Interstitial Cystitis

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Interstitial Cystitis
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    I feel so relaxed…

    So, for once I decided I’m going to make a positive post! Here goes nothing…

    In recent weeks I’ve had the money to buy all new furniture in my room, since all my old stuff was over 20 years old and was dying a very slow death. So I bought a chest of drawers, a bedside table and a desk.

    It’s taken a while and a lot of mum’s help to put them all together and move the stuff around in my room. Take the old stuff out, put the new stuff in and then go through all of my clothes and whatnot.

    I ordered a new LED lamp that I can either make brighter or more dim, and it has different types of light as well, which I thought was pretty nifty.

    Anyway, now I have my desk, I’ve spent this evening going through my notes for my writing project(s) and what I hope will one day be my debut novel, with my laptop playing Grey’s Anatomy for background noise, and I’ve had a lovely cup of tea.

    I feel so utterly and completely relaxed. I feel so at ease! It’s almost like magic. My room is spotless, and somehow so is my mind. My stress level has dramatically dropped! This is absolutely brilliant! I have my own little safe haven now.

    I hope you’re all having a great week so far!

    #chronicillnesswarrior #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #BorderlinePersonalityDisorder #NAFLD #LiverDisease #InterstitialCystitis #Diabetes #Migraine #author #AspiringAuthor #Relaxed #peaceful #Depression #Anxiety #Stress

    65 reactions 13 comments
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    My New Tattoo

    Hey, everyone! I hope you’re all okay. I just have a question for you all.

    Does anyone get a mild fever after having a tattoo done? I had a fairly big one on the top of my arm on 13th May and everything was fine - it’s healing perfectly. But I did have chills for a day or so.

    Last Tuesday (30th May) I had another one, but much smaller, on the back of my wrist. Visually, it’s healing very well, too. It’s not itchy - it looks fine.

    But today I’m really freezing cold. I’m in PJs, my fluffy dressing gown and my fluffy blanket. I’m only JUST beginning to warm up.

    I’m just wondering if anyone else has this problem? I’m certain there’s no infection. But I’ve been told my immune response tends to be a bit overkill. My white blood cell count goes absolutely nuts. Do you think that might be what’s happening?

    Thanks in advance!

    #chronicillnesswarrior #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #BPD #NAFLD #InterstitialCystitis #Diabetes #Advice

    11 reactions 5 comments
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    Going to bed feeling content ...... #MentalHealth #Anxiety #Depression #Selfcare #ChronicPain

    Well today I play the computer with little ones ,played some games,made cakes, watched a movie then I managed to move all my living room about which I've been wanting to do for suffering now for it pain wise as I still have this infection (11weeks now) and it did take alot our of me but I feel so much better getting all that done ,and spending time having fun with the little ones especially as I really struggle most days to do anything.
    So the pain now was definitely worth it seeing their little faces instead of them popping and out to see me while im stuck in bed !

    So here's hoping this week is a better week ♥️😊
    Hope everyone had a lovely weekend and is OK 😊

    #MentalHealth #Anxiety #Depression #Selfcare #PTSD #Positivity #Bekind #loveyourself #ChronicPain #AloneTogether #Endometriosis #Insomnia #SkinCancer #GeneralParenting #Parenting #Upallnight #Catheter #InterstitialCystitis

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    I wish people would take my weakened immune system seriously…

    All my life, I’ve caught bugs, colds and flus very very easily. But in the last ten years or so, it’s been much worse. Because of this, I have every vaccination available to me. The flu one, the pneumonia one, the meningitis one, the hepatitis ones, and five COVID vaccines. I avoid sick people like they literally have the plague.

    But then I get my sister and nephew that come over, and the gremlin will crawl all over me. Which I don’t mind. But then just as she leaves she tells me that he’d been throwing up ALL NIGHT.

    I run and wash my hands again (I do this repeatedly when he’s here cus my nephew likes to slobber). But, right on schedule… 3am this morning I wake up and had to sprint into the bathroom and even then, I didn’t make it to the toilet to be sick. I projectile-vomited all over the sink. I then spent nearly an hour curled up on the bathroom floor, shivering and being sick. My stomach muscles are so sore. My head hurts.

    She KNOWS I’m immuno-compromised. Yet she repeatedly pulls this crap when she feels lonely and wants to spend time with someone.

    I’m just really fricking frustrated and sore. 😞

    #chronicillnesswarrior #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #NAFLD #LiverDisease #Diabetes #InterstitialCystitis #Migraines #ImmuneSystem #immunosuppressed #StomachBug #stomachflu

    12 reactions 4 comments
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    Poor Mental Health - Trigger Warning - SH

    So, I have BPD. I was diagnosed back in 2016 but I’d been self harming on and off since around 2011, when I was 16/17. I don’t really want to go into the specific reasons why because I don’t think I can handle the flashbacks and cPTSD episodes right now. There was a LOT of abuse going on from my parents and from my boyfriend.

    Anyway. November 4th 2021 came around and my sister gave birth to the most beautiful little boy I’ve ever seen. I never knew it was possible to love someone as much as I love him. Because of the cuts on my legs from years ago, I have dozens upon dozens on scars on my thighs. And from the moment I first held and fell in love with him, I held his tiny hand and I promised I’d never harm myself again. Because I never wanted him to see the scars and ask questions. I didn’t want to ever put that on him.

    So, for the last 18months, when things become too much and I feel that need to SH, I’ve booked myself in for piercings (I’ve done that three times since he was born). But recently I’ve felt so helpless. I’ve had a severe lack of control and it was pushing to the edge. I really thought I was going to give in, but I managed to hold on. And two days ago, on Saturday, I had this tattoo done. I feel so much better. It’s so crazy how much these things help. I feel in control and I feel proud. I won’t let him down.

    #chronicillnesswarrior #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #NAFLD #Diabetes #InterstitialCystitis #Migraines #BorderlinePersonalityDisorder #BPD #Depression #triggerwarning

    71 reactions 15 comments

    This is a question for anybody that has urinary issues… This might be a bit TMI so I’ll explain it all below in the main body of text.

    I live with my mum as she’s my carer these days. Because she has issues with her back, she doesn’t clean the house very often. I try and manage what I can, but usually it comes down to her. The house isn’t exactly a pig-sty but it’s definitely not clean and tidy either. The stairs and walls have marks all over them from spills, or people with dirty hands touching things. There are sometimes bin (trash) bags on the upstairs landing from when we’ve tidied up a bit and need to take the rubbish outside.

    Onto the bathroom… As I said - I help when I can. But usually it’s mum that does it. And it isn’t done very often. Because of this, inside the toilet at the very bottom off the bowl (where it flushes away) is covered in this awful grey/green/black grime. And there’s often a bit of a weird smell. I usually give the bathroom a bit of a spray with air freshener, especially when we have company.

    Most people don’t say anything, but when people (usually other family members) DO mention the state of the toilet… Mum throws me under the bus. She will sit there and tell whoever asks that it’s entirely my fault. That my bladder issues make my urine do strange things inside the toilet. Like growing that grime and dirtying it up. And that that is responsible for the bad smell.

    And it’s really starting to upset me. I don’t think it’s my fault. At least, I really hope it isn’t. But the way she says these things just really embarrasses me. So, I guess my question is… Does anyone else have this issue? That your toilet is all grimey and gross because of their pee? Or is this all just a load of crap that she’s made up, and it has nothing to do with me?

    #chronicillnesswarrior #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #BorderlinePersonalityDisorder #InterstitialCystitis #NAFLD #LiverDisease #Diabetes #BladderPain #BladderIncontinence #Advice

    19 reactions 9 comments
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    'Shocking' lack of evidence on antidepressants for chronic pain'- New article from the BBC on a new review of previous studies on the topic

    Kind of an inflammatory headline in my opinion 😅

    As it could be read as: 'stop taking #antidepressants immediately as they don't help chronic pain AT ALL'.

    When rather the review is suggesting:

    A) Antidepressants have been prescribed for chronic pain for years and STILL there seems to be no clear or concrete understanding into how they help the pain of chronic pain sufferers.

    B) Confusion into whether antidepressants do help the pain aspect of chronic pain.

    C) As many suffers have [very unstandably] mental health issues they could be helping that. Making pain management easier 🤔

    C) Which antidepressants is concretely better for chronic pain.

    Article found here:

    Another wonderful day for chronic pain sufferers🙃

    I joke.

    It is better to have this awareness and recognition that ultimately MORE RESEARCH, DONE MUCH LONGER is urgently needed.

    However, I do feel like articles like this arm those who are very anti-antidepressants. The NHS is definitely trying to move away from prescribing medication in general for chronic pain sufferers.

    (In my opinion) though I believe this is more a money saving move than a research influenced change of course. As soon as I see CBT as an alternative I feel vindicated 😆

    For those who aren't aware the NHS (largely to save money) prescribes CBT for literally EVERYTHING nowadays 🥲😔

    #ChronicPain #Fibromyalgia #ChronicFatigue #Depression #Anxiety #MentalHealth #IrritableBowelSyndromeIBS #CBT #Agoraphobia #AgoraphobiaWithoutHistoryOfPanicDisorder #FunctionalNeurologicalDisorder #BackPain #Jointpain #AuditoryProcessingDisorder #BladderIncontinence #InterstitialCystitis #Insomnia #Asthma #Prediabetic #HearingLoss #hippain #dissociation #NHS #Nice

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    Glad today is over ...... #MentalHealth #CheckInWithMe #Anxiety #Depression #Selfcare #ChronicPain

    Well after a few days of the most debilitating anxiety I have had for a while due to that appointment today & the severe pain I've been in every day even just moving or walking with this catheter issues , I am just glad today is over !!I've done what and all I can do it's now waiting for results and it's out of my hands so I'm going to tey focus on the other problems and trying to get the help I need for them and try not be stressing to much over waiting for the results !! I feel like rubbish, I feel as though I look like death ,I feel as though I'm so drained with all this pain but tomorrow is a new day and I'm going to do my best to try have a good sleep ,wake up tomorrow and put my mind and focus on to other things .....

    #Melanoma #MentalHealth #CheckInWithMe #Anxiety #Depression #Selfcare #PTSD #Positivity #Bekind #loveyourself #ChronicPain #SkinCancer #Endometriosis #COVID19 #longcovid #Catheter #InterstitialCystitis #UTI #AloneTogether #Parenting #GeneralParenting #Insomnia #Upallnight

    36 reactions 11 comments

    Background Diabetic Eye Disease

    Hey, everyone. I hope you're all okay... I just need to vent a little. I hope that's alright...

    I'm feeling a bit disheartened today. In the last 18months I've been exercising a hell of a lot more and really watching what I eat and drink. I feel pretty good for it and I'm steadily losing weight.

    Recently I'd noticed that my vision has been getting worse - more blurry and quite a few more 'floaters' in my eyes. This morning I went to have my eyes tested. As expected, there was a change to my prescription. My astigmatism has worsened so I need a larger prism in my lenses.

    Anyway, after he finished doing that part of the test, he looked at the back of my eye and told me that I have Background Diabetic Eye Disease. I know it's the early stages but I still feel really disappointed in myself. 😞😔

    #chronicillnesswarrior #ChronicPain #POTS #POTSUK #EDS #NAFLD #LiverDisease #Migraines #BPD #Depression #Anxiety #InterstitialCystitis #Diabetes #Vent #Advice

    25 reactions 8 comments

    Infections and Insomnia

    Hey, everyone. I hope you're all doing well!

    I just had a question to ask...

    So, from 14th April and up til today, I had a raging sinus infection. My eyes were so swollen, and you could actually SEE my sinuses above and around my eyebrows and eyes. My whole face ached so fiercely and I often ended up in tears because of it. Which made things so much worse.

    At night time, I'd crawl into bed at 9pm and according to my mother, I was asleep within minutes (she could hear me snoring faintly). Which is very weird, because I have pretty bad insomnia. It normally takes me hours to fall asleep and even then I usually end up having to get up to pee multiple times.

    This isn't the first time my body has done this. Nine years ago I developed a very serious case of tonsillitis. My GP called an ambulance because my fever was at degrees centigrade. For the entire of the ambulance ride I was drifting in and out of consciousness and by the time we arrived at the hospital, I started having seizures because my fever was so high. I don't remember any of this - I was so out of it. I had to stay in the hospital for two weeks, and for about 90% of my stay there, I was asleep.

    This now happens every single time I get an infection. Doesn't matter what type, though. It could be a UTI, laryngitis, chest infection, winter vomiting bug, etc. It's like it knocks me out.

    So, I guess my question is... Does anyone else have experiences like this? I'd love to know how you handle it and whatnot.

    Have a great day, everyone!

    #posturalorthostatictachycardia #POTS #POTSUK #EhlersDanlos #EDS #ChronicPain #chronicillnesswarrior #NAFLD #LiverDisease #IBS #BPD #InterstitialCystitis #ic #Migraines #Diabetes #Infection #Insomnia #jointhypermobility #Advice

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