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Raining_again

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Posts posted by Raining_again

  1. Posted

    On 22/06/2021 at 2:20 PM, Ronnie said:

    Something I've wondered, when you book your 2nd jab does the NHS online site know which vaccine you've had as your first dose? It gave me a long list of vaccination centres to use as my second dose but does that list only show Pfizer centres?

    You have to imagine it does but who knows...

    Also, at first it said no availability at my centre, but when I cancelled my existing booking and rebooked the same place was there on the list, which is weird.

    I am fairly sure that they are operating the same over the entire uk (i'm NI) but any of the bigger clinical NHS settings will have been financed for the superfreezers for the pfizer vaccine.  GP and pharmacy will hold the others.

    Take your card with you because theyll ask for it but 99% sure you'll be fine.

    • Thanks 1

  2. Posted

    On 16/06/2021 at 12:10 AM, Jonnas said:

    Today was a consistent sunny 25-29 degrees all day where I work. But just as I left by the end of the afternoon, a surprise thunderstorm broke out, and it rained massively. Almost like a tropical storm.

    So why is this good news? Because the smell of cold rain on hot ground (whether it be stone, dirt, grass, or pavement) is unique, pleasant, and something I rarely experience outside of holidays. Getting to feel that during my trip home instead of having to deal with the overbearing thick heat from earlier was nothing short of a blessing.

    I dunno, maybe lately I've been feeling short on these small pleasures of life, but it felt just excellent today.

    I love thunderstorms!  They do happen in Ireland, just not very often, usually after a big bout of heat.  And the relief from the air pressure is so nice too.  I will often sit out and experience them if i can find a sheltered spot somewhere.  Just puts me in the best mood :)

    • Like 1

  6. Posted

    10 minutes ago, nightwolf said:

    Honestly at this point R_A I might have to start being a bit of a dick about the NHS, I can't be nice about it anymore. I want to burn it to the fucking ground. 

    I have been in the "system" since last year, about March, technically its January, but that was the GP then over to the hospital, I now have a specialist in endo as my consultant. Mid-last year we had a face to face, the TL;DR, surgery A or surgery B is the way to go. Other options will only be temporary. So pick a surgery. 

    So MRIs later and delays due to covid, I went to a private doctor who worked at the same hospital in the same area as my specialist consultant. He mentioned the same thing as my NHS consultant and said we need to get you a priority. During that time I decided to pick a surgery, I chose option B. It seemed the safest and future proofing I could achieve with my own body. The more surgeries of this kind I have, the more risk it entails. 

    Fast forward a little bit I had a phone call a couple of weeks ago, this was supposed to be with my NHS consultant, but for some reason it was with an entirely different doctor. Whatever. He asks me about my pain levels and whether I had given my consultants comments/advice any thought. I told him I had chosen surgery B after speaking to both him and my private doctor. 

    The doctor seemed iffy, but did give me next steps, that next they'd have a big meeting and decide if that actually was the right thing and if everyone was happy to do it. This happened last time back in '17 so I wasn't surprised. I want them to be sure this is the accepted route! So at this stage I was happy that we were maybe finally getting somewhere. We'd wait for the meeting and then in his words "get you in to sign consent forms". 

    However, today I received two letters (exactly the same so good job admin) for some reason this doctor on the phone was now suggesting that monthly injections and tablets for 6 MONTHS is a good idea, instead of surgery. However, they did concede they "still needed to have a chat about a surgical option with the wider team". 

    You fucking what? So you're telling me that in MARCH OF FUCKING 2020 you could have given me this and made my life easier whilst we waited? But you've waited over a year, with another 6 months potentially in my future before we'll even look at booking a surgical date? WITH NO PAIN RELIEF WHATSOEVER. (This is a running theme by the by, I've never ever been offered more than paracetamol since I was diagnosed in 2016, except the morphine for a good 24 hrs after surgery - sigh). 

    I am normally very very nice to every medical professional I meet, to the point of annoying my husband. But N-E you better pray for the next Dr or consultant who speaks to me because I'm about to tear then a new one. I am not waiting until sometime in fucking 2022 for a surgery and treatment that should have happened in 2020. 

    that is a lot.

    My heart goes out to you, and i understand.  I am just the same.  It is very very frustrating when the goalposts are moved.  And while covid is not the NHS' fault, it certainly has made what was already fairly lacking communication even worse.  The fact that you had been led to believe xyz was happening then they backtrack you to abc is unbelievable honestly.

    I got fucked about recently with ENT private v nhs as well.  been in the system most of my life with so many things they have ignored. This current issue is nearly 3 years in the making, and I'm pretty sure i may have even been misdiagnosed from as early as my early teens (now almost 35).  I am also in a position where im in a significant amount of pain, but i actually can't take painkillers because everything tries to end my respiratory function... which is kinda vital? lol  and you know its like, eating paracetamol like they're smarties for what ? next to no relief and probably liver failure in your 60s? cheers lads.

    Advocate for yourself love, for real. be a big mf bitch if you need to. 1000% behind you on that.  Sometimes you have to put them under pressure. Tell them you wont leave until you at least are given a pain management plan. Tell them how much its affecting every single waking moment of your life.  Because it QUITE CLEARLY is.

    P.S, :heart:

    • Like 1

  7. Posted

    Someone is lookin out for me somewhere. Not sure if it was the breakdown i had on the phone with GP, or my nurse specialist being an absolute fucking champ (likely the latter) but my neuro consult has been red flagged somehow, and i have an appt for next month.  I can't rationalise it other than that because neuro is as bad as rhem and im still waiting in a 3.5 year list for them (but only routine).

    I had a rude colleague tell me, last week, that ill be "waiting forever since ive been on that list for years", i'm just dying to go in and slap her round the face with my appointment letter.  Her self importance can GTF :laughing:  (for context this is also the person who mocked my illness/reduced duties so, no sympathy deserved for her)

    • Like 4

  8. Posted

    2 hours ago, Happenstance said:

    But where do you both keep the password for the spreadsheet???

    i got it on a post it note on my monitor LOL

     

    (i joke its just an easy one i can remember and never change)

    • Like 1

  9. Posted

    On 20/05/2021 at 11:55 AM, Will said:

    Thanks everyone, been a pretty tough day. As we find out more it seems he had an undiagnosed brain tumor and either the vaccine is totally unrelated as @Dcubed rightly said, or else was just the kick-off of something that would have happened very soon anyway. We should all still get our vaccines!

    Still in shock, will drink a nice cold beer for him soon.

    I can't even imagine what you and all of his loved ones are going through, so terribly sad.   Puts a lot of things into perspective. 

     

    Hopefully we are out of the worst of this, any spikes of covid we do get *should* be minimised thanks to the work of so many of the NHS and people that have stayed at home, but we've got a bloody long road of recovery ahead.  I really hope the government see sense and put money where its needed to help the recovery efforts.  A lot of non covid related chronically ill people need help right now. 

  10. Posted

    On 02/06/2021 at 2:48 PM, Ashley said:

    I was never offered a choice, when I turned up they gave me a sticker to indicate Pfizer. I think you "have" a choice in as much as you can request up front (somehow...?) but I think in large vaccination centres if you're under 40 they're giving you Pfizer by default.

    I can tell you if you've gone to a large vaccine centre (i know ours are being hosted in leisure centres/big arenas) you're more than likely going to get pfizer because the bigger places have the superfreezers.  Places like your GPs surgery and pharmacies will have the others due to them only being required to be in a fridge.

  11. Posted

    On 21/05/2021 at 2:41 AM, Will said:

    Password stuff like this is so ridiculous. At one of my previous companies everyone ended up writing their passwords on post-it notes which they stuck to their monitors and then amended one character every couple of weeks. Super secure that one!

    we arent computers, we just aren't built to remember dozens of unique fuckin passwords that have to change on a fairly regular basis :blank:  especially if you work in a place where you have multiple types of servers, databases etc to log on to, all of which have different requirements and change on different frequencies.   I have a password protected excel spreadsheet where I hold all my passwords, it is the safest middle ground i could come to.  Passwords give me an absolute headache lol

  12. Posted

    On 29/05/2021 at 2:41 PM, MoogleViper said:

    It would probably make more sense.

    I went back for a follow up. He said the corneal ulcer had cleared up, but it had left some scarring on my eyeball. So now I'm using moisturising drops to help the scarring heal

    ooohhh yikes.... :cry:

    i can cope with almost anything medical but i hate eye things.  Eye ulcers are awful, i hope you feel better soon :heart:

    • Like 1

  13. Posted

    11 hours ago, nightwolf said:

    Yup! My recent appointment with a private consultant showed that my pain tolerance is through the roof. So when I told my NHS doctor my pain levels instead of him using that AND all my records and scans he just went "well you deal just fine."

    My private consultant was like...wtf. So that's fun! Compared to here it's remarkably rare that I complain about the pain I'm in outside of my own home. Most of the time my partner only knows because I'll pull a face or make some kind of accidental noise. It sucks. 

    I knew you would completely understand and thats just fuckin sad :(  like, what other choice do we have lol.  You deal with it or you throw yourself off a bridge, thats about the only fuckin options you got.  Kickin off a stink gets you known as a hypochondriac and dismissed even more, especially when you're under the age of 40.  The next person that says "you're too young" might get my "young" fist in their mouth lol. 

    The fact you have a supportive and understanding partner is wonderful though :heart:

    • Like 1

  14. Posted

    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.

     

    • Like 2

  15. Posted

    10 hours ago, Happenstance said:

    I think you are probably annoyed by me calling people lazy but I still just wanted to comment on this. You are overthinking things and causing the confusion. If it says "two households can meet of any number" then that's what it means. They can't spell out every single difference in situation.

    happs w the slam down of some common sense daaaim boiii :laughing:

    Sorry i do agree, it doesnt seem to be complex at all.  Consider yourself lucky that you are able to go out and meet people at all, not all of us have that privilege :blank:

    • Like 1

  16. Posted

    7 hours ago, Ashley said:

    Yeah this is what I find is a shame about sport education. I think the vast majority of people given the time/options would find some form of exercise they like but sport education is very much focused on "make a team and play this competitive sport". I get that there are limits in terms of resources, but it is still a shame. I don't like competitive sport because I'm not great at any of them, and particularly in school it does feel humiliating when you aren't. But something like swimming, cycling and even sometimes running I like. Glad you've managed to find something.

    this this this this

     

    if i had found weightlifting as a teen i would have been a fuckin powerhouse.  everything we did relied on depth perception which i dont have lol.  The only class I failed year after year. 

    F - tries hard

    lol

  18. Posted

    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.

  19. Posted

    2 hours ago, sumo73 said:

    The perfect relationship, the kids, the job, the house...rarely exists and if it does it's in films.

     

    QFT.

    I think as well. realistically, you're never gonna fulfill every single "category" in life.  Its not physically possible unless you are EXTREMELY lucky.  Not enough hours in the day to spin that many plates lol

    Maybe your job is mediocre (or not what you saw yourself doing) but it affords you time and a stress free time to be a parent.  Maybe you spent your time building your career and have yet to meet The One or have a family...  Every good thing in your life isnt erased by the fact there is one thing you arent 100% happy with. 

  20. Posted

    48 minutes ago, EEVILMURRAY said:

    Having a house is nice, but I feel like those in the house buying thread that you may have bitten off more than you can chew, maybe you have rose glasses when you move in, and then the smallest things start appearing which you know you need to fix.

    Once the honeymoon of "I HAVE A HOUSE ITS ALL MINE" thing fades this is definitely so so true.  My house hasnt even been that stressful in terms of it needing repairs either.  You realise that yes you can do whatever you desire to the house, but it all costs money LOL.  No landlord to annoy if your toilet floods or the electrics have failed XD

    All the money you save in the difference between a mortgage and rent now becomes your "if something goes wrong in the house" fund. :laughing:

    • Haha 1

  21. Posted

    Aww @Ashley thats very kind of you to say

     

    In a weird sense I feel like sometimes its a blessing to have had to deal with "problems" at a young age.  For all the bad things its certainly given me a lot of wisdom & confidence to deal with problems now and in the future. 

    I know people that don't go to the doctor EVER, have seen patients in work that havent even been registered with GPs suddenly ending up with a stroke or serious medical issue in their 40s/50s/60s very suddenly and the idea of that terrifies me more than the way my life is :blank:

  22. Posted

    personal experience - you never truly feel like you are at the right milestones or have "done enough", you really have to deconstruct why those expectations are in your head, are they there because you truly want them or society/other people have placed this impression that you must.  Then you have to focus on what you can realistically do from now and going forward.  Sometimes therapy/mindfulness can be a worthwhile avenue to look into.

    My life is definitely held in suspension right now.  My health is terrible.  My job situation is messy.  My love life is no better (in reality most men do not want to take on someone with disabilities especially when they can't have kids)  I will never life a normal life and i've had to accept that.

    Even most recently i was nerding out on keyboard shopping and got frustrated because mechanical keyboards are very in fashion right now and i want one, but my hands and wrists are too damaged to deal with a clicky keyboard... very much a dumb "why me" moment but we are all human and its ok to be frustrated when you get handed an unfair deal in life.

  23. Posted

    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.

    • Like 1

  24. Posted · Edited by Raining_again

    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:

  25. Posted

    11 minutes ago, EEVILMURRAY said:

    Let it crumble!

     

    I'm in a quandary at the moment. I've applied for two positions, one being a PA, a rank above me, another for a PPA, which is what I am now, but just somewhere else. I had my PA interview on Friday and other one is tomorrow. A few colleagues had their PA interview today and I emailed my senior on the sly asking if there was any reason why I may need to cancel my interview tomorrow wink wink. No response. Maybe she's playing it close to the chest and not playing ball, but either I got the position and there's no point me attending anyway, or I didn't get the job of what I've been doing for the past year because of some insignificant bullshit and I then have to try and impress the exact same people who deemed me unworthy the first time.

    So probably gonna cancel it tomorrow.

    i know if you're still nhs shes not legally allowed to tell you before the paperwork has been reviewed by a panel, that could be why.  They're super strict about that nowadays.

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