to heal – it’s been 16/18 years and I have got no where with it. Apparently. Every single movement and non movement is pain. I feel very disabled. Almost worse than usual and I don’t know why. Unfortunately my brain thinks of how this all happened and if I’m even correct and then I gaslight myself, but I think really the horror is real. It did happen similarly to how I believe and it is horrific, but only to me. (and my children and husband and mum, hopefully my dad doesn’t think of it often or deeply). It’s not horrific to Mr G (Colorectal from 2015), Mr R (2nd Colorectal but Mr G colleague 2017), Dr V (Gynaecologist from 2016), Dr D (Gynaecologist from 2016), Mr J (Urogynae from 2016), Dr S (General Practitioner from 2016). Nor those before Dr A (SHO Maxillofacial Doctor 2010) and all his colleagues. And perhaps the worst though I didn’t think that at the time, Mr F (Consultant Maxillofacial 2009) who had he just taken out my tooth, I don’t think any of what happened after would have happened, but he said “You’re a pretty girl and I’d hate for you to lose the tooth” – a number 5 tooth which no one can see. By the way, it’s out now.
NOTE TO SELF – sounds whingy, revist this when I’m having a less painful time – if ever.
Sunday 20th September 2026
Yesterday mum and dad and lil nephew came over.
We all had big giggles about what happened with Julian getting in a car with a stranger last night. Though I was very cross at the time. The giggles were as follows Mum – I don’t know why he would be such an IIIIIIDDDDIOT… and then I said while agreeing oo well actually I did get in a car with my friend once… and then mum went ooo yes so did I (her elder friend was hitchhiking) and we all started laughing so much.
I put on Jeff Buckley Mojo Pin Glastonbury 1995 YouTube Dreambrother86A, told them it was my favourite song at the moment. Mum said oh thats Jeff Buckley, and I said huh? You know who Jeff Buckley is and she said yes I like Hallelujah and have his CD. We had a giggle as I said how did you get it, was it the Daily Mail? And we had a giggle. I genuinely thought maybe it was as they used to do CD giveaways I thought. She said she can’t remember where she got it, a few years ago she thinks. Chatted about the message regarding an important someone. Listened to music in the lounge on the TV and while mum was doing something, Julian and Grandad sat on the sofa singing House Of The Rising Sun together while it was playing on the telle. I was singing along too. It was a lovely moment listening and knowing they were sat laying out on the sofa together having their moment too.
The Shadows – Apache (1960) YouTube Classic Hits Studio YouTube
The Animals – House Of The Rising Sun (Music Video) YouTube Timeless Music
The Shadows – Atlantis (1963) YouTube 75 Attila
The Shadows – Wonderful Land YouTube VanAllesWat33
Monday 21st September 2026
What a week. Have been involved in “the situation” since Wednesday full on – see my general diary that is pink cal.
Woke feeling very hard to stabilise. That horrible head thing again. Just waking up like have been stranded in a desert for a year and yet you have to walk. (Wee’s and letting dogs out). Drinking water helps.
That sounds like a joke due to the desert analogy but it’s not dehydration, I don’t think anyway. Do I really know anything about any of it?
NB TO SELF – want to listen to more audiobooks like The Bell Jar, if I’m struggling with dopamine re what to do. TV I very much struggle to find anything to watch now and also my concentration for getting into TV shows is very limited – I don’t know why.
Lola came to see me yesterday, I probably called her up, she had had aa argument with Father, she lay listening to Jeff Buckley with me while I had my arm around her and stroked her arm with my left hand. She was very upset – that hurt upset crying I remember well.
I’m going through my Facebook at the moment, something I’ve been meaning to do for ages. I don’t really want pictures up of my children anymore. Nor any stuff I wrote when younger that I wouldn’t want my children seeing if I was dead or whatever.
3.5K posts is a lot to get through. What was I doing??
All and I mean all of the posts I’m scrolling, I know exactly what was going on about the health situation and it’s like scrolling past years of misery. It’s all misery. Fighting for medical care for a situation that had itself developed through the way my medical care had unfolded, while living in the resulting unbearable physical pain.. every minute of every day, is a different kind of torture.
My skin is bad and I should take my antihistamines. But I don’t want to.
Just scrolled past Sol in a video, unbarable.
Saw post 8th April 2014 Dad had his accident.
Sunday 27th September 2026
Today is going OK. Though I just had a bit of a feeling of oh no I may feel a bit anxious right now, what if it’s starting. That’s because last night (evening) I had a really bad anxiety run. Basically it goes like this ‘I feel like I’m dying almost every day because of my physical symptoms, even though I don’t actually want to die. I’m becoming completely frazzled by constantly feeling as though something catastrophic is happening’. – That’s the anxiety I’m having.
So as I just got a wave just now of heat like hot flash wave – an ill sensation, it’s reminded me of what happened yesterday evening. I was feeling this wave for (just took a propanolol 10mg 14:32) a good few hours which was unsettling. And then I think it must have triggered off my alarm system in my brain which then made me get the derealisation – which along with the visual snow I now have as of end of last year, then goes down in a spiral, and I guess more adrenaline is released which then produces more derealisation and then its just a horrible awful horrific feeling of like very uncomfortable fear feeling, I can’t really describe it but its awful. I felt like I was going to go into a near full on panic attack. It didn’t reach heart race. But I was having a lot of weird heart sensations and an electrical cold zap in my left chest.
‘Something feels wrong > adrenaline > dizziness/weirdness > derealisation’ (plus the visual snow which makes it harder to come out of the derealisation) > ‘OH MY GOODNESS > near panic attack’.
Just drank water – tried to do the 10 sips per drink thing – got to about 6.
So I think last night, after surviving the hours of panic and near of a panic attack, I drank water, took a propanolol and then went to sleep cuddling my pure wool grey cardigan and holding my felt keyring. – I know sounds like pathetic I guess, but hey it is what it is. I woke up feeling a lot better. Back to ‘normal’.
Had Doctors appt Thursday at 4pm – Doctor coded me as Chronic long term disease management required: complex needs. When I read that I thought huh? I’ve been this way for at least a decade (2016 is when I became completely disabled). – ‘I didn’t feeel like I was telling her anything particularly extraordinary, but she did hear
Daily colonic irrigation and ongoing abdominal pain (with OMAD at the moment plus tea and cream)
Urinating at least 21 times a day
Persistent vulval and scalp problems, with several specialists involved
Chronic pain requiring medication
Urticaria attack full day (and night) yesterday and other physical symptoms
Months of feeling generally unwell (longer than that geeeee but re the chills)
Visual disturbances and episodes of derealisation
A recent episode of chest pain
Previous fatty liver concerns and the need for further blood tests
That’s a substantial amount of ongoing healthcare to manage, even without all the other symptoms I didn’t mention’
‘ I explained the effect of living with so many symptoms. I said because I’ve been ill for so long, I struggle to know whether something unfamiliar is serious. That uncertainty can then trigger panic and derealisation (where everything looks dream like). In other words I wasn’t just describing my physical symptoms. I was explaining how my longstanding illness affects my ability to recognise and respond to new symptoms.’
The reason I find it difficult to understand why it was coded this time is that for me, nothing about Thursday was particularly unusual. I was simply describing my life. The code may have been new. My circumstances weren’t”
Don’t quite know what the code means though. Regarding ongoing care, whether it’s for me or them or both…
Doctor doing bloods, earliest I could get in at the desk was 20th October. Fib4, FBC, Viscosity, CRP, Thyroid, Rheumatoid Factor, eGFR etc
Sunday 4th October 2026
Wanted to note down some good stuff as it’s been one hell of a usual chronic illness week. With rumination. I still can’t believe that what happened happened. This is what happened to my life re the pain and my body being changed. When it all could have been so simple maybe.
Hubby said while kissing my right cheek last night “I do love you so much” at the end of a long embrace ♡. And then “You’re so pretty”.
This evening – late well around 1.30/11pm maybe, I’d re done my make up and put on a big headband (tudor style / colours) with a black cap covering it, then a thin cotton black scarf tied around from the back – up, and tied off to the left at the front, in front of the headband. Then I’d used high shine pomade to dampen down the back fluff at the back of my head which can’t fit in the scarf and is about an inch or so long.
Sunday 11th October 2026 13:40
Got frustrated as hadn’t done my hormones again. Why can’t I remember anything??? Makes me feel angry.
Woke feeling poisoned again, and abdo full feeling, but I irrigated yesterday? – Oh yeah I was going to do an extra bag yesterday but because the metal hook that hangs the bag was squewif and I thought I could just still reach it like that, but couldn’t, the whole 2 litres ended up on the floor, 3 towels soaking it up. Aborted that idea.
Ate quite a lot of cream yesterday, extra thick double cream with sultana scones, cream in coffee and ate bon bons. I didn’t like it. I guess I’m feeling extra sensitive like the old days re eating as I’m not on the MJ now. Have a blood test and I want a true reading re cholesterol etc. We’ll see.
Scalp was so bad last night that I couldn’t put my head on the pillow, the hair growing touches it and then when the hair presses on the pillow and then I try and move my head to try and make it less painful and then keep trying to move my head as NOTHING is less painful. Gave up after a good ole time of this and had a shower. Constantly in pain, it’s actual torture. I’ve just remembered I was thinking in the shower last night and checking for lumps and felt one, probably fatty, but I thought who cares if I have a lump, at least that is a way out, which is so sad because I love life, the theory of it.. without pain. So gave up caring. It’s probably the best way.
Will I ever forgive (long meaning to the word – of course I forgive them, I don’t wish harm on anybody, but I knooow that they completely failed me with what I needed at the time. A tooth out, some care and not to be bounced around or given Augmentin while pregnant. Back to the consultant I had seen would have been “nice”) the SHO, the MaxFax, the colorectal, the Gynae the GP, the other GP, the processes that didnt work the people who didn’t need to care. My life is pure pain now.
I can go over and over and over it in my head every day and guess what nothing changes, I’m still in pain and they’re still living their lives as if nothing ever happened (potentially). And I’ll be in pain forever. I don’t mean that as in I don’t want them to be living their lives, I mean look at the juxtaposition .. they don’t even really know how BADLY their choices affected me. Yes I could have been less stressed, I could have I don’t know what could I have done? But the facts are they are the ones who had the “power”. The knowledge, in that situation. I had been dealing with an eye / facial infection for 2 years unbeknownst to me at the time, and then was scared and suffering in my pregancy with it. They had seen me before the pregnancy they should have known to send me back to the consultant, but ego I think, got in the way. As my Doctor said, “no one is willing to take responsibility of you because you’re pregnant”.
Look what that did. Agonising pain forever more in this human body. My body completely fucked and a lot is invisible, a lot not, I have many horrific photos. But who actually cares?!
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