• Coping With Permanent Labyrinthitis, 6 Months


    Kicking The Cane Down The Road!

    medicinenet.com

    medicinenet.com

    I passed my six-month marker on the eleventh of this month, and it has truly been a long half  year, but the good news is that the worst seems to be behind me. I suppose the biggest thing is that I partially gave up my cane on the 11th. I actually do still need it, but I also do not want to let myself grow too dependent on it. So where am I today?

    1. I’m dizzy. I know you think that I have been dizzy all along, and I may have let you believe that because this has all been very hard to explain. The truth is that I have had to work like you can’t imagine to stay upright, but I really haven’t been all that dizzy (after the first month) until last week. I assume it is just another step in the process.

    Now, instead of walking on marshmallows, I seem to walking on a see-saw. If you can, imagine stepping on the end of the see-saw that is on the ground. Then, start slowly walking up it. You will feel the thing begin to lift under you and you will sway a bit. Then, as you reach the other side, the see-saw will suddenly go the other way. The trick is to anticipate that and ride it down….then turn around and do it all over again while  going the other way.

    Since there is not a violent splat when the see-saw hits the ground, I have a feeling that surfing would be a better analogy, but I don’t know anything about that. As I’ve said before, thank goodness I have very good balance!

    2. I’ve been walking on a cane for the past couple of months, and I think I have decided to give that up for normal walking. If I’m careful, I can manage fine without it. What I can’t do without it is look up while I walk…I can barely do that on the cane! I also find myself using my arms without it so you may see me walking and surfing at the same time, and I may decide to go back to it. For now, however, I am off of that darned cane!

    3. Having said that, I am also working very hard at walking a few miles as fast as I possibly can. At this point, there is no way I can do that without my cane. I actually still can’t cross streets, etc. without stopping, planting, looking up, and checking traffic. To walk that quickly, I have to stay focused on the ground. I can though lift my eyes some if I meet you face on so that is BIG progress.

    4. The nausea that has been gone for several months is back with the dizzy, but it is bearable where that that came at the first was not.

    5. I have driven the backroads four times now. I can do it, and I am positive that I am not a danger to anyone else, which has been my fear. It is not something that I like to do just yet; however, I am hoping that another month will find me ready to hit the road for some easy treks.

    6. I was in Baltimore a week or so ago just to see if doctors at Johns Hopkins agreed with the things I was told in Dallas. For the most part, they do. They do not believe that it was a virus that killed my vocal cord, and yes, had my doctors been on the ball it probably could have been saved. Of course, I can’t lay it all at the doctors’ doors. I should have been more aggressive about finding someone who believed me when I explained my symptoms.

    There are possibilities of what could have killed the balance center, and a virus is a good guess; however, they simply called it idomatic because it could have been one of several things. I can tell you that I would really encourage you to do some homework (or maybe I will blog on it one day). There are certain meds that can cause you to lose your balance center…but then you have to really have to weigh things out carefully. What has happened to me is pretty rare, and the “bad” meds often do good things so it is a toss up, I suppose.

    7. The falls are not completely over, but they are minimal now. I took a couple of nasty spills last week, but I was actually trying to do some yard work that was probably still a bit much. Also, it was really only last week that these new dizzy spells started, and I had not gotten my see-saw legs under me when I fell. Now, I know what to expect and can better balance against it.

    8. And everything that I have just told you are things that happen outside of our home. If you could see me in my own home or even in yours after I adjusted to it, I don’t think you would notice a big problem. I still do not understand it, but there is something about the horizon, even the “horizon” of a large building, that completely ruins my balance.

    ****************

    If you are suffering from the problems that come with a lost balance center, I hope you will understand that this is actually meant to be a very positive blog. I’ve been told by several doctors that the 1-year sentence I received might be a bit of a soft-soap and that this might actually be an 18-month journey. At six months, I think that I am way ahead of that.

    I will tell you, however, that I have pretty much decided that lots of this is forever. I hope so much that I am wrong, but I really have a feeling that I am always going to have these crazy “head spells.” I believe that I am just finally going to be able to stand up against them without spinning or falling. I don’t like it, but I do think I can do it so that is a very good thing.

    I’ve also heard from many that it is much easier to run than to walk with this condition. I haven’t quite had the nerve to try it, but I might in the near future. Of course, I hated running when I was well so I can’t imagine doing it now! :)

    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.

    3 Responses to Coping With Permanent Labyrinthitis, 6 Months

    1. Each time I see your posts on Facebook, that you have added something new to TexansUnited or I read something at your blog, I am impressed that you can still be creative while struggling with your Labyrinthitis. I hope your blog helps others bolster their own inner strength. I hope and pray that you will be much better soon, but until then, hopefully your sharing will help others. Thank you for your courage and your sharing. Marilyn*

      • Fredda Jones Fredda Jones says:

        Marilyn,the only blog I do not enjoy is the one on labyrinthitis, but when I was so sick, I could not find anyone that I could connect with personally and I was desperate to learn whether anyone ever survived this or not. :)

        Blogging about it has brought me several new friends who have labyrinthitis, and that has been great. I still have not located anyone whose condidion is permanent, but hopefully someone will connect one day.

        As to me, I really couldn’t do anything the first couple of months, and Stacy had to do it all. Since then, I’ve continued to make progress every day. Nancy and I just returned from what I consider a hard walk and I am collapsed as I write. LOL I do those on a cane and looking down, but it really is HUGE progress. Hope all is well with you!!

    2. harrell gilbreath says:

      Hi fredda don’t know how to help but I can do a prayer and a wish for the very best. Look forward to Texas united every week.

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