I was in a dark place, thankfully I'm still here.

Posted by change25 @change25, Jun 27 11:42am

It all became too much, after a long battle trying to get answers and not getting anywhere my mind went to a place it had not been before. I did feel thirsty at the time but I do think there was a conscious effort to harm myself. I consumed 4 and a half litres of water in 40 minutes. This was in the morning and by 5pm on the night I had a seizure and was rushed to hospital in an ambulance. I spent a week in intensive care. I don't recall much of it due to sedation. I suffered from cerebral edema and high white blood count. Thankfully all of which were corrected by the medical staff. It's taken a while to get back to health. I'm sorry for the delayed update to anyone who was concerned. I did receive some mental health support along with medication. The best of which I now have a genetic consultation booked for August. Thank you for your support as always, it's much appreciated.

Interested in more discussions like this? Go to the Just Want to Talk Support Group.

@becsbuddy

@change25 that’s a smart decision you made about being an infrequent presence on MCC, what is important is that you take care of YOU!
It’s really good ‘talking’ with you, just keep getting better!

Becky

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Thanks as always Becky, I'm just fearful with my upcoming consultation given the previous experiences I've had. I just hope that this will be different, fingers crossed.

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@change25

Thanks as always Becky, I'm just fearful with my upcoming consultation given the previous experiences I've had. I just hope that this will be different, fingers crossed.

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@change25 I’m sure that you are worried. That’s why I put this list on here that will give you an idea of questions. Question Prompt List:
https://autoimmune.org/wp-content/uploads/2024/03/Question-Prompt-List-Autoimmune-Association-English. You certainly won’t need all the questions! Maybe you could formulate one from each heading. Also, come up with a very concise timeline of what has happened. And how long you’ve been looking for help! (Don’t talk bad about any doctor or hospital!). And maybe take your dad with you, tell him he should take notes and ask questions he feels are pertinent. In reality, his presence will help both you and the doctor stay on topic. And the doctor will be more likely to take you seriously.
What else can you do so the doctor will listen and take you seriously?

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@becsbuddy

@change25 I’m sure that you are worried. That’s why I put this list on here that will give you an idea of questions. Question Prompt List:
https://autoimmune.org/wp-content/uploads/2024/03/Question-Prompt-List-Autoimmune-Association-English. You certainly won’t need all the questions! Maybe you could formulate one from each heading. Also, come up with a very concise timeline of what has happened. And how long you’ve been looking for help! (Don’t talk bad about any doctor or hospital!). And maybe take your dad with you, tell him he should take notes and ask questions he feels are pertinent. In reality, his presence will help both you and the doctor stay on topic. And the doctor will be more likely to take you seriously.
What else can you do so the doctor will listen and take you seriously?

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Fantastic advice as always Becky. I've documented my symptoms and managed to obtain all my blood test results from the past few years. I have some useful correspondence from previous consultations that I'm going to take also. Lastly, I've compiled photos over the last few years. I think I have enough evidence that shows something isn't right.

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Dear @change25
I also “win” going thru hospitals, albulaces (pg), lots of H20, seizures and others. I’ve “won” that for the last 12 years ago for my bicycle accident and hit the front of my brain. I’ve lost 80% of my brain too work at my city, read right, driving from my MC, playing my guitar, and on…

But I’m ALIVE with my wife, kids, grandkids, friends, brothers&sisters at my church, and others. Jesus Christ has put to Him within me
Thanks,
Greg D.,

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@gregd1956

Dear @change25
I also “win” going thru hospitals, albulaces (pg), lots of H20, seizures and others. I’ve “won” that for the last 12 years ago for my bicycle accident and hit the front of my brain. I’ve lost 80% of my brain too work at my city, read right, driving from my MC, playing my guitar, and on…

But I’m ALIVE with my wife, kids, grandkids, friends, brothers&sisters at my church, and others. Jesus Christ has put to Him within me
Thanks,
Greg D.,

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Sorry to hear that Greg, it must've have been very difficult. It shows your strength of character being able to see the positives despite experiencing a negative situation.

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Just thought I'd give a quick update. Unfortunately my mental state deteriorated again today, I was very proud of myself as I Immediately recognised this and contacted mental health crisis who are coming out to see me tomorrow. My parents are concerned as they can see notable changes in my appearance. I've tried to shift my mind set and instead of asking why me I instead say why not me. Nothing is permanent nor fixed and it is one of those unfortunate things in life that is just happening. While the pain is unbearable at times it is without question the physical changes that are causing my mental anguish. Does anyone know of any good coping strategies that can allow me to accept these changes?

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@change25

Just thought I'd give a quick update. Unfortunately my mental state deteriorated again today, I was very proud of myself as I Immediately recognised this and contacted mental health crisis who are coming out to see me tomorrow. My parents are concerned as they can see notable changes in my appearance. I've tried to shift my mind set and instead of asking why me I instead say why not me. Nothing is permanent nor fixed and it is one of those unfortunate things in life that is just happening. While the pain is unbearable at times it is without question the physical changes that are causing my mental anguish. Does anyone know of any good coping strategies that can allow me to accept these changes?

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@change25 Just as with everything else, no two days are exactly the same. That goes for weather, or our mental status. For me, understanding that this can change a bit when I least expect it, sometimes for reasons unexpected, helps me be gentle on myself. Recognizing that you feel a difference, and want to address it right away, is a great gift to yourself.

Be gentle on yourself. Take time to write it out, or create something to express where you are right now. Know it is temporary, and a sign you are doing better. What will you do today to honor yourself?
Ginger

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@gingerw

@change25 Just as with everything else, no two days are exactly the same. That goes for weather, or our mental status. For me, understanding that this can change a bit when I least expect it, sometimes for reasons unexpected, helps me be gentle on myself. Recognizing that you feel a difference, and want to address it right away, is a great gift to yourself.

Be gentle on yourself. Take time to write it out, or create something to express where you are right now. Know it is temporary, and a sign you are doing better. What will you do today to honor yourself?
Ginger

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I'm doing all I can to fight it. I know how lucky I am in regards to having a wonderful family, a roof over my head and never being short of food. I've tried medication, journals, meditation and speaking to people but nothing seems to work. I don't want to exist anymore and that's the unfortunate truth.

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@change25

I'm doing all I can to fight it. I know how lucky I am in regards to having a wonderful family, a roof over my head and never being short of food. I've tried medication, journals, meditation and speaking to people but nothing seems to work. I don't want to exist anymore and that's the unfortunate truth.

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@change25, remember that you recognised that your mental state is deteriorating. You are proud that you can do that now and you should be. That's a big step. You also mentioned earlier that taking part in online forums and social media wasn't good for you and caused you to focus on things that weren't helpful.

You're recognising the right things and making good progress. Small steps count. We're here to support you, but it sounds like spending time on the computer and in the forum is not helpful. Keep yourself safe today. Tell your parents how you are feeling. I encourage you to get outside and walk. Observe 5 things you see, hear, smell and can touch.

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@colleenyoung

@change25, remember that you recognised that your mental state is deteriorating. You are proud that you can do that now and you should be. That's a big step. You also mentioned earlier that taking part in online forums and social media wasn't good for you and caused you to focus on things that weren't helpful.

You're recognising the right things and making good progress. Small steps count. We're here to support you, but it sounds like spending time on the computer and in the forum is not helpful. Keep yourself safe today. Tell your parents how you are feeling. I encourage you to get outside and walk. Observe 5 things you see, hear, smell and can touch.

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Nothing seems to shift my focus. I am seeing the Dr today where my parents are coming with me as they are very concerned about my health. I've struggled recently as when I've been out for walks, where I've had people make nasty remarks about my appearance. It is getting progressively worse and even when I try to accept it I feel like I'm unable to switch off from it and these encounters make it all the more worse.

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