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    Chronic illness level up!

    New diagnosis: POTS. Was on ivabradine for a few weeks and ever since I’ve come off it my heart rate hasn’t been happy. For some reason my blood pressure has suddenly become normal after being low for months. Not complaining, just very confused.

    Went for an MRI last week for my sinuses, said it would be about a week for results but still waiting. On the bright side, that probably means it’s not (too) bad news. I’m glad I pushed to see them earlier though, because I caught a cold from my housemate and it caused hell with them. Constant congestion, migraines, lack of appetite, nausea, coughing, and I took about the same amount of painkillers in a week that I had taken in the last few months/ maybe even a year (I am VERY opposed to them & chronic pain has left me with a high pain tolerance anyway).

    Waiting on GERD referral & have heard nothing. Doctor prescribed a PPI but didn’t put it on repeat and the progress made on it was lost when I had to fight for a week to get it re-prescribed after I had ran out.

    Chronic pain has been quite a struggle. I’m concerned about the increase in occurrence of pain so I booked a routine doctors appointment. Also having a flare up of my foot pain (tears when walking) so it’s just an extra thing I get to deal with.

    And on top of all that, trying to keep my mental state okay and making it look like I’m okay to everyone else. It’s all just really exhausting, but there’s this quote that I remember a lot (but will probably get it wrong slightly): “it takes ten times longer to put yourself together than to fall apart”

    Okay, I’ll finish this with some better news. I’m cleared 1 year post-op and hearing loss is confirmed not to be an issue anymore. It was borderline but I’ll take the W. I also had my two jabs, perks of being disabled I guess.

    #ChronicIllness #ChronicPain #Surgery #Postop #MentalHealth #Migraines #PosturalOrthostaticTachycardiaSyndrome
    #GastroesophagealRefluxDisease #HearingLoss #Depression #InvisibleIllness #Disability #Disabled #BackPain #chronicbackpain #Lowbloodpressure #BloodPressure


    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


    High Blood Pressure, Medication Changes #BloodPressure #Medication

    I’m wondering how long do you give a new bp med before you call the doctor because you realize it may be causing increased physical pain and symptoms?

    I’ve only had a high blood pressure for a couple of years, extremely high. 180-200/104. Before that, I consistently had a bp of about 112/75-80, my whole adult life. Until the pain got unbearable again and mobility was affected so much, still is.

    I’ve been on bp meds for about a year now. I take 2 different meds. It took months and months for me to get through to my doctor and make him hear me. Something has not been right in my body and I kept telling him, he’d blow it off.

    My neurologist (a hundred miles away) continues to do bloodwork and every single time my potassium is too low, my sodium way to low, etc. The e.r. (heart attack scare), had to pump me full of saline and every blood test is showing the too lows, too highs, etc. She kept telling me to call my doc and tell him bp meds need adjusted, he’d blow it off.

    Last week-
    Finally, after a heated online message to him, he heard me. I was given an immediate next morning appointment (wow!, first time ever). He changed 1 of the 2 meds. I feel like it too, is making more pain in my legs, more full pressure feeling and more tingling. How long do I need to give this new med a try?


    POTS and bloodshot eyes

    I've been suffering w POTS for a year or two now (diagnosed) but just this week ive developed very bloodshot eyes? does anyone else have this issue? i just thought it could relate to POTS bc of blood pressure but i wanted to know if its common for some or if it could just be from something else bc i cant find anything about it #PosturalOrthostaticTachycardiaSyndrome #BloodPressure #EhlersDanlosSyndrome


    Worried about what to do next.

    Went to the doctor on Friday and my A1C has gone up to 8.5! 😱😭 Feeling stressed because finances are slim and I can’t afford to eat properly. I supposedly “make too much for any type of assistance while also dealing with high blood pressure and fibromyalgia. I currently feel the torturous tingling/ in my hands and feet while at work. #Type2Diabetes #Fibromyalgia #BloodPressure #Anxiety #Depression

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    Blood Pressure Monitor recommendations?

    I think I need a new BP monitor, mine seems to be random lately. I could take it 3 times in a row some days I’ll get the same or close results and other days they vary drastically to where it makes no sense. My blood pressure monitor is an Omron BP760.

    I have to have something accurate as I depend on my BP numbers to determine my meds. I have a low-ish BP but both of my heart meds that I need to hopefully heal the cardiomyopathy also lower BP so if I’m under 90 systolic then I can’t take them. Otherwise I drop dangerously low and have passed out.

    What blood pressure monitor do you find works accurately for you?

    #BloodPressure #CardiovascularDisease #Cardiomyopathy #CongestiveHeartFailure #medicaldevice #healthmonitoring #HeartDisease

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    Is this a normal reading ?


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    Warrior: battle of sleep

    I feel as someone in her early 20’s I shouldn’t have to fear sleep. My blood pressure when I lay down has a bad habit of bottoming out. And goes lower when I sleep. I fear something will happen in my sleep but sleep is also the only time I find peace without pain and thoughts. It’s peaceful but a void type of peaceful. I’ve told my mom that if I’m not up by certain times open my door and make sure I’m okay because I’ve had a blood pressure bottom out so much it was a struggle to stay awake. And that was after just a nap. My cardiologist knows but doesn’t want to change meds because they rather me bottom out rather than have highs. #ChronicIllness #PosturalOrthostaticTachycardiaSyndrome #AutoimmuneDisease #Anxiety #Depression #MemoryLoss #BloodPressure


    Here we go again

    #Depression and #Anxiety haven’t been getting better so did another econsult and long story short, they’re putting me back on #Sertraline , which I was on 5 years ago.

    On another note, today I found out I can’t do sit-ups and I’m wondering if it’s to do with my #back . I’m trying to get more fit because I’m unhappy with how unfit I am and with the sit-ups I managed to lift myself up until my lower back and then I just couldn’t feel it, not even #Pain .

    Also on another note, my #lightheadedness is still ongoing and I’m still walking around like a drunk person at night. #Doctors suggested it was to do with medication change making my #BloodPressure drop.

    And on yet again another note, my #Surgery isn’t going ahead on Tuesday. I still didn’t have any indication on Wednesday and I called my normal hospital and they made me call this other hospital who were stubborn af so I called my normal hospital again and they talked to the consultant I normally see there and they broke the news to me.

    They’re now saying October but I won’t hold my breath because we’re officially now having our second wave of #COVID19 so I suspect it may be delayed until that’s over with.

    Okay on a final note, today (well now yesterday because it’s midnight) marked 3 years since my #Suicide attempt, and 3 years since my pain started. I don’t know how to feel about it.


    How beneficial would an Apple Watch be for health? #LivingWithPOTS #Hypoglycemia #BloodPressure #Tachycardia

    I’ve been really considering buying an Apple Watch because I have a terrible habit of ignoring my body when it tells me to slow down. For example, I’ll be with my boyfriend and we’re painting or going for a walk and I start to feel faint and tired. But I don’t have anything to check my BP or HR. So I ignore it. A part of me feels like having an Apple Watch will motivate me more to pay attention to my body (sounds kinda bad doesn’t it?) and be easier for me to check my blood pressure and heart rate without having to carry a BP cuff or pulse oximeter. But I’m worried I’m being a little dramatic with considering this option...
    Has an Apple Watch been beneficial to anyone else with chronic illness? Any thoughts or advice?