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    Normal MRI… what now?

    My MRI results came back as normal & ENT have discharged me.

    I’m not quite sure what to do. Does this mean I have to deal with migraines for the rest of my life now? My hearing randomly going? The pain and mental attacks from the increases during colds etc?

    I know, I should be grateful that it’s normal. But I’m just feeling lost and frustrated. There’s no plan now other than just having to deal with it.

    #Sinus #ent #MRI #symptoms #ChronicPain #ChronicMigraines #Hearing #MentalHealth #Feelinglost #normal #WhatNow

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    Gotta catch ‘em all

    The last few weeks have been particularly hard on me.

    Mentally, I’m mostly okay. Physically, I’m not. And that’s caused me to question a lot of things, wonder how it got to this point, increasing the severity of incidents where I won’t take painkillers.

    I’m being referred to cardiology for a tilt table test.

    In April, I was told I had low blood pressure but they didn’t seem too worried. At the end of May after worsening lightheadedness, I was told the same, and I was basically just told just to eat more and take iron supplements. And then last week, I went back again.

    I initially made the appointment for something else a month before (I had to wait for a month), but then the lightheadedness got worse, so I told them about it again. I told them I had taken iron supplements, I was eating healthier than ever, I was staying hydrated, I was staying active, I was just really doing all the right things. And again it was low.

    They’ve diagnosed me with postural hypotension in the meantime and told me to try compression socks for a week, and then if that didn’t work to call them and they’d refer me. So here we are. I get to have a blood test in September while I wait to be seen.

    My sinus issues had a major flare up. I was so miserable with it that I sent a email basically begging them to give me an appointment (I was referred back in February but waiting list is apparently a year) because it was beginning to affect my mental health, and I get to see them in October.

    It’s affected my hearing, so I had to chase up my ENT appointment. I hope it is just the sinus issues causing it, and not a third relapse of my ear problem, especially as everything seemed perfect last time I saw them. It would be nice to celebrate the first winter in 11 years without an ear infection.

    And then of course, my referral for heartburn/ acid reflux. I see the doctors for a one-month review, which will end in the referral they wanted to do (because I had suffered for at least 5 years w/out diagnostics) but held off on. The medication they put me on has somewhat helped, but I’m still having to take gaviscon most days.

    Finally, the chronic pain. It’s been difficult these past two days, and after (stupidly) lifting a sofa up because the cat pushed her toy under it (and then she herself went under it so I had to call my sister because I physically couldn’t lift it for much longer), it’s been worse. I still forget that I’m not really supposed to do things like that, and I always pay the price (pun not intended, but yeah cause volatarol is expensive).

    I’m just really very tired. I remind myself it could be worse, which is probably what has helped me stay positive and mentally mostly okay, but sometimes it gets to me. Particularly when it’s yet another tablet added to my daily medication. It makes me tired, and I think “it only gets worse as I get older”. I want to stop them, but I know I can’t. I ended up in hospital the last two times I did.

    Or another time it bothers me is when everything is getting worse/ is bad/ is happening all at the same time. This post doesn’t even cover all of it, but at this point I’m too tired to write anymore. Speaking of tired, I’ve only had 5 hours sleep each day for the last 3 days. I wake up early and then typically can’t get back to sleep because of pain and insomnia :))

    #ChronicPain #Depression #GastroesophagealRefluxDisease #Heartburn #AcidReflux #BloodPressure #Lowbloodpressure #PosturalHypotension #Hospital #DoctorsAppointments #Doctors #Sinus #HearingLoss #ent #cardiology #Hearing #Medication #MentalHealth #Pain #BackPain #Insomnia #Painsomnia

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    What's up with this chronic nose inflammation?

    Hey all, Ive been having inner nose inflammation for at least 3 months, its worse in the right. I do have chronic sinus issues,but never this. You just look up my nose and the tissue is red. It hurts and has caused nosebleeds at times. I've been to the ENT and they gave me a steroid nasal rinse and ointment. It helped some but didn't go away. I was kinda peeved they weren't trying antibiotics, which i know...i know all about them. It feels raw in these areas and can be pretty painful, cause headaches. I have to go back but am not happy with the treatment plan as I cannot take oral steroids, but that is all they offered. Not sure what to do..just really lost and frustrated. I've had nasal issues over half my life and never had this. I know its not covid, ive been tested. Im on an allergy shot, i take meds, nose rinses, flonase etc. I don't get it at all and not getting much help.#chronicdisease #ChronicIllness #SinusInfection #ent #Inflammation #RareDisease #ChronicPain #nosebleed #Undiagnosed #Upallnight #AutoimmuneDisorder #AutoimmuneDisease #Anxiety #Fibromyalgia #Migraine #nosepain

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    Recovery Period

    So on Sunday I had begun my self isolation, and I hated every second of it. My mental health was incredibly low, and I never got anything done as my schedule was an absolute mess.

    On Thursday I had my surgery and it went well. They didn’t have to cut behind my eardrum which was brilliant and meant less stitches. I woke up in the recovery room and was in so little pain that I went back to sleep 😂

    Not the case now of course! I’m in a fair bit of pain which isn’t affected by the painkillers, my ear is bleeding and the left side of my mouth is numb. Living with chronic pain though, I’m fairly unbothered and just living with it as I know it’s only temporary. Oh! I’m also pretty deaf in that ear but that was the one thing I was expecting the most.

    I have a post-op appointment in 3 weeks which I’m a little nervous about. I had to have this op because I was in the 1% that had a perforation from a grommet, and then I was also in an even lower percentage for a cholesteatoma. There’s a 3% chance of this op being unsuccessful.

    Though of course I’m not spending much time worrying. I’m just cautious about celebrating early about closing a 16 year chapter. And I doubt it’ll be immediately obvious yet in terms of whether the op was unsuccessful. After all, last time things looked successful and good for a year and then it wasn’t. Then it stayed stable for 4 years and then it didn’t. It’s just in the back of my mind.

    #ChronicPain #Surgery #Operation #HearingLoss #tympanoplasty #ent #MentalHealth

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    Expect the unexpected

    Two weeks ago, I had a call asking to arrange pre-op. I didn’t think much of it at the time, other than it was a bit early. And then last week I had a call giving me a date for surgery, which is in 2 weeks time.

    It’s caused a mixed of emotions. I’m grateful that I’m getting it over with sooner rather than later, but confused as to how I skipped the 6-month+ waiting list. Having it now is better than in the summer though, as I’m typically prone to infections more in the winter than the summer (I haven’t had a single winter without an infection in 10 years now).

    In other news, last week I was urgently referred to CMHT, and then today told my case wasn’t being taken on as I’m already under another service. I knew from the tone of voice the person who called me today had what the news was going to be.

    In the last piece of news, I filled in the pre-assessment forms for dyspraxia, and have a meeting to discuss it in two weeks. The more I read about it, the less I think I have it, but at the same time I definitely have some difficulties that overlap dyspraxia symptoms.

    #Dyspraxia #MentalHealth #Depression #Surgery #Operation #ent #CMHT

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    Back on the waiting list

    They think the hearing loss isn’t because of the ear infection, and after saying no for 5 years I finally said yes to surgery. Waiting list is at least 6 months.

    Doctors appointment tomorrow to see what they suggest for the weight loss and bruising. I wonder if they’ll think it’s a relapse of my ED. I never realise them myself.

    #bruising #bruise #weight #WeightLoss #ED #EatingDisorder #AnorexiaNervosa #ent #Surgery #HearingLoss

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    Soap opera life

    Sometimes it feels like my life is a soap opera.

    I now have a harasser/ stalker. I haven’t felt safe where I live but don’t really have anywhere else to go until tomorrow, which would then mean being in the same house as my ex boyfriend and that’ll just have a whole other impact on my mental health.

    I’m hoping I am actually safe here though as my neighbours and flatmates know what the person looks like, as well as the buildings security. Been clear so far as far as I know.

    In great news (understatement), my blood test results came back normal!! On the lower end of the normal range but it’s normal and that’s all that matters.

    I’m still bruising and losing weight though, so I have a doctors appointment on Tuesday. I’m now below 7 stone, and I don’t remember the last time I was. Also losing hair.

    ENT appointment on Monday and I’m impatiently waiting. I just want to know what kind of course of action they want to do. And also to confront them about why they never told me about the cholesteatoma.

    Chronic pain has been bad unfortunately. I actually had to take painkillers. It’s a lot of sudden sharp pains and it seems to be pretty constant. It is what it is though.

    #ChronicPain #ent #Stalker #Harassment #bloodtest #WeightLoss #HearingLoss #HairLoss

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    Gaslighting

    It sucks to be gaslit by anyone, but it’s even worse when it’s by the doctors.

    A few years ago I had an ear infection and on the screen in the doctors was the phrase “cholesteatoma”. I had had a CT scan about 2 years before and this was never mentioned to me.

    Afterwards, I requested them to find the letter from the CT scan results and they said they couldn’t find it. And I was mocked for asking about it.

    It was then repeated verbally when the surgeon was going through risks of my jaw surgery. Processing all the other information given, I never asked what it was.

    It’s something that’s always bothered me, so a few weeks ago when I switched doctors surgery, I requested access to my medical records. This was granted.

    Last night I spent time trying to find the letter. And I found it. I sat there in anger, shock and disbelief for a good while. And the way they worded their disappointment when I declined the operation to fix what I knew as just a tiny perforation in my ear when they advised against having an operation.

    I wonder if my hearing loss could have been avoided if they had told me. Because I wouldn’t have turned it down, had I known. I was always on the fence about it, but I trusted them when they said there wasn’t much point.

    On my current referral to ENT, it’s never been mentioned. I plan on bringing it up when I see them. I just don’t understand why they hid it from me.

    #Cholesteatoma #ent #ear #Gaslighting #HearingLoss #CTScan

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    Goodbyes and worries

    I’ve been saying goodbyes. To the people I’ve worked for for 5 years, my ex’s parents (or so I had thought), and in a few days my colleagues. And next week, my home town (though I have already moved in, I am having to finish work up in my home town first).

    I gave up the one-sided efforts with my ex. I finalised them on Monday, when I went to deliver him a letter. It explained that I couldn’t be his friend, with the reasons being things that were down to him. Because I couldn’t blame myself for any of it, and I explained the ways I tried to in the letter.

    Unfortunately, or fortunately (depending on the way you view it), my faith and my personality make me a very forgiving person. Add in the fact I’m supposed to be living with him, I was never exactly able to cut him off.

    I had a message from E (my ex) after I left, which was more of an apology than the “sorry” I got in person. And he said he would do whatever it takes to make up for the wrong he did and the hurt he caused. I acted cold but he was insistent. So the next day I messaged him extending an olive branch, but I warned him that if things didn’t change that it was going to go back to what led to the letter. But so far, things are no different and I’m the only one bothering. I know it’s not fair of me to say that given it’s only been a few days, but from dating him I know him. I don’t believe things will change. But I’m giving him the opportunity all the same.

    In other news, I’ve had other stuff going on.

    I lost another 5 pounds. I’m back to the same weight I was 4 years ago, and it takes the total weight loss to 10 pounds in less than a month. It’s a lot to weight to lose to illness and depression (10% of my body weight). I’m hoping it is just that, but I guess I will find out when I have my blood test in a few weeks.

    I haven’t heard back from ENT since I had my hearing test, so I called them today. Apparently they hadn’t passed on the results to the doctor that saw me, and it took me calling them for them to do that. So I have some extra waiting time now because of that, and also worry because I have been in this situation before and they’ve discharged me. Surely they shouldn’t this time with hearing loss though?

    I’ve also been feeling really burnt out as of late. It feels like all I do is work, eat, sleep. I’ve just got to get through this week and things should be easier though, but then also busier so I can’t really win either way.

    Anyway, here’s to hoping things will settle down soon. And I wish the same for anyone else who feels like they just have everything going on.

    #Depression #MentalHealth #illness #WeightLoss #Ex #ent #HearingLoss #underweight #goodbye #moving #Forgiveness #Burnout #burntout #breakup

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    Fun and games

    After the ear infection two weeks ago, I haven’t completely recovered. They’ve booked me in for a hearing test next week but let’s hope it’s all fine.

    I can’t catch a break though. A few days ago, I came down with a sore throat. A cold (not covid- two of us had tests for non-related reasons) had been passing through the family so I figured it was that. But this was bad and getting worse so I looked in the mirror with a torch and long story short, I have tonsillitis!

    On Friday I had come home from holiday and I was going to wait to call the doctors on Monday to see if it got any better, but my mother suggested I call them on the same day so I did. Good call as I’ve been getting worse and now feel absolutely rubbish.

    I’m not one to sit and feel sorry for myself. I’ll always do my best to get up moving and doing stuff, but for some reason I’ve been hit hard. Eating feels like running a marathon, I had to crawl up the stairs earlier because I was getting so dizzy walking up them, and everything just hurts (noise is actually physically painful!). At least the paracetamol makes me feel more normal when it finally hits.

    In brighter news, I’ve got my second vaccine booked for next week. I’ve heard the second one is worse than the first though, so that’ll be fun! (last time I couldn’t move my arm much for a week, and I need my arm for my job and I have a full week of working so we’ll see how it goes!).

    Oh! One thing I forgot- been referred to ENT for postnasal drip that is no longer affected by anything I take for it and is keeping me up at night. ENT are loving me!

    #Pain #ent #cold