I Believe You.

I went through my last lot of tests today.
The Royal Eye and Ear Hospital for Inner Ear Testing – checking for Balance Disorders.

I know that other sufferers tend to say, “I went in with no expectations”.
Not true.
You went in with a tiny fragment of hope.
It may have been as small as a single piece of glitter, but it was still something.
You don’t have to pretend to be strong to me, or anyone else.
Be weak.
Cry about it.
Scream about the unfairness.
Punch and kick until your heart is content.
Just don’t lie and tell me that you are completely content with coming out with no answers.

If you lose all hope, you lose yourself entirely.

I had hope that today’s tests would close the curtain on my living nightmare.
I, as usual, came out with no answers.
I cannot tell you how disappointed I felt.
My heart sunk, my soul sunk – worse than any of the times before.
The final tests after months of exhaustion.
The Lady was lovely, though. She sat me down and said, “there is something called Functional Disorders. Things we as Doctors cannot see. You may be apart of the rarity of people who suffer from them. Some Doctors don’t believe what cannot be seen. But don’t worry,” she told me. “I believe you“.

In my six months of appointments, she was the first person to say those words.

I didn’t cry until I got home.
It hit me all at once.
I was holding onto the sink, trying to wash the dishes one at a time and incredibly slowly. As I scrubbed each utensil, I felt my head spinning. My weight leant on the sink entirely. My legs felt like jelly and my eyes began to roll. I had to keep telling myself, “not many to go, not many to go”.
My body has deteriorated, and I have no control over it, nor know why it has recently given up on me.

I cannot describe the dizziness in any other way than, my entire world spins when I am standing and my legs literally turn to jelly. I feel like I am falling. I am constantly nauseous too, and my stomach is refusing to digest properly. I am a mess.

Every test result has been negative.
Every Specialist I have seen sees nothing, therefore there isn’t a problem and the Nothing “cannot be managed”.

I can’t even stand on my own anymore.
Just fucking toughen up! I screamed at my inner self. Just show me where the problem is!
Nothing.
The tears welled and the small lump in my throat turned into a melon.

The life I had pictured for myself and the one I am currently living are very different.
Disability Pension fast approaching at twenty-two, no job, no career prospect, no savings, no partner, no travel experience, minimal friends, stuck inside these four walls, missing out on living, stuck in concrete with no answers.

The nightmare that never ends, and I can’t help but ask myself, why me?
If not me, it would have been somebody else.
I wouldn’t want anyone to suffer with this unknown disease inside of their body. I wouldn’t want them to watch all they had worked hard for, crumble beneath their fingertips.

I am exhausted and emotional.
I don’t want to hear that I am strong.
I find it insulting.
I’ve noticed that everyone likes strong people because they don’t ask for anything.
That doesn’t mean that they don’t need anything.

I need to be able to manage this.
I don’t know the point of this post tonight. I apologise for any grammatical errors as I am writing amidst tears. I am terrified of what happens tomorrow onwards. I am terrified.

I don’t know where to go from here.
The light at the end of the tunnel is now dim.

I just want you to know that if you are suffering from something similar, something invisible…

I believe you.

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59 comments

  1. I can’t begin to understand what you’re going through. I believe you. I believe every word you’ve written. I just can’t comprehend what you endure. For me, being strong in the midst of your plight is not about physical strength so much as that you are still here. You write. You share some intimate details about yourself. Not that I care about numbers regarding likes and follows, but your blog is gaining almost daily. This to me means you’re reaching people, other humans. Like me, I’ll bet most of your followers care about you. There is no telling ultimately how many people your words are reaching. I believe there is more strength in your weakness than you can imagine. Keep crying out. Someone with an answer may here you. – hugs

    Liked by 5 people

  2. Cassie, I have been thinking of you and I think of you so much wracking my brain trying to put the pieces together because these are familiar pieces and yet you are hitting wall after wall.
    Yesterday, I was at the Sydney Writers’ Festival and the highlight of the day was a session with Dr Norman Doidge author of “The Brain which Changes Itself” and now “The Brain’s Way of Healing”. Before I had brain surgery and had my shunt put in, I had very weird and whacky neurological symptoms like you read about in the works of Oliver Sacks. I did have some dizziness and kept falling over due to balance problems as the vestibular system in my brain was being squished by the fluid.
    Anyway, in “The Brain which Changes Itself”, the first chapter talks about a woman who ended up with severe dizziness after going on antibiotics I think it was and she used this device called a PONS which they put on her tongue and over time she recovered. It’s such a simple device and doesn’t always work but it’s non-invasive. This device has had a whole range of effects and is now being used to treat MS. I am wanting to talk to my neurologist about possibilities for getting rid of my chemo brain.
    Have your doctors conducted a neuro assessment? This would involve touching your nose. Closing your eyes and being able to stand still and not fall over.These tests are very simple but if you can’t do them, neuro is the way to head. Thinking about how you walk, do you walk with a wide gait? This is indicative of balance problems. Prior to my shunt surgery, I walked with quite a wide gait like a sailor on a ship. Also, as I walked, I clearly remember the horizon bouncing up and down.
    Medical specialities are very narrow in their focus so they could easily miss these types of things and neuro problems are notoriously difficult to pick.
    Of course, none of that might ring true but then again, it might.
    Take care, my friend. I was willing to search to the end of the earth for my diagnosis and I did a lot of searching along the road. Hopefully, people will read your blog and pick up on the clues and something will turn up. My kids have this character who visits their school with yoyos and NED says “Never give up”. My son quotes NED now and then and he has a rough road…he missed touching his nose the other day and reports seeing gold stars so I am fighting his battles and trying to get him to school and away from Minecraft but I’m a persistent sod.
    lots of love and blessings,
    Rowena

    Liked by 3 people

    1. I do walk with a wide gait and I have had those tests but my Doctors really do not believe it is balance related. I’m not sure who to believe anymore to be honest, ir where to go from here, or who to see.
      I am so tired, Rowena. As are my parents. It is exhausting.
      xxxxx

      Liked by 2 people

  3. I think that perhaps one of the reasons that your story and your posts have always resonated with me as deeply as they do is because of the shared experience of not being believed.

    I grew up with some pretty horrific abuse and violence in my life, but the thing that has shaped me the most profoundly was the experience of never being believed. People underestimate how crushing such a simple thing can be to a person, especially when it is repeated time and again. It can rip your soul from you one tiny piece at a time to be rejected with those simple words, “I don’t believe you.” Even when they are not spoken aloud.

    But you know that I believe you, and now you have heard it from one of the experts as well. Lean on that. Someone, many someones, have faith in you, believe you, and will be here to help you, no matter how long or how elusive the answer to your illness. You ARE believed.

    I don’t ever expect you to be strong. You are an inspiration, yes. But you are not being put on a pedestal. You are someone that I draw strength from knowing, but not because you are strong, but simply because who you are speaks to me and draws me to you. And I hope, that in some way, I can also give you strength in return, not because I am strong, but because I care and understand.

    You are allowed to be weak. You are allowed to cry and rage and despair at times. You are allowed to mourn for the life you are being denied. You are allowed to be human, to be Cassandra. What you are experience is horrific. You are not ‘brave’ for experiencing it, and it doesn’t make you a stronger person for having been tormented this way. It just makes you a survivour. But you don’t have to try to survive it alone. There are a lot of us walking this horrific path with you and we can all occasionally lean on each other to get through it. I will even carry you on my back if needed, as long as somedays when I am too tired to go on, you can support me too. Because I believe in you, and I believe you. Always.

    Liked by 3 people

      1. It’s okay to not know what to feel or how to move forward. Sometimes we need to just drop our burdens for a minute and sit down and breathe. We are survivours, but even survivours need a break from the flight or fight on occasion. ❤

        Liked by 2 people

  4. I’m crying for you. I’m so sorry that yet again you are facing a bleak future void of the answers you’re seeking. I believe you. I hope your answer is on the horizon. Keep pressing, don’t give up. We’re fighting with you.

    -Rachel ❤

    Liked by 3 people

  5. There is nothing better to hear than a medical professional telling you they believe what you have told them. Doubt they will ever be able to find a cure, but if they could just give you helpful information on how to deal with one of your “episodes” (lack of better description) maybe they can help! Maybe they are just feeding you a line of BS, who knows. I believe you, for what it is worth!
    Jeanette Hall

    Liked by 2 people

  6. I believe you. Just because the tests dont show something doesn’t mean it’s not happening. There was a time when medical conditions we are all familiar with were not known and people were called crazy, hypochondriac, kids couldn’t concentrate because of their diets but now we know more. Just because it doesn’t fit what they’ve been taught doesn’t mean it’s not real.

    Liked by 3 people

    1. I agree. Some people still do not think that Fibromyalgia is real, it really sucked being at the beginning of the finding of this disease 20 years ago. Three years of tests on my digestive system, all saying that nothing was wrong with me, until I woke up with a hole in my intestines and the contents leaking into my abdomen. I do not trust tests! I trust my gut. You have to have a doctor who believes you and will be invested in fighting for answers. I am not sure where you live; as I haven’t been following you long, but for some reason I got the impression you lived somewhere where there is socialized medicine. I wish we had that option in the States, but I have read other blogs where a girl in the UK was not getting as effective treatment, because it wasn’t approved by the National Healthcare rules… so she went outside of the system and although it was extremely expensive, she got the treatment she needed and got better. I know it’s a little different than your situation, since you don’t have a diagnosis, yet. I agree with a previous commentor, that you should see a neurologist. Maybe you already have. I know you said you had a test that she had mentioned, but you didn’t say if it was given by neurology or a different specialty. Don’t stop getting second and third opinions. I can get that stomach emptying test every year. One year, it’s positive and the next, it’s negative. So you need a doctor who doesn’t focus so much on tests, and someone who will tell you what to do… so the test gave no answers… so what do I do next? How do I cope with these symptoms? Challenge them! What am I suppose to do? I cannot live the next 60 years like this, so tell me what should I do? If I was your kid, what would you do next? Some doctors get pissed when you speak up and advocate for yourself… if yours does, it isn’t the right doctor.

      Lastly, I do not think that your future is bleak. You are a BRIGHT star! For whatever reason, you don’t get to follow the plans you made for your life. Maybe your purpose is much greater. People connect to you. Not feeling alone is a big deal and you giving people that solace that they are not alone is powerful. I do wish you could do it while having relieve from what you are personally going through. I believe you! Now I am not good at taking my own advice, so do not call me out when you read one of my posts (haha)!

      I think of you often. I will be so happy when you get on here and tell us someone has helped you!
      Lauren

      Liked by 1 person

      1. I’ve seen three neuros. Am trying to get in with my fourth, as well as a Gastroenterologist, Physio, Eye&Ear Specialist and an Acupuncturist!
        It’s all well and good to recommend things, but the payment for it is hard. These people charge up to 350$ per visit – which is awful.
        I’m in Australia. Our healthcare system is good, if you have a diagnosis. But for someone like me… they think I am making it all up.

        Challenging my symptoms is slightly hard. I want to do the things that people do. If it was just chronic pain and nausea, the coping would be so much easier. But the dizziness leaves me bedridden. Regardless of having a walking stick/wheelchair it wouldn’t matter. They want me up and moving and I can’t, as hard as I try everything they tell me to.

        These illnesses are very hard to deal with/manage, especially when they go undiagnosed. At least you have ways of managing… Even the slightest.
        I am yet to find any.
        I guess that’s the hardest thing to handle at the moment.

        Thank you for saying that. I hope you are right. I hope there is someone out there who can help me… Even a little bit.
        Thanks for reading, following and believing!
        x

        Liked by 1 person

  7. I believe you, those words hold such power, and needed to be said, the many tests you have gone through and probably more will show something, your symptoms are severe and disable, so there is an answer somewhere.

    Being strong is a daily struggle and we need to step back from that label, because it’s something else to deal with on top of all the stuff, the mask we wear can make us it’s prisoner and we really need to say this is me.

    Hope is what we live on, sometimes it dims, however in the end it’s all we have.

    Take care x

    Liked by 1 person

  8. This wasn’t your last test. It was your most recent test. I know how frustrating it is to go through invasive, uncomfortable (read: not quite killing me) procedures, only to be told “negative” or “normal.” CLEARLY there is SOMETHING. We ALL know it.

    I wonder if there’s any value in crowdsourcing this? If you had a list of tests you’ve done, and a list of things ruled out, and things you’ve tried….would others have suggestions?

    Hugs. You have such incredible wisdom – keep going.

    Liked by 3 people

    1. I really doubt it. I have had every test across a wide range of fields and specialists. My brain, every scan, every internal test, every blood test, inner ear tests, balance, gastrointestinal… There isn’t much left to do.
      I don’t know where to turn to now.

      Oh that is so lovely. I don’t think I hold much wisdom at all. I just want others to know that they are definitely far from alone in their struggles.
      Thank you xxxx

      Liked by 1 person

  9. As I was reading, I flashed back to a time when my daughter was a teen and suffering from dizziness, nausea, and eventually tremors. Blood tests, brain scans, etc. weren’t giving answers. It turned out that she had an intractable migraine. I am not saying that that is what is happening with you, but it is an example of a functional problem that doesn’t show up on tests. It took six months to get it diagnosed as a migraine and another two months to break the migraine. In my daughter’s case, after years of a strange mix of symptoms, she was diagnosed with fibromyalgia/chronic fatigue syndrome, which is called by lots of other names, including systemic exertion intolerance disease (SEID) and myalgic encephalomyelitis (ME). Again, I am not trying to say that this is your answer, but it is an example of functional disorders that don’t show up on typical tests, but that can get diagnosed by a constellation of symptoms over time. I am praying that you find answers and relief.

    Liked by 1 person

  10. I know what it’s like not to be believed. I have M.E/CFS. I’m 22 and have had it since I was 11. The way they diagnose M.E is to assess your symptoms then rule out everything else because there is no specific test for M.E. (Which means lots of disappointing test results) Just that it must be that because it’s nothing else. Almost every possible symptom you can imagine is a possible symptom of M.E but the main ones are fatigue and pain. I’ve been wheelchair bound and bed bound at various times over the years, though I’m a more severe case. Lots of people have the illness but don’t have it as bad. Some doctors believe it’s a real illness and treat it seriously, while others.. Well one GP told my mum when I was younger that it was all in my head and that if she put me in a room and set it on fire I would get up and walk. M.E/CFS might be worth looking into as a possible cause of what you’re going through but I hope it’s not, because they don’t know the cause, so there’s no cure, you just have to wait it out. This is getting really long, sorry about that. I just wanted to say I understand what you’re going through. I know what it’s like to be 22 and cut off from the world. I know what it’s like to be struggling for a diagnosis, to not be believed by doctors. You’re not alone and I believe you.

    Liked by 1 person

    1. Oh my. A Doctor said that? That is highly unprofessional. The Pain and Dizziness is overwhelming, but as it cannot be seen, they too think I’m crazy most of the time. I’m not sure where to go from here. I, too, am missing out on life. I think I’ve come to terms with having to manage this but I don’t know how to. They cannot manage something they cannot see.
      xxx thank you for reading/commenting

      Liked by 1 person

      1. If the doctors aren’t giving you any guidance, you have to find it yourself unfortunately. But fortunately there’s a lot of information on the Internet (if you can bare to look at a screen long enough with your dizziness). I’ll share what I’ve learnt over the years (or at least what’s relevant to all illnesses since you don’t know what you have).
        Painkillers- try every single one you can get your hands on because what works best for you, might not be what works best for other people. Best to try them all yourself. Seems obvious yet can be overlooked.
        Supplements- your body needs more of certain nutrients when you’re ill and there’s a huge range of vitamins, minerals and amino acids that you can buy. I suggest starting with vitamin b12 which in the past was given to everyone that was sick in any way.
        Alternative therapies- I have weekly massages and without them my pain levels rocket. Hypnotherapy for pain management, reflexology and acupuncture can help some people as well.
        Physiotherapy- graded exercise therapy (a type of physio) is helpful for some people so worth looking into but some kind of physio is needed, ideally before you stiffen up because that’s just extra pain
        Find a good GP- a good GP can treat the symptoms even if they can’t treat the cause. Dizziness making you feel sick? Get some anti sickness medication.
        And finally mental health- being sick sucks and there are sure to be mental health repercussions so be on the lookout for any symptoms so you can treat them as promptly as possible.
        What I’ve just written might be useless but I hope I’ve helped a bit.

        Liked by 1 person

      2. Thanks for all of that – although I have tried everything. My body can’t digest vitamins at the moment as I have Gastroparesis, and as for the Acupuncture, Physio, Osteo therapy, I am trying that too with no success.
        Antinausea medications – hard to find the right one. I have tried them all with no success. I’ll continue to hunt for someone who will listen, someone who will hopefully be able to help me or recommend something that works. It’s all trial and error from here on, and will take a lot of time!

        Liked by 1 person

      3. Trialled five, finally had one ‘made’ that was taken off the market a few years back due to severity of side effects. It is called Cisapride. It helps with the pain but not the nausea. My Gastroenterologist doesn’t even think that Gastroparesis is my diagnosis. He isn’t happy with the results. They don’t ‘add up’ as he says, because my body is not responding to medication… to any medication. Hence he believes I have an autoimmune thing that is causing the stomach issues and dizziness… It’s all a bit confusing as they are just as all over the place as a
        I

        Like

      4. We only have one in the states FDA approved, called reglan (cisapride might be it’s generic name because it sounds so familiar to me). GI wouldn’t give it to me longer than two weeks, due to me having depression and that medicine possibly causing suicidal ideations. My GI had me order a pill not approved here from New Zealand…can’t remember the name… started with an M… Did he do an endoscopy and look and see if your food is sitting in piles, rotting in your stomach…

        Like

      5. Motilium? That is the drug used here for it and the results are 95% great! But it didn’t work on me.
        I’ve tried Reglan too. It’s a less strong dose of Motilium. I’ve also tried another two, then Cisapride.
        It is SO hard to mix stomach and anxiety/depression medication as they do the opposite things! One slows down, and one speeds up. I had to choose which was worse – and it’s obviously my stomach.

        Yes! All tests, honestly.
        Gastroscopy x3, endoscopy x2, stomach emptying scan, ct scans, mri scans all over body, blood work, autoimmune tests, even a laparoscopy… Only tiny things are coming up, like the mild Gastroparesis, low immunity in my bloodwork and I also just got mild loss of hearing in my left ear (where I had shingles). But nothing to indicate why I am suffering so much… It is so tough. My stomach doesn’t want anything. My body won’t negotiate. Very hard!

        Like

      6. Yes, that was it, but it didn’t help. Plus, I felt really weird calling some random guy in New Zealand to give him my credit card info. They only use it in trials here.
        Well I hope that you get the help you need, soon.

        Liked by 1 person

      7. I have, but 2 a year of each for 16 years, plus other procedures, test, labs, and surgeries for other diseases. Unfortunately, they do not end after you receive a diagnosis. But hopefully you will have peace of mind. I guess it depends on the diagnosis and treatments/cures available. I find a diagnosis seems really important when you don’t have one, but once you have one, depending on what it is…that label you fought so hard to get, to validate how you felt, means nothing, because you are still sick and they still can’t help you.
        Hopefully that will not be your experience! I have way more faith in your health system, than ours. I wish you the very best! I’m glad you have the support of your parents to help you through this hard time. Like I said, you are doing a lot of good. I hope you get it back 10 fold!

        Liked by 1 person

      8. Wow, your strength through this is astounding. When they told me I had a partial diagnosis with the Gastroparesis, I was happy until I realised it is hard to manage. You are right – we still have to suffer each day. But then they took that from me… Now they don’t know if they believe their own diagnosis! Argh!
        I just want management.

        Thank you for following and being so supportive. I have no idea why people listen to my little rants!
        xxx enjoy your day my dear

        Like

  11. Awww Cass you poor girl I am sorry you have to go through all this. If there is anything you need or anything I can do I am here for you always. You are very very young at twenty two in. a year things can change and you can get better. Building your life from 23 gives you plenty of time. You got many years ahead of you and I hope the all of those years are non suffering years. Try to hang in there and know there are a lot of people that care about you. I care about you. Keep writing and keep us updated on how you are doing.

    Liked by 1 person

      1. Just be good to yourself and reach out to your friends and support if you need on those very bad days. I don’t like to read you were crying. I’ll always be here to talk.

        Liked by 1 person

  12. Awww Cass *

    I’ve been trying to find a doctor that at the very least, cares about finding a solution. I am in-between now. I just left my last (quack) of a doctor. He asked me the same questions week after week and provided only med’s. no personal development therapy or the like.

    The lady in charge of medical records, was more of a help than the doctor, and insanely more caring and understanding also.

    Keep in the fight! (I know, words we don’t like to hear when going through an episode!)

    SOME WORDS I DON’T LIKE TO HEAR, WHEN IT HITS!
    There There Honey,
    You are Smart,
    Just get over it!
    Why are you being like that?
    & my least favorite

    “Just get over it”- Thanks, jackass if it were that simple, don’t you think I would? Haha.

    Be Blessed, Cass.

    Liked by 1 person

      1. Nah, tomorrow will actually be the worst yet. Its a mile stone and i will reflect on my past failures after the military, ive gone backwards. U dont have to post this, im just n a dark place.

        #not looking good.

        But a smile did creep out

        Like

      2. Well I am glad there is a smile.
        Don’t reflect on the past. It weighs you down. Focus on the future. What you do have control of and can change… The people you can help. Being in the military would’ve taught you many things. Use them for good instead of being drowned in the bad.
        I wish I could take my own advice. I know how hard it gets. We just have to push through… Keep pushing through.

        Liked by 1 person

      3. I hope your nights are better than mine Cass, you seem knowledgable and kind.

        I’m usually helpful and write more upbeat, but tonight im going back into hell, that I try to guide others out of. Oh well, I’d rather suffer and take it on then it be done to others.

        Not sure if im making sense anymore, haha. See theres a laugh. But yea its just getting the better of me tonight.

        God uses my suffering as a way to gain knowledge and a way to relate to those I am to help. But, when I ‘cant follow my own advice’ as you’ve mentioned, it seems all for not.

        Grammar and spelling suck right now, just typing. Again, u can leave these comments out if youd like, Aussie girl.

        Like

      4. Knowledgable because I go through it every day! I have the dark thoughts too.

        You know it gets better, so focus on that.
        Focus on the better days.

        No, I don’t delete anything unless you ask me to! Most of the comments usually go through straight away.

        Like

      5. It is ultimately your choice.
        Again, I have bad nights like that too.
        When everything seems unbearable and not worth staying for.
        But think of the little things.
        The sunsets you’d miss, the fresh air, helping people.
        After every hard day, comes and easier one… A better one.

        Liked by 1 person

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