I just wanted...

Discussion in 'Life Changing or Long Term Physical Illness' started by Brittless, Oct 3, 2016.

  1. Brittless

    Brittless Well-Known Member

    To be the first one to do something so I thought why not post here. Hello. I have a physical illness.. it's an autoimmune disease. It sort of defines my life. You wouldn't recognize me before I had this illness, I mean mentally, you wouldn't know who I was or that me, who is typing this now was her... who I used to be. Who I used to be was invulnerable or so I thought. No one could hurt me, nothing could touch me. I was idealistic... hopeful.

    But it is one big fat cosmic joke that the enemy that is literally killing me, is intangible, not fightable. I use my mind to fight my battles most days. Mind over matter. I'm alright. I'm okay. It's not that bad today. You're still in there. Don't think about the pain. About the way it's warped who you are. Remember who you were. Try to be good... most of all I tell myself to remember to feel emotions. Emotions instead of anger and stress. Don't snap at people. Don't hate them for being healthy.

    Hate eats you up. Don't let the illness take away your soul.. if you believe in that sort of thing. That's what I tell myself.

    I wonder if anyone else who has a chronic illness doesn't feel like themselves anymore? Do you feel the illness has eaten up who you were and built you up a different way, as a different person? Do you feel weird hanging out with normal people? They don't understand why you may be quiet, why you may be grimacing.

    In relationships... perhaps it is not the same physically.

    Do you miss yourself so goddamn much? Do you seek out who you once were, trying to obtain and maintain bits of yourself? Do you sense things the same way you used to? The touch of a soft pillow. The cold air at night.. or has pain warped it all? I wonder...

    I wonder if it's possible to retain an inkling of who you once were. I seek hope in these questions... but the truth is I am fast running out of hope. Everyday I ponder suicide and the date gets closer and closer. I struggle with it, pushing and pulling it away. But it is always on my mind. The thing with a physical illness is your mental health doesn't get to escape it. It consumes all of you...

    bobbob and Inanimate like this.
  2. Inanimate

    Inanimate Well-Known Member

    I have one or more chronic physical illnesses--type 1 diabetes, and I believe scoliosis counts. My scoliosis was treated at 13, but it was a very subpar treatment and had left quite some imperfections. It still impacts my self-esteem to this day, and while working out has improved my appearance, it's simply not enough to appease me. I was diagnosed with type 1 diabetes at 18. To be clear, I wasn't the least bit happy prior to my diagnosis, but it did expedite my severe depression.

    I don't miss my former self at all, but I wasn't exactly the self-injurious, suicidal type prior to having diabetes. However, I love myself now more than ever, which sounds insane considering how much I hate myself.
    Brittless likes this.
  3. Brittless

    Brittless Well-Known Member

    I think I understand... Maybe your illness has caused you to look after yourself better. To care for yourself. But I feel like the illness whatever it may be for anyone always causes dual thoughts that contradict or clash with each other. It in some ways destroys you but for me it has made me more... Open in a strange way. I'm still not sure if that's good or bad. It is hard to accept that good things could come out of all of this pain though.
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  4. Inanimate

    Inanimate Well-Known Member

    My illnesses are essentially a curse yet involuntary blessing, but they've helped me learn to voluntarily care for myself as well. Still, I think I would've inevitably learned to care for myself the way that I do without it having been mandatory. I empathize completely with what you're saying. I suppose chronic illnesses can be seen as good with proper perspective, so long as you manage yourself.
  5. draws

    draws Well-Known Member

    I am so impressed with people who keep on keeping on when they have these illnesses. I think that's what people do. They keep going.

    I had a migraine 2 weeks ago. I've had migraines before, but nothing like this. It was like going into shock (that happened to me once), plus having an anxiety attack, and the flu, and of course, an axe hammered into my skull. I couldn't take it. None of my self-help tools worked. Almost got taken to the ER. (Hung on to see the acupuncturist, that did help.)

    But here's the thing: I know some people get these. Regularly. OMG. how the FCK do they go on? I couldn't stand it for one day. If it happens again? I don't know. Maybe since I know it does end, I could hang on, but I'm not sure. Because I way too readily think death is an option, that's where I go first, because it would be SO much easier!! I'll find some way to convince the kids it's better if I go. There'd be some way.

    But maybe I'd be like you. I'd keep going. I mean, I did for that day, maybe I could for another day if it happened.

    I feel like I'm tempting fate by talking about it now -- I hate that feeling. Like the universe is going to show me I can do it by making me do it. I hate that!!! I'm hoping typing this out means the universe won't pull that shit on me. :)

    PS. I believe my migraine was caused by a reaction to the Tetanus shot I had a couple weeks earlier. I researched migraines extensively, and came across that kinda by accident. It makes more sense than getting that sick out of the blue. I was sick for over a week afterwards. I'm sticking with this story, because it means I won't get another one of these megamigraines ever again.
  6. Brittless

    Brittless Well-Known Member

    Well, the universe did pull that shit on me, so what you're seeing now is a woman trying to live with that. It isn't easy and I wouldn't wish it on anyone, so be grateful for the fact that it seems to be a one time thing.

    Please try to be sensitive with saying this mega pain makes death seem more viable. I struggle with this thought everyday and am trying to pull through it. Remember that I have pain everyday.
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  7. draws

    draws Well-Known Member

    @Brittless sorry I was insensitive. I'm new to the forum and kinda bumbling around blurting out my own stories here and there. My heart does go out to you in a deeper way, now that I know intimately what the pain and discomfort is like. I'll keep my responses positive and supportive. Thanks.
    Brittless and Frances M like this.
  8. calotus

    calotus New Member

    This resonates with me a lot! I have several chronic illness issues. More recently I've had more than have gone without diagnosis. (sometimes I think this makes is worse. Like I feel awful but my doctor doesn't know why. nor has she really tried to diagnose either, so meh :/) but in reality, a diagnosis may help me feel less crazy, it won't make things go away. I completely feel like I'm not myself. Instead, I'm just a hollow shell of a human. I try to remember how I used to be but I feel like even memories are far gone. I have no connection to who I am now, or even who I used to be. It's just nothingness...Everything feels different and slightly unreal. It is the strangest feeling.

    I wish I could offer answers. But I am also asking the same questions. I do hope it is possible while I can still hang on. The only thing I know is you are not alone.
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  9. Brittless

    Brittless Well-Known Member

    It is awful that you feel this way, I wouldn't wish this on anyone but I sort of find comfort that someone else knows what I'm going through. I've felt so alone in it. Thank you for replying. You have made my night. Just sorry that's because you feel what I feel.
  10. GildedFlowers

    GildedFlowers Blooming Blossoms

    Hmmm I believe that I just may know what you both are experiencing. Mind you, I know that both of you, Brittless and Calotus, have several medical conditions. However, I have found that this disorder manifests itself through many disorders themselves. Thus, creating a secondary medical condition that occurs from a primary medical condition. I have suffered from this disorder myself. It isn't well known, especially among medical doctors. It affects almost everyone at least at one point in their lives, but usually fades, although it can reoccur, and for some lingers. So far it's presumed to afflict a very snall percentage of the population. Although, it has been suggested that the percentages may be even higher.

    I am no medical doctor, nor do I claim to be, nor that I have the authority to diagnose or suggest treatments. Only to be a resource, since medical literature and neuropsychopharmacology is my hobby...for some reason. Well, actually I know why. Perhaps I should make a thread to help others become more aware? Hmmm let me know if you both are interested. I can reassemble information and empirical data as well as subjective first hand accounts. That I have accumulated over the past four years. Maybe, just maybe, I might be able to help. But only if you would like me to.


    Mr. Flowers
  11. Brittless

    Brittless Well-Known Member

    I am diagnosed.
  12. GildedFlowers

    GildedFlowers Blooming Blossoms

    Yes, I am aware, I know that you have an anxiety disorder, you need not specify if you do not desire. But you also experience emotional numbness, emotional detachment, and the feeling of apathy. Including experiences where your thoughts and feelings seem unreal or do not to belong to yourself, correct?
  13. Brittless

    Brittless Well-Known Member

    This post was about an autoimmune disease but yes I do experience anxiety and emotional numbness
  14. GildedFlowers

    GildedFlowers Blooming Blossoms

    Do you ever feel like your perception is hazy, unclear, unreal like everything appears two dimensional at times? Does your perception of the outside world seem foggy, dreamlike/surreal, or visually distorted? Are you ever feeling disconnected or estranged from your body, thoughts, or emotions? Feeling as if you are an outside observer of your own thoughts or body, and often feel a loss of control over your thoughts or actions?

    For me I suffered these and commonly believed myself just to have some severe form of brain fog. Some also call it writer's block. When searching for this disorder this is what I kept coming across. Mostly information about brain fog and something on clouding of consciousness. Oooh boy, I found after months this disorder and it was both meaningful and a relief as I finally found what was wrong with me. I felt as though I constantly had Vaseline rubbed into my eyes. I couldn't cry, I couldn't feel anything to the touch. It was like my nerves had shut down. Cigarettes no longer gave me relief or calmness nor pleasure. I read a post a long time ago on another site. This person said that their body was so numb and they couldn't feel pain. She actually stopped self harming on her arms and legs. The only relief she said she would get was from standing outside during winter in just shorts and a shirt. Because the cold intensified the numbness like you would get from holding ice. But it didn't sting. She couldn't cry even though she wanted to. She said she would wait until her fingertips would start to turn purple at the first sign of frostnip. The freezing cold, ice, and snow she said. Helped bring alive enough nerves and helped her know that she could still feel anything at all and was indeed still living.

    I read that post and was desperate to see if it was true. After hours and months of attempting to find others like me. Outside, by the bus stop at my college, I took my coat off and laid in the snow. For a little while I cried, barely. I'm not sure if I was more saddened that she had been right or the fact that the forum was archived from over ten years ago. Some also describe being detached from themselves like their eyeballs sucked back inside their head. So it appears that they are automatically functioning. Like they are on autopilot and someone else or something else is performing their actions, speaking, and daily functions for them. While they take a back seat, can't think, and watch from the inside out. Like being in a movie theater and watching a movie. Only that the movie was your life and everything you were viewing and seeing was your own, but you were not in control. I also felt, in my own interpretation, that my sensations were as if I was under the influence of alcohol or potent opiates, constantly.


    Mr. Flowers
  15. Brittless

    Brittless Well-Known Member

    That's interesting Gilded, but I'm afraid for me it isn't the same. It is true that my perception of the world is different than before but I know for a fact that it is a direct cause of my chronic illness. I do feel this intense brain fog sometimes and emotional numbness, but for the brain fog I know it is the pain causing my mind to exert only energy on that, and for the emotional numbness I know it is me trying to distance myself from pain both mentally and physically. I would say my thoughts feel different... but not that I don't have control over them, just that my personality has completely changed. I feel more that life is surreal but not my body, pain lets my body know it is very real, but life just seems to pass me by. There is incredible pain in my body, and some numbness in other parts due to my chronic illness. But I definitely have feeling in my body, I wish I didn't.

    I know that brain fog and severe trauma like severe illnesses cause some of my mental problems and especially cause depression. You call what you experience a disorder but I'm not exactly sure what kind of disorder you are referring to. I'm sure it is all related to depression among other mental diseases and I hope that you have been able to navigate it and overcome it.

  16. Brittless

    Brittless Well-Known Member

    Today is one of those days I am battling the pain. I constantly am telling myself don't let the pain control you. I wish I had someway to direct this anger into something- not physically... it hurts too much and just frustrates me more to do extreme physical sports, but in other ways. I wish someone could teach me to meditate, truly meditate. Mind over matter. I wish there was something. I'm writing here because I think maybe others with chronic illness/pain will understand my extreme frustration. Like there is no way out. I'm just trapped. Trapped in this torture chamber aka my body.
  17. Inanimate

    Inanimate Well-Known Member

    Hmm. I'm just realizing this, but forgive me if it seemed like I was making my posts more about myself than you. If that's not the case, then forgive me for currently wasting space. Either way, I just wanted to demonstrate to you that, while I don't have an autoimmune disease, I can relate to the unfairness and bitterness of having a chronic illness. I understand your extreme frustration.
  18. Brittless

    Brittless Well-Known Member

    I don't mind. Experiences and shared experiences are always welcome. I like to get different perspectives about how people handle their chronic illnesses because I hope to find something that will work for me and I hope to find someone that will understand. Truly understand. I've been watching this kind of lame show called iZombie and they basically compare fibromyalgia to being a zombie in one of the episodes. I don't have fibromyalgia but I do have a lot of pain. Anyway, it really ticked me off because in essence they were saying they don't want to be bitter and shitty like this person who had fibromyalgia was, the zombie was saying this. I thought comparing the two was really... irresponsible considering oh, I don't know zombies get superhuman powers whereas humans with autoimmune diseases just get weaker.

    I don't know why I just went on a rant about that, but here would be the place to do it. What I was trying to say is it kind of exemplifies what society thinks about people with physical illnesses. That they just need to get over it and get on. But that's sort of impossible for someone who is plagued with pain everyday. My family doesn't understand why I might be quiet or different or snappy or why I might need space. I was just hoping to connect with people that might understand why I may seem all weird sometimes. I was hoping to be less alone in this.

    Which all circulates back to the point that share all you want, you aren't stealing me time. I'll probably find a way to make it about me anyway. :p Joking, but you see what I mean.
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