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June is myasthenia gravis (MG) awareness month. For those who have never heard of this rare neuromuscular autoimmune disease, here they are a few of the interesting data on this:
1. You can make the body is weak at any time
2. double vision and drooping eyelids are a key feature
3. it can cause severe fatigue in the neck or limbs
4. it can affect breathing
5. worse as muscles are used
If you have MG as I know that some days are great, while others simply do not go as planned. In a moment you are on your game and go about your life as the warrior who wants to be the next you’re in a myasthenia gravis crisis, curled up in a fetal position on the bed. It’s just the way it goes.
had one of those moments a couple of days ago. I woke up, I found some errands, got coffee with my daughter, I picked up the house, had carried out for dinner and then sat down to eat as usual and then sat down to eat. I could feel myself getting weaker throughout the day, but thought I could negotiate my way out of it. The conversation in my head was:
Me: You’re right. Just finished dinner and can be fixed.
My body: I’m not good! I’m not well! May Day! May Day! Good heavens will die here in the middle of fried rice. Abort! Abort! All hands on deck. This is over!
Me: Calm down body. You will be fine. You’re tired and we hope in time to eat. Let me finish dinner and we’ll go to bed early.
My body: No! I’m melting! We are beginning to have a respiratory problem and probably have to go to the hospital, probably in the ICU with that terrible nurse. Are our roles, even in order? Where is my bag? Or maybe we’re going to pass out again. Oh God, I think we’re going to pass out! I do not like fainting. Wait, I think I just lost my legs. Did you feel that too? That means that the arms are close behind. Oh no! Save yourself! This is getting real right now! Lets go down!
If you have not noticed, my body is a bit of an alarmist – and largely a drama queen. Although it has a lot of history to justify post-traumatic stress disorder (PTSD), as we have been through a lot over the last seven years. It had been a long time since he had had a complete system failure, so I guess it was due. He had ignored many red flags telling me that he was coming.
My MG crisis began with a swirly feeling dizzy in my head. Then came the feeling that I could not take a full breath. Mien decided to abandon my food and head upstairs to bed, but could not get out of my chair. As my husband was helping me, my arms and handed so I started falling to the ground. My daughter was close and I caught her and helped her father to get to the couch. By then I was covered in sweat and can not breathe. After a few minutes the three made it to the stairs (side note: my next home will definitely be a story). I ran up the stairs hit (he sat in one step and climbed back on my back, pulling each leg until I was) with my husband pulling me up every step until I got to the top. Then I did a crawl army to the bed where I was raised in.
devastating for them. Demeaning to me. I’ll probably have to put my daughter through therapy.
Unfortunately, it is what it is. Not much you can do about it. If you have not been despite a crisis before, good for you. If you have, you know what I’m talking about.
Although not all crises are the same myasthenia gravis, there are some things we must do all when one hits. Here are some tips to stay safe and healthy:
1) Do not panic. If you feel that the walls will not make matters worse by panic. Cortisol sends stress in your bloodstream, which amplifies the immune response further. It sounds counterintuitive, but lean in their crisis as a karate master. Tell yourself, “OK, this is unfortunate, but I’ll be fine tomorrow so let’s write this as part of the race and deal with what is happening now without projections into the future. “ staying present will help you stay a little quieter . Think of all the things I will miss later because of the fall.
2) Check in with your body on a regular basis. I know my body pretty well, and I had to get to know that many times. We are not always friends for one thing I’ve learned is to record and read the signs. If my legs are not working well I know that my balance was off soon. Here goes my breath and so on. All these signs means it is time to sit down for a while. Usually, that’s all I need, but when that does not work, I’ll lay down in a quiet room. By making small check-in, with a little experience I have learned to read and navigate my body my life with this disease.
3) Have your medical information to date. Do you have a medical card? Bracelet? Application on the phone indicating his status and all your insurance and information? If it does now . And now, I mean right after you finish reading this post. Do not wait or put it on your list, because you never know when you’ll need. I fainted once in a farmer’s market for me and this little app on my iPhone kept me safe and the people around me said. At the moment I woke up in the (so embarrassing) paramedic van, which was already on the way to the hospital my doctor standing. First responders know where to look on the phone and does not require a security code to get the information they need. Make sure you have all the necessary information ready for anyone who needs it so if you go to the crisis, which has its back.
4) Ask for support and be grateful. I’m not a fan of asking for help, but when I know things are not looking good for me I’m not afraid to ask family, friends and strangers sometimes the total aid. They have never rejected me so far. not a hero. If you need help, ask. If you get it, give thanks to those who responded. It is very easy and I have found that people are too generous with their care. I have also tried to offer help to someone who knew he was fighting only to encounter a rude, aggressive response. Do not do that. People are just trying to be friendly. In addition, participation in a common humiliation makes it not so humiliating. Joining a support group of people who really understand and can laugh and mourn with you after you are done with their crisis. We’ve all had some pretty bad (as in the market for a farmer and has the lady humus try to give mouth). The exchange of common experiences that make us feel a little less alone in our struggles. If you do not know where to look and desire an authorization group of people who never give up their battle, my private support group Facebook welfare warrior tribe. We understand.
5) Prevention is the best treatment. After many years of dealing with health problems, which can be a bit sloppy. Make sure you know your triggers and are taking care of yourself all the time, not just when you are wrong. Be aware of your diet and self-care on a regular basis. I should have know better eating Chinese food, such as monosodium glutamate is a major trigger for MG but I did anyway. dumb move on my part. It’s like being on a plane for an emergency situation. oxygen mask first before placing it on anyone else gets. Care of himself and stays true to what works and reject what you know is not healthy for you is not a luxury, it is a necessity. You can not beat the system in this case. The house will always win.