I set out on goal late yesterday evening to search for other wordpress accounts that had MG (Myasthenia Gravis) tagged in it. I wanted to reach out to those who were MG warriors, battling life with MG. WE don’t just life with MG we battle life because each day is hard for us but we make it look easy by being who we are! We are the ones who prevail each day and make you forget that we have a disorder. We make you love us and see us as normal even when we know that we are weak. There are days that our inward feelings make actually become our outward appearance and we make actually look like a drunk person or a stroke victim and therefore and I’m glad that we have the love and support of those around around us! Your stories and blogs have given me even more inspiration and hope and I feel so grateful to have stumbled upon them. God has truly blessed me and I am so happy right now!
I would like to feature a fellow blogger here because this what I have been saying for years and she said it perfectly!
So before MG my migraines never ebbed they would stay at the same strength, ONE STRENGTH 100%! It did not matter how long they lasted 1 day or 60 days (which I have had a 60 day migraine). Now luckily with MG (ironically enough) a disorder causes my migraines to take on a different characteristic, I’m happy but REALLY, lmbo. This one was the longest one I have had in months possibly close 9-10 months as this was the last time I can remember having my migraine preventor meds increased.
I appreciate the likes, comments, and concerns regarding my post about migraine woes this past week. It has been a struggle to carry on with normal activity despite the migraine. I have light, sound, and movement sensitivity as well as physical pain on the right side of my head. I also get motion sensitive and yet I have to pretend that none of it is happening at work. Most people had no idea except my boss who knows when I am quiet something isn’t right, LOL. I am excited to be nearly done with this thing and glad that people cannot tell either way. It means I was still able to put a smile on people’s faces no matter what and that actually made my day Friday!
I have been living in a world of strange falsehoods and awkward moments in the last few days. I have not quite been able to decipher what has been reality and dream. I am sure some of this has to do with the strong painkillers at night, my MG, stress, and sleeping with the television on at times. I am having dreams within dreams like the movie inception. I am not sure when I am awake or asleep and I have no idea at times when I have actually said/ done things at work or home or not without asking. I keep huge to-do lists and check lists because they actually soothe my anxiety to see things get checked off them; however, when you are unsure if you actually did them or not it really throws you for a loop. I hope this migraine goes away soon…It all started with this thing! I haven’t had one like this for a long time. I do not like taking so much medication but I have to in this instance. I already take a daily preventor (topiramate) and when I have a migraine I am supposed to take relpax but I tried tylenol instead and that didn’t work delaying the inevitable. Then I tried norco again delaying the inevitable and now I am breaking down to take the relpax. As you can see this is probably good reason for the crazy dreams. I did make sure though that I spread the medications out over a period of 6-8 hours each time over the last 48 hours. I just want this thing gone.
I love the natural sounds of nature. So much so that while listening to the person I love (my husband) I heard the amazing artistic portrait being painted outside my window and began drowning him out until all I could hear was the thunder in my ears and see the lightning between the blinds behind his head. I was listening to the wind howl and picturing the leaves swirling and trees bending and swaying; dancing to the beat of the drums of the sky’s thunder. I was listening to the pitter patter of the rain on the roof and the draining of the water sliding down the glass and tip-toeing down crevices unseen but gurgling nearby. I was excited. These were the sounds that calm me. The sounds that make me happy. I knew I would get some amazing sleep. I even said as much to my husband as he saw the far away look in my eyes and was probably wondering if I was listening to him talk during dinner.
I finished my food. I rushed to do my nightly rituals and then got into the bed. AND BAM! Sleep would not come. I was wide awake. Listening to nothing at all. I had no thoughts. I made sure I wasn’t trying to hard. I made sure my mind was at ease. I was over-tired. This is when I sadly remember I have a MG and that a symptom can be insomnia. This is when my old insomnia of before the this MG disorder resurfaces, this is when the medication that says may cause insomnia says HELLO. Insomnia is everywhere for me! I almost want to cry because I have to be up at 4 am and I have been waking up at 1 hour intervals and have a lot to do the next day. I worry how long the insomnia is coming to stay this time; days, weeks, months, years? With MG I cannot afford to not have proper rest because all of my symptoms will flare and send me into crisis mode.
Thursday night gets a sleepy pain killer since I have a closing shift at work Friday and Friday night I will use my zen music app with all my lovely nature sounds to lull myself to sleep! I will get my thunderstorm dreams where I paint murals of ideas to take action in life.
What’s Your ZEN?
If we always put an age limit on everything that was for kids we would truly have a stressful life. I believe that we should try to view life through the eyes of a child sometimes and enjoy life a children do to relieve the stress that some of us deal with in our daily lives. I model my fitness classes after fun kids activities that you probably would not dare do on your own because you fear that other adults would judge you for doing it. WE do crab walk and human wheelbarrow races, as well as over under drills with a medicine ball and someone races to the front of the line and so on. Instead of the team who comes in last gets feeling bad they actually get incentives like the other team has to plank and wait for that team to finish but they aren’t told until the end, LOL.
Also, I watch cartoons! I watch all sorts, not always with my nieces and nephews in attendance either. I sit for hours and tune in to cartoon network during regular time (not adult swim or toonami, though I like this too) and and just watch cartoons. I watch Disney channel as well. It keeps you young and innocent at heart. It’s good to laugh and enjoy kid things.
People say you should hurry up and grow up. I am grown, married, with a full-time job and though I enjoy this life, I enjoy the simple things and that includes remembering the simple fun times of being a child. I have 23 nieces and nephews and they keep me young. They remind me that Trix are just for kids! They are for those who remember there is a little kid inside of you screaming to get out. Go to the amusement park, go to the zoo, go find your sense of excitement and wonder. Enjoy the world as you once did as a child! I promise the stress will just melt away!
So yesterday I had the strange symptom of the rainbows again. I thought I had traced it to not eating properly during my workday. Maybe it also has to do with proper hydration too because yesterday I am positive I had eaten enough. I did however miss my water routine yesterday for the first time in weeks. I saw the rainbows around the lights around dinner time. I know this is also a symptom of being tired as well but as soon as I ate a bit and got a bit of water in me it went away 30 min or so later.
I have talked with my neurologist about this and he has not really had any thoughts about it yet besides checking my trough levels of cell cept and making sure it is doing its job since it takes 2 years to begin doing it’s full job. If it is not he wants to switch me to something else like imuran. We will see.
I wish with this symptom it was something better to report like rainbows accompanied with unicorns! Rainbows are usually a good sign, lol. It gives me a bit of anxiety because lately I have been having more ocular symptoms than anything else. In the past it was swallowing/ vocal issues. However, I don’t mind the change up as much, it just takes so getting use to as I depend on my sight so much and have to rest my eyes more now by taking cat naps or just sit in the dark.
I have to wear shades more often, even on cloudy days, and I have to come away from the computer and my books more often which I have yet to do. I need to create schedule breaks to do that! We will see how that goes, lol.
I always use to say that my biggest pet peeve was ignorant people who were intentionally ignorant! Which in other words means that they are in some way obnoxious. These are the people who could easily go and help themselves to the answer by opening the book in front of them, or listen to what the teacher just said and have the answer we all just heard but they ask a question just just answered, or they blurt out something ignorant instead of observing something when the answer may come if they were just patient.
However, I realized that maybe this is simply part of my anxiety as well. You always hear the phrase my educators that there are NO STUPID QUESTIONS! Weeeeeell, as my mother may say (who was an educator, there may be if you TRY! LOL. I have been around people who I believe their life goal is to see how far they can push me before I snap! I believe they can see an ANXIETY CASE from a mile away and they want to see how well I can contain myself. Though these people make my skin crawl and my brain will not calm down for several hours I still will not show it. The problem is I can contain myself very well, but the thoughts in my head start to sound something like this:
Male Client: Where are the towels?
ME: You me the the ones that you passed while getting dressed on the big 5’x 3′ rack with over 300 towels on it right by your gym bag?
In My Head: Open you friggin eyes, it’s U shaped with no obstructed view, it’s literally 3-6 feet from your bag in any direction, how the heck did you miss it, you have to pass it to go in and come out of the locker room! And the fact that you didn’t just go back in and look for instead of coming to me to ask says you show no initiative, I can’t go get it for you!
Stranger: Why are you sitting in that handicapped seat you don’t look handicapped?
ME: Many people who are disabled do not look like what they are going through.
In My Head: You rude jerk, you don’t look handicapped either but from that question you are obviously suffering from severe mental retardation your IQ is lowered than 5. And your empathy/ sympathy rates on the scale of nonexistent as my husband is standing to let me have the seat is 2 seconds from jumping down your throat had I not retorted in a satisfactory manner.
These are just some examples of what I mean when I cannot tell if I am dealing with anxiety or dealing with a pet peeve as they both give me the same feeling! It’s a harsh reality some days!
When you start losing everything you have to start looking at things as a sign to slow down and think! Take a mental inventory of everything each time I go somewhere. Do I have the basics? Do I need something more for this trip? I ran into this issue as I had to start upping the medication for my migraines as without reading the side effects memory loss began to be an issue. I was worried at first that it was a side effect of MG. However, as I was already in the habit of creating to-do list because I love to see things get checked off them it only made it more fun for me each day to continue to make more.
The down side is making sure that surprise events do not screw up my routines. Surprise events include someone calling while I do my morning mental inventory to be sure I have all my things packed. Some people say do it the night before…the only problem with that is more people are active then, I get more phone calls then, my husband is home and I am more distracted. In the morning, it’s quiet and my husband is either sleep or gone for work already so I get that time to meditate and get things done.
Moreover, at this time period versus when I was first regulating to the increase in the dosage I know longer have the fogginess that was accompanied by the migraine medication (topiramate). That was the worst as I felt as if I was not fully awake and could not think clearly. Now I just grab a bit of chocolate or make sure my diet is very well-rounded and some good exercise and it works pretty good. On the worst days I may have to snag some heavier caffeine like a soda (Dr. Pepper). But I feel as if I have mastered the preventative migraine meds. I pray I will not have to go off them when I decided to have a baby, lol.
It is the only thing that has helped after many trials over the last 4 years and being on different on the spots meds over the last 8+ years. I think we have a winner. Now if I could just help my husband remember things though he is not on any medications, LOL