Saturday, December 12, 2009

Loud Sounds and Chaos Equal Pain and Disability in this Multiple Sclerosis Patient

I love my nephews and I love my brother and sister-in-law. In fact, I am thrilled that I was able to spend some quality time with them this week after the previously-mentioned funeral. I don't get to see my brother's family but in a blue moon of blue moons (it seems).

I have had fun...but I am beyond exhausted. Honestly, I wonder how exactly folks with MS deal with having active and energetic families.

One of the things which really disturbed me the most during the first years after diagnosis was my concern and fear as to how I could ever have my own family. I remember when I couldn't use my hands (due to yet-to-be diagnosed RA) and thought that there was absolutely NO WAY I could ever care for a baby since I couldn't even care for myself. I have also had times where I couldn't use my left arm for anything which required weightbearing or fine coordination.

In my personal relationship, we have discussed over the years having children and both of us have had a desire to do so....eventually. Well this past spring, I discussed this possibility with my rheumatologist who gave me directions as to how I must be off of methotrexate for at least 3 months before even trying. Just to see how this would affect me, I stopped methotrexate for a measly two weeks before the RA pain started to come racing back.

The pain I had as the RA truly flared up at its greatest (still undiagnosed at the time) was so excruciating that Rob almost took me to the ER in the middle of the night once because the pain was so tremendous and frightened us both. Neither of us want to get back to that point again....EVER.

But one thing which I had not experienced so greatly during my previous visits here was just how sound has affected my MS body. It's been 2 years since I last visited and during these 2 years, my MS has progressed and relapsed to the point that my doctors and I are using Rituxan to treat both the RA and MS.

I know that I am sound-sensitive just as I am heat-sensitive. At home, I keep the TV volume low (if it is on at all) and avoid loud situations. I enjoy my quiet time, but most importantly, I NEED my quiet time.

Quiet has been a serious deficit this week with four boys in this house - aged 2, 6, 8, and 37. This is a family which loves its TV, DVDs, video games, and chaos. I like some of this stuff too, but in moderation, not in a constant over-load.

Today, my poor MS body had had enough. The input level was extreme as the sound reverberated around in my head. Sounds tend to echo and persist as the auditory nerves are sluggish for me. Also, sounds tend to send waves of pain throughout my body. The most simple way to explain this (to the boys) might be to describe the sensation which happens when you hit your "funny bone." I get that all over.

Also, as my nerves reach overload, I lose function. Not just mental abilities but physical abilities too. Today, my body had had ENOUGH!!

As I was trying to type a message to a friend, I saw my right hand in dramatic tremors. I've had very small, almost not-noticeable tremors in my right hand and right foot before. Basically, only me or an examining doctor would witness them previously. This time, my hand tremor resembled ones which you might notice in Parkinson's patients.

I had already been having a horrible time with spasticity and coordination walking on-and-off during these recent days. It's not a relapse going on, but my body simply reacting to the various situations. I can tell the difference because rest helps to better the deficiencies, as does extra baclofen and small doses of xanax.

Earlier today, my Mom (who is also here visiting) spent some time rubbing the spastic knots in my calves. It was extremely painful but did help to alleviate some of the coordination issues arising from muscles too tied up to work properly. Before that the pain from the noise and spasticity, the frustration of coordination issues including tremors, and the inability to think and speak straight caused me to breakdown crying.

It hurt so much in so many ways. My brother and sister-in-law don't know how to handle my crying, apparently. During previous visits, I've cried a bit because I miss out on so much of my nephews' lives and that saddens me. I've cried because my brother has been rude and stern before towards me. I've cried because I have depression and deal with that frequently.

Today I cried because I was in excruciating pain and frustrated by what having this disease has done to me. I hate it!! I hate MS!! I feel like I miss out on so much life because of it...and I'm highly functioning at that.

Although, the local Walmart store had the better of me the other day. I was having trouble walking straight after making too many circles around different areas. I was going slow and drifting to the left as my legs were like heavy concrete slabs. Drop me in a lake and I would have sunk to the bottom.

As I was looking for the benches in front of the pharmacy (where my sister-in-law works), a man in a shopping cart scooter made a comment about stopping so that I wouldn't wander into his cart as I was "drifting and daydreaming about." Thankfully, I was too tired to even truly respond because I'm sure that - "so sorry to be in your way, but I have MS and really should have grabbed one of those carts for myself on the way in the store. I'm not daydreaming; I'm trying not to fall down with a leg which is dragging nor walk into any of the displays. So please pardon me while I painstakingly and slowly make my way to those benches over there." - probably wouldn't have gone over too well.

Back to the crying this afternoon. Instead of asking me what was wrong, my sister-in-law called for the boys to go upstairs and she kept them there. That's often what happens if I cry, I'm left in isolation by my brother or his family. They don't know how to deal with it. Whether than allowing for a learning moment for both the young ones and the adults, it's "let's withdraw ourselves and punish Lisa for showing emotion, no matter what the reason for it is. Let's not ask what is wrong (which might create an opportunity to fix it), let's just all withdraw and disappear. If she cries, let's abandon her."

Today is not the first time, I've been suddenly 'abandoned' after showing emotion in their house before. Other times I would have said to the boys (if asked), "I just love you so much and feel sad that I am not here to see you often." Today I would have said, "I have this disease which makes me hurt when there is alot of sound and noise, or which makes my body not work right all of the time when I walk or use my hands."

What a better opportunity to teach my nephews (and their parents) some of the things which are different for me than for other people. My sister-in-law is a pharmacist so she should be exposed to the pharmacological aspects of the disease. My brother is a licensed therapist so he should be aware of the emotional and physical aspects of the disease.

But as you know first hand, even our doctors don't truly understand everything there is to know about living with this disease. The nurses and physical therapists who specialize in MS probably understand the greatest. But we know that others with MS who have been at similar disability levels to ourselves probably understand the greatest.

So here's my question to readers - do you also experience extreme pain and loss of function from something as simple as an overload (or chaos) of auditory and visual input? Should we start thinking of this as an official cause for a pseudoexacerbation? What do you think? I'd like to hear from you.

19 comments:

  1. When I was first diagnosed I started to piece together what places made my problems flare. Warehouse stores, because the echos magnified every sound so even if it was relatively quiet I'd hear each sound repeated. Our big warehouse, Sam's, had a bakery, so add smells to the noise and then ROWS AND ROWS of visual stimulation. No white space.

    Of course, then our Walmart added a bakery and it was just as bad after that. Perhaps in the future there will be mini - sensory deprivation devices which we can switch on when we're in neural overload at Dave and Buster's.

    I think maybe that's what your sister in law was trying to do, give you a little quiet space.

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  2. Lisa, I'm sorry you're going through this rough patch. I hope it abates soon.

    As for your brother and SIL, I think you should send them a copy of this entry. Clearly they are not attuned with how they are coming across, and how you, and for that matter, their children, are being affected by their actions (or lack thereof).

    I'll be thinking of you. All my best.

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  3. Lisa, here is a partial list of what our MS symptoms must seem like to others: senility, psychosis, stroke, palsy, alcoholism, deafness, agoraphobia, Parkinson’s, bipolar, Alzheimers, immaturity, antisocial, …. The list, as you know is long. As for noise sensitivity, I didn’t really know I had it until I realized that I never listened to the radio or CDs anymore, that my house compared to other houses was absolutely quiet. It seems I was avoiding sound/noise so reflexively that I didn’t realize it until, like you, I went somewhere “normal.” In my case, it brings on a severe restlessness that can turn into anger or irritability. I often don’t even know that sound is affecting me adversely until it goes away and my body instantly sighs deeply with relief. But I am back to my original sentence when I say that symptoms afflicting MSers are so varied that I frankly don’t know, with the exception of a few markers, like coordination and loss of mobility, how one can choose definitive MS markers among the many listed above. Then there is my theory that MS accelerates aging, bringing with that all the associated symptomology. So is it MS or aging? Tough disease, we’ve got. It even defies description.
    Judy

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  4. Lisa,

    I, too, am sensitive to loud sounds and noises, though not to the degree you are. And I abhor chaos. I was like this before MS so am not sure what, if any, relation, they have. We were at a Christmas dinner and dance last night and though I wanted to stay for a bit of the dance as I know one of the members of the band, I just didn't feel like staying for the noise and chaos that would ensue.

    S.

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  5. Hi Lisa, You have been in my thoughts and prayers, and we were thinking about you at the chat.

    YES! I am now extremely sensitive to sounds. I bought noise cancelling head phones and sometimes even need to use ear plugs with the headphones. I can no longer multitask, and my brain can no longer process multiple things happening at one time. Chaos is a good word; I use "too much stimulation" to explain it, also. I'm exhausted after 5 minutes in a Home Depot.

    I intentionally choose to avoid crowds, noisy situations, parties; however, that is tough to do at this time of year. I am so glad to hear that I am not alone in this. THANK YOU for making me feel better at a time when I should be making YOU feel better.

    Joan

    Joan

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  6. Lisa,

    My answer to your question is YES. Thank you for writing about this. I felt alone and embarrassed to admit I experience extreme pain, temporary loss of function in my legs, and extreme fatigue during an overload of auditory and visual input. I notice it often happens when I am away from my home environment.

    The last time it happened is when I went home for Thanksgiving. I cursed living with MS during my time home because it interfered with me trying to enjoy my family (parents, siblings, nieces, and nephews) after many years of not spending Thanksgiving with them.

    I hope you feel better soon.

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  7. Funny that you should ask: my good friend (who has lupus) and I were just at another friend's cookie swap and we both kinda just sat at the table zoning out as some of the teenagers were chattering and laughing and rough-housing and some of the moms were joining into the fast-paced conversation. My friend has mentioned that her lupus makes her spacey in loud situations, and I pretty much prefer peace and quiet in general, so go figure. I have been in restaurants when I've been tired and I have the strange sensation (and I'm gonna go out on a limb to admit this) like when stoned where each background sound is a distinct noise and I can switch back and forth, but not concentrate on the conversation in front of me---ALL of the noise is getting my attention at different times. Very disconcerting.

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  8. Lisa I am so very sorry you are having to deal with. The first time I started having issues with sensory and visual overload was a year ago, and to be honest, I thought I was losing my mind. Now, though mine isn't as severe as yours, I find I am totally intolerant to loud noises in particular. If many people are talking at the same time in the room, I get completely overwhelmed and stare blankly because nothing makes sense. I've actually bolted out the backdoor of family functions, into the snow, in tears desperate for silence.

    You are not alone, but I pray you find some relief.

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  9. Wow.. . .I am so glad someone brought this issue up. I've thought perhaps sound and chaos were a personal punishment designed for me. Especially since most often, others around me are oblivious to it.

    My family does try to limit the volume of sound in our house. But Volume is not always the instigator. For me a single source of sound (except trumpets) can be positive. However, I am unable to untangle multiple sources. When the television is on in the house, the phone rings and someone is carrying on a conversation, and another person asks a question - I am gone, unable to filter the sounds. I find that mentally I escape, vacate, or more often fall asleep.

    I am drained mentally and physically and pretty much shot for the day.

    I think I do have some hearing loss because I ask folks to repeat alot - but then again, It could be because I mentally insulate myself from sound. Fortunately for me I now have a room that I can go to and shut out everything else. It has helped me cope.

    And then - beyond weird - some days I like to just close the door to my room and crank up the music. . . and it feels so good - for a short while.

    I can't even sew with other noise in the room. I really - absolutely no multitasking.

    ON the up side, I am having a really wonderful day. Thank you for all you do Lisa.

    And this is my very, very first post ever! Yea Me!!

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  10. Hi guys :) I have a problem with noise and such--if I have to put up with yelling and screaming or music being too loud, it seriously decreases the quality of my day---I find sensory overload gives me headaches, fatigue, worsens tremors, and weakness

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  11. Hi -
    I'm the same with overload. When I was working, going to the lunch room would ruin the rest of the day for me - I'd be totally exhausted. What I do now is ramp up and act hyper during the times I am out and then crash for a few days when I get home. Feel very bipolar! Am looking forward to days of company and chatting over Christmas which fills me with fear and trepidation. I do so hate pain, and the trigeminal stuff is so awful. And the weariness...
    But I avoid big stores now - can't stand the stimulation!

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  12. Hi Lisa

    I am not able to cope with noise (multiple activities going on) and 'din' (in shopping centres, with crowds, cafes' coffee machines et al). I just shut down and can not organise my thoughts. It also affects my movements. When it first ever started happening I wondered if it was possible to become autistic!

    Loud noises 'reverbrate' through me an often trigger a shudder running through my body - something akin to the fingernails down the blackboard sensation.

    It make me inclined to avoid social situations more and more, which is equally distressing - thanks for sharing and I think I'll take up Webster's suggestion too and send it to family members that behave in similar fashion to what you describe with yours.

    ta again

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  13. I'm completely undiagnosed, so I don't know that my chiming in here is of any use. But yes, I have similar problems. I get overwhelmed when I'm in crowded or noisy places or when there's too much activity going on around me (i.e. people moving a lot).

    It's hard because I've got a 5-year-old kid, and I'm limited in how much time I can spend around her because I just get exhausted and overloaded and my brain shuts off and I have to sleep. I can't tell you how awful a mom I feel like to say this much less have it be true. :-(

    But at least I have a very supportive husband (extended family not quite as much) who's a great dad.

    Lisa, I'm so sorry that your family is so unsupportive and is unwilling to be more responsive to your needs. It's not like you're choosing to have these health problems!!

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  14. I have the same experience when in a crowded, noisy situation...it's like my nervous system just shuts down. Walking/standing become more difficult as do distinguishing what people are saying to me...it's just too much. My doctor tells me I need to get out more (ha, ha...I can't drive a car or walk very far) and as I just explained, too much hubub causes my symptoms to flair and I just feel overwhelmed.

    I'm sorry your family is so afraid to be present for you in all of your wholeness. Thankfully you have this blog...a safe place to share your feelings with those of us who understand what you are going through and truly want to hear you.

    Not the same as family...but we are here for you Lisa...you are not alone.

    xoxo
    Laura

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  15. I have never experienced this problem, my partner DOES however. She DOES has several autoimmune diseases. I would guess it is not directly due to MS but some slip in the brain, OR all autoimmune conditions have a silver bullet---who knows? Our CNS is compromised...anything is possible. hang in.

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  16. Lisa,
    As I am looking through all of these comments again I am feeling understood by everyone who responded...this is is powerful healing...to know that I/We are not alone on this journey...Thanks YOU so much for providing this safe space where we can all exchange our experiences and feel heard and whole...despite our brokenness.
    xoxo
    Laura
    May today be a better day for all ov us.

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  17. Thank you so much everybody for your comments and helping to let me know that I am certainly not alone in this experience!!

    I would respond to each comment as I relate to every one of them in some way, but would probably take me about an hour to do so.

    It's snowing here in DC and is supposed to continue snowing through tomorrow morning. I can't see the front end of my car. The DCA/IAD airports closed yesterday with BWI following suit this morning. The metro (subway and buses) stopped running over 2 hours ago.

    This is what a friend of mine said on FB - "I've just been informed by the weatherman this "isn't just a snowstorm, it's a natural disaster!". What the hell, people? Just buy some extra toilet paper and read a good book."

    Now I'm off to go look at all the lovely picture and videos my friends in VA/DC have shared. Hope everybody else is enjoying their weekend. XOXO

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  18. I think that sensory overload can cause more MS symptoms, especially when we are tired. I have problems with light and sometimes sound too. Both can give me migraines.

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  19. This is my first foray into talking to another and your comment rung so true. In my experience sound ,voices any auditory stimulation particularly with visual and any other type of stimulation that is lurking to join the crew is unbearable.I get confused frustrated and need to lie down somewhere cool and quiet.

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