My mind wonders what I could be doing if I did not have this disease where would I be working, would I have the same job as I did when I had to stop working. These are all questions that I have, but no answers. I think of how much easier my wife's job would be if I could do the normal things that a husband is supposed to do.
I have been looking for work that I can do from home, but those jobs seem to be few and far between, and I have not gotten a call back in 2 years on some that I am qualified for. Dystonia can take alot from you it can even take the identity of the person that you thought you were, and change your whole outlook on life. I constantly have to ask my wife to do things for me, or my daughter, and I do not like it. I feel like a burden to those who have to take care of me and how much easier there lives would be if they did not worry about me all the time, but from moment to moment no one ever knows what I am going to do, if my mind will go crazy, if I will have a seizure,or Just twist into a human ball, but someone always has to be on the lookout for these things because most of the time I cannot see the triggers, or I see them to late. This summer more than most my skin feels like it is on fire and I cannot seem to get that under control, and neither can the doctor, but I guess that should be expected. Doctors are perplexed by this disease, and there are some that say it does not exist. I guess if you ignore facts then you can convince yourself something does not exist, I do not know how they rationalize it.
Today has been a struggle, more so than most days, I am a little more discouraged today than yesterday, but I am trying to be thankful for the good days that I have. I need to learn to focus on the positive part
I know I do not have things as bad as others, but the reason I started this blog was to give people an insight to my family's day, and it helps me to write it. It seems therapeutic somehow, and maybe if people read it they might get a glimpse of what a day in the life of a Dystonia patient is like.
My family is struggling, and it is a hard thing to admit, but it is the truth. We do not know what to d sometimes. It is either laugh or cry one or the other. Sometimes I cry I will admit it. sometimes it is my wife that is crying, and I have seen my daughter cry even though she does not know it.
I am still twisting inside from the seizures that I had earlier my rib cage feels like it is being pulled to one side and my legs are tight it feels like a charlie horse in both legs. So sometimes it is hard to put that smile on and go out into the world, and pretend that everything is fine. Some days are easier than others today was not one of those days.
Mother Goose talked briefly with her precious gosling last night and knew. He didn’t talk long because he was tired.. sometimes we talk longer and we can laugh like the old days. Last night neither of us felt much like laughter. Believe it or not, he had called to see how I was doing. He was at church twice on Sunday and I couldn’t go at all. Something happened Friday evening and I was in too much pain to move. I thought it would go away but Monday morning came and it was still there. I called the doctor Monday morning to find out if someone could see me. At 1:20 I was in the doctor’s office telling another story that was somehow familiar but still different from anything that I had experienced before. She thought that it might be bursitis so she said that a steroid shot might help. By then a shot seemed like a great idea because I figured that I needed something else that would hurt so I agreed. Another problem to add to my list. Later I asked my husband if he ever remembered a doctor mentioning bursitis and a shot. At first he said no but after he thought about it he said he did remember something like that. He said he thought it was the surgeon when we last visited. By last evening when Joshua called me, I was feeling better and I wished that he was. His father told me Sunday night that when Joshua left church his foot had started to turn and I knew bad things were coming. That was just the beginning of his yesterday. He was a blessing on Sunday when he got up to play his bass guitar. He was back again Sunday night to play the bass. That is the first place I look when church starts - the spot where he stands when he plays. I am always happy when I see him there because I know that playing the bass is one of the things that he loves most. I was even happier when he took the acoustic guitar ( I think that is what it is called) and I got to hear him sing one of our old family favorites. What a blessing! 💕 Monday he had the bad day that I had feared he would. I had a bad day but it was getting better until he confirmed that he had a bad one. How I love 💕 my dear children who were so much a focus of my life until they got married and left home. The only thing I can do for them now is to be here when they need to talk and let them know that my love for them has grown stronger and deeper as has my love for the Lord and their dad. We have been married for 48 years and saved for 43 of them. Thank God for saving us and letting us grow in faith and in his grace until the last 26 years of dealing with the health problems of our precious children. We know that he has a purpose in all of this and he is under no obligation to tell us what it is. All we need to know is that we are his and he is GOD. He loves us and he may do as he purposes. I love 💕 you son, and pray that you will feel his presence today.
ReplyDeleteI am so sorry that you and your family suffer this disease. I think you are probably the only ones that could bear it so well. I admire you so much but I know it doesn't make your situation better. I pray for you and our church prays for you as I am SURE that many others are praying. Sometimes we don't understand God's plan but we do know hears us.
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