Feeling useless today, anyone else?

[kerrtelli]

I was reading through the posts and noticed that some people with ms do not have both cognitive issue and walking problems.  I have both and am wondering if that means I have lesions in both the brain and spine.  I am waiting on the results of the MRI's from last week.

My cognitive issues are so bad that I am forgetting things that people have said to me.
I am a teacher and my job has been cut down to part time.  I teach music and have to run the music for the mass each Friday.  This has proven to be a problem lately.  I have never had issues with performance but since this has all begun, I cannot get through a mass without a mistake.

Lst Saturday I had to run the graduation and in church there are intentions read.  After the intention iwas to sing a line from a song and everyone repeats.  The kid said the line that I was supposed to lead the congregation in singing and I completely forgot what he said 5 seconds before.  Not only did I get the death look from th principal but it was a not so good mark on my reliability.  The pastor said I was making hm nervous after the graduation.  I don't think he meant my health.  

Kindergarten graduation yesterday went okay but again I got scolded for the music being too loud.  My hearing has been affected and in crowds I cannot hear things properly.  If someone is talking to me in a crowd I cannot focus on what they are saying.  I see their mouths moving but I can't hear them.  Really weird.

Yikes.  I was always a little scattered but lately I am just plain useless.
I have to say that that is how I feel sometimes not that I PROBABLY. Have MS.  Just plain useless!

I cant make any definite plans to do anything because I don't know if I'll be able to walk well from one day to the next.
I feel like i am in a bubble.  Everyone looks at me and says I look great, which isn't the truth.  I feel like saying I don't feel great.  My husband just wants me to rest all of the time.  I told him this morning that if all I do is rest when i am not feeling well, which is every day, I will just deteriorate.

The one positive I have found that actually makes me feel good is swimming.
I am blessed with a pool in my yard and last week when it was hot I was out there every day swimming around.
I think that is going to be my exercise.  Water aerobics.

One mre thing, does anyone ever have pain in their tail bone from sitting too long.
A few months ago, right before all of the symptoms began, I took a bad fall and bruised my tail bone.  Nw when sitting tool long it aches slightly.  Any tips, experiences, advice?

I am not at school today because it is field day and it was decided that I could not lead a team.
Whatever.  That is why I am home and stalking this site.

Sorry this is so long.  I am sitting here alone and thinking.  Bad idea!
I dread having to go to the supermarket.  I look like an invalid.

Thanks,
Kerri

[doublevision1]

Re: your question:

<<>>

I have this problem too after cracking my tailbone upon slipping down the basement stairs.  Worst pain ever!  This was several years ago, 2004 maybe, and it causes me trouble to this day.  Initially after the injury, I took Tylenol 3 and some prescription anti-inflammitory, just so it was bearable.  My GP warned me I might always have some pain from this, and he was right, so far.  I especially have trouble on overseas flights, having to sit for so long without much room to shift around, so I try to get up and move every once in a while.  Of course I should do this anyway for circulation, but it helps my sore butt as well.

The best advice I can offer is not to sit too long, and to stand up or walk around a bit every half hour or so, and don't wait for it to start hurting before you do so.  Oh, and you can get special seat cushions at medical supply places, some pharmacies,and maybe even Wal-Mart, called coccyx or 'donut' cusions or sometimes even 'invalid' cushions.  These allow for your tailbone to be suspended so that there is less pressure on it.

[kerrtelli]

Thanks for your feedback.  I think it makes sense that extra activity around me affects my thinking for sure.  Now that you mention it, I can pinpoint the really noticeable mostly at work that i am just dopey.

I am trying to get used to the aid.  I have a cane for outside, walker for home.
It seems that I much more trouble with the thinking and walking when i am out in the real world and not a "safe" place.  Its almost like I am overwhelmed by the space.

Anyway, its been a a long day.  Good night.

[Sailorsong]

I have both walking issues and cognitive issues all of the time, I have been using a cane for over 3 years now and just got a brace for my right foot a week or so ago but have been dealing with this for over 20 years. When things first started going down hill I did feel useless and disgusted with myself for not being able to do things I had in the past without any trouble.

But over these many years I have learn to just laugh at myself when I do something silly like putting the milk in the cupboard and the like because my brain just does not think clearly. I also have learned to get all of the help I can ( cane, brace, disability placard) as the extra energy needed to walk increases the amount of cognitive problems I am going through. For instance when shopping if I am getting tired it becomes harder to remember what I am shopping for so I will find a place to sit down and rest for a while before finishing my shopping.

Just this Monday I went through a grueling 5.5 hours for a Neuro Psych evaluation and learned a lot about how my memory suffers due to dealing with things around me. My brain just can't handle a lot of input at the same time. This is probably why your couldn't remember the word you were suppose to sing at church.

Dennis

[Sumanadevii]

I can tell you how  Baclofen works for me.  It knocks me out.  I tried even just a half..still too much.  I only take it at bedtime.  It works well for me.  It helps with the stiffness and spasms.

[figuerpa]

I think Mary pretty much summed it all up.

We all get there sometimes. I get real bad cognitive issues somtimes and have to stay away from here because I can't think straight enough to be able to answer anyone in a way that makes sense. I can't tell you the numerous amounts of posts that I have deleted before posting because I felt they made no sense after the time I put in writing them.

I don't believe I have had my leg go crazy while I was having the cognitive issues but then I can't remember what I had for breakfast today so who knows lol.

I wish you the best and try to take a deep breath and remind yourself to take this one day at a time, it will all come together for you.

Good luck,
Paula

[kerrtelli]

Thanks everyone.  Since this morning, the MS Specialist called and said there were no lesions on my spine.  That's a good thing he said.  He also order Baclofen for me to start taking for my leg and body spasms.  O see him again on July 11.

I am very grateful for this forum because if I ranted like I did this morning to the doctor he would just chalk me up as a nut case.

I'll post how the Baclofen works.

[jen673]

I think Mary is a good dose of inspiration!  Hang on to what she said - I think it will be helpful to you.  

On another note, you have been helpful to me!  I have just recently shockingly been diagnosed with MS and never thought that some hearing problems that I've had many years could be associated with MS.  Eye opening for me!  

I have many lesions on my brain and spine.  I am not having any balance or mobility issues.  I do have numbness, tingling, pain in my feet at times and cognitive issues I believe.  Before diagnosed I didn't think I had any cognitive issues but after reading post after post, I realize I probably do.  Not sure if this will help you but just a little about myself.

I hope that you will be revived from others just as we are from you!

Jeny

[twopack]

Morning Kerri.  It sounds like things are piling up on you.  That happens from time to time, especially on days like this when you are waiting to hear about test results.

First off, let me play devil's advocate for a minute.  What's up with this pastor?  I know this is an important day for the kids and their parents but really now!  His biggest concern is how nervous YOU make HIM?  I guess it's easier to have great compassion for the far away people of the world than it is to embrace one community member standing at your side.

I'm not sure if the charitable status of a church exempts it from ADA guidelines but how about being charitable to an employee because it is the right thing to do?  Doesn't he know you have been having health issues?  If he worries about your performance, why not talk to you BEFORE the event and ask what could be done to make this easier (and less stressful) for YOU and him and EVERYBODY.  Perhaps the counselor needs a lesson in communication.

I'm well aware that parish priests handle a steady stream of problems all day long and work piles on as their numbers decrease.  Hey guy, welcome to the working world.  Every employer out there these days demands more work for less compensation from a reduced work force.  Designate someone to show compassion if you can't or won't do it yourself.

I also know that some priests expect to be treated like God himself.  Think neuros here, it's the same way with some of them!  News flash people, most times God doesn't get treated very well Himself.  The difference is God is as interested in being present to us through our struggles as he is in being worshiped or having servants.  At least that's my take on it.  

I apologize if this seems like a church attack.  This isn't about a religion or your personal faith.  I do admit to some past personal hurts connected to formal religion (who would have guessed, right) but really, I would be saying the same thing about the supervisor or employer of any forum member.  It just seems it would apply even more in this situation.  There must be some perk to make up for the lower than normal wage in private education.

If you're inclined to offer pastor your apologies, do so with an invitation for suggestions on how this can be make more workable and easier for both of you.  Then, you might also suggest he "offer up" his nervousness for the sick who live in environments and bodies they have little control of every single day.  [Or maybe he needs to see a neuro.  We've been told nervousness can give us MS like symptoms:) ]  Okay, it's probably not best to say any of that but (if the timing is right) you could mention to him that you are a little nervous too - about your health, your job, your relationship with co-workers, etc.  But I'd better leave this alone now.

So, a few suggestions very quickly (because I have run myself out of time).

Cognitive challenges happen.  Sadly, we have to adjust our lives to accommodate them.  Notes and lists become essential and help immensely if you keep them organized (a mixed challenge I'm sure for a combo teacher and creative artist).  In this specific instance, insist everyone who contributes to the mass gets their part to you in WRITTEN form early enough that you can order it in front of you BEFORE you start the prelude.  

Tell your neuro about this and he will probably be willing to write a speech therapy consult for you.  They work with defining cognitive loss and can help you develop memory tools to improve daily function.

For back pain anywhere (but especially the lower spine) try sitting on an exercise ball at your desk or when watching TV or anytime you would normally use a chair.  It should be large enough to allow you to sit with hips and knees at close to 90 degree angles.  If your balance is poor, make sure you have something to hold onto to help keep you on top.  Just sit and let you body work on balance.  It helps pain because your weight is constantly shifting from one spot to another and not constantly concentrated in one spot as it is in a chair.

In the car I make it possible to shift position to help relieve pain by sitting on a partially filled inflatable disc.  It was sold as a device to stand on to improve balance.  A physical therapist had me use one and it helped for that use too but I never improved enough to give up hand support on that one.  Of course, any improvement (or even maintenance) is worth it.

Another suggestion is a practice like Mindful Meditation or Progressive Relaxation exercises. There are reasonably priced CDs available to lead you through so you don't even have to leave home. You can do an internet search to find info (or use the Search this Community feature found toward the top right of this page because I know it has been discussed here before).  

Life stress that overwhelms you can manifest as deterioration in cognitive skills, especially memory.  Learning to relax mind and body can be very beneficial and once you clear out built up stress hormones even once, the benefits last long after the meditation / relaxation exercise is over.

Prayer and religious meditations can do this as well but sometimes they tend to focus your mind back on the stressors you are trying to recover from.  Only you can judge that.  For me, conscious relaxation has been easier when I choose a less familiar route.  And as time rolls on so does our taste.  I used to always have recorded music or the radio playing.  I switched to instrumentals when lyrics distracted me from the place my focus needed to be.  Now I need silence to accomplish most mental tasks and end up plastered on the ceiling if the phone rings.

I know it can be hard to trust and relax your mind with an unfamiliar voice that proposes to offer new ideas, approaches or information.  And we absolutely should be cautions about the thoughts we allow our minds to entertain.  (Isn't it negative thoughts that so often get us stressed to begin with!)  Here's a hint that works for me.  First, I listen through the CD in an entirely alert and listening state.  I don't participate or follow any directions.  The first go through evaluates the media, source and content to be sure I can give it my personal stamp of approval.  After that the technique is more effective because I can allow myself full participation.  I renew any such media, even if I am familiar with the source.  It's a sad world out there these days (besides, as you can see, my religious roots still hold firm.)

Gotta go.  Geeze, it isn't even morning any more and you've probably gotten good advice from others who are faster on the draw.  

Hang in there compadre.  In the end, MS does make day to day planning a slippery slope to juggle on.  I think it's the most universal complaint.

Mary

[cainer]

hugs!!    well its raining here lol not that it matters!! but yes!  i am useless- but lets think positive,,,  tomorrow will be better!!

[Sparkysarah]

Hi Kerri

I am not sure if I have said hello before so if not then here is a big hi winging its way over from England. I love music and enjoy singing and can really tap into some of what you were saying. I sing in my church choie and over a year ago my hearing was affected by relapse and i could not hear so well if I was in tune as one side of my hearing was out of sorts. This really knocked my  confidence and I stopped having singing lessons as I did not want to sing badly. Singing is for me a real passion but when I am low or in relapse i know it takes so much of my energy that it is one thing I have accepted that even though it lifts me, i do not have the energy to give of myself. I am not sure how I would cope in your situation and just can say that this must be so very hard.

Right now I  have been in relapse and am feeling lower than I have felt for a while. Most people who know me on the forum will know the bright cheerful happy person who normally is encouraging and puts a positive take on situations. Well we all have our down times and being unwell and feeling so fatigued has taken the wind out of my sails at present. It may be that I have a UTI which may be a major influence without me knowing so waiting for results of urine test on friday and if so hopefully antibiotics will sort me out and prevent me having to take the prescirption for steroids that my neuro has given me today. We will wait and see. So in answer to your question yes I am having one of thoese days you mention.

Hope things improve for you soon and your gift of singing and playing the piano comes back up to strength soon. I can feel your passion for music.

Love Sarah x

[Sumanadevii]

Kerri, there are days I just feel like one big lump with living cells that can't do a dang thing.  I sure get what you are saying.

I think you probably do have lesions both places because most with MS do.  For sure mobility plays a part in spinal lesions but I think brain lesions can do the same.

I hope you begin to feel better.  Summer break is here...Maybe a nice rest will help you to return next school year refreshed.

Sumana