Diary from a hospital bed.

Thursday:
The walls are white, as white as I.
The cupboards are pale blue.
There is one chair to sit on for visitors.
The bed is high, and the pillows are too soft.
The lady next to me, eats and vomits, eats and vomits.
All of the patients are wearing white, but not I.
I’m in black leggings and a black tshirt.
They are staring at me.
Why are you here? They ask.
What are your symptoms?
What medications are you taking?
Pain scale from 1-10?
Here, take this tablet.
Have you tried…?

I am sick of answering questions and repeating this story. Nobody has asked me who I was before this illness… they’re only worried about who I am with it now.

Friday:
I have barely slept.
The nurses here are as lost as I am.
The nurse’s button isn’t connected so we each have an oldschool bell to ring when we need someone. The nurses cannot hear it. One poor old lady next door to me rang hers from 2-3am until someone came to her aid.

This ward wasn’t meant to be open,
the nurse said. It’s only half ready.
I haven’t seen many nurses today in here.
They’ve left me.
I saw my Dr once, but he was in and out as usual.
I had to fast from 12am. And then my IV was taken out and I was told to take Metamucil every fifteen minutes for THREE hours. I am amazed that my stomach kept it down. My nausea is incredibly bad.
The stomach MRI went for an hour opposed to twenty minutes.
I was interrogated by a Dietitian. Are you bulimic? Anorexic? Drug addiction? Abuse? What do you eat? How much? Did a life event cause this? Are you sure you aren’t forcing yourself to not eat?
Please stop.
I had a test for Addison’s Disease. Oh my, the pain. I was jabbed in the shoulder with a drug called Synacthen, and had nine blood viles taken from numerous veins.
I caught a glance of myself in the mirror today and burst into tears. I have faded to nothing. I am exhausted, mentally and physically.
I can finally eat after fasting for more than twelve hours, and I don’t even want to. I have no desire for food as all I can taste is Metamucil in the back of my throat.
I am trying to stay positive, but it is hard to not hate it here.
I miss my bed and family and friends.
I miss being able to shower in my shower.
I miss my food, and my routine.
Mostly, I miss my health, and I am reminded of why I have to stay here.

Saturday:
I’ve had a lot of visitors today, as I assume I shall tomorrow. I’m exhausted. A fill-in Doctor told me that my results came back as negative – I am ‘perfectly fine’, apart from having Gastroparesis. Apparently the only thing that showed was a semi-low white bloodcell count… sign of infection? He didn’t seem worried by it.
Strange, because I feel anything BUT fine.
I feel worse here than at home.
I’m quite dizzy, pale-faced, crampy in the stomach and bowels and very nauseated.
The Nurses keep giving me medication, upon medication. My little body is not used to it.
They make you feel so small; the Nurses and the Doctors. Or maybe it is just me…
I must await Monday for my usual Doctor to return.
I must remind myself that I’m not losing my mind. It’s a bit hard when the world is against you, and your body won’t negotiate.
On the plus side, I finally got a red jelly cup last night instead of yellow.

First world problems right here.

Sunday:
More sleepless nights.
The older lady next to me was moaning all night.
She moaned before sleep, during sleep, when she went to the bathroom. Constant moaning.
Then she started yelling in Italian. I assumed she was dreaming, or she was yelling at me to turn off my light.
I had nausea and intense abdominal cramping all night despite my efforts to get rid of it. I tried deep breathing, my acupressure bands, a cold towel, as well as every medication you can think of.
Maybe that’s the problem – the overuse of medication.
The nurses seem to think that because I don’t have any limbs falling off, or any scheduled surgeries, or visible symptoms that I don’t need to be attended to. I haven’t seen a nurse all morning. They think I am taking up space for someone who ‘really needs it’. Little do they know that I don’t want to be here either. My Doctor insisted. He seems to still believe there is an underlying mystery cause to my illness, and that we have no chance in getting me better until it is found. I wonder if he’ll feel the same tomorrow?
The dizziness is overwhelming. I tried to have a shower alone today, and held onto the railing fearing I would fall. My body is so weak. I miss little things like that… being able to enjoy a shower without fearing I’ll lose my balance.
There’s something about hospitals that saddens me. I’m not sure if it’s the general gloominess, or the fact that I’m the only young person I’ve seen in days of being here.
Tomorrow my Doctor comes to visit, which shall be interesting.
I can’t help but wonder – will I ever recover from this?

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51 comments

  1. Aw honey, I’m so sorry you’re in the hospital. How are you feeling? Don’t let their negativity and your perfectly fine get to your head. No illness is in our heads, they just say that so they can get money. You’re strong, you may not realize it but like you said in one of your posts. This illness doesn’t make you. You’re very brave. Glad you’re a fighter 🙂

    Liked by 1 person

    1. Not feeling the best at all. Probably worse being in here. The symptoms are only managed here with medication and I am not used to that… My body isn’t used to that.
      Thank you xx

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      1. Oh god I hope those medications aren’t causing long term damage because they actually can. Hospitals are horrifying. :S Do you have music or something with you to distract you. I find being distracted helps the most when you’re feeling worse or just ill. Try playing games on your phone? Cookie Jam is my favorite it is a free app it’s cute and challenging if you like matching foods for a game :)!

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      2. It is definitely making me worse! I wasnt on much before I got in but now I’m on more medication than food 😦
        I have downloaded SO MANY GAMES haha it’s crazy. Thanks for the heads up. I’ll download it now xx

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    2. Cass! Stick to your guns! I too am feeling like crap. Other people who tell you that it isn’t true are saying that because they have yet to do their work and find the cause of your pain. Nurses jobs are to care for you. If their fail in doing so, make noise! They answer to someone. Oftentimes there will be a patient advocate. Ask to see if there is one where you are. I understand your misery. I am holding your hand as I write this. Someone very recently told me that one must be their own advocate am I know that it is so! So while you are in that hospital (I dislike them too) insist on a continuing search for the root of the problem. I’m thinking about you. You are NOT alone!

      Liked by 3 people

  2. This all sounds so rough. I hope they figure something out quickly. I know how you feel about simple things like showers, yesterday I found myself climbing out of the shower repeating to myself “don’t pass out” trying to maintain consciousness. I know I don’t know you but I wish I could be there to keep you company while you are feeling so out of place.

    Liked by 1 person

    1. Oh thank you! The dizziness is the worst. I have to talk to myself too… More to my brain and telling it to just keep stay upright!
      That is so lovely. I wish for that too. It’s hard to be here on your own most days xx I hope you feel better today

      Liked by 1 person

      1. Luckily today is an easier one for me. Hopefully you’re right and you’ll have lots of visitors tomorrow too. Hang in there! Oh and I so admire how you push yourself, I wouldn’t have the guts to crawl through a store if I needed to. You are a trooper. I know you’ll stay strong til you get the diagnosis you need!

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  3. I’m so sorry hun. ❤
    Can you have a chair to sit on in the shower? That way you don't have to worry as much about staying upright and not falling. Sitting helps me in the shower a lot, I get dizzy a lot too, especially in the shower when the water is hot enough to sooth my aches and pains. Having access to cold air flow to breathe through helps me too, so I usually leave the back part of my shower curtain open a little, so it draws in the cold air.

    Liked by 2 people

    1. I will have to ask for one. Unfortunately our silly bathroom is tiny and doesn’t have an air vent so the room is very hot (doesn’t helo with dizziness). We share it too so it never airs out. Hospitals down here are hopeless!
      Thanks for your support xx

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  4. Don’t forget to advocate for yourself. If medicine is only to relieve symptoms, you do NOT have to take it if you don’t want to. And let your doctor know you’re feeling worse….who knows, that might give him a clue on where to look? Hugs. Hospitals are a weird oxymoron where all you’re allowed to do is rest, yet you never feel more exhausted….

    Liked by 3 people

    1. I have said no a million times. They said I have to have it as it is written in my files. I have to await my doctor’s visit tomorrow! This digestive medication is awful, and ruining my gut more than it already is.
      And yes, I agree! I feel worse… Xx

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      1. I’m learning to say no to my doctors too :/ It’s hard when you’re so vulnerable. Maybe you can gather some support from family and/or friends to make a decision about your care. I can’t help but feel this doctor is being SO irresponsible to abandon you like this. He’s racking up the bill and not doing a thing! I’m so upset. I’ve been in a similar position. My anger is mostly over my own unresolved issues with medical “experts.” Still, I hope you feel safe. *tight hug*

        Liked by 1 person

  5. Hey. I’m following you from the US so I know we do things differently, but I just wondered if your doctors might have considered looking somewhere else if everything GI related is coming up with a blank? I’ve seen issues similar to yours related to needing to have a gall bladder out (my niece). Or pancreatitis? (My friend)
    Low white cell count doesn’t mean infection, at least not in US medicine. *High* white cell count means infection to us.
    I just wondered if they’ve thought of anything else. I’ve been in the chronic illness community for quite a few years and I’m living with a brain tumor right now, so I get the frustration.
    Sending well wishes!

    Liked by 1 person

    1. Yes, we’ve checked other things too. I was diagnosed with Gastroparesis (partial stomach paralysis) but my doctor is doing further testing as he is not satisfied with the answers. Oh, I was certain he said it means that I’m prone to infection/fighting infection. I’ll have to ask again.
      I wish you the best in your recovery x

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  6. I know how hard it is being in the hospital…i can relate to everything you mentioned in this post. I have faith in you ❤ Thinking of you and sending all my love your way,
    -sandy

    Liked by 1 person

      1. when i had scoliosis surgery, i remember nurses being the way you described. My boyfriend had the same surgery years later and I visited him and it was like going through it all over again. Glad to see that you’re able to write to us though! Give em’ hell in there! 😛 ❤

        Liked by 1 person

  7. Hey, I’m so sorry you’re experiencing this. I used to work as a nurse and we’re supposed to care for our patients and make them feel better not worse.
    Do you mind if I ask you? Do you know how many medications you’re taking and what they’re for.
    As we’re taught, nurses should apply nursing intervention first, and don’t depend all on medications. We’re also supposed to act as a nursing advocate. You the right to voice out your concerns. Nurses are supposed to help holistically.
    You have a right to complain about the side effects so the doctor can stop it and replace it with something else that won’t make you feel worse.
    You also have the right to ask if there’s a way to lessen your medications. They don’t know the cause, so they’re treating the signs and symptoms.
    Those signs and symptoms can also be treated with something else that’s not medications.
    Maybe you could ask them too. What’s the plan for your health?
    It’s not healthy to take too much medications because it might start a problem in your kidney.

    Liked by 1 person

    1. Thank you for replying!
      I actually just got a changeover nurse who is extremely lovely and not forcing me to take anything I don’t want to. The other ones though – not so nice. Regardless of how the medications are making me feel! I’m on Motilium three times a day – some are giving me two tablets and others are giving me one. I’m on Zofran every eight hours, Panadol every four and Buscopan Double Dose as required for cramping… There is no negotiation with them! It’s awful! They’re telling me to wait for my Doctor tomorrow but I fear the medication is already doing too much damage…

      Liked by 1 person

      1. Hey I’m so glad you now have a wonderful nurse. So sorry for the very late response. I got sick and I was finishing some article deadlines last week.
        Are you still taking the meds? As for the cramping, I have bad ones too. It’s so painful, I just wanna pass out, once they even rushed me to the hospital. One of the things I do is apply warm compress.

        Hmmm… What else, how are you feeling now?

        I’m now catching up to some posts I have to write.

        Liked by 1 person

      2. I hope you are feeling better! I’m still on the digestive meds. They don’t seem to be making me better or worse. I’m still dizzy and nauseous. I’m also seeing a physio and acupuncturist! Busy busy.
        Enjoy writing but make sure you rest ! Xx

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  8. Do you have earbuds? Can you watch YouTube videos? Type “documentary” and whatever word interests you, there are tonnes. Or if you like fantasy and you don’t mind reading on a screen, Brandon Sanderson wrote a novel that you can read for free on his website, it’s pretty good. In fact lots of novellists have extracts or short stories on their websites (Joanne Harris, Holly Lisle…), hopefully that might keep you distracted for a while. I hope that helps a bit. :/ “Bon courage” as they say over here!

    Liked by 1 person

  9. I hope you feel better soon and am glad you are getting some help in the hospital. As for the nurses not checking on you, let them know what you need. Sometimes you have to be your own advocate. Hospitals make me sad too but remember, you are one step closer to finding an answer. Hugs.

    Liked by 1 person

  10. Even if you don’t get resolution by the end of your hospital stay, they’ll know what you don’t have, which is helpful even if it’s incredibly frustrating. Having just gotten out of the hospital myself, I can totally empathize with how demoralizing the whole experience is. If they have chaplains or counselors available for patients, it can help to have someone to talk to who isn’t trying to stick you with a needle or throw pills at you. Also – laughter really is the best medicine. Find a little comedy on the tv or your laptop and let your inhibitions go. Maybe your roomie could use a good laugh too ;).

    Liked by 1 person

  11. That just sounds horrible. I’m glad you had friends visiting – people who cared about you and wanted to check in on you and make sure you weren’t alone. Although, when you are feeling that shit sometimes the last thing you want to do is ‘entertain’ others. Sending you hugs from (probably) the other side of the world.

    Liked by 1 person

  12. My heart aches for you just reading this, Cass. It makes me want to be there by your bedside and hold your hand, read to you, or talk about the all the possible futures ahead of us both when things will be so much better – anything to distract you from this misery for even a moment – and we have never even met; just commiserated over blog posts. You have such an amazing light that shines from you, even during your bleakest, weakest, most torn down moments. Just know, that I am halfway around the world and thinking of you, and sending you strength, support, and love. You may be lonely right now, but you are never alone. ❤

    Liked by 1 person

    1. You are so lovely, Zoe! You have definitely made my day a little brighter. Being stuck here is awful. I believe I am getting worse from being here… It is so depressing!
      I am happy we have met too
      I am here whenever you need!
      xxx

      Liked by 2 people

  13. i so so hope you get better quickly and super fast…being in a hospital with something that is hard to understand for your doctors is not just crazy but super crazy and only you can understand what you are going through…
    … do not give up on writing…write even if its for you…will help you feel good..
    wish i could send you flowers ..right now sending virtual hug from far away land of my side…

    you know what you should do, look out for silly patients and good looking interns… 🙂

    when i was in hospital i met many serious and some super silly patients…there was an old lady who was admitted because she was constipated so she was kind of well..not sick visibly.. while i was lying there hating my stomach, she would talk to her visitors about how much she is waiting for this particular movie to be released and how she once became friends with this duchess of some state…etc…she was fun to be around ..was like a tv show..

    and then there was a guy who wasnt sick..not at all. ( he would walk around when he was bored) yet he was in ICU along with all super serious patients (who cant walk) …he would crib loudly when nurse would come with an injection… even the nurse was once like ” Sir that girl over there is half your age and serious, yet she never cribs”..i think she wanted to add shut up but she didnt.cause this guy was some big thing..thats why he was the only who was allowed to have visitors in an intense care unit …

    so i hope you find some silly patients to keep you entertained…and of-course super good looking interns all around…

    Liked by 2 people

  14. Hi Cass, I’m checking into see if I can help Cheer your day. We are having great weather here in the USA.Wehave had a spring unlike previous ones it usually goes from winter hold to summer time hot.This spring has been a delightful, nice transition making fora beautiful spring. My son and his girlfriend are getting married tomarrow. they found a great place outside to have the ceremony. Have a bearable day Cass.

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  15. Gosh, this was hard to read. What you’re going through sounds so, so tough and certainly puts my own problems in perspective. Like I have a paper cut and you’ve lost both arms.
    What I experienced in hospitals and appointments was traumatic enough. You’re extremely brave in facing this situation – I know, you don’t have much of a choice if you want the possibility of getting better. But it does still take strength – of which your blog reveals you have more than you might think – to do it.
    Just concentrate on the end. You will be out of there sooner (hopefully) or later – and, with any luck, with some kind of aid for your debilitating condition.
    I truly that you’re in a better mental and physical state when this reaches you.
    Much love,
    Becs x

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  16. Hi Cassie,
    Hope you are out of that hell hole by now. Hope writing up about it on the blog has helped. I remember when I was in hospital for 2.5 weeks at the old Royal North Shore hospital and was on a 4 bed ward in rheumatology 2 of the people were in their 90s and one had dementia and she would start walking around during the night and had a fall and the patients kept pressing the buzzer and the nurse wasn’t too happy until she saw what had happened. I found I lost all sense of time when i was in there and it felt like an eternity. Absolutely nightmera. I hope you’ve escaped xx Ro

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