Learning to trust.. myself

I haven't really been updating on my health situation lately, but the truth is that my state hasn't changed much since the last update. I still haven't heard from the neurologist, or any other doctor for that matter, and most of my days in Paris was tainted by the everlasting feeling of having a humming power plant inside my head, among other things. I don't remember if I ever mentioned it, but one of the times I was in hospital early this year, I was appointed a nutritionist. She wanted to know what I was eating, have my blood drawn to check all levels of vitamins and minerals in case of any deficiencies - and after she had concluded I was suffering from malnutrition just by looking at me (!), she told me to start taking these nutrition drinks called "Nutridrink Compact". Oh well, I've tried them before and hated them, but I thought I'd give them another try since I'm supposedly an adult now (and therefore not allowed to use the sentence: "I don't like it" anymore). I quickly understood that the woman was too hung up on BMI to be able to actually classify me as healthy or ..unhealthy, but I went with it. I mean, I don't weigh much and I'm definitely underweight as opposed to a normal person my age. A normal person would probably be suffering from malnutrition with my weight, but I'm a small female - and I don't have much muscle mass to flaunt around due to my handicap. My diet is varied, I do pay attention to what I eat, and I should by no means suffer from malnutrition - but you know, a layman always knows best.

When the results from the blood work came back it turned out I was seriously low on vitamin D, so I was told to start a supplement. I was also told to keep in mind that since I'm in a wheelchair (apparently meaning I'm sick), turning older and certainly in the risk of getting osteoporosis (both postmenopausal and in general), I should take a calcium supplement as well. Sure. I have fallen out of my wheelchair so many times I've lost count. I've smashed my head into both tile, wooden and stone floors, yes.. smashed, I will never forget the sound of my skull hitting the rock hard floor. I've crushed my fingers into concrete walls. I've suffered from so severe pneumonia that my mom had to put pressure on my chest to help me cough, several times. And I have never, ever broken a single bone in my body. Never.

At the time I was feeling helpless. I was feeling insecure, and afraid. I knew something wasn't right, so I was willing to try just about anything to get back to normal as soon as possible. As I said, this was back in the beginning of January, it's now been seven months. I trusted the nutritionist who "prescribed" 1000mg calcium and 25µg vitamin D. I started taking supplements, and drinking one nutrition drink each day. The first problem I encountered was the racing heart I've mentioned before. It persisted for about a month, and I felt like I had been running a marathon for every single day of that month. No one answered my questions, nothing was done. All I was told was that I have bad lungs, and to face the fact and deal with it. I was drinking one Nutridrink each day, until I one day - for some unknown reason - decided to stop. They didn't make me feel any better, and I couldn't get myself to like them either. The very next day my heart slowed down, and within another day it had stopped racing. I suddenly realized that these high protein nutrition drinks with 300 cal (and 12g protein) per unit had been too hard for my body to digest, causing my heart to speed on with around 145 beats per minute.. At first I was so happy to have found the cause of it, then I felt devastated because it had been scaring the crap out of me, and now I'm just mad. Mad that they actually caused me more pain, more suffering, more anxiety, more insecurity. Like I didn't have enough to deal with.

Now, back to the supplements. I've been taking one Calcigran (500mg calcium and 5µ vitamin D) and one vitamin D (10µ) for some time now, after the nutritionist informed me that my vitamin D levels was back to normal. As most of you know, I've been feeling unwell in general. I've been dizzy, nauseous, felt bloated, instead of feeling hunger I've felt sick (both before and after meals), and I've had this odd feeling of something humming inside my head. It's seriously hard to explain, but like the sound you can hear and almost feel when you're standing close to an electrical fence. You know what I mean? I've had problems concentrating, remembering things, headaches, and so on. A little more than two weeks ago I stopped taking the calcium supplements. I started wondering if maybe the extra calcium could be doing this to me? I googled it, and realized that some of the symptoms of too high intake of calcium looked very similar to what I was experiencing, and I made a decision to stop. Worth a try, right? About four days later the humming inside my head disappeared. The same humming I thought I would have to live with, and grow accustomed to, for the rest of my life. Now, a little more than two weeks later, I'm feeling so much better! I'm smiling a lot, feeling happy for absolutely no reason at all. Life is suddenly good again! I have no guarantee it won't return, it might just be a coincidence, but I sure as hell won't start back on the calcium supplements until it does. And once again I'm mad that they caused me more pain, more problems, more obstacles to conquer just to be able to live through the day.

Through all these months, with the suffering, fear and frustration I've been experiencing, I've discovered that I have to be my own doctor. I have to trust my gut feeling, and try to work out my problems on my own. Because no one else will hear me.

Posted by Shamini on August 16, 2011 – 10:00 AM

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  1. Your experience with this makes me sad. Sad that you have had to go through this, and that doctors fail too see the big picture or connect the dots or whatever I should call it. I think it’s wise to follow your gut feeling, and actually have a doctor who takes this into account by asking “what do YOU feel is making you feel bad now?”. With chronic diseases, the patient often knows their body so well and is able to notice changes in health matters, that the doctors would miss. Keep fighting sweetie!!

    • Thank you, dearest Cat! Your words make me feel a bit better, and I know you have enough experience on the matter yourself. I just wish they would take the time to actually listen to me, instead of sticking their noses into an old medical chart and making assumptions based on it. So sick of it all.

  2. Glad du føler deg bedre, det fortjener du! Men håpløst at man må finne ut av ting selv..

  3. Jag förstår mig inte på läkare. De är så fast i sina böcker att de inte kan se utanför dem.
    Fortsätt kämpa Shamini, du är en av de starkaste personerna som jag känner till.. Kram

    • Jeg tror hovedproblemet er at mange leger er fast bestemt på at de vet best, og derfor ikke er åpne for å høre hva pasienten selv måtte mene. Tusen takk, Anna – jeg er glad for å ha venner som deg, dere hjelper meg mer enn dere vet. Smile *klem*

  4. Tragisk at man ikke kan stole på legene, og at det er alt for lite personlig tilpasning i behandling.. Jeg har inntrykk at dette er noe mange sliter med – man må vite selv hva som er galt og hvordan det skal fikses. Men veldig godt å lese at du er bedre Smile

    • Tusen takk, Ida Smile Det tapper en for den ekstra energien man så sårt trenger for å føle seg bedre, kanskje bli bedre, å måtte kjempe for å bli sett, eller hørt når man egentlig bare føler for å legge seg ned og dø.. Jeg er utrolig glad for at jeg har folk rundt meg som oppmuntrer meg til å ikke gi opp!

  5. I’m sorry you keep having these bad experiences with doctors and health personell! You deserve the best treatment there is, honey. I’m so glad you found a solution to your problem and that your tinnitus is gone – I know that’s just awful. Love you! <3

    • Thank you, sweetheart, I’m so grateful to have you as my friend. You truly mean a lot to me. Love you too! <3

      I don't think it's tinnitus though. Tinnitus is in the ear, no? I cannot really explain what I was experiencing, the sound/feeling was inside my head, in my brain.. feeling like a constant squeeze while vibrating in a weird way. I have no idea how to put it into words, I'm just glad it's gone.

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