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Last Week With Dystonia

Summer time, for most people this is sand sun and fun, but as you have figured out if you have been reading this blog I am the exception to every rule that there is. Summer time is the hardest time of the year because I cannot take the heat, by about noon I can only lie down and do a few things because of the heat. My skin feels like it is on fire, and when the sun hits it it is almost a boiling feeling on my skin.
  With the new medicine the doctor gave me for the skin problem has come a new phenomenon, I wake up early which is a blessing because I can enjoy a little bit of the day before the heat sets in. Last week I was told we would have a cool wave and it would be in the 80's for most people that is fine, but it really doesn't matter to me if it is is 80 or 100 it still feels the same when going outside. Sometimes in the late evening after dark I can go outside and just sit which is nice.
   I also have started a new symptom that about 2-3 O'clock in afternoon I will just crash, and lose my memory from what happened before I crashed. I will bring this up at my next doctors Appointment.
   I was able to go to church Sunday morning which was a blessing, but by the time it was over my skin had hit the boiling point I think. I had to have someone start the car to cool it off so it would be somewhat comfortable to ride home. I was not able to attend last night however because of the crashes I have I can't make sense and I feel like I am here in body , but my mind does not comprehend what is going on, this can be very frustrating for caretaker and patient. because she will have to remind me what day it is what time it is, and what had gone on during the day, because I cannot remember it, and that task becomes tedious.
   These are things that I want people to understand about this disease, because if you do not have it, it is hard to understand, things that most people do without thinking Dystonia patients cannot do or have to plan there day much differently.
    For my wife and I we cannot make plans in the Summer to go to the Lake, or plan
to do things together in the afternoon with friends, because it is not possible, and it becomes a Lonely feeling for patient and caretaker, and then the mental toll starts. I want to go outside for walks because I get restless, but I cannot because it will cause me to have a storm and I will put more on my wife than she already has, which believe me you would be amazed at what she has to deal with, and I do not want to add to that. So our friends our few and far between because face it who wants a friend that can't ever do anything but sit inside when the weather is so nice everyone wants to be outside. I cannot blame them, but I start to feel alone sometimes I am not afraid to admit is, and such was last week. I felt very alone, and nothing anyone does or says can change that. It is just a mental part of the disease.
   Our friend from church is putting our flooded basement back together, and I really appreciate him and his family they have been a blessing to us. I would say we have been working on the basement, but that would be as falsehood. He and his boys have been bricking the basement to try to prevent water from flooding the basement again. He has been over the last 2 weekends and plans to be over this weekend. I do not mention his name because I know him well, and I do not want to do something he would not like. He has been a true friend, and someone I can talk to and he will listen, and willing to do anything to help anybody, which is a rare trait.
   Last week was one of those weeks that mentally took its toll on me and my wife. We have some weeks that are better than others, and we are thankful for those.
  The disease in its entirety continues to wear us down, It is tiring, and mentally draining, but we try to make the most of what we can. It probably has been 6 months since my wife and I went on a date, Just the 2 of us, we used to go more often, one when we could afford it, and our health was better.
   I will not lie SSDI does not cover much it is a financial struggle to stay afloat, and that weighs heavy on my heart because I am the one that is tasked with supporting my family, and I cannot.
   This is the start of a new week so we will see what it brings. I know things could be worse. believe me I have been told that, but by people who do not understand. I have never been told that by someone who has this disease or any other disease or having financial difficulty. or other struggles. It is usually done by those who do not take the time to understand what it is that you are going through.
   Please continue to keep us in your prayers my wife and I need it. Discouragement sets in very easily, and that is not a good place to be. I wonder why sometimes, but it is not my place to know there is one who has planned out every detail of my life Pray I will rely on him and encourage myself in Him. because I cannot do this by myself!
    If you would please click the follow button on th top right of the page if you have read this blog. I appreciate you reading my thoughts, struggles, and victories along the way. I have a beautiful family and very supportive and helpful and I thank God everyday for them. I do want to take time to thank my Daughter in Law Mandi for having my Grand children video message me on my birthday it was awesome!

Comments

  1. Mother Goose is in Maine but she in pain. That catchy little poem is to start your day on a cheery note. I miss you and hope that you feel like calling soon. I never do find that button that proves that I read your post but I really do read them. I had a conversation with one of your siblings that was almost a carbon copy of what you wrote here. There is no comfort that I can give you except that the Lord has promised to never leave us or forsake us. Remember the song “Never Alone” - you are good at remembering songs. I started reading my Bible one morning - I think it was last Saturday. It was Joshua I was reading just started chapter 13. If you are old don’t go there first thing in the morning because there is comfort there but not readily apparent. It says,”Now Joshua was old and stricken in years...”. Guess what the Lord told him. “He said unto him, Thou art old and stricken in years...” I started laughing out loud. Like Joshua didn’t already know? The Lord has a way of making things plain to us because we are probably not going to get it otherwise. After I got through laughing, I continued reading. I was still in verse one so the Lord had gotten my attention right away. After reminding Joshua that he was old and stricken, he goes on to tell him,”There remaineth very much land to be possessed “. You see that was the job that God had assigned him, and it wasn’t done. God goes on to remind him of all the work that remained and is telling Joshua that he had better get busy. God has a work for us to do and we need to get it done. We may not be physically able to do much but we can ask Him what he wants us to do with the resources that he has given us. He was happy to tell Joshua and he will be happy to tell us. Then with his help we can get busy and finish the work that he has laid out for us. I think that this blog is one of your important tasks. It is a comfort to know that there is someone besides me who forgets whole blocks of time, events, conversations, people. It is a difficult and discouraging thing to go through. I am sure that our caregivers tire of saying that yes, that happened, this is how and when it happened, yes you know that person, you had a picture taken together and here it is on my phone, and so on a hundred times a day. We just need to spend some time in prayer for them that the Lord will grant them grace and peace in our trials and storms. The Lord has shown me some things that I can do for others, for the church in which he placed me, and for my church family. There is much work left to be done and no one else can do my part. The Lord said that he would do the fighting so I just need to follow him as closely as I can until the work is done. He has work for all of us and being stricken is not an affliction - it is a wonderful reminder that the time is short and our Savior wants us to get busy with the job that he has given us. Love ❤️ you my little gosling so keep going.

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