Monday, 9 July 2018

My story 1

July 9th, 2018

When I was born the doctor told my parents in his best broken English that he didn't think that I would make it through the night.  As a child I never understood the significance of that. I'd never seen someone be pregnant and see all their hopes and dreams of having a baby.  I didn't know personally what it meant to feel a soul nibbling around yours. The feeling of having a fully formed human stretch inside you.  The unknowable-ness of having a child, and yet, not yet having a child.  It must have been very upsetting news. Other than the fact that she must have been exhausted from labour, I don't know how she rested. If she even did.  The next morning I was still there. "Tubes all gone! Baby OK!" was the only explanation I have heard told. I had made my first ado on this earth.

I don't have many memories of or stories about my being sick, other than the usual childhood ailments, until I was six years old.

I was so uncomfortable. I couldn't find any position in which I could be still. I know I walked into the family room and tried to get comfortable in an arm chair.  I tried a couple positions, but nothing worked. I just didn't feel comfortable! I walked into the room and told my Mom that I just couldn't get comfortable.  I know she looked at me hard, and then said something to the effect of, "that's it, we're going to the doctor." She has told me my lips were blue.

I remember waiting what seemed like forever in a doctor's office, and then I remember waiting in another office for another eon.  I briefly remember a doctor saying that he wanted us to go to the hospital.  The next thing I remember, I had been in the hospital for days.

I had a mucous plug that was causing one of my lungs to partially collapse, and I believe there was a problem with the other lung as well.  I am going to need to speculate a fair bit, as I'm going on my patchy memories, and my memories of my mother's memories.  Hopefully it is readable. 

My theory is that due to the fact that my asthma doesn't act quite typically, they weren't sure what was wrong with me. I don't really wheeze, for one thing. All I know is that I was in the hospital for weeks and had to have a lot of tests. One test involved my having to have a plastic bag taped around my hand. I particularly remember that as I was eating my lunch at the time. 

I had to have a surgical procedure where they suctioned out my lungs, which required a general anesthetic.  I could tell something extra was up, because my Mom brought me a present from my Aunt Julie and was acting really weird. Then she told me.  I'm sure she tried to act all casual, but as a kid I could tell that something was up.  That she was hiding her emotions.  Then my Dad came to stay with my for the morning before my surgery.  This was back in the olden days when parents didn't stay with their kids in the hospital. My Mom visited during the day, and my Dad would come in the evening. I knew he was supposed to be at work, so I knew something major was happening. I couldn't understand why my Mom was there at the time, but I know now that she must have been very anxious, and that wouldn't have helped me at all. 

I was fasting, of course, and complained to my Dad about it.  He was very understanding.  I think I expected him to have more of an attitude of, "well, you can't eat." The same attitude he might have had if we were driving down the road and I stated I was hungry.  He seemed to feel guilty about it.  He decided to try to distract me by taking me to the games room.  We played "Sorry" until they came to get me.  The next memory is of groggily calling for my Mom and asking for a drink.  A nurse answered me and helped me drink.  She said that I could open my eyes, but I couldn't. My eyelids seemed too heavy.  I thought she wasn't my Mom and thought it was weird that she didn't correct me, but was too sleepy to care.  She had the most kind and gentle voice.  She was using a tone like she was dealing with the sweetest little thing, that she needed to be careful not to cry or laugh. Little 6 year old girl coming out of anesthetic.  Bless that nurse's heart.

Then I was in my room, and my Mom was there with this anxious/joyful look on her face.  I know I was confused because I thought I'd already been talking to her, and that she had helped me drink.  Then I got to eat jello.

Monday, 5 March 2018

Here I am again.

Too anxious lately to even publish these posts, but at least I'm writing them.

The new struggle for me is that sometimes I wake up and if there is something I've deemed something to be anxious about, I start getting anxious. And don't stop.  But I'm working on it.

This morning I started stressing and actually managed to stop and I think even fall back asleep for a while. Then I started all over again. WHY!!!

I was thinking a lot about Munchausen syndrome.  I was thinking about how I must get something pretty significant out of being anxious, or I would have let it go long ago.  I guess I still need to be sick. I wonder if one can get better from it. ....That's silly. I already have gotten much better. I hardly ever fake anything, and I enjoy getting attention from being sick way less.

I guess I mean can someone like me. Someone who has been that sick. Can I ever be truly rid of it? I mean it's not as though everyday I will long for it, like an alcoholic.

Wednesday, 24 January 2018

It's not your fault

Today I am excited to be alive.  Excited to write. Monday I admitted to myself that I have Munchhausen syndrome, now called factitious disease.  Tuesday I struggled to want to be alive. I was fantasizing about ways to kill myself without anyone knowing it was a suicide. Or how old would my kids need to be before I could without totally screwing them up.  Answer of course, never. I felt like I couldn't bear the pain of knowing that I had this horrible thing true about me. That I couldn't bear how ever many years I needed to live, if I had to feel this terrible anxiety.  Then I got up and decided that I would need to bear it at least one more day.  That's what I do.  Break it up into manageable chunks.  Sometimes it's minutes. Sometimes it's breaths. I knew I could totally do one more day.

Later that evening, after a quarter dose of a sedative and a lot of being out of my negative thought cycle, I had a thought. Why am I spending so much time trying to figure out how to die? Aren't there so many more things I could work really hard on? That doesn't really say it.  It was a realisation that I was giving so much more energy to wanting to die, then trying to live!  There were so many ways to try to work on living than the not-an-option dying.  

I knew that I couldn't do it. That it was just a fantasy like thinking about finding my ex husband and strangling him until he fell unconscious. Not anything I would take steps towards doing it.  I was choosing again to stay mentally sick, instead of choosing to be well. Then I could see the other paths. I think that is the tricky part. Seeing any other option.

 I get so terrified that I can't see any other choice other than staying exactly where I am, trying to fight off the fear. Talk myself out of it. Getting up is actually what I should do most of the time, but sometimes I am so fatigued that I really need to rest.  I'm probably partly anxious because I am so fatigued. But I haven't yet gotten skilled enough at getting out of my negative thought loops while resting. I'm working on it.

I started out yesterday being in a fog about this new diagnosis. Self realization. How could I ever tell anyone about the Factitious disease. How could anyone understand the exaggerating? People would shy away from me or worse.  I couldn't handle thinking about it.  I kept saying to myself that I didn't need to tell anyone.  As long as I'm as I'm not actively faking disease, no one needs to know. That didn't feel right to me though.  As hard as I am on myself, as much as I find it disgusting behaviour, as practically impossible it was to admit out loud, I knew it wasn't a dirty little secret. I chose a close friend I trust to talk to about it. He knew about a few occasions that I had faked things. One of first things he said was that it wasn't my fault. I had already started coming to that conclusion, but that was really good to hear.  He couldn't understand why I would choose to be sick to get attention, but he knew that it wasn't something that I had really chosen.

I guess that's where I got to with it's not my fault. I must have felt that the only way I could get the attention I really needed, was to be sick. There's no way I can blame a 6 year old girl for getting sick. I can't blame my parents for not being able to give me the attention I needed. They did the best job they could with the skills they had been given (or lack of skills). I guess it was just a perfect storm. I was very sick, a lot of the time, my parents were raised by parents that were missing some basic emotional skills, my older sister resented my being born, and I some how didn't gain the skills I needed to deal with the things life had thrown at me from any other source.  I was sick, I was alone, I was scared, and no one knew to tell me that I was loved and that I would be OK.  Except in a way, the nurses and doctors.  

Imagine you are one of four children, a bit socially awkward, and then all of a sudden, you are a STAR!!  People bring you presents. People come to see just you. You get to share a room with other little girls like it's a camping trip. You get a toy room with a TV.  You get to order your food off a menu, and then it is brought right to your bed. Especially for the severe asthmatic I was, I felt great in the hospital!  I felt better than ever. The medications gave me lots of energy, I was able to breathe better, and all my pain was gone.  Heaven.

I'm wondering right now how much the knowing exactly what was expected of me was a factor.  You have nurses that completely structure your day.  You know when to eat, when to shower. When to be resting, when to be out of bed. You know what you're supposed to do, and if you do something wrong, you'll be corrected quickly. Not a lot is expected of you, so it's easy to be really good at it.  Don't complain. Be cheerful. Be accommodating.  The only problem I was, was that I was too happy and well, hyper. I got asked to go to another room for a while a couple of times because I was being entertaining and the other girls needed to rest.

I know that is a big factor in why I was so religious for so long. Knowing exactly what you are supposed to do. And when. And when you were doing something wrong.  

I do believe that there is something in me that isn't just made out of cells. A soul, or a spirit. How much was I born with wanting to be reassured. Was I already insecure? Was I aware from the womb that my mother was worried about me living? Was I already receiving messages that I wasn't OK, and being not OK is something unbearable? Was this from a previous life?

I know that I have the ability to give myself the love I need. I can choose whether or now I panic. I can change the way I think, and feel, and act.  And this time, I'm not giving up from fear.

March 22nd, 2017

Decided that I really need to start journaling my psychiatrist visits.  I definitely type faster, so even though I will lose some of the expression from my handwriting, I'm doing it here.

We talked today about what seems to me to be the last layer of personalities that hold me back.  This really needy little girl. I mean she's starving for affection, that was really standing out last week.  Unfortunately she's learned that love looks like someone that gives her pills, or attention for being sick.

After spending the last week thinking about this aspect of myself and wondering what she needed, or how I could separate her from my true self, I hadn't come up with much.  It seems obvious now, but the problem with her, the little girl, is that she is linked with the malnourishing mother. My Mom really gave me all she had, I believe that.  Only, she wasn't shown hardly any love, and a hell of a lot of disapproval.  She had to comfort herself, and learn how to grow up and survive without anyone to show her how.  So she taught me that I should take pills to deal with my fears, and sedate myself if I got too upset.  Indirectly, she taught me that I shouldn't reach very high, or try too hard, because she was constantly needing to protect me from dying!!!

I actually had a conversation with her today about "the Power of Now".  I love that we can have these completely different conversations about trying to use healthy thoughts to defeat anxiety now.  That we don't just talk over each other, each of us wanting to be heard how hard our lives and health were.

So back to 6 year-old me.  The one who's always in my dreams with me when I'm stress dreaming.  That I have to take on a ferry, or pack up and leave a hotel to drive back home.  The one that I'm struggling to take care of.

This week has been really, really challenging.  I don't think that it is an accident that this week is so difficult after last week's discovery of the little girl. My son, through a variety of events, some of which weren't his fault, ending up being AWOL overnight.  The police were involved, very little sleep was had, and anxiety was being put off.

In the morning, my daughter got up feeling really unwell, at the same time that I was shaking and feeling nauseous.  The combination of my being unable to care for her, my son missing, very little sleep and what turned out to be rather vicious diarrhea, just about did me in.  I was sitting ( I won't mention where), and telling myself that this could be a turning point if I let it. I could let myself panic and beg someone to take care of my sick child, and medicate the hell out of myself, and possibly lead to a downward spiral.  Or I could choose to calm down and try to do the best I could.  My daughter is able to take care of herself well enough. I didn't need to take care of her right then.  I was getting rather sick to my stomach, but just to get through it instead of imagining all the horrible things that could happen.  Son was most likely asleep with his buddy and would call me soon.

I had been trying to decide whether or not to take some ativan.  I couldn't decide if that was just giving my inner child more of the nourishment that just makes her sicker or not.  As I was trying to take out just a half a pill, a full pill fell out and landed exactly on my foot.  I took that as a sign from the universe and took the pill.  When talking about it today, doctor told me that maybe it doesn't have to be only bad for me or good for me.  Once again I'm forgetting that there are nuances to everything.  Just as I phoned my friend and asked him to be a cheer leader for me, to which he responded (which we have previously set up), "what do you want me to say?"

I told him that I didn't think I could handle what was happening, and could he tell me that I could and that I was strong, etc.  Which he did, and wisely suggested that I try to get out of my head by literally getting out.  Doctor asked me why I wanted friend to say those things to me.  Why wasn't it enough for me to say it?  I just don't believe myself yet. There has been so many years of my filling myself with glue like poison that I don't trust what I say and need others to confirm that what I'm thinking is true.

Don't trust myself.  Don't trust my thoughts. Or instincts.

I have been meaning to start writing again since Christmas. I just started having a panic attack and decided to come on here, and as I was looking up my blog, which my laptop didn't even have saved, I found this article on this woman who suffered from Munchhusen syndrome.  The article was called, "addicted to illness". As I read this article, which was basically a lot like me, my anxiety started getting worse. I forced myself to keep reading.  I wonder if my shrink has diagnosed me with it. I know he knows that I have either exaggerated symptoms, or flat out faked them, but does he call it that.

Have I ever flat out faked symptoms? Hmmm. Not sure.  Not that that makes a difference really. I had this feeling like I was all shaky at times when I was pregnant, so I exaggerated them to the point of being hospitalized twice.

I had a sore stomach, because I often made myself feel ill from avoiding pooping. I was getting attention from my Mom for the pain in my lower stomach, so I avoided pooping even more.  She had my Dad, who was around because he was dropping one of us off, take me to the hospital, where I was given the odds that there was a 60% chance that I had appendicitis, and if I did, an 11% chance it would burst. I chose the surgery. I knew I didn't have appendicits.

Right now I think one of the main reasons I'm feeling so much anxiety is because I took marijuana to try to help with the MS symptoms I'm having. Real MS, real symptom. Shaking. Similar to the way I felt when I was pregnant. Instead of taking the normal CBD, I took the other one. The one that isn't recommended for anxiety.

Gah. I will write about going to others for compassion later. I need to get up for a while to get rid of some of this anxious energy.  And to probably poop more from anxiety.

Ah the ironies of life. I get anxious and have to poop becasue I never learned how to deal with feeling anxious from needing to poop.

Monday, 3 November 2014

Coffee dates and Nora Roberts

November 3rd, 2014

So I have been dating this guy.  Just coffee dates.  I haven't really had time to go out lately on proper dates. We have had quite a few phone conversations though.  I mean, two + hours of side splitting, snort inducing conversations.  Just complete smart asses from the get go.  I met him on the dating site that I went on thinking that it was just to boost my ego and help my get over my boyfriend, but really I was hoping to stop feeling empty.  (obviously that is going to have to come from within.)

I told this guy about the asthma and MS (didn't mention any of my other diseases, but vaguely mentioned other problems), and he had a pretty normal response. Curious and wanting to know what it looks like, and I admit, I down played it.

After the second coffee date he said something like "let's do something this week".  I felt a big hesitation with myself. Later that night I really started thinking about it.  What am I doing to this guy?  He doesn't have a clue what he is getting into!  I mean, he has this totally normal life, where he has dinner with his sister and her family on Sunday nights, and carves pumpkins with his kids, and has successful business.  He has a supportive ex wife that allows him to have time to date.  Do I deserve happiness?  Yes.  Does he deserve the party that comes with me?  I don't think so.

So this afternoon at coffee, (which I think he scheduled right after work so I could see him dressed up!  How cute is that!?) I laid it on the line.  This is the shit that comes with me.  Yep.  That should do it for him.  I think I'll go off and read a Nora Roberts book where someone doesn't think that they ever will be able to make a relationship work, but meet someone, and no matter how much they fight it, they fall in love and live happily ever after.


Sunday, 5 October 2014

online dating with MS?

Oct. 10th, 2014

It seems to be different breaking up post divorce.  I don't know really.  How can you compare?  I feel so differently about relationships.  I never think that somebody might be "the one".  I never imagine what it would be like to get married.  I don't try out his surname to see how it sounds with mine.  Well, I still do that, but come on!! I'm still a teenage girl in some inner parts of me!  For example:  I have been watching break up movies.  Actually, one break up movie. And it ended up having a composer as the main character.  My boyfriend was a composer.  Yeah. 

I was listening to sad songs as well and crying in my pillow.  I also was crying as I was making dinner, and my teenage son came in unexpectedly, and hugged me. Then asked me if he could go up to the school because the second hottest girl in his grade was up there and apparently she liked him.  See?  It's different!

One of the biggest parts about dating now is, I'm sick.  Before I thought it was cute and made me interesting. I was that out of touch. I went on an internet dating site tonight.  And sat in my friend's kitchen and giggled at the results. Then her husband asks me if I mentioned my "disease" on my profile.  He meant the MS.  Then I stopped giggling.  You see if you have severe asthma people just hear asthma and imagine some nerdy character in a movie popping an inhaler in an anxious moment. You hear MS, and well, no one really knows what that is, but they know it's bad.  He was just curious, but he really had a point.

How could I make a profile without that glaring fact?  How could anyone want to date me with it?  At the MS group I went to last weekend, this one guy said something to the effect that I have MS, but it isn't who I am.  But here's the thing.  I know what a pain in the ass I was to live with when I was sick when I was married.  I know how tough it can be on a marriage. I also know that I don't want anyone to have to take care of me again. I don't want to rely on anyone like that again either.  Yes, I know better.  Yes, I would act differently now.  Yes, I think it is going to be really tricky to meet someone who can love me for me and have the perfect amount of compassion and not have the desire to rescue me.

Ok, I can hear some of my friends telling me that it isn't anyone's business on a dating site whether I have a disease or not.  Really, unless we'd been on a few dates and it was looking like there was going to be more, I wouldn't tell them.  But sigh.  I tend to be pretty fatalistic about it.  Perhaps that is one more way I want to stay "sick".  If I consider myself too broken to have a relationship, then I can't consider myself well.  

I'll have to think on that more.