• Coping With Permanent Labyrinthitis, 5 Months

    medicinenet.com

    medicinenet.com

    Progress and driving the back roads!!!

    After five of the longest months on record, I can actually say that I can finally see progress coming quickly. In fact, as of today I am driving the back roads of Comanche, Texas! I have no idea when I will be able to drive Central Street, much less head my vehicle out of town, but just to be able to go to the Post Office, the grocery store, and the nursery by myself has the feel of someone let out of prison.

    So where am I on the road that is labyrinthitis?

    1. I’m still using a cane, and I’m not sure how much of that is necessity and how much is confidence. I don’t use it in the house, and I probably don’t need it if I am just going a few yards. However, I think it will be a while before I can chunk it for walks of even 50 yards, especially if the ground is a little uneven.

    I’m trying to make myself exercise as much as possible, and I am actually getting better at walking and looking up (at least a little). I can even wave sometimes now!

    2. The reason I cannot drive in traffic has to do with turning my head. I’m to the point that I am no danger to you. I’m not going to run a sign or pull in front of you so I don’t worry about that. I also no longer have the “episodes” that knock me to the ground as if a small explosion has occured. That danger seems to have passed.

    What I can’t do is protect myself from you. If you pull out in front of me where you do not have the right of way, I can’t turn my head fast enough to see you and react. I also can’t change lanes in traffic for the same reason; therefore, no driving in traffic.

    If you find yourself behind me, I will drive you crazy because I drive very slowly (have never done this in my life!), and I can’t just pull up to a yield, look as I come upon it, and drive on through the intersection. I have to stop, get set, and then turn my head to look. As I said, you absolutely won’t be in danger from me…unless you are prone to inner town road rage! :)

    3. The exhaustion that comes with labyrinthitis is pretty overwhelming. Rickey, who has  become an expert on the subject right along with me, was the first to read it and tell me that this would be the case. Since every step is a risk, every step that I take uses many times more energy than did my old steps. The good thing is that most of the time I just feel shaky. The marbles are gone for good, I think, and the marshmallows are leaving a little every day.

    4. I think that I am going to beat the year sentence that I was given, but I also believe that this is one thing that doesn’t “go away,” for lack of a better explanation. I don’t like it, but I believe that the off-balance sensation that comes with labyrinthitis is always going to be with me. I am just learning not to let it make me fall.

    Thankfully, to be as ungraceful as a cow, I have always had wonderful balance. That has helped tremendously. However, I’m not sure how I will handle this off-balance feeling as I age.

    5. The one symptom of labyrinthitis that I am not going to beat is my night balance. I had hoped that the doctor was wrong when he told me it was gone for good, but I have accepted that he is correct. As long as I have some light, even a night light, I am fine, or at least pretty good, but the few times I have forgotten and turned out the last light before going to bed, I have found myself in immediate trouble.

    It’s funny how we sometimes find ourselves becoming experts in certain subjects, subjects in which we have had no interest in the past. Five months ago I had never heard of labyrinthitis; today, I can quote you most of the available research. Today, I can also admit that this has been a pretty horrible experience, no matter how I have tried to color it.

    I’ve also learned that I have let so many people down at times. I can’t count the times that I have heard that someone was suffering from an “inner ear” problem and never even acknowledged it. It sounds so normal, and I just had no idea that those people needed help!

    Ric and I have been able to manage because we live alone. Had we had children at home when this happened, I’m not sure how we would have made things work. Had we had small children at home, we would simply have had to hire live in help. There is no way that I could have chased a toddler, and there is certainly no way that I would have been able to pick up a baby and care for it.

    Thankfully, none of that was the case, and we are on the road to recovery here on Elm Street. I go to Baltimore in a couple of weeks to get the expert opinion of doctors at Johns Hopkins. Hopefully, they will be able to tell me how to prevent future occurrences, and I can rejoin the real world once again!

    About Fredda Jones

    Fredda Davis Jones was raised “in the country” in Comanche County and learned very early that creativity and innovation are traits that can flourish even in small-town Texas and that with enough effort, indeed nothing is impossible, including being married to the same man for over 40 years! Rickey and Fredda have 2 children, 5 grandchildren, and a crazy life that includes sitting in the bleachers several times a week. The rest of her time is spent creating great content for texansunited.com and marketing small-town Texas.
    This entry was posted in Health & Beauty - Looking & Feeling Our Very Best!, Just Texas! Presenting Bloggers From Texansunited.com, Staying Healthy and tagged , , , , , , , , . Bookmark the permalink.

    5 Responses to Coping With Permanent Labyrinthitis, 5 Months

    1. Noelle Conwah says:

      Fredda,I am so happy to read that you are improving,I think and pray for you daily,as my grandmother suffered with disease and I remember how hard it was on her,and back then they really didnt know much about it,but she never got to go to church or out in public the last five years of her life.The prayers for you and yours will continue,so glad to know you are seeing some improvement and want to thank you for posting these updates,there are so many people out there that might need to know how to deal with this illness,you are one strong lady and I have never personally met you but my husband leland thinks the world of Ricky,so prayers are still going up,god bless you

      • Fredda Jones Fredda Jones says:

        You are so sweet to tell me this, and I appreciate the prayer more than you know. I really am finally seeing progess that I can mark as I try to beat that year Dr. Owens told me it would take. We go to Johns Hopkins soon, and hopefully someone will know what I can do to keep anything like this from happening again. Hugs! Fredda

    2. Ted Masters says:

      The best of luck at Johns Hopkins, I hope you receive some good news that will speed your
      healing process. Love and prayers, Lavoy

    3. Nancy Trotter says:

      We don’t realize how precious our health is until we lose it Hope hope you will find further help at John Hopkins
      nancy Trotter

    4. Jean Martin says:

      Fredda, Comanche, Texas needs to set aside one day of the year to commemorate Fredda Jones.
      You are a blessing to many. I’m so glad you have that wonderful husband you write about. May the good Lord shower the two of you with many blessings.
      Jean Martin
      Houston, TX

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