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5 minutes ago, drahkon said:

Finally, after a few weeks of dealing with a software and theory it was time to go back to the lab and do some experiments.
Today I went in 'cause I wanted to prepare some solutions/buffers/etc.

I managed to prepare one (out of 9) before the water was turned off without any warning. Turns out that the thingy that produces distilled water is fucked so the entire building was without water (that could be used for work). This also made it impossible for us to get more Milli-Q H2O (which I tend to use) as it is connected to our distilled water line.

We have no idea how it'll take to fix. Hopefully just a few days...

Ah, it's like reliving my past by reading that. I don't suppose your lab has sealed bottles of RNAse free water that you could use to make buffers instead?

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Just now, Sheikah said:

I don't suppose your lab has sealed bottles of RNAse free water that you could use to make buffers instead?

Sadly no, or not enough for everyone. And since there's a practical course coming up (starting tomorrow - don't ask me why it's allowed in these times...) and because I still have 4 months left for my thesis I decided to just wait.

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You know sometimes when you just find something out and you need to speak out but you just don't know how/where? I've felt that heavily today. So perhaps here is the way. 

A couple of weeks ago I went to a private doctor over my health. The TL;DR is that it was very good. But ultimately  I need to stick with the NHS to have my surger(ies). In the conversation I was asked if my mother had ever had a BRCA test as I have not.

In the end I had to ask my dad (my mother passed from aggressive breast cancer in the early 90s). My dad is nothing short of fantastic when it comes to sharing knowledge about my mum even though its still obviously really hard for him to discuss. Normally I'm fairly OK with whats discussed. But today broke my heart. My dad spoke of how she discovered the cancer, how I was just 3 months old and how it developed  from there. She had radiation on her ovaries and they were broken that the choice for more children was taken from them. 

Knowing my own choice is gone, its a rough road. My mum died in a lot of pain and I know my dad gets really upset seeing what I'm dealing with. I don't have cancer. But I now need a full hysterectomy and bowel surgery. I'll never be able to have children and its not going to be an easy road going forward.

I don't really have a way to end this comment. I just kind of needed it somewhere. 

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I can't begin to comprehend what it must be like for yourself, and for your dad, but always here if you ever need anything. 

I hope you don't have to wait too long for your surgeries. 

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Yep, if you ever want to vent and get things off your chest then we’ll always be here to listen.

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23 hours ago, nightwolf said:

You know sometimes when you just find something out and you need to speak out but you just don't know how/where? I've felt that heavily today. So perhaps here is the way. 

A couple of weeks ago I went to a private doctor over my health. The TL;DR is that it was very good. But ultimately  I need to stick with the NHS to have my surger(ies). In the conversation I was asked if my mother had ever had a BRCA test as I have not.

In the end I had to ask my dad (my mother passed from aggressive breast cancer in the early 90s). My dad is nothing short of fantastic when it comes to sharing knowledge about my mum even though its still obviously really hard for him to discuss. Normally I'm fairly OK with whats discussed. But today broke my heart. My dad spoke of how she discovered the cancer, how I was just 3 months old and how it developed  from there. She had radiation on her ovaries and they were broken that the choice for more children was taken from them. 

Knowing my own choice is gone, its a rough road. My mum died in a lot of pain and I know my dad gets really upset seeing what I'm dealing with. I don't have cancer. But I now need a full hysterectomy and bowel surgery. I'll never be able to have children and its not going to be an easy road going forward.

I don't really have a way to end this comment. I just kind of needed it somewhere. 

this breaks my heart.  If I could, I'd give you my fertility in a heartbeat.  So fucking cruel for that to be taken from you both. 

Love ya girl <3

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On 10/03/2021 at 9:01 PM, nightwolf said:

You know sometimes when you just find something out and you need to speak out but you just don't know how/where? I've felt that heavily today. So perhaps here is the way. 

A couple of weeks ago I went to a private doctor over my health. The TL;DR is that it was very good. But ultimately  I need to stick with the NHS to have my surger(ies). In the conversation I was asked if my mother had ever had a BRCA test as I have not.

In the end I had to ask my dad (my mother passed from aggressive breast cancer in the early 90s). My dad is nothing short of fantastic when it comes to sharing knowledge about my mum even though its still obviously really hard for him to discuss. Normally I'm fairly OK with whats discussed. But today broke my heart. My dad spoke of how she discovered the cancer, how I was just 3 months old and how it developed  from there. She had radiation on her ovaries and they were broken that the choice for more children was taken from them. 

Knowing my own choice is gone, its a rough road. My mum died in a lot of pain and I know my dad gets really upset seeing what I'm dealing with. I don't have cancer. But I now need a full hysterectomy and bowel surgery. I'll never be able to have children and its not going to be an easy road going forward.

I don't really have a way to end this comment. I just kind of needed it somewhere. 

I'm sorry to hear about this. My heart truly goes out to you! Like the others have said, we are always here for you when you need us!

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Thanks gang. 

At the time I just felt really lost and just wanted to through it out there. I'm doing ok, all things considered. The reality is (and my doctor confirmed) considering how unwell I am, my life is pretty decent.

I can't say I don't get sad as fuck sometimes, but I'm getting there. 

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6 minutes ago, nightwolf said:

Thanks gang. 

At the time I just felt really lost and just wanted to through it out there. I'm doing ok, all things considered. The reality is (and my doctor confirmed) considering how unwell I am, my life is pretty decent.

I can't say I don't get sad as fuck sometimes, but I'm getting there. 

I see that you've been really successful with your career, that must be such a boost.  AND achieving that despite all that garbage you are suffering.  You're one of the gooduns. :heart:

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On 14/03/2021 at 8:09 PM, nightwolf said:

Thanks gang. 

At the time I just felt really lost and just wanted to through it out there. I'm doing ok, all things considered. The reality is (and my doctor confirmed) considering how unwell I am, my life is pretty decent.

I can't say I don't get sad as fuck sometimes, but I'm getting there. 

We got you if you ever need us! :hug::heart: 

====

I don't know if I've ever shared this before but I have OCD. My OCD is basically checking and self-doubting and doing little "rituals" and stuff. It's been the worst it's ever been. It really takes a toll on my brain and it's been so bad the past couple of months. Everything worries me from the whole world to the tiniest of things that don't really matter. I used to do CBT and it worked 95% of the time but now, it's not even helping. I've heard doing journalling helps so I might give it a go but I have no idea where to start with something like that, honestly. I've also put on quite a bit of weight because of my Plantar Fasciitis (which is now healing after treatment) and I'm near enough where I first started (My heaviest was 20st 7lb and now I'm at 19st 9lb) so that didn't help matters. I'm aiming to try and get all of this sorted and I hope that maybe returning to normalcy in April will help with my OCD.

Edited by Beast

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Some fucker stole the catalytic converter from my sister’s car overnight. Apparently thousands are stolen all the time and it’s not surprising that it’s still going on given that when my sister rang the police they just gave her a crime reference number for her insurance claim and said they wouldn’t be investigating it.

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Unfortunately non violent thefts are a low priority. Typically there's not that much evidence to collect and punishment for individual thefts is quite low anyway, so it's not worth their time.

If someone was spotted with loads of catalytic converters, then they would definitely look into that.

When I worked at the Range, I had to deal with gathering CCTV and reporting shoplifting to the police. The police knew most of the shoplifters by name, they just enough meaningful evidence for a meaningful sentence (one person was in jail for two days... then a week later was back in the store). We were even able to give a numberplate, names and address of a family of shoplifters (kids were aged between 8 and 10), as a staff member knew them (the kids had previously thrown stones at her daughter) with clear footage and nothing came of that.

 

 

 

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On 14/03/2021 at 8:09 PM, nightwolf said:

Thanks gang. 

At the time I just felt really lost and just wanted to through it out there. I'm doing ok, all things considered. The reality is (and my doctor confirmed) considering how unwell I am, my life is pretty decent.

I can't say I don't get sad as fuck sometimes, but I'm getting there. 

I wrote a whole thing, about how I've still not heard anything from anyone and how the pain is getting into my head. But what's the bloody point.

I'm tired, everyone is so excited that they are getting their vaccinations (my friends have had theirs) and going "back to normal". My normal is not going to change. I'll be in pain, maybe with a vaccination, I'll still need to work from home. I still won't be able to drink.

Gah, fuck it haha. 

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11 minutes ago, Cube said:

Boris came within 50m of me and I feel sick because of it.

Isn't that a sexual offense?

Ok, ok, I'll leave. LIKE THE UK DID.

Byyyeeee

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On 27/04/2021 at 8:47 AM, Cube said:
Boris came within 50m of me and I feel sick because of it.

I passed Gove once in the street. Was literally within punching distance.

Edited by bob

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On 13/04/2021 at 7:49 PM, nightwolf said:

I wrote a whole thing, about how I've still not heard anything from anyone and how the pain is getting into my head. But what's the bloody point.

I'm tired, everyone is so excited that they are getting their vaccinations (my friends have had theirs) and going "back to normal". My normal is not going to change. I'll be in pain, maybe with a vaccination, I'll still need to work from home. I still won't be able to drink.

Gah, fuck it haha. 

My cousin has been very recently diagnosed with (i believe) something very similar as you, and she was told by the surgeon that its inadvisable for her to work full time. And she will not have kids naturally, period.  Shes pretty down at the mo.

Was talking to my mum and sister and i was so so so ashamed of them.  Theyre so ableist "well she will have to work and suck it up they have a mortgage to pay" etc etc.  I just don't feel like that sort of commentary on someones personal health and finances are neccesary, even if it is true or has true elements (especially in such a negative way) and it actually made me angry... i could very well be facing similar dilemmas in the years to come, christ, im barely able to function as it is.  So its really nice to know how they feel about people claiming disability.  :blank:

im preparing myself to (probably) go back on methotrexate so ill not be able to drink either. Got my xrays done yesterday and my body hurts just from being manipulated into position to get the right angles :angry:

Edited by Raining_again

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On 28/04/2021 at 8:43 PM, Raining_again said:

My cousin has been very recently diagnosed with (i believe) something very similar as you, and she was told by the surgeon that its inadvisable for her to work full time. And she will not have kids naturally, period.  Shes pretty down at the mo.

Was talking to my mum and sister and i was so so so ashamed of them.  Theyre so ableist "well she will have to work and suck it up they have a mortgage to pay" etc etc.  I just don't feel like that sort of commentary on someones personal health and finances are neccesary, even if it is true or has true elements (especially in such a negative way) and it actually made me angry... i could very well be facing similar dilemmas in the years to come, christ, im barely able to function as it is.  So its really nice to know how they feel about people claiming disability.  :blank:

im preparing myself to (probably) go back on methotrexate so ill not be able to drink either. Got my xrays done yesterday and my body hurts just from being manipulated into position to get the right angles :angry:

I am sending all of the love that I have to your cousin. 

I am grateful that both my partner and my family roughly understand my condition, but it wasn't always that way. I have pretty terrible memories of going to appointments alone and suffering back in 2016/17. My partner has been amazing, but going to the doctor and them explaining to him what was actually wrong horrified him.

Realistically I shouldn't be working, I've been in therapy twice over it and getting more fibroids and cysts again has brought me a lot of pain, which was only truly confirmed by my private doctor. He was amazed I was able to walk, never mind go to the gym. I'm fortunate that I have a high tolerance to allow me the life I have, but nobody should feel fortunate to be able to tolerate lots of pain on a daily basis to live a "normal" life.

Gah, the topic makes me so freaking mad. 

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22 hours ago, nightwolf said:

I am sending all of the love that I have to your cousin. 

I am grateful that both my partner and my family roughly understand my condition, but it wasn't always that way. I have pretty terrible memories of going to appointments alone and suffering back in 2016/17. My partner has been amazing, but going to the doctor and them explaining to him what was actually wrong horrified him.

Realistically I shouldn't be working, I've been in therapy twice over it and getting more fibroids and cysts again has brought me a lot of pain, which was only truly confirmed by my private doctor. He was amazed I was able to walk, never mind go to the gym. I'm fortunate that I have a high tolerance to allow me the life I have, but nobody should feel fortunate to be able to tolerate lots of pain on a daily basis to live a "normal" life.

Gah, the topic makes me so freaking mad. 

Oh same, it makes me so so mad too.

Able-bodied people somehow completely disregard that its not a level playing field. 

A perfect example - I went for an xray last tuesday, a benign appointment for most people, sit there they take xrays done.  But I've been in pain since, to a point where I had to take coedine just to sleep a night, which then truly fucks up my lungs/breathing so I'm barely functional now.  I'm still undiagnosed w my breathing problems and they are getting worse again especially when im forced to take what is basically fuckin morphine because nothing else works and ive waited 3 years just to see someone to manage this pain. :blank:

And realistically I know that I can't just stop working.  I know life doesnt work that way.  But I don't need it fuckin repeated over and over by people who are my family.  A lot of disabled people want to work, accessibility to work is a real problem.  And in my experience as a disabled person, you have to double down on your work ethic to "make up" for any needs you might have.  And dont even get me started on the PIP process.

It makes me so fuckin mad and I just wish people would keep their damn opinions to themselves if they havent got something SUPPORTIVE to say.

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i woke up this morning with a frozen shoulder, have barely got the strength to hold the weight of my arm up.

rang gp and basically had a complete and utter meltdown on the phone at him

finally had that moment where i needed to bring up my concerns regarding my symptoms and that i would like myasthenia gravis considered and at least ruled out (it has very specific symptoms all of which i have).  I was already referred to neuro anyway, doctor listened and didnt dismiss me but it isnt something they can test and has to be done by neuro.  hes going to see if the referral can be seen more urgently.  I'm also considering going privately as well but ill have to see if i can shuffle some money around maybe.

I've really been having a run of bad days, my shoulder has been getting progressively worse, my breathing and voice are shot and i just feel miserable and fucking unable to do anything at the moment and it sucks big time :cry: I'm also very aware of how i nearly fuckin ended up in icu with a breathing crisis, and i dont particularly want that to happen again, especially while services are so strained in icu.

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Hopefully you'll get a referral soon but if you can afford the private route it might be best as it sounds like you really need some help. 

 

The cistern was playing up earlier and usually it's just a case of poking around and it's fine but not this time. It's emptying as quickly as it fills. So I called the landlord and he said he'd get a plumber out and in the afternoon I tried him again and no luck so I text him when I was on my way to the gym saying I've left a key with the concierge. Speaking to the building manager though apparently the flat under me had a leak so she asked me to switch my water off (I doubt it's my flat as they reported it last night and this only started this morning). Had to go back down saying I didn't know how and then the guy came up to show me but couldn't get it to work so he left and then I managed to do it and went back to tell him. He said he'd speak to the other flat to see if that had stopped it and I left it about an hour and went back down and he said no word from them so to turn it back on which I've done (and bought two gallons of water just in case). Each time I've had to go up and down five flights of stairs after legs day 😮‍💨

Got the gym in the morning and if I haven't heard anything will try again but in the meantime I've got the great fun of manual flushing. One of those things you don't really appreciate until you don't have it.

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Had an issue with my left eye for a week and a half now. Been taking antibiotic eye drops for a week but no improvement. Paid for a test at Specsavers who referred me to a specialist. Was waiting 2.5 hours at the hospital, finally get to the appointment, she looks into my eye for 30 seconds and tells me to shampoo my eyeballs twice a day. The fuck?!

She also gives me an ointment that I need to put inside of my eyelids.

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On 12/05/2021 at 9:17 PM, MoogleViper said:

Had an issue with my left eye for a week and a half now. Been taking antibiotic eye drops for a week but no improvement. Paid for a test at Specsavers who referred me to a specialist. Was waiting 2.5 hours at the hospital, finally get to the appointment, she looks into my eye for 30 seconds and tells me to shampoo my eyeballs twice a day. The fuck?!

She also gives me an ointment that I need to put inside of my eyelids.

are you sure you didnt go to the hairdresser by mistake :heh:

--

 

I went to what i assumed was a routine appt with nurse specialist today.  she is *not* happy.  she noted considerable decline in speech and mobility. my medications are being withdrawn until i see a neurology consultant. 

So not only do i have considerable muscle fatigue (which i personally dont think will resolve withdrawing meds) but the remission of my psoriasis and arthritis is now pretty much over.  I've sat all day with a knot of anxiety in my chest, and its not like me to be a really anxious person.  oh yeah and not forgetting the fact i can go into a spontaneous respiratory crisis at any moment. Its a fun time. :grin:

I got told off for not complaining "you're the kind of patient we worry about the most because you just dont complain at all"

Prob a few of you peeps here will understand me (@nightwolf special shoutout lol) that when you're chronically ill you just get so damn used to living with whatever it is. The normies, especially medical people, expect you to be miserable 24/7 but the fact is yes i have shit days, but a lot of the time i just want to enjoy my day despite everything going on.

 

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