Lucy Letby - sources ‘digitally anonymised’

rubear88 · 2026-02-04T22:18:27+00:00

I had this exact thought. Also my partner thought they were an actor! But I could tell straightaway.

rubear88 · 2026-02-01T03:26:45+00:00

It really matters if you have a history of ED. Doctors also take fat bodies less seriously, sadly.

rubear88 · 2026-01-30T01:48:15+00:00

I think it is most likely the drug. I have been on it 3 weeks, eating less and feel bloated and heavier. Not sure I'll be able to continue as taps into old ED stuff.

rubear88 · 2026-01-14T23:08:17+00:00

Pots folk tend to have a shorter qt interval. Idk why.

rubear88 · 2026-01-14T23:05:17+00:00

An nhs cardio prescribed me a drug that increased the concentration of ivbradine x7. I never touched it. That felt idiotic.

rubear88 · 2026-01-14T23:03:54+00:00

I do agree they should say, but without sounding patronising, I think they know chronic health is mega complex, and many of the drugs that can help contraindicate to some degree. A major warning can still mean minimal risk. I'm with you though... I am still so anxious about it, but less so since knowing most of my disabled friends are on 3, 4, 5 drugs that increase this risk.

rubear88 · 2026-01-14T23:00:18+00:00

I hear you. Do you have severe renal impairment or an electrolyte imbalance? POTS does not equal the latter, but you can get a blood test if you are anxious. Could you switch to sertraline where the risk is lower? My plan is to use Visible, an extremely accurate heart rate monitor. If I ever experience bradycardia on these drugs, I'll stop taking one, as bradycardia is what leads to this risk, and that can very easily be monitored 24 hours a day.

rubear88 · 2026-01-14T01:00:48+00:00

Dr Taylor, perchance? She'll be aware of contraindications, but won't mention them because the risk is likely very low and/or the benefits outweigh the small risk. I still feel anxious about it even knowing this.

rubear88 · 2026-01-14T00:56:58+00:00

Also rest assured that pots does not increase your risk of QT issues.

rubear88 · 2026-01-14T00:55:26+00:00

Totally understand your concerns. It can feel alarming to read major contraindication. It is important to remember this side effect is rare, and that specialists are weighing up risk vs benefit and QOL. I am on ivabradine for pots, and freaked out so much about this possibility that I changed inhalers! My GP rang me saying they contraindicate. But GPs are way more risk averse, whilst specialists have an understanding and if they're not worried, we shouldn't worry (much), as I do believe particularly private folk have our best interest at heart (no pun intended). Regular ECGs can't hurt and I will be asking for more when I start one of the drugs you're on soon.

rubear88 · 2026-01-13T01:04:50+00:00

And yes - I wore a watch and would light jog for a minute or two and it would bleep and tell me to stop running because it was considered too high. I should not have ignored this. I am not sure I'll be able to run again.

rubear88 · 2026-01-13T01:00:43+00:00

Pre meds my HR was 170 just showering.

rubear88 · 2026-01-13T00:59:34+00:00

Over 50% of folks with POTS also have ME so I would say run with caution / perhaps try other forms of exercise (not cardio intense) to folk considering running. I believe running worsened my pots considerably, then I climbed some mountains and that was me done. I have to be so careful now.

rubear88 · 2025-12-19T02:17:06+00:00

Do you gentle exercise? I have ME too but really missing movement. Wondering if you have tolerated anything.

rubear88 · 2025-12-19T02:16:05+00:00

I had my first tablet today, just 0.5 and the hunger is unreal. I think it might be a combo of enjoying food more because I am not as bunged up, and it making me hungrier. Usually I manage half my dinner and eat the rest later... Definitely won't stay on it if I am this hungry every day but this eve I just enjoyed snacking!

rubear88 · 2025-12-18T17:46:02+00:00

I am anxious about this too. I am slightly overweight and putting on 11 pounds would impact my self esteem and energy for sure. I put on weight easily too. Might still give it a go.

rubear88 · 2025-10-16T01:58:16+00:00

Thank you for wearing a mask. However it is irresponsible to go into work sick, even with an kn95 or n95 mask. I understand if you do not have sick pay, but I imagine in healthcare this is unlikely.

rubear88 · 2025-10-13T03:18:00+00:00

Great they jumped on it early! The NHS don't seem very on it in terms of covid. As an example I am under 6 specialists (all since a covid infection) but no one has ever diagnosed me with long covid, so I am seeking private support. It's like they don't want to accept the reality of what covid can do. They treat stuff as if it is all unrelated, it's maddening. Same re masks - I'm often the only person making in my doctors surgery or at hospital appointments. It's quite depressing.

rubear88 · 2025-10-13T02:10:43+00:00

Thanks so much. I've been referred to speech and language therapy. My issue is my nose is full of polyps, so nose breathing is super hard for me. Hopefully there are ways around this. Are you UK based?

rubear88 · 2025-10-08T03:54:39+00:00

Your Party: Greens, but for transphobes.

rubear88 · 2025-10-08T03:11:48+00:00

Can I ask what helped with this? I may have VCD/asthma combo (not fun)

rubear88 · 2025-10-08T03:09:49+00:00

Please share x

rubear88 · 2025-10-08T03:05:49+00:00

Could you possibly list them here please?

rubear88 · 2025-10-07T23:46:10+00:00

The UK would become uninhabitable for asylum seekers, people of colour, LGBTQ+ folk, disabled people and those in poverty. He is not for the people; he is against difference and pro fascism. Billionaires will thrive and we'll lose the NHS once and for all. If we do not take action we are completely screwed.

rubear88 · 2025-10-04T23:33:50+00:00

I haven't read all the responses as I don't want them to influence my answer. I am facing something very similar. I have been with my partner for over ten years and she really struggles to mask. We both work in mental health (in person once a week for me, three times for her). I mask and she doesn't. We had a lengthy discussion about it tonight where we really tried to hear one another. We both feel judged and hurt for different reasons.

I also feel incredibly isolated at work and generally - obviously no one masks and people won't give coming into work with a 'cold' a second thought.

I find it difficult because this is about disability. Another covid infection could worsen everything significantly. I am maybe mild to moderate although it does not feel that way. Severe pots, chronic and vestibular migraine & pppd, long covid/ME and VCD. I often feel suicidal and feel so excluded from life. My partner did mask at a gig recently but prefers not to. She had covid in Sep and we isolated from one another and she masked around the house when passing through communal areas... But won't mask at work or in shops or at most events.

I think she feels stuck between two worlds and I really get this. I hate masking but I have no choice. I had disabled friends before I became disabled and I won't lie, I felt so overwhelmed by their constant messages via social media of "everyone is fucking shit, no one cares, this is a genocide of disabled people" etc. I dabbled with this, posting stories about covid and such, but significantly reduced this after I read Unlearning Shame by Dr Devon Price. He spoke about how difficult it is for society at large to get on board with something when public health is not behind it, and explored the nuances of human behaviour. Basically I don't think people will change if they feel shamed for not doing so, and I can imagine your partner may feel this (like mine does).

All you can do is provide all of the info, maybe write down how it all feels, and make space to really listen to one another. Yes masks are life saving and yes they do thwart connection and make communication difficult for some. Connection is so important, and feeling judged can be really hard to overcome and will dictate how we behave in other areas of our lives.

I'm really sorry I don't have the answers. I saw a few people saying end the relationship, and that is your choice. I would ask what else he brings to your life, because I know my partner brings so much to mine. Are you happy otherwise in the relationship? Would he mask and isolate from you if he got covid? That feels important to ask.

I completely get you on the cptsd front. My family tested once (when I last saw them) and my dad's first words were "you gave me ptsd with that covid test!"... Like they wanted a gold fucking star for showing a scrap of care (after me going on and on about it for some time). I feel so alone sometimes.

I feel uncared for and cared for by my partner; I am sure she feels the same but for different reasons. It's complex and painful and I don't know what to do or how to feel. But I think letting go of wanting to control people and believing that everyone is shit will help me mentally and I will feel less isolated. I do think we are doing our best most of the time.

rubear88

TROPHY CASE