u/Quiet_surprise79

Hi all,

35f, diagnosed last year in April.

(ETA: low risk, but high symptom burden with bone pain and fatigue and before clopidogrel, migraines).

I have a feeling this isn't linked but I wanted to hear from others. I have had what I thought was just a common cold but it's been clinging on for over a week now, and it seems to be getting worse again. I feel awful today. I'm not ill ill, but I have no energy, my throat has been "gunky" and a cough that's come and gone, along with on and off mild headaches.

I haven't been ill for a while but when I had covid two years before being diagnosed, it took me out, despite being a relatively healthy 31 year old at the time. I did smoke, but my partner at the time who was a much heavier smoker had an easier time than I did.

I stopped smoking over a year ago now. My overall health is a little worse due to a variety of factors impacting exercise which I know won't be helping, but I was wondering if it's normal that we suffer a little more when we are fighting common illnesses? If fatigue maybe plays a role?

I'm low risk and only taking clopidogrel.

Any feedback welcome!

Hi,

Today I've had a reaction on my face to my normal shower gel (Sanex skin therapy oily skin). I have been using this for close to a year without problems before. I don't wear makeup or use exfoliants or toner etc. I use this and usually moisturise with vaseline aloe moisturiser. I did recently use some vitamin C cream which I have used before occasionally (Garnier) but I mean like 3 days ago. This hasn't caused lasting problems before.

My skin is red, blotchy and itchy (not hugely, but definitely irritated). As far as I can find, random reactions like this to known products may be down to a damaged skin barrier?

How can I fix that? I unfortunately get hormonal spots and my skin is usually oily, although I have noticed it seems a bit dry this last week. I think I'm drinking plenty of water but am on medications that give me dry mouth, so I don't know if that is a factor.

I've tried to improve my skincare previously but everything I touch seems to go well for a few days and then I breakout worse, or get SUPER oily, or dry. Most moisturisers I've tried feel too "heavy" and I end up rinsing my face after an hour or two because it just sits on top of my skin feeling gross. The vaseline one generally works well but now I'm concerned it's not giving my skin what it actually needs.

I'm in the UK if that helps with recommendations! But maybe I should be considering a dermatologist? Any advice welcome.

Hi!

I tried to post the other day and got sign posted instead, which was actually extremely helpful and I've been reading through the material. But when going through the info, I've become a bit lost.

I'm on an extremely low income, no debts etc and looking to start saving an emergency fund. It'll be small and irregular amounts, up to £200 but probably closer to £50 to £100. I can't find advice specific to starting savings like this. The default assumption is that someone is able to regularly save and has a normal income, or has some kind of assets already. None of that applies to me.

I can see that premium bonds don't seem to be worth it unless you have a decent amount in them, and I can see that regular savers have higher interest, but there may be months when I can't afford to put anything at all aside.

I have a flexible saver linked to my current account, but I mostly use this to put money aside when it comes in, then transfer it back when I need it. I think I would benefit from something more separate. It's also only got a 1% interest rate.

Is my best bet to find another flexible saver/instant access savings account with a better interest rate?

No, it's not every single pattern request. Most of them are AI. But when it's not AI? It's granny squares.

And yet, if someone were to say "hey, where should I start?" Half the replies would be recommending the humble granny square. So why are so many people asking for patterns for things made of granny squares? 😭.

Go on Ravelry, YouTube or Google and search for "granny square top/cardigan/blanket/bag/etc" and I promise you'll find the exact same thing or something very similar. Use the same colours as the pattern you want and *bam!* You've got your product.

When did granny squares become such a mystery?

Disclaimer: I don't have "a plan" but there are several options available to me and I'm convinced I'm going to snap and commit to one at some point. Has psych referrals, waiting for one to one therapy, no actual assessment despite more than one referral asking for one.

I'm fairly sure if I go, it'll be "oh we just didn't see it coming!" Because now the referrals have gone nowhere, I'm doing my fucking best to drab my ass into action. I don't present as typically depressed. I have interest in things, but I also have this "bigger picture" view where it feels like interest doesn't equate to wanting to stay alive, because those interesting things will still be interesting after I'm gone.

I am currently trying to exercise more and I am actually physically getting into shape (happens fast for me when I actually try). But instead of trying to get into shape because I want to stay alive, I'm doing it to try and find a reason to stay alive, but it doesn't actually make me feel anymore than a very surface-level brief smile, and that smile doesn't mean a damn thing when the rest of the time I'm having panic attacks or thinking about death and being unable to see a way out of my shitty life predicament.

I have no support and I can't access support because I can't have a panic attack in public, so I don't go out instead. No one sees the symptoms of my mental health because I can sit and have a conversation with the GP and then I'll get home and totally dissociate for several days.

I can do the exercise but then I'm living off one tiny meal a day for 3 days because I don't have the cognitive function to cook. But exercise is supposed to help, so I'm doing the exercise, feeling as empty as I was when I wasn't doing the exercise. I still want to die. I guess I'll just look better when I do now? Yay for whoever finds me.

Does anyone else feel this? You can function, but you still don't want to live?

I didn't actually self harm when I was deep in a depression pit because I didn't have the energy. I only did it when an SSRI put me in an activated state and I was getting outside again. Things are more dangerous now I'm doing the things. Anyone else?

Diagnosed ET JAK2+ in April last year at 34f.

I get bone pain in my shins sometimes and I assumed it was the ET, but it only seems to flare up either when I'm particularly active (like today) or when my hormones are going wild.

I had some undiagnosed hormone craziness in January this year that included intense and ongoing pelvic pain, and during this period (overall went on until about April although thankfully the pelvic pain was resolved before then), my shins were so painful every day too. Things are under control with birth control that I shouldn't be on (started April), and I realised the other day that I hadn't felt any shin pain for a couple of months, at least.

Tonight it's back, but it's come on after a particularly active day. I've had a lot of mental health struggles this year and being active has been a bit hit or miss. I'm trying hard to prioritise it for the sake of my health, but I get fatigue a lot (almost definitely exacerbated by the mental health problems), and I've noticed it seems to trigger the bone pain.

Does anyone else experience similar triggers with bone pain? I just put it down to ET before but I'm starting to wonder if the bone pain isn't actually related to my ET??

Okay I thought I was doing better but I'm actually just *masking* of course.

I've been referred to CMHT twice recently. The first time, during active self harm, without any input from me i.e. purely based off my GP referral, they pushed me off onto psychology, who have stuck me on a wait list for therapy. The second time, with the worst of the self harm, they said "nah our decision stays". The psychologist only asked about CPTSD symptoms but I'm almost certain I have BPD or something else and that's why all the CPTSD therapy and things I've learned aren't working.

For a moment, I was determined to go at it alone and do my best to find my own DBT resources etc because that is a thing I often experience when I feel rejected by mental health services (which has happened again and again). But the reality is my life has been on a downwards curve for years and I don't actually have anything to stay for after that event, or anyone. I've successfully isolated myself besides my triggering living situation that I can't actually get out of. But I know I won't do anything before that event.

So now I don't know what I'm supposed to do. I have no support. I've done the things I was supposed to do to get help through the NHS and it isn't fucking there. Once I decide to do something, I won't reach out, but reaching out preemptively has done nothing.

I really need advice, while I'm still able to act, on what I'm supposed to do now. What did you do to get actual intervention? I barely leave my flat, any little difficulty sends me into a full blown panic attack (which have been a problem for years as well, but not to this extent).

For added context, I have been struggling for my whole life due to childhood crap but I now understand that I have always felt and seen things differently than other people too, and that is what I'm struggling with now. Besides CPTSD, I meet the criteria for BPD but I also relate heavily with autistic traits, but I'm aware that could be trauma that looks like autism. 5 antidepressants haven't helped. I'm on 50mg seroquel but think I need to come off due to some worrying side effects, but I have only realised how bad my sleep was now I'm getting more. It stopped the self harm cycle but not the suicidal thoughts. I tried taking one during the day as per GP instruction and it turns out I fucking hate feeling sedated when I'm not supposed to be sleeping, and had a panic attack.

I don't know how I'm supposed to want to live long enough to even get the therapy I'm waiting for with absolutely no support in the mean time. I've done the self referral therapies more than once. They're not made for complex issues so they don't have an impact.

I posted a couple of weeks ago but I can't find the post to update it. I applied for ADP on 1st June and just got my decision by post today.

I'm happy to find out I've been awarded standard daily living with 9 points. I think I technically qualify for the enhanced category as I feel they underscored me a lot on engaging socially and I also got 0 for taking nutrition, but that's something I struggle with quite a bit. That said, I'm already spending a lot of energy trying to access services to help, and I'm just happy to get something and that the process was relatively straight forward for me. I wasn't expecting anything for mobility so I'm not surprised at only getting 4 points there.

I'm on LCWRA UC as well, do I need to mark it as a change of circumstances or just via journal message or something else?

It does make me wish I'd applied a couple of years ago but that's the problem with some illnesses. You convince yourself you'll get better and then you don't 😅. I've been on LCWRA since Jan 2024 thinking I'd get better.

I thought I'd share a reasonably positive story. I was dreading the idea of 0 points or not enough on daily living because I know I definitely meet the criteria for it, and the extra money means I can afford two support services that I couldn't before, which is such a relief.

Not needing support so much but curious if this is something people with BPD experience or not.

It's just clicked for me that I only feel real when I'm feeling intense emotions. I do experience dissociation as a result of extreme distress, but I also only feel connected to myself when I am in extreme distress, or feel consumed by love for someone, or overcome with excitement for a unique experience, or feel tragic in myself and hurt at everything I've been through.

The rest of the time, it feels like I'm just bobbing along, existing. Everything feels wishy-washy and detached. None of it means anything.

E.g. I have a complicated "thing" with someone at the moment. When I see them, I will feel intense love and everything will feel real and right. When I'm not with them, I don't feel connected to those emotions, and life in general feels flat and detached.

Equally, I recently had a period where I genuinely felt I reconnected with myself because the distress got so intense that it triggered a really, really dark place. I had this like, inner-quiet because it felt right and normal.

Once I came out of this, I returned to the same flatness and disconnectedness.

This is a pattern that has spanned my entire adult life, but I've only just realised it. I think I had the flatness confused with dissociation, because (I thought) I experience different "types" of dissociation. The type that comes when I'm properly distressed, and the "baseline" dissociation I usually feel.

For context, I've tried to get referred to psychiatry to be assessed for BPD and/or anything else but they have pushed me onto a psychology wait list. I do have CPTSD, but haven't seen much on this kind of presentation in CPTSD. I don't currently have a mental health professional to talk to about questions like this haha.

Hello,

Hoping this post is allowed (new to this sub).

I have Two Point Hospital but I LOVED the original Theme Hospital and the changes just didn't quite hit the spot for me, so I quickly lost interest.

I am wondering how Two Point Museum stands up? I have read that it's got a different feel to Hospital and very much feels like its own game. It's currently on sale for £16.74. I don't spend much on games, so I'm wondering if it's worth it?

Thanks!

Hi all,

ETA: I am aware of DBT, sorry I didn't include that! I am unsure how to judge that a private therapist will actually do it well but extra resources appreciated.

I need whatever you have for non-NHS help for an ongoing probable BPD crisis (but not crisis resources, I am aware of all of them). I have tried and tried and tried to get help through the NHS but I can't get access and trying is now becoming so stressful in itself that it's causing me big spin-outs. There's nothing like being abandoned by services you're told all your life will help you to trigger massive spirals about your own worthiness as a human!

Without going into traumatic detail, I genuinely think there is a risk of life if I don't find alternative resources but I need longer-term things than crisis resources.

I don't care if it's a podcast or YouTube channel, a charity, recommendations of a private therapy route (can't currently afford private psychiatry, nervous about private therapy because my last therapy was crap and I mask the second someone seems insincere but if anyone has been down the private therapy route, knowing what worked would still help), a daily practice, whatever, throw it at me!

A little *extra* info - I'm socially isolated and find it extremely difficult to get out and about. I don't work and don't live near any friends (and only have 2 real friends anyway). No partner. My worst symptoms overall are anxiety and dissociation, but after a big unmasking of symptoms after a few years of insane struggle, I fully believe I have BPD alongside CPTSD (known for a while), possibly something like autism as well but I don't know because I can't get assessed because (see start of post) haha. I'm in my mid 30s if that makes a difference.

I had a resurgence of self harm on an SSRI earlier this year. It was the 5th antidepressant I've tried and I'm now on low-dose quetiapine but I don't think I want to stay on it. In short though, I need support instead of just meds and apparently no amount of crying to my GP is going to get me it, so I have to find a way out of this hole by myself or with private resources and I can't do that without resources. So gimme! Please :).

Firstly I know about getting DBT of course but please give me any and all resources that helped you. To get DBT I need to go private and I'm nervous about that due to below experience.

The NHS (I love the concept of the NHS but holy fuck) is failing me and wearing me out. I am in desperate need of help and support but I keep being palmed off. This year has been a huge unmasking of symptoms that I'm too exhausted to suppress anymore and I'm 99% sure I have BPD but I can't even access the people who diagnose. This is the story of my fucking life at this point and I should have been assessed as a teenager. I've reached out to my GP over and over, for years. I've tried to get help at 4 separate GP practices. I've moved hundreds of miles within this time and it's the same everywhere.

I have fresh physical scars and I'm scared about what is going to happen if I don't get intervention but I keep being put on waiting lists, or referrals don't actually get done, whatever. No one is seeing me and the feeling of repeated rejection is hurting me and actively making things worse. I can't keep doing it.

I had a year of private therapy last year and honestly it didn't help because 1. I didn't realise I was in the middle of a mental health crisis, 2. It was supposed to be parts work but I don't think there was any integration, 3. The second I noticed insincerity in my therapist, I started masking and people pleasing to save her from feeling bad for me, 4. She was way too validating and didn't challenge me at all. Once I presented a connection as healthy (believed it was at the time), she latched onto this and bigged it up. Plot twist: it was not at all fucking healthy. I'm not healthy enough to make healthy connections. She just kept bigging it up. It's not her fault I'm in this situation but I'm now in a position that this person is my only support.

I didn't know what I needed from therapy at the time, but now I don't understand how I'm supposed to know if a therapist is actually good with DBT or not because they all list it.

So if I'm going to survive, I'm going to need a plan to help myself. My brain is fucking chaos. I don't have a lot of money because I've been out of work for years so please give me ANY resources. YouTube, podcasts, books, but don't exclude costly things because I can maybe make a plan for them for the future and can cover some things now.

I genuinely cannot be having appointments with GPs every month for no fucking reason. It's too much to manage alongside other conditions.

Hello all,

35f ET JAK2+, diagnosed April last year.

I am low risk and on clopidogrel because I couldn't tolerate aspirin, along with famotadine because I still have digestive issues as a result.

This summer, I seem to have developed some kind of mild photosensitivity. I've had heat rash before and this definitely isn't that. It's exclusively happening on my forearms but seems to affect my left arm more than my right. It's a patchy, very itchy rash, not dissimilar to hives but it doesn't quite fit hives. It only happens when my forearms are exposed to the sun.

I know that clopidogrel can increase heat sensitivity, and I do get warmer quicker now (I used to be cold almost all the time), but I can't find anything specific about sun sensitivity so was wondering if anyone else has experienced this?

It *might* be down to mental health meds, but I've been on various SSRIs before and never experienced this. The first two times this happened, I was on an SSRI I hadn't been on before. I'm now on a different class of medication entirely, no more SSRIs but it's happened again today. While it still could be something to do with it, it is weird to have the same reaction on two totally different medications. Unless the first one triggered something and my immune system is just confused now?!

I've checked and there's no indication that famotadine has any impact on sun or heat sensitivity. But just wanted to see if anyone had experienced something similar on clopidogrel, since that has been consistent since October last year and has the heat sensitivity element?

I don't know that this is the right place to ask but I can't find the information anywhere.

On the new ScotRail app, I've got a train ticket for a date in September but there's an "activate ticket" thing that wasn't on the old app tickets. Is there a specific day or time when I'm supposed to activate the ticket, or can I activate and download them now to make sure I've got them on the day?

It's taken me an *hour* to book this stupid ticket. This is the vaguest app I've used in my life but that aside, genuinely what do I do?

Thanks! Hopefully mods let's this stay because I imagine getting through to a ScotRail person who can help on a Sunday will not go well 🙃

Hello,

I applied for ADP just over a month ago and they confirmed my personal details on the 5th July. I was just wondering if anyone knows roughly how long it might take to hear anything else? I've tried to Google rough timelines but Google is a mess and there doesn't seem to be anything current (I'm sure there are stats somewhere but I've been having a lot of cognitive issues lately and just can't seem to find them). I have seen it varies wildly for PIP but I don't know if ADP is done differently.

Also, will I need to have an actual assessment by them before any decision is made?

Thanks for any info!

I'm on 25mg seroquel with the aim to increase after being on citalopram caused self harm (may have happened without it but I probably had activation syndrome or hypomania. Not sure, doctors were supposed to do another psychiatry referral but it didn't get done).

Initially seroquel shut my brain up, and now it's coming back with a vengeance. I can't currently increase my dose because I need to navigate an unfamiliar journey to the dentist which is 30 miles away in a couple of weeks and I'm already struggling with the day time dopeyness and cognitive function.

It's the first thing that has allowed me to sleep properly for maybe years, but I want to come off so I can do the damn dentist trip (grinded my teeth so hard I cracked my teeth on the citalopram) and also fucking think straight for one minute because I currently don't know what is causing my rage/spin out/ whatever the fuck.

But logically I know j would probably be in the same spiral without the seroquel so it doesn't actually matter if I stay on it or not, I just really hate the dopeyness. I can't drive on it. My car has an oil leak I need to get fixed but I don't have the cognitive function to figure out when to book it in and I keep spending my money because I'm too dopey to care about saving. I don't work.

I don't have a diagnosis because frankly the NHS is failing me. I haven't spoken to a psychiatrist despite all of this. The first referral got dropped off to psychology, who based all their questions on CPTSD (which I already know I have), told me I probably have CPTSD, and stuck me on a waiting list for non-specified therapy. So helpful for someone who was actively self harming and suicidal at the time ❤️.

I'm fucking lost. I just feel stuck. There isn't a single right decision I can make because I suffer whether I stay on seroquel or I come off it. Nothing helps. I don't even know if this is a question or just a rant but I just needed to put something somewhere so when I feel okay I can read it back and remind myself I still need help 🙃

Hello all,

Strange one maybe but I had ponies when I was a kid but for various reasons, stopped riding around 11 years old. I've had very slight contact with horses since then and have ridden maybe 4 or 5 times?

My fitness isn't what it used to be but I'm really keen to get back in contact with horses/ponies one way or another, either through gentle riding lessons or just to groom and re-learn about their care, or for the mental health benefits (currently have some struggles I am working through and I know equine therapy can be wonderful).

Travel is a bit difficult so it maybe isn't something I'd start right away, but if I can get an idea of what's around, that would be amazing! Google does throw up some riding schools but I'm having difficulty looking for non-riding and therapy related things. Thanks!

ETA: I'm near Glenrothes

I'm not sure whether this is autism related or what but I'm very open and honest with people. I kind of hide certain vulnerable bits but it's to do with certain trauma like "I struggle with this because it makes me panic". I tell people how I feel about them and I try and bring up issues if I'm seeing them. I don't hide shit if it's going to fundamentally change my relationship with that person.

But I feel like in every relationship I've had, I've had to pull the truth out of them? And I can see something is up before they want to share. They pull away, every single time, but pretend everything is fine. And I try and give people the benefit of the doubt and think if they just have a little personal thing to deal with that's fine. But no. It's ALWAYS things like having a whole other person they're interested in, or addiction, or something like that but they won't tell me until I've asked 10 billion times if there is anything they want to talk about, or I'll verbalise that they seem to be quiet recently etc.

Then they *finally* do the big reveal. Like yeah no I knew something was up, THAT IS WHY I ASKED. and then I'm somehow the asshole because I'm majorly upset that they weren't honest the first time I asked? But i shouldn't even have to ask, right? They should be able to come to me because I'm their partner and I've stressed the importance of honesty to me, and they verbally agree to stick to that, so my dumbass tries to believe them when they say nothing is wrong because they've agreed to be honest.

And then I get stuck because is this my taste in people? Am I still stuck in patterns of choosing dishonest people without realising? I've done so much work to try and recognise red flags, but the last person was more convincing than ever, and the thing they were hiding was WAY more devastating than previous situations.

Or do other people just accept that people lie and at some point, their person will reveal a big betrayal and that's normal and should be accepted?

I just wish people would tell me from the start, or when the feelings change, or the addiction starts or whatever it is, instead of stringing me along for months, or in this last case, a whole year and a half.

I was always told that not trusting people was extreme when I was young. I had really good reasons not to buy I tried to soften my view of people in case it was just a result of trauma, and now I'm in my 30s thinking I would have saved a whole lot of time and energy if I'd stuck with my teenage view of the world, because everyone seems to lie.

I was wondering if other autistic people experience this phenomenon of having to pry the truth out of people, and being able to recognise something is wrong before they finally give in and say it? Especially in the context of being extremely honest ourselves and making it clear that's a value?

Not looking for advice, just wondering about other people's anecdotal experiences of quetiapine/seroquel while having bipolar 2? I'm not diagnosed (explained below), suspect BP2, but it could be BPD or both. I do have CPTSD as well.

I am in two minds about whether I might have bipolar 2 or bpd. I was convinced it was bipolar 2, but my moods have been super erratic, they changed within hours, but there are also times in my life when I'm stuck in either depression or a productive cycle for a while with no clear trigger. It might be BPD and I'm actually being triggered by the state of my social life at the time, but I'm not sure.

I went to my GP a few months ago because I was struggling a lot and could feel an increase in suicidal ideation and speed of my thoughts (thought speed is important). They referred me to my community mental health team (CMHT) and put me on citalopram which felt good for a couple of weeks so I thought it can't be bipolar, because a standard SSRI is working. Worth mentioning that throughout this, I've been having a really difficult time with my closest (and only, now) friend. Devastating. My thoughts sped up again and I actually could not catch myself and I started SH for the first time in 15 years. It was like the floodgate opened then and everything turned into a mess.

Community mental health passed me to psychology, who focussed on questions about CPTSD. I gave up near the end when it was obvious she wasn't going to ask me about mood stability, impulsiveness, or anything that I was actually struggling with there and then. She told me I'd get one on one therapy but the waiting list was long. This really spun me out because that meant I had no hope of getting better. I took myself off the citalopram and got ill from that for a few days. After more than a week, I was still SHing and my thoughts were still so rapid, too many at once, non-stop, suicidal ideation, constantly questioning what I had to stay for (objectively, nothing) etc. I was self-medicating to try and get my thoughts to slow down just so I could survive. I phoned my GP and did the hard thing and told them what was happening. They have done another referral to the CMHT for psychiatry involvement and also prescribed quetiapine. Citalopram was the 5th antidepressant I've tried, and only Prozac helped before, but ultimately caused more dissociation.

I took my first dose last night and the difference 😭 Today I cried looking at puppies because they're so damn cute. My thoughts are still a bit speedy, but instead of flooding my entire brain, it's like they're behind a barrier and I've been able to actually think about things that aren't just my crappy situation. I've been groggy and spacey, but also more grounded than I've been for sooo long. Like so long. I'm 35 and my brain has always been noisy. This isn't the first time that noise has gotten overwhelming. The first time I went on Prozac, I was having multiple panic attacks a day even though my life was objectively good back then. I loved uni, I had a lovely partner, stable home etc.

So yeah. I was scared of trying an anti-psychotic. It sounds scary. But I'm so glad I did. I can mentally breathe for the first time in forever.

Edit: that is a huge amount of replies! Some of you reminded me that I have things on hand for this like Huel shakes, which I totally forgot about. I feel strangely supported knowing so many of you have your go-to basic foods for times like this as well. So many people I know in real life don't understand it when I say I can't eat food I enjoy sometimes. And so many of you have given me things I can buy in for next time! Thank you all!

I'm very shut down right now and don't have a lot of food options. I also don't like a lot of food aha. So I am sitting here, the oven is on for some easy food but I really, really don't fancy it. There are two takeaways that deliver to me that I like, but I definitely shouldn't spend the money and I'm also not exercising much at the moment so I should eat something healthier.

Pasta and tuna is my usual go-to when I feel like this, but I'm really off tuna right now. The idea of it in my mouth is a big fat no.

Or I could just have ice cream, but at that point, takeaway will actually be better for me. *Big sigh*.

I'll work it out, but I was wondering what others do when they're stuck in an anti-food mood? ("Mood" is definitely not the right term but keeping it for the literary smoothness).