One thing I have not really addressed here is the constant pain that Dystonia causes. There is never a moment when Pain is not a reality, because with this disease pain is your reality. There are definitely Times that I feel better than other, but my muscles never stop.During a recent Dystonic storm I was so exhausted, but my muscles kept twisting and turning I looked like an owl because my neck was turned almost completely around, and my legs would not stop running, and there is nothing that can be done. I have to wait it out, and wait for it to finish. It is like you have run a marathon and you cannot go any farther, but you keep going only because it will not stop. I have gone to the hospital several times with these episodes that do not stop, and they try to give me an I.V. and it does not work because my arms and hands are twisting and thrashing, and I get told to stop it, does not make much sense because if I could have stopped it I would not be in the hospital in the first place!
I do not remember what it is like not to have any type of pain. sometimes the pain cannot be seen I am just twisting on the inside most of the time my ribcage feels like it is twisting from side to side, and sometimes the twisting can be seen like when my head looks like it is attached to my shoulder.
People forget that even though I may look like I feel well on the outside that is not the truth. I am getting better at putting on a face that portrays better than I feel, because when people ask you how you are they really do not want to know. It is just something to say.
There are times that I fade in and out. I can be talking to someone, or they can be talking to me and my eyes will be open, but I am really not there, and when I fade back to reality I am expected to know what they were talking about and if I do not then I have had many people get upset and tell me that I am ignoring them, but the fact is i really am not there. It is just my body. This Disease frustrates many people, but no more so than the people that have it. It would be nice if people were more understanding and I think that they would be if they understood the disease better. We cannot judge someone unless we have walked a mile in there shoes, and since this is a rare disease I find few that have walked a mile in my shoes.
There are sometimes that I am more subdued than others, and again it will be due to the amount of pain or mental struggle I am in at the moment. I have better days than others. If you see me on a bad day you may not here much from me, but it has nothing to do with you, it has everything to do with the disease, and as I have said before the mental struggle to keep going is harder sometimes than others, but I cannot give up
You must understand that this disease causes chronic pain and mental pain as well so please understand you do not know what is going on in my body or in my head at the moment that our paths may cross. I could be it a fade in fade out mental state or a mental state that I am fighting to keep going, or it could be a physical pain that is worse than normal, and there is no cure, or anything that will take away the pain that I struggle with everyday with this disease. I do not get a day off.
So do not Judge to harshly or take offense so quickly because you would not want someone to do the same to you. My mind does not always work like it is supposed to, and I may not always be able to pay attention to what you are saying, but be if you know someone with this disease or any disease try to be compassionate try to put yourself in the place that they are and see how you would want to be treated, and you may find it is not as hard to repeat yourself because I faded out. Love someone today. Love is an action! Learn to be patient with people you say you love. treat people how you want to be treated, for one day a disease may come knocking on your door, and how will you want people to react. This disease has changed me Please at least try and understand. God Bless
Mother Goose knows how you feel and knows how difficult it is to be among people when pain is so overwhelming that it is difficult to even be. I always try to be kind and loving because I truly love people and want to be a blessing to others. There are times that I say things that apparently hurt others. Most of the times this happens, I really don’t know what it is that I have said. I can only tell that I have said something wrong is by the looks on their faces and the person will stop talking to me. Sometimes people won’t have anything to do with me for a long time. I truly wish that others would try to be more understanding. Just being in continuous pain makes it difficult to be in public but staying inside and alone all the time causes its own pain. It is all so difficult to explain but sometimes I feel that everyone would feel better if I were to to do that so that they would not have to put up with me. I would still have all the pain and it would be less if I stayed at home. I want to be in church and have the fellowship with others but I don’t want to hurt the feelings of others. It is a great problem for me as to whether to go or not. I haven’t let this prevent me from going but I am afraid that as the pain gets worse, I will let it affect my decision as to whether to stay by myself or not. Does this even make sense to anyone. I want someone to understand and help me to make a decision. The only answer I know is what God’s word tells me and that is to not forsake the assembly of ourselves together. That has to be my answer because it is God’s answer so I pray that my much loved church family as well as my much loved family will still love me and try to forgive me.
ReplyDeleteIt is incredibly hard to be wonderfully friendly or even overtly “present” when in pain. In my opinion, God gave us grace, and we should give grace-ALWAYS. If someone is struggling, then listen. However, I don’t understand people getting angry about what is said. Sometimes people lack tact or can’t really even find the words to communicate. You should be able to go to church and be loved unconditionally by your fellow church members. It does make sense. Sometimes I feel like maybe somebody should just lick me up somwhere. I literally feel crazy at times...and during certain brain/seizure modes I say mean things or things I wouldn’t usually say. My hubby and daughter are gracious and have the patience to put up with me,for that I’m thankful. Yes, it makes sense. Go to church if you can, and those at the church then have the chance to put their faith into action. Love you, mommy,so much!
DeleteI love ❤️ you no matter what you say or do. When you are not “yourself”, I feel sad.
ReplyDeleteAgreed!
Delete