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!
SO I skipped my workout yesterday because I had the early shift at work and I had to open the facility. That means getting up at 4am. I like working out before my shift because it means I am usually less symptomatic from my MG and able to gauge how I will feel the rest of my day. However, on my opener day this cannot happen. I usually have to workout afterwards. But Yesterday being that this is the first week of working out in 7.5 months I am easing if you will back into. I say easing because some people who are not use to working out would not call my 12 mile bike rides on Tuesday and Wednesday easing back into working out.
However, when Midday Thursday came some symptoms decided they wanted to go haywire. I got double vision for no reason at all. I recently stated in a post that I was nervous that would not be able to tell the difference between MG fatigue and exercise fatigue and this was that day. I was easily able on Tuesday and Wednesday, but not yesterday. It alarmed me and made me feel like if I exercised I may have pushed the limit and caused more issues than I was willing to deal with such as being out of commission exercise wise for several days. Since I just got back into this that is the last thing I wanted. I also had several things I had to do yesterday afternoon and so I decided I would just go and run my errands anyway. Though By far I would not call my errand exercise (Even though I walked my butt off) I definitely felt it when I got home because I was up until nearly 11pm and had to get up at 5am.
I was so on edge yesterday afternoon from not having my workout and then being late to my friend’s special event that my anxiety went through the roof. My husband could not understand it. He has known me for now 5 years and still does not understand that my anxiety is a disorder. That is does not go away, that I control it as best I can but that it gets out of control sometimes and I try my best to control it all without medication because I hated being on the medication 15 years ago. It was for a short stent (less than 6 months) but they way I felt was horrible. So I figured I could combat it with exercise, meditation, music, and other soothing dissociations. I do pretty good until one triggers happen such as being late, rushing, money issues, car issues, being lost, or my anginophobia strikes. I feel bad for most anyone in my way then. I cannot help it. I do not really know the root of these issues fully I somewhat know where they stem from but my logical self cannot stop me from feeling the way I do and acting the way I feel.
What makes it worse is when those who do not understand say things like just calm down. Or it’s not that serious! You are overreacting. In hindsight I may know these things but I am usually embarrassed because someone witnessed my meltdown. My poor husband is getting better about dealing with it but he is still learning what not to say, and when not to say it, LOL. That’s hard enough with women but with a high anxiety woman BOY OH BOY! Thank goodness opposites attract and he is more laid back to fit my anxious life!
Today I do not care if my whole body tries to shut down I will workout! I will sit on a recumbent bike if I must and read a book and go at a snail’s pace and do it! I don’t care if I can only do it for 30 minutes. It’s better than nothing to help keep my anxiety down. I cannot function otherwise. My books, my exercise, my games, my dissociations are my FIX!
SO there are always surveys and research studies that are conducted for all kinds of things from your favorite color to how well you cope with the your chronic illness. This can be done on an individual level to how well people do on a whole or in a group. This can also be compared across a group from a bunch of individuals. Several research studies have been conducted on individuals with Myasthenia Gravis and their quality of life according to the Myasthenia Gravis- Pipeline Insights and well as the my author listed below. Their findings are similar. Stating that Younger more symptomatic women are at a higher risk for a lower quality of life. We are less likely to be happy, because we are in more pain (emotionally or physically, have more bills and concerns, and so on. That is a big 10-4.
It was gender specific stating that it was the women more so than the men, that had not had a thymectomy, who were not in remission, or only had ocular myasthenia (which means they have more than just eye related MG). I would say that would make anyone down so I am not sure why it only affects women more than men. Especially since more men have it and generally men over 60. I think maybe it as to do with the fact that when it hits women (generally around 30, we have our WHOLE lives ahead of us. It’s a really hard blow. We still have a lot of things to accomplish or do, you may not have children yet, or have gotten married, or found that professional level at your job and now you have to try to do it with a disability. Where as at 60 you are mid-stride or beginning to slow down in those areas.
I am a super cheery person but I did go through a dark patch for a while with these things as well. I still hit some moments of quiet meditation to pull myself up by the bootstraps and keep pushing forward. It’s a lot to deal with. However, I ave some of the best people and support around me and many GRAND distractions, LOL. I also love living the life I have. I have too many things to be thankful for and I know that there will too many good things to come to be unhappy for long. Something will always be around the corner to make me smile or laugh so I can never stay down too long. So even when I want to be down it never works. I just found these studies interesting because though they are not me, I can see how it could be anyone!!!
These studies are definitely me at times, I’m sure they are anyone with a chronic illness at times. I also believe that these studies are also needed because maybe they will find more outlets and programs for support groups and therapies for people with disorders and diseases. Many of us with these disorders, especially when we first are diagnosed feel confused, angry, and alone. We need to know that someone has this and that they felt this way and it is a normal feeling. We also need to know that researchers see this and hope they are going to do something about it!
From the website
Author: M. BoldinghL. DekkerA. ManiaolC. BrunborgA. LipkaE. NiksJ. VerschuurenC. Tallaksen
Credits/Source: Health and Quality of Life Outcomes 2015, 13:115
Myasthenia Gravis- Pipeline Insights
I have struggled constantly with pride and confidence while dealing with Myasthenia. I did not use to think it was pride but it most of it boils down to pride. I find that being so healthy and independent and now having to let people know when I may not feel well or calling doctors constantly is not my style. I am use to being spontaneous. I am use to ripping and running and if I forgot a meal or if I worked through thee night on an assignment, ‘oh well’. I could go for days on 1 night’s sleep, some junk food if I needed to (though I eat pretty healthy), and still make it to work on time. I have always worked a varied shift instead of a regular 8-5 as well.
However, now with MG, this is not helping me. I am fatigued constantly, I have to plan rest carefully, and I have had to learn to ask for help. I have had to ask for help…something I am just not use to doing. I feel like if people wanted to help me they would have been doing so all along. Though when I was diagnosed an out pouring came from those close to me, I had to learn to accept it, even though I did not want to.
I had to learn to voice what I needed and how to delegate, just like I do at work. It was hard. I also had to make sure not to take advantage of people, as you are then in a position of power and it can become easy to do this when people are helping. Though everyone stated that I still was not using them enough, lol…they would let me know if I was. I constantly apologized to them when I needed them for something and felt sorry for asking them for help. I felt like a burden. I had to learn this was not the case as they really wanted to see me better and it would not always be the case as I got stronger, and they were/ are right. It has become so much better.
Confidence is was another issue I dealt with and I still deal. I feel like I am not worthy of many things but I am getting better, that was something I had to learn on a spiritual level years ago with God after being diagnosed with MG I sort of hit ground zero again in that department with that physically. I felt like I was no longer beautiful thanks to my physical scars and appearance. The changes my body was going through and the sound of my voice. I felt so lost. Though I am getting stronger with my MG and these things are getting better and happening less often, I have had to learn that I am the one that is more cognizant of these things than others. I have to have more confidence in myself and my abilities and that no matter what there are those that love me and know my worth and that is all that matters! God has created and blessed a path for me and I will find it and make it because I can overcome this!
We all need to find what works but as with every disorder, illness, and bit of stress we encounter we have to find a way to ease the pain or symptoms. Typically we can soothe the beast with with dissociation. I find that by calming the spirit or the mind with music or water is most helpful.
Water is known to have a so many healing properties and that is why there are spas everywhere but you do not need to spend loads of money to enjoy a spa experience. Even the sound of water such as a waterfall or stream is said to have therapeutic effects. We use water to reduce inflammation, increase circulation, and hydrate our bodies. Yet I use water to feel like I am flying. I have been a swimmer for as long as I can remember and I combine swimming and music now with my underwater music devices and now I swim longer even my scuba or snorkel gear and wish I could live underwater. I am weightless and it gives my joints and body relief and allows me mental freedom to just float and let all my stress float away as well.
Music also has healing properties. It has the power to make us feel! We can feel sad from a song about a lost love to happy about new love. We can feel inspired to keep trying not only through the music but by the words that are used in such an elegant and poetic way with the seamlessness of the music. You have to be selective though because music can make you feel…and that includes like I stated sad, angry, or negative. I use my music to push through a workout and to heal my soul when I feel at my lowest point. It helps to inspire me and uplift me. I tend to listen to a lot of neosoul, contemporary gospel, and upbeat R&B with a mix of Latin/ reggaeton at times. I LOVE to sing and dance, LOL.
There are also other outlets such as arts and crafts, that I participate in like crocheting, painting, and creating pottery. I also enjoy online gaming with friends and my husband. In addition, hanging out with family and friends helps ease my stress as I have an outlet to eat and be merry. It’s always good to have good times and hang out and not talk about “your disorder” and just enjoy life.
Find your healing and escape, we all need one sometimes!
There are many days that I feel worn down and the only thing I want to do is sleep or hide. But I will say that smiling and pretending to be normal gets me through the day. Though some people may say this is called being fake I disagree because at the end of the day I feel better because I have made it through the day, it generally was a good day, and that smile comforted others in some way.
My philosophy is that you should not look like what you have been through. That is the life of a MGer. We basically look normal and for a person on the outside looking in, we look as if we have no disorder at all, unless we go around depressed, complaining, or acknowledging the physical scars we may have incurred from any surgeries we may have had. I encourage and challenge you to keep the mindset of smiling no matter what. I do it in when I am in the hospital, at home, and work and it is amazing the positive looks and comments I get. I do not do it for that reason, it is something I have always done but when I was at my lowest point in life I had to relearn it some years back.
If you are new to this method start by trying to find the positive in every situation…I know that sounds CRAZY and hard to do. In everything bad that happens or that really bothers you or gets you down find the positive. If you do not get that job, think that there must be a better one coming that better fits your needs (though at that time it may not seem like it). Sometimes this may not be possible at that time because we are human and we are emotional. But when we calm down we realize that positive things did happen we we just do not say anything and think on it. Many times I just say nothing and realize that things come together at some point. It may not always be immediate but they do come together. I didn’t get that job, but then I hear the company was in the news for something horrible, or I was late to work and there was a car accident right where I was supposed to be had I been on time, or I was sick for a week and used my vacation in the hospital but at least I had it to use and my boss is understanding and flexible.
Sometimes my smile comes from thinking of what I have left to look forward to, my family, husband, the future, my vacations, my games, my reading, my blogging, life, and so on. I Thank God for all of that. That makes me smile often too.
SO smile life is not that bad when you can still smile! You can inspire others and comfort many more!
So some people are born with chronic disorders and some people get them later in life. Some people have a strong faith before getting them and some people have to find something to hold on to to get them through it. Some people get lost and never find their way and fall prey to hermit lifestyles, depression, and even suicide. However, on their journey there are a multitude of other disorders and issues that people find in between. It’s not to say that people cannot still have them even if they have a wonderful higher power that they believe in, but they are usually able to feel like they have a better control/ handle on them. Having Myasthenia Gravis is a chronic disorder for which currently there is no cure. However, I luckily was in a good place spiritually before getting this news and continue to have a strong support system and find more ways to gain this support and vent since my diagnosis through blogging and online support groups. However, had this been 3-5 years before this I would have been in serious trouble.
Many times in my life I struggled with KNOWING I was Christian and believing in God and being too logical to understand how these things could be when I was depressed and was ‘failing’ in life. When things went bad I did not know what to do and felt that was the only time to turn my faith. LET ME STOP YOU HERE! I will not begin to bore you here and say I am a overly religious person who goes to church every week and reads the Bible faithfully and prays all day everyday. Because I do NOT. I am spiritual. I believe in God but I also believe that people need to believe in whatever makes them happy. They do not have to believe in my God; however, if you see that my life is going well and I’m happy and you want to try what I do, you are welcome to try what I do. I believe that you should do what makes you happy within reason and believe in what gives you the power to overcome your trials, believe in you first…but if that is not enough, believe in your children/ family, or your God(s). I thank my God for everything that he does for me especially the small things. I have learned to enjoy those the most because when I am sick, they are the things that I took for granted and appreciate the most when they are gone.
I assure you if you can find grace, happiness, and peace now in small things, when the big things start to happen you will be ale to handle them a bit better than you ever expected! I won’t promise you will not be stressed or that you will not cry, but you will find strength that you did not realize that you possessed before. Then you can save that feeling and memory and know that you got through that once and next time you can do that or a similar experience again if you need to.