Tag Archive | triggers

Reasonable Expectations from your Partner

Before I start this topic, a quick update may be in order for anyone that has noticed my absence. Feel free to skip this part if you only want the subject matter I planned to write about. I am fine. Relatively. I graduated my trauma recovery program, err, rather, we mutually decided to end it due to several factors. I was working on exposure therapy and we went through several key events, but I could never work through them all, there is simply too many, thousands, 10 thousands actually for my entire childhood. We decided to end before the holidays to reduce my stress at that time so I could enjoy it more with my family. We decided not to continue in the new year to reduce my medical bills that I already cannot pay and need to dodge bill collectors calling me. My credit rating is tanking.

We decided to end it to give me a break. That is also why I was not blogging. I needed some time to stop thinking about my traumas and let some of the open wounds heal.

I was not completely unsupported in this time. I have still been using 7cups.com and amazingly enough, I have found an online friend that I chat with daily that understands my history and is both strong enough and empathic enough to listen to me. I am truly grateful.

Today I want to talk about some reasonable expectations from your partner if you have been abused. I have found some other sites that seem to expect more than I have from mine. This one was great https://sworddancewarrior.wordpress.com/2011/03/13/primer-for-partners-of-sexual-abuse-survivors/

I read through that one together with hubby, explaining the parts that didn’t quite fit with me and what really did. What I loved about this was the idea of the safety list. I’ve included an excerpt below.

“6) How do we have the best sex possible with my survivor partner?

Make a written ‘safe sex’ list and stick to it. In this context safe means ‘no or low abuse triggers’.  The survivor can make a list of things that are sure fire abuse triggers and things you can do that have no abuse gunk attached to them. These will be unique to each survivor. Group the list by level of safety. Green light items are things that never trigger flashbacks. Red light things will pretty much always trigger flashbacks. Yellow light things might be possible from time to time but the survivor should initiate them.

If there is a sexual act or practice on the red light list that you really really like, give up all hope of ever doing this thing with your survivor partner. She or he might give in and do it, but it will do serious harm to your relationship if she does, and will set you back a lot.”

I extended this idea to all triggers, not just the sexual ones. I created a red light list of things that will always trigger me, make feel unsafe, cause a flashback, cause me to dissociate, or large amount of panic. This list is not really that long and is incredibly specific. I explained each item to hubby even though it was traumatic for me to do so. Most of them he knew already, somewhat, but we had never categorized and gone into this level of detail before. Some things I even modeled or demonstrated for him to be extra clear even though I thought my heart might explode as I pretended to be my abuser.

So why, please tell me why, hubby still does things on the red list? Here is what he says. “Oh, I forgot”
“I thought it was okay like this”
“I wasn’t thinking about that”
“You seemed fine”

I don’t think all rules are meant to be broken. Some are funny when they are.

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Okay. He is human. He is bound to make a mistake or forget. Yes? or NO? I’m not sure. I mean there are other red list behavior items in his life if he thinks about it.  I’m not the only one that has created rules for him. He doesn’t break many rules. He doesn’t walk around naked. He doesn’t swear at his boss. He doesn’t bring home every puppy he sees. He does have a memory and impulse control. So why can’t he remember these few things that are important to me and my recovery? I have explained that once triggered, it can take me hours, sometimes days to get over it. I have explained all of the triggers and my feelings multiple times over the years.

And yet this morning he does it again before he leaves for work. Leaving me here alone to deal with it. Yes I told him. And he said he was sorry, and acted all confused. I don’t understand his confusion. I don’t know what to do.

Am I being unreasonable in my expectation? Is he correct that he shouldn’t have to remember? Or should it be on him now to periodically review the list we wrote out together to make sure he is being supportive and not adding more trauma to me?

I understand it is my responsibility to heal. I have been working very hard in therapy and completing worksheets and excruciating homework. I understand he is not responsible for my reactions or what happened to me. But I feel like if he told me “I don’t like when you do this” even if no trauma were associated with it, I would never do “this” again.

So I’m here again, where I need to try to understand. To forgive him. To rebuild trust. To feel safe in my world.

 

 

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Too many words

When it takes me too long in between posts, it is not for a lack of words, rather I have too many.

My brain is as busy as a big city highway, thoughts rushing about, crashing into each other. Therapy has stirred up nightmares and flashbacks at an alarming rate. That, along with otherwise not sleeping has increased migraine frequency again.

My daughter is okay. I hate that she has scoliosis and that my genes gave it to her. It is worse than I thought it was, her s curve and rotation already raising her one shoulder and hip out of level, twisting her ribs so one side of her back appears rounder than the other. But only if you look closely and know what to look for. Dr recommended she start doing yoga to stretch and strengthen her core to combat the sore muscles she already has. Then we go back in a few months for new xrays, and hope the curve has not progressed much. Thats all we can do.

I managed the day of her checkup though I had several flashbacks. It could have been better, could have been worse. We went in through the garage, not the front door where AF used to drop me off. We stopped at the cafe for slow paced breakfast. Upstairs was heavily remodeled since I had last been there. That was good. I did feel triggered looking down the hallway where I spent countless painful hours of physical therapy with no gain. I did feel triggered in the large waiting room, recalling times waiting there by myself, times when both parents came and were so busy fighting I had wished I was alone. I knew the view out that huge window well, as it took me out of the waiting room to watch people walking down below.

It was actually comforting to meet Dr junior. I had forgotten how much I liked and trusted his dad as a child. Junior has the same amazing warmth and accent. The look on his face was entirely priceless when he asked who performed my surgery as a child, and I said it was dear old dad. I decided not to tell him it didn’t go so well, as I don’t fault the surgeon for that. 

I did feel sick to see my girl’s body distorted by this horrible disease. No one really knows a cause yet. 30 years later and we can’t prevent it from permanently deforming us, slowly twisting and winding us up as we grow.

So that would have been enough for my nerves. But no, that’s never how it works. My FIL was also at that hospital that day, having surgery. So we walked through the maze of buildings to visit with MIL and deliver the cards my kids had made. I was losing touch the longer I walked. I kept seeing my girl, who looks so much like me, and lost my bearings, struggled to stay grounded more and more.

We sat with MIL far too long. I asked hubby a few times if we could leave. We had been there several hours now, approaching lunch time, and girly was stressed and hungry. The surgical waiting room was not a good place for her. 

One woman was describing how her husband was missing his ears and chunks of his cheeks due to skin cancer. I wanted to comfort her but I had nothing in me to offer her. I wanted to run away.

Finally we left and started the long walk back to the garage. But this time the hallways looked different. Swirly. I could barely read the directions on the signs and kept getting lost. I easily lead us all there but was now confused. Hubby reached out and grabbed my shoulders. I screamed “Don’t touch me!” And looked for an escape. A few nurses and doctors asked if I needed help. I wasn’t sure…I kept looking around, waiting for something to make sense, waiting for hubby to take the lead, but he never did. My flashback had overtaken me. I was disoriented and scared. My only thought was avoid evryone and get to the car as quickly as possible. But I didn’t know how. I was trapped in one of my nightmares, hallways kept getting longer, people were no longer speaking english, I was struggling to walk, holding onto walls for balance, struggling to breathe but doing it anyway.

I just kept walking. Hubby and girly followed me. At hallway intersections we looked sad and confused and nurses pointed the way. Finally we could see our garage. I knew I could make it now, the fear lessened and switched to exhaustion. The final steps to the car took all my energy. Made it. Sat down. Breathing can resume.

I don’t recall leaving the garage or entering the highway. At some point I ‘woke up’ and remembered the suggestion to go somewhere fun. We needed lunch so I asked girly if she wanted to go to the mall. Sure!

We ate lunch and headed for her favorite store to search for a black dress for choir. I was still exhausted, struggling to stay grounded, but this seemed important. As we entered the store, hubby disappeared. He often does this, wanders off to look at something. So I waited. He was taking forever, so I checked my phone…dead. crap. Looked around and still did not see him so we kept shopping, but were forced to stay in that one store. She tried on a few things, no luck on a dress. Finally I spotted hubby sitting by the fountain outside the store. What? How long has he been there? I tell him I had no idea where he went. I tell him I don’t know if we should buy anything. He gets all defensive saying he thought we were better off without him and he didn’t know where we went and hows he supposed to know…

I was too tired for that. When I have flashbacks I have trouble making decisions, using math, deciding worth. I wanted his help but obviously was not going to get it. I told girly we would keep those things she liked in mind for another day but we should probably get going. She was fine with that.

When we got home I thought I could rest and recover. Hubby had the same idea. He fell asleep and left me to make dinner, monitor homework, manage bedtime. 

The next day he said he thought everything went perfectly. I snorted a bit, surprised by our different impressions of the day. He asked what I thought could have been better and got angry when I made suggestions, because now I was attacking him and pointing out everything he did wrong. I wasn’t even going to bring it up, he asked. I wasn’t going to bring it up because it doesn’t help. I can’t rely on him, in those moments, I am forever alone.

People keep expecting me to be normal

I am far from normal. I used to pretend really well. I used to smile and force myself through each day desperate to blend in, to hide my troubles, to appear normal. It used to be easier, with numbed out emotions, drinking too much, and dissociating. Now that I am present, the world continues to be terrifying and overwhelming. Triggers wait for me around each bend, around each thought at times. 

This is my new normal. I have complex PTSD. I have for many years, but I am in a different stage now. I know it is confusing. You and I both know intellectually this thing, whatever it is today, that I am unable to do is safe, totally not dangerous at all. And yet I have to do mental and breathing exercises to prepare for it. 

Sometimes I get hit with a triggering event or multiple events so fast I am not even sure why I changed my mind until I reflect and fill out ABC and challenging belief sheets later. All I know in the moment is I want to go home or stay home or get out of the room you are in and hide. The shame and fear chokes me.

All I do know is that if you keep expecting me to have normal reactions and act surprised, angry, hurt, confused each time I am triggered, like you don’t know me at all, then my shame is increased. You want me to be better, but I am not. I am sorry.

Staying present is harder than it looks

Flashbacks have been hurtling me into the past, into this odd blended world where past blends and merges with present in completely confusing ways.

Seeing my sick dog lying there, I suddenly was 8 years old and seeing the dog AF poisoned. The image superimposed, so childhood dog is on top of my real dog like a transparent photoshop layer that at moments is opaque and seems oh so real.

In those moments, I relive the trauma as it happened. Not just like watching a movie, as that would be only sight and sound. This is the entire experience, all of the smells, thoughts, fears, sadness, helplessness. I hear AF laughing, his cruel voice saying the stupid beast got what it deserved. I feel it in my skin and bones. It takes every ounce of energy to remind myself I am an adult, not a child, that I am safe, that this is a different dog, and no one poisoned him, he is sick.

I go through grounding exercises. I look at my hands and breathe and count. I look in the mirror. I tell myself AF is not here, he is gone. I am safe. I can help this dog. I don’t have to watch it die. He can’t make me watch it die. No one will laugh. I can go to the vet. I am in charge. I am okay.

I slip in and out of reality several times as I see my dog struggle. I have not slipped like this since the day I revisited the building of my childhood back surgeon.

Some triggers are just too strong. Some events were just too horrible.

Hubby says maybe I can finally grieve for that dog now, combining with current grief maybe. That I can say goodbye to her also when we have our little funeral. I don’t know if it will help, but I think it is worth a try to get some closure on that.

I don’t have any pictures of that childhood dog, but I started googling and I think she was part border terrier. She was really ugly! All straggly hair, mostly black, some white. But she was awesome, a good friend, and a good frisbee player. She would fetch anything and was always outside with me.

**Next part is graphic, stop reading if you don’t want to know**

It took her three days to die and none of us were allowed to help or comfort her. She climbed onto my brothers bed and stayed there, filling it with blood, as it seemed to leak out of her everywhere. The blood dripped off in a little stream at one point, dripping onto the floor. Her tongue hung out as she gasped for air. Her eyes were gummy and staring at nothing. Once in a while she would convulse, kicking her legs wildly, then nothing but gasping again. We were not allowed to hold her head or give her water. All I could do was stand in the doorway and watch, helpless, as my friend died in the most horrible way and AF laughed.

There were other animals he hurt too, but this was the worst and most difficult to erase from my mind. I don’t know how to put something that devastating into perspective. I can’t help that dog or that little girl and I can’t explain why it happened. So my brain keeps it active, in case one day I may figure it out?

So I am hoping that grief is the answer. There is no why. He was cruel, that is it. There was nothing I could have done. I need to grieve for the loss of the dog and the pain of the little girl. I’ll see if I can, and if it works. Because this is one flashback I would really like to stop seeing, please.

Face it to fix it

Do your demons live in your peripheral vision, off to the side, just out of sight like mine do? I know they are there, I readily admit it, but struggle to face them and really give a good look.

Avoidance has been the biggest symptom of my ptsd for years. Avoid the triggers. Avoid the feelings. Avoid the pain.

New counselors are coaxing me out of hiding, teaching me to stop avoiding. Like holding out bacon to a scared lonely puppy. I come out for a moment to inspect the bacon then retreat back into hiding safely again, not sure I want it, not sure I trust them, not sure it is worth the risk.

My assignment for couples counseling has seemed impossible this week. I don’t know why I agreed to do it, other than I always agree to try. He asked me to write a list of all of my touch-related triggers so we can work on creating safety at home.

This is my fault…I opened my big mouth and complained that hubby often seems to forget about my specific triggers, and sets me into flashbacks or panic, and I am always reminding him don’t do it like that. And then I have to go somewhere horrible, recover, and forgive him. Repeat nearly daily. It never gets better no matter how much I remind him.

And so I have been asked to put it in writing. All of the things that terrify me. The things I don’t want to happen to me, so I won’t be triggered and reminded of AF or my brother abusing me. I am supposed to round them up, list them out, and share in counseling with two men? Yes one is hubby…but sometimes he is just a scary man when I am frightened.

I do NOT want to do this.

My inner lost puppy is whimpering and hiding under the bed and does not want bacon.

I put it off all week. I have to leave for my session soon. I decided to post it here, because my friends are here, and I feel braver here, and because knowing it may help someone else gives me strength.

So here it is. I may be vague on some of these, writing just enough to know I looked quickly. Some of these are quick startles. Some of these are context specific, like time of day, room, position, preceding events and mood. Some are mild while others are instant and extreme. Some cause me to get upset, some I try to hit the ‘attacker’, some I freeze up and can’t move or speak for some time. Some make me feel used and owned, like my body does not belong to me. Some make me feel luke I am a bad person, a whore even.

* Unexpected touches of any kind
* Grabbing or hugging me from behind me, reaching around me
* Swatting, grabbing my butt
* Hovering or leaning over me while I am lower than you
* Waking me up with touch and no sound
* Me sitting on someones lap
* Me laying on top of someone, facing up
* Someone sitting next to me grabbing my knee or leg
* Thumb in my hand without noticing
* Slow motion touches
* Massage that turns into touches
* Asking me if I like being touched
* Watching me change my clothes
* Touching or kissing me or leaning over me while i am sleeping
* Opening my bedroom door at night

Stop already, I’m not shooting you down

I get very little time alone with Hubby for any sort of planning. So one of our constant issues is that he feels I ‘overwhelm’ or ‘bombard’ him with information or questions. I found out Saturday that he also feels that I ‘shoot down’ his thoughts or ideas and this was new to me.

Saturday morning Hubby said he wanted to build a shelf for the boys’ bedroom. I was surprised, but happy, to hear this and started asking him more. At Christmas we had talked about building bunkbeds in there to gain badly needed floorspace, and we have this nice bookshelf waiting to go in, but he got really upset when I asked what kind of shelf and where would it fit and I got really confused how I had upset him so quickly. He says I “always shoot him down” or something like that. He continues to rant about how he can’t build bunkbeds today and he thought it would be nice to make a little shelf and get something done.

Woah. So I never told him not to make that shelf, I only asked him what it would be, where it would go, and did it fit in with our long term plans for the room that we had previously discussed. I didn’t want him to make a shelf that would get in the way of the other one, that room is tiny.

And woah again. I always shoot him down?! Like I’m the reason he doesn’t build or finish things?

(Should I have just said “That’s nice dear, have fun” when he said he wanted to build a shelf? and not say what is on my mind? not ask any questions? pretend we didn’t have any previous plans?)

So I asked him to elaborate on that shooting down part. He said I ALWAYS do it, but the only example he could think of was that he wanted to paint the boys’ room one day last year and I talked him out of it. He couldn’t remember why, but remembers being angry about it enough to bring it up a year later. I apologized for that day a year ago, and that I didn’t try to make him feel that way, but with neither of us remembering it clearly, it didn’t seem relevant here…. I was so confused at that point.

I told him I’m not in charge of him and he can do what he wants to do today, we are only having a discussion. I’m not telling you, or expecting you work on bunkbeds today, only asking if this shelf fits in with the plans to make the bunkbeds or have your plans changed.

He got really upset at that comment. Again I don’t know why. I’m very careful not to use blaming words. I don’t raise my voice or call him names. He said bunkbeds is a huge project and he doesn’t have plans for it yet (I cringed at that, but said nothing, because last august we started talking about him building this as a christmas gift for the boys, he took time off work to do it, and we even simplified it so he wouldn’t finish it but only start some cuts and build it together with the boys, we already purchased the lumber and the the hardware but he never started it…I didn’t think I was out of line here to ask if he was EVER going to make it, if not today, but I didn’t actually ask him to make them today) and that could take all day all he wanted to do was go out and build something simple and relaxing. I said he could still do that…my questions here didn’t change his day. He said yes it did because I don’t want a shelf so he won’t make one because I don’t like his ideas. I’m paraphrasing here and he was talking very quickly I really couldn’t keep up, but I got the idea that he blames me quite often for changing his plans or not liking his ideas. Hmmm. I didn’t like that one bit and told him I did not accept the blame. His guilt or lack of time management or poor planning or whatever this was – was not my fault and I did not like him thinking of me that way.

He asked ‘why do we need to talk about bunkbeds today then?’

‘Well, for one, I thought waiting two months was safely in the no-pressure zone to bring it up. Second, kiddo has asked to have a sleepover birthday party and I wanted to check with you to see if this might be possible.’

I started putting new flooring in my son’s room over the summer and got to the point where I need his dressers removed from his closet and am still waiting on Hubby to do that part.  Also, their room is packed full of toys, so if I got over the fact that the floor was not finished, there would be no room to have extra boys sleep in there, and for my anxiety, they must be contained (yes a bit like a virus). Plus, removing the baseboards and carpet exposed a terrible draft.

Next mistake was mentioning that draft – I asked Hubby if we could add insulation before replacing the baseboards and if it could be done from within the room or if it had to be done from outside. I did not ask him to do it that day, only asked what is required to finish this job we started last year so my boys can have a finished room without holes and drafts. I wasn’t picking on him. I don’t know how to do this stuff. I could spend hours getting conflicting advice online, or I can trust Hubby to know what to do. But I can’t ask him without him getting overwhelmed.

He asked if we could stop this useless talking, waste of time getting us no where and go down for coffee. Oh! I felt like I had been slapped. We made it downstairs, he started making coffee and breakfast. I didn’t know what to do with myself, what to say, how to fix it. I was hurting and never meant to hurt him and so confused about what had just happened. He said something else then like can’t you understand I just want to do something and get it done without all this talk and planning getting no where, feels just like at work? That one felt more like a punch, no, more like I was drowning. It was a doubleslam.  That I was so painful to talk to, and that he gets to do this at work. I miss planning meetings – I was really good at this, project management. I miss feeling important and listened to, having deadlines, accomplishing something. My world here – nothing changes – everything is a mess – everything is late – everything has something wrong with it – and no progress is ever made. Here I am in hell. And when I try to make a difference I get the wind knocked out of my sails.

(Are these conversations supposed to happen naturally? Am I supposed to schedule an appointment with an agenda so he feels prepared? I didn’t plan to talk about those things, one thing lead to the next, and they were all things that needed addressed. I’m so tired of sticking a pin in it, waiting patiently for a ‘good time’ to talk about the house problems. I feel like the kids and I deserve a house without holes in it. And this man has never decided to do it on his own, he will always have a new project to start.)

I tried to go over to the computer and turn on my game, but really couldn’t breathe. So I went upstairs, locked the door, collapsed in bed and started crying. In a bit I heard someone at the door, then Hubby saying – ‘The door is locked’. I asked ‘What do you need?’ I could barely speak in between tears. He sounded so angry to be locked out, he said ‘I came up to talk to you but I guess you don’t want to now.’

I had a good cry, returned to calm, put some makeup on my red face and went down for breakfast. I was pleasant, and only spoke to Hubby when spoken to, and chose my words carefully to keep the calm. That’s when he asked me to go to the post office. See previous post about social anxiety.

Later that day, after the playground incident in my previous post, I was completely exhausted. Hubby decided he wanted to make a fancy dinner. I asked if he needed any help (meaning with dinner). He said something about loading turbotax on the laptop…I was confused, and asked if he was planning to start the taxes tonight? He got angry again, and said he didn’t know why he bothers to ask, every idea of his I ‘shoot down’. That phrase again. He was really stuck on that one. All I wanted to do was go to bed. Not work on something that he wouldn’t be touching until next week. I’d do it for him happily, I only wanted to know the timeline. My question was a question – not a shooting down. I own no guns. I only ask for information before making decisions.

I went to bed and missed dinner. He didn’t finish dinner until after 9pm that night. I was too tired to get back up. He took that as a sign that I was mad at him, but I was too tired to be mad.

 

I’m ashamed of my house. I’ve told Hubby this and it hurts him deeply. I won’t hide this fact any more. I’m ok that we don’t have a mansion. But each room has something falling apart, a project started years ago and never finished, missing trim, missing drywall, exposed pipes, ripped wallpaper, half painted walls, mismatch ugly furniture. We have no good reason for living like this. We just do.

Update today: So kiddo really wants his friends to come over for his birthday. I’ve told him yes, but not a sleepover. We will all do our best to make this place presentable, moving clutter to the garage and basement, rearranging rooms, get a tablecloth, carefully place throw rugs and blankets and pictures. I can get through my anxiety for a few hours if this is what kiddo really wants. I’m happy he is making new friends and wants to share his house with them. Sorta.

 

Hemiplegic Migraine Triggers – Figuring me out

Starting to figure out some of the sources of my migraine misery with direct cause and effect.

Tannins!

Wow this took a while to figure out. I’ve been on a strict trigger free diet eating only whole foods, nothing processed, no alcohol, nothing aged or fermented like cheese or yogurt, nothing smoked or processed like deli meat, no bread at all for no yeast or malt or sourdough or other processed items.

I’ve had some better days and some not, and I wasn’t sure why not.

First, I’m fairly certain the anticonvulsants are doing nothing to prevent the migraine attacks, I think all the improvements are due to my diet changes, hmmm.

I’ve noticed some specific symptoms for years like I can’t drink red beer like Killians without an instant killer headache. I never called that a migraine, because just head pain and no weird neurological stuff. I stopped drinking that beer and no problem. I have a similar but much milder headache from green tea. These headaches are instant and felt after just a few sips right in my forehead.

The biggie seems to be bread and I thought it was yeast, but now I’m thinking its the malted barley. I’m getting a predictable reaction to this now as well, and its not a headache. Its a hemiplegic migraine. I’ve had no bread, no pizza, no crackers, nothing. Now that I stopped eating all of that, I can clearly see my reaction to it, and it isn’t pretty.

I tried again yesterday. I made waffles for the kids, and added chocolate chips and blueberries. (guess what chocolate and berries also have tannins, I know this now..) Oh they looked and smelled so good and I haven’t had anything like that in sooo long so I joined them for breakfast. I knew it might make me sick or blur my vision or something but I had nothing planned, didn’t need to drive, and wanted to experiment on myself. Sigh. Not fun being a human guinea pig like this but I need some answers before I see my neurologist again in a few weeks.

Link to Foods that Contain Tannins

These phenols are also in aromatics like perfumes, which just ties it all up in a nice big bow for me. Aha! it all makes sense. So if I eat it, wear it, or even smell it, these phenols are hurting me. The weird thing is – they are antioxidants and should be good for me. But we all know how much good it does to say SHOULD. I can’t explain it yet, I can only say this is my story, and the pieces are starting to fit together at least. I hate random. This isn’t great, but at least it doesn’t feel random and I feel like I can control it somewhat, or at least try to manage it.

Anyways, it hit me hard. it was not instant. It was a few hours later. See below to see the sequence of fun events I have from eating this waffle. Its unbelievable. I’m starting to put this together. The biggest culprit seems to be the malted barley. I’ve been thinking of the ‘allergies’ and ‘sensitivities’ I’ve had my entire life and wondering how much is related to tannins and polyphenols, it is making sense chemically now. Problem is, America puts this stuff in everything processed, and its also in many healthy foods too like nuts, beans and berries.

I just need to stop eating. Problem solved. I had the right idea with my anorexia in high school, maybe I was actually trying to feel better and not self harm….wouldn’t that be something.

First I feel my face go numb and droopy on the right side, like my cheek is too heavy. It is hard to talk because it is hard to move my mouth, but also because it is hard to think and find words. It is hard to understand words. I hear my kids talking but it sounds funny. I laugh. I know I’m confused but it isn’t scary, it amuses me in this state. So strange to explain this because it makes no sense as I type it, but I’m describing what happens when half my brain shuts down, so I guess it doesn’t have to make sense. Next is the arm and leg and right side weakness and pain. This type of nerve pain is searing and deep. My muscles twitch and spasm. I’m unable to grasp a pen in my hand and bear weight on my leg. I stumble and lose my balance. Everything spins. I get nausea, diarrhea or vomiting. I either can’t urinate or urinate too frequently with a weird cloudiness. My vision is distorted in some way, always different what it looks like, sometimes like Picasso, sometimes double vision, sometimes like alice in wonderland. I don’t panic any more, I just enjoy the show. No not really, but I know I can’t fight it and sometimes I do have a sense of awe at what I am seeing. I take magnesium and motrin and rest with ice on my head, neck, back, arm to help with pain. And then all I can do is wait for it to go away. If I’m lucky and it hits quickly I will fall asleep, nearly black out when it first hits. The head pain comes later, like a brick, and can last for days, along with the pain in my limbs. I have to massage and keep moving to get the bad stuff out, its worse if I lay in bed or try to hold my twitches still. So I drag my limping, wobbly butt over to my cane and the wall and pace about the house for as long as I can tolerate. I try to do it for 10 minutes at a time all day long.

Air Pressure

My other huge trigger is changes in barometric pressure. This will give me the instant -I must pass out and sleep- type of trigger its so intense sometimes. I have an app on my phone that tracks air pressure on a graph and alerts me to changes and I’m analyzing the history against my symptoms in my journal. I noticed the other day I was triggered at the drs office at the hospital. I thought it was a stress trigger until I checked my pressure app and saw how high the pressure was during my dr visit, and then it went back down so quickly. I thought that was odd and started investigating what happened. Turns out buildings have positive air pressure inside! A LOT of air pressure for large commercial buildings like hospitals that are sealed tight. I never knew. I started checking my app for other buildings, sure enough the pressure is raised a bit – instantly – every time you enter a sealed building. But this hospital was a difference of like hurricane level, no wonder it got to me. The app I use is called “Pressure Tracker” if you want to find it for android and see for yourself. I had to calibrate and tweak it, but I needed something to apply my geekiness to since I’m not working. The air pressure trigger also brings on a similar hemiplegic migraine as described above, but tends to be more intense and cycle more quickly, more painful, but passes in hours instead of days.

That’s my life now. Try not to get triggered, and spend all my time recovering from being triggered. Nothing is really controlled yet but I am starting to learn and uncover what is happening. I’ve made the diet and lifestyle changes. I’ve accepted my new life. I’m going to ask the Dr about my future and possibly going on disability payments at my next visit. I don’t have much hope at this point of recovering.

I have no idea why I am more sensitive now than I was previously in my life, why the migraines I’ve always had and managed turned into debilitating hemiplegic crises. The Drs don’t know either. All they do is offer me other pills to try. If I didn’t try this elimination diet I don’t think I would have been able to walk at all at this point, just getting sicker each day. But its like some switch flicked on and I can no longer tolerate a few triggers at all, sends my brain off instantly.