A question….
A question...
Do you hide your truth? Most people with chronic issues hide what is happening. Do you? Why?
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When to be real
When to be real
[This post will not be edited and corrected for spelling/gramar by my daughter….It will be real]
Something interesting (hmmm…..interesting is a funny word to use here) happened to me yesterday. I started a post about when your having a bad day. It’s funny because I didn’t realize it was a bad day. People with chronic issues (especially brain fog) don’t always know when it’s going to be bad. Sometimes we are even in the middle of a bad day and are oblivious to it. It’s what happens with brain fog. Your clueless. You go on about your day knowing your not yourself (or even who yourself really is) but even that doesn’t always register that it’s going to be a bad day. You don’t remember what day, date, time and sometimes season it is. It was however: a bad day.
I went about my day as usual. Woke up, surveyed the land and was able to make it to the couch. (yay me!) I wanted to build LEGO but my brain just couldn’t compute doing it. I literally could not put the process together in my brain how to set myself up to build. I kind of knew then my brain fog was a bit more than usual. Instead, I set my things up on my table that pulls itself up to my typing level and followed a routine. Routines are extremly important. I turned on twitch. (Twitch.TV has been a God send. I have met wonderful people and I don’t have to interact or I can) My streamer I follow frequently was on that morning. I like to interact in his stream. He tells everyone new LEGO news and sorts buckets of bricks and minifigures. It is one of the streams I tend to interact the most in. But – I didn’t….I just turned it on and sat there. I sat there with it playing…knowing I wanted to say hello to my friends but I just sat there. It just played, more like a radio show where you just listen but I wasn’t even listening to comprehend. I didn’t hello say my usual hello to everyone in chat. I just sat there…listening, but not.
On days I have heavy brain fog it’s like there is an intake system and then a yield sign, sometimes even a stop sign. Sounds and sights go in but it takes minutes, hours or sometimes days for my brain to understand what is being said or happening. So I sat and listened. My brain didn’t even compute really that I wasn’t doing anything. When I say you don’t compute things till the next day sometimes, this was one of those days. I realize today that I missed yesterday even though I lived it. I can not even describe the rest of the day only to admit I had an anxiety attack….not a small one either.
I’ve had multiple things that I’ve needed to make decisions about over the last few days. They aren’t even big decisions. The stress of not being able to think through them but knowing that something was there needing to be done added to me having a bit of anxiety. It’s like walking into a room and not remembering why you went in there but know it was something important. The only problem for brain fog is it’s like walking into ten rooms and not knowing what to do and then standing in the hallway trying to decide which door to try again and not even knowing what is in that room. You just know all ten doors need to be opened. Once I start to have anxiety over things I don’t even understand other things wrap themselves up in it. I couldn’t walk straight. My head pressure from my CSF leak was increasing to an intolerable level. I started to realize I am going to be like this forever and I will ultimately be a burden on my family. Suddenly those ten doors feel like one hundred.
I was in pain, I was grossly confused and I knew I was going to be completely dependent on someone else to make decisions for me. I’m actually aware during this time that I can’t even care for myself. The only thing I know is that I must get myself to a place where I feel safe (it’s kinda my MO – quietly move to myself to a place of safety knowing that eventually my family will come help me when they see I’m not where I was previously. Don’t draw attention to myself.) I calmly walked to my room, got in my bed with my warm blanket and called a family member for help. They were not aware that things were spiraling as bad as they were for me. Remember, I was sitting on the couch. I was smiling. I don’t like to show I’m having troubles as people with chronic issues do to hide the bad (they don’t know what is happening inside our brains.) My son’s girlfriend came brought me medicine and sat with me. I lay quietly in the dark with her at my side.
I knew I needed to make myself calm so I closed my eyes and thought of positive thoughts. When my son had anxiety as a child we would do a breathing technique and made up one vision to focus on. The vision was him swinging on a swing with me pushing him. In his vision he would lean back in his swing watching the sky. Back and forth, higher and higher. He would imagine himself laughing out loud and smiling with shear joy. This is the vision that I use now for my focus. It brings me joy to envision this happening. I closed my eyes, focused my thoughts on that vision and allowed my medicine to help.
I slept for several hours and when I woke my husband came in to try to understand what further help he could give me. I’m not always able to explain what happened or is happening at the moment if I am still having brain fog. He understands this and just offers support. He knows he can’t fix anything or even ultimately make things better but he knows that just being present helps.
For those that have a family member with chronic issues, supportive care is an absolute must. Know that you can not always fix something but that your presence in some way can make this impossible life a livable one.
Today I’m having a better day. I’m on the couch again and I’m typing. I won’t remember everything I typed later and I will be in a bit of panic hoping it wasn’t awful. I’m glad I chose to type this up though. It doesn’t explain it all or even in as much detail as it could have been but people just need to know sometimes we need to be real.
Do I ever get “Me” back?
Do I ever get "Me" back?
I ask myself frequently if I will ever be “me” again. What I don’t ask myself is who this “me” is. Can I accomplish finding that person again? Do I WANT to find that person again?
When I think about “me,” I think about the person I was before I got sick. If I really stop to think about it, am I wanting that person back or am I hiding from who I am now? I think that is one of the problems that people with chronic issues have. Once you have a traumatic event in life that changes the way you perceive yourself,it feels different than just changing yourself through growth. I think having an event that changes us feels like we were changed without permission.
When I say I want the old me back, I am saying I want to do all of the things I did before this event changed my life. I want to walk, talk, think and feel like I did before. I don’t want to take ten minutes to understand what you said so I can respond. I don’t want to have pain. I could make a very long list of my wants. The point is, my life changed dramatically. I have a very wise person in my life who told me once: Change the word “can’t” to “I choose not to.” You CAN do anything – you just choose not to. NO, I want to stomp my foot and say “I CAN’T walk!” “I can’t choose to do something that I can’t do!” What I am not saying to myself is “walking is now difficult, I need to try it differently.” I realize there are exceptions to this rule. I don’t have exceptions that I can’t work around though.
Looking back at the old me, I see a beautiful woman who had the whole world in her hands. She could exercise, work, shop and go out with friends. If I stop and look at how the old me would be now without that event, I see an unaffected beautiful woman with the whole world in her hands. I don’t stop and think about the fact that she would have aged, gone through changes in her life and had other events that would have affected her. I don’t see that she would have grown through a journey in her life too. I forget that. She wouldn’t be the same either.
I think when we look back at our old “me” we look back at someone we admired. I liked who I was. I miss who I was. Wait! I didn’t have a door slam shut on me after this traumatic event. I had a door close and opened another door I didn’t expect. I need to learn who this me became when I went through that door. Just like I would have needed to learn who I was if I went through the door I expected.
Life changes with or without traumatic events. No one remains the same “me” forever. There are ways I can still be my old me. I shop online, visit friends through FaceTime and even walk around my cul-de-sac on my good days. I am “me,” just a new me and I’m ok with that.
Guest Article
My Brain and my Body are Deteriorating
Guest article: Submitted to Love What Matters by Jessica Marie Michelle
“I’m scheduled for brain surgery in the next week or so and can’t wrap my head around it all. So many emotions flowing through me, so many unknowns. Who would have thought that having a life-saving surgery in the same month to raise awareness would ever occur? Maybe this is a sign of some good luck or maybe this is just a huge wake-up call, letting me know that my journey is just beginning. I have never been a religious person, but today I have never been closer to God than I am right at this moment. At this point, I have accepted to surrender myself and leave everything up to those who are in power.
Knowing this month is meant to raise awareness for Pseudotumor Cerebri, also known as Idiopathic Intracranial Hypertension, has brought so much fear and unknown into my life. It’s so hard to raise awareness for something you know has no cure. My brain/body are deteriorating from this awful disease. It’s hard to put this invisible illness into words. Listing symptoms doesn’t quite emulate what it is like to actually live with the burden of a body that doesn’t function.
All my life I knew something was wrong, but no one would listen until the last year of 2020. This is my raw experience living with this awful disease, on top of many other health complications associated with it. I can confidently say that these are raw details of what most of us who experience an invisible illness ‘feel’ like. No one talks about how we are literally living the human life version of Finding Dory. How we can’t remember what we did less than 20 minutes ago and how our head feels like it’s going to explode.
Nothing we do or take gets rid of the pain; it may help manage it but never take it away. Medications can totally fail completely and we are left with the uncertainty of brain surgery. We literally feel trapped inside our own bodies. Like the old you and the way things used to be are literally trapped inside. It’s the anxiety and depression of not being able to live the life you used to. We have to adapt and cope with this reality. We are all trying so hard to just be the person we used to be before this ugly disease took over our bodies but we physically and mentally can’t. We are truly suffering in silence.
Nobody talks about the severity of this. How life-changing this is, and how scared we all are. Constantly feeling and asking ourselves, ‘Is this really it, is my life over?’ As soon as we feel that God awful pain, we fear and know it’s never going to end or get any better. It is so hard to carry on normally at work and complete your daily tasks properly and efficiently. Being a mother and having that innocent child looking up at me, expecting me to be my 100% best is the most difficult part of this whole process.
I feel like I am constantly failing him, but in his eyes, all he sees is his mom doing the very best she can. No one talks about how our loved ones are also being affected. We are in so much pain that it consumes our energy, we have no energy for anything or anyone else. It must be so hard for them to cope while we are living in pain 24/7. Family members may experience strong emotions, such as guilt, anger, sadness, fear, anxiety, depression and so much more. These are normal reactions.
They want us to feel better, they want to help but don’t know how because they don’t understand why this is happening to us. Some of them even run away because it is too hard for them to cope, which is in no way right or fair to those with a chronic/invisible illness, but we are stuck with that extra pain of being left alone. It is helpful to talk about these emotions so everyone feels like they are being heard and validated. Just because we are living in constant pain, doesn’t mean their pain and feelings aren’t validated. They are just as lost, hurt, and confused as we are.
No one talks about the pain within our optic nerves being crushed because of the swelling in our brain, how we can go blind at any minute. The fluctuation in our eyesight is a whole new level of uncertainty. How our ears and nose leak because our pressure is so high and the fluid has nowhere else to go. How people like myself who have severe transverse sinus stenosis can’t drain the fluid because of how narrow our veins are, which leaves us completely vulnerable. No one talks about feeling fine one day, and the next we can barely get through the day. How things will literally never be the same.
People are not aware that IIH affects our moods, vision, train of thought, our work ethic, and so much more. Doctors don’t tell us how we can feel the change in pressure in the atmosphere every single time a bad storm or rain is coming, and how it literally makes us feel ill to the point where we can barely do anything. The ringing in our ears is so loud we can’t sleep sometimes. We have a hard time hearing. The weight gain and how weight can actually be a symptom of this disease is heartbreaking. The constant feeling of being exhausted, the pain in our eyes, ears, neck, back, shoulder, and head. The fact that no over-the-counter medications and slim to no prescribed medication gets rid of the pain. We never know from one day to the next, what our days will be like but we fight like hell to survive.
People don’t talk about how little doctors are educated on this disease, how so many ghost us and could care less. Our body is shutting down and they don’t care. The pressure causes damages that cannot be repaired. It wreaks havoc on our hormones. How certain birth control and different medications can trigger our IIH. We have no metabolism, our immune system is completely compromised. We can gain weight no matter how healthy we eat or how much we exercise (which is impossible when we are dizzy and can’t put our heads down for fear of pain). Sunlight hurts our eyes, driving while the gates to heaven blind our eyesight. An increase in blood pressure hurts us. Humidity hurts us. Doctors don’t help until you are strong and informative enough to find someone who will listen to your cries. They blame the weight and refuse to look at the clear cycle. ‘It’s in your head. Try harder. Take a pill. How about brain surgery? You are a woman, women get a little sensitive and crazy sometimes. It’s probably menopause, maybe you have a factitious disorder, let’s refer you to a medical psychologist.’ They just won’t listen to us until it’s too late.
Nobody talks about how if not properly treated we could have a stroke due to the swelling in our brains. How we feel so different after the swelling comes down from an LP but it accumulates hours after because of how severe our diagnosis is. No one talks about how we don’t even feel like ourselves and how clear it is that there is definite damage done. How the pressure and fluid in our brains can cause pressure on our hearts. If the pressure isn’t kept under control we can stroke out and our hearts could eventually give out. The fluid builds up each day and it can shut down the brain; it forces our hearts to work even harder than someone who doesn’t have this disease.
It is similar to what happens when you dive in the ocean, the pressure builds and unless you have the right equipment, your brain can explode and your heart will eventually fail. The risk of stroke and aneurysms are very real. Every part of our head hurts but where can it go? It starts to radiate down our neck and to our spine. We can feel it in all our joints and the tips of our fingers and toes. Our eyes can not focus from the pain and pressure behind them. Our ears ring so loud it is hard to hear. We feel electric shocks vibrating down our faces and neck.
It’s a pain no one can see. If there is one thing I have learned, it’s not just about the pain, it’s the never-ending pain. It’s the missing things we can no longer do, missing the person we used to be. It’s the way people look at us as if we’re fine or we’re faking it. It’s the medical professionals not believing us, the insurance companies denying our surgeries and medications, the out-of-pocket expenses that leave us in debt for the rest of our lives. It’s the doctors not wanting to treat us because we are so complicated for them to handle, or not knowing how to treat us. It’s the loss…the loss of friends, loss of income, mobility, and self-worth. It’s the guilt, the guilt of not being able to do things, the guilt of being a burden, letting people down, being the cause of added expenses, the guilt of being sick. It’s insomnia, and at the same time, constant fatigue and exhaustion. It’s the sadness, the loneliness, being scared, not knowing what’s next, not knowing if and when it will get worse, or if it will ever get better. It’s so much more than the pain. This is the awareness that no one talks about.
I have also made my peace with it all and have given myself the acceptance that there is hope. Hope that we can go into remission, hope that we can have a successful surgery or type of medication that will put us into remission, hope that someday, someone will find a cure.
My family is the reminder of why I keep pushing and why I keep fighting. If you’re having days in which you feel hopeless, I see you. If you’re beyond exhausted and can’t see the light at the end of the tunnel, I see you. No matter the obstacles you’re enduring, I see you. I’m never giving up and I hope all of you IIH Warriors join me and do the same. We are our own advocates and just know I am here for you. We are rare, we are 1 in 200,000. I’ll never forget how far I’ve come, all the times I pushed myself when I thought I couldn’t. All the times I wanted to give up but I got through another day.
I’ll never forget how much strength I’ve developed along the way. I will continue to live with this disease for the rest of my life but it won’t consume me, it doesn’t own me, I own it. I’m fearless, I am a warrior. I hope for a cure.
If you know anyone with any type of chronic/invisible illness or sickness, love and support them in any way you know how to. Simply be kind and understanding. Just because someone doesn’t ‘look’ sick, doesn’t mean they aren’t. Be kind. So many people are so judgmental and don’t realize what people like us go through every single day. There is also that miracle outlook on our lives that I am still holding onto, to find peace, comfort, to find a miracle.
My husband and son are my rock, my lifesaver. My friends and community are simply amazing. It truly takes a village and I’m blessed to have the best supportive and loving village. If you are of the praying type, please send over some good vibes for me and my family. I would greatly appreciate it.”
‘My brain and body are deteriorating.’: Woman shares candid reality of battling rare Idiopathic Intracranial Hypertension