Just realised that I seem to have tinnitus, you know where you hear constant noise in your ears, it is not a deafening noise, it is a strange soundless ringing noise.
Became aware of it on Friday night, before that I have never noticed, so Friday it was strange that when the music stopped I was still getting the sensation of sound in my ears.
Took me a few minutes before I realised that what I was hearing was in my ears not sound coming from outside going into my ears.
Think if this had happened before getting the MS diagnosis I would have been devasted, I am really upset, but not devasted somehow it does not surprise me.
MS seems to affect every part of the body so why not the ears too, I deal with it like I do the pain, the sensations of burning, tingling, electric shocks, pins/knives, the spasms and the cramps by keep reminding myself this is the MS.
These are the nerves sending out mixed signals, the signals are all confused and malformed.
It does not make it go away, if only it could, but it does make it more bearable to think this when I have a violent pain travelling around my body and it does not have the power to affect my mind as well as my body.
If I thought that what I was experiencing was real I would be very upset and worried, now when it happens I know it is what this disease does.
This extremely shitty disease that takes so much away: mobility, being able to work, being able to do things with your hands.
It changes the shape of the body and the sensitivity, skin becomes super sensitive and impossible to touch.
The whole body is too sensitive to touch and at that same time has no sensitivity whatsoever, hands do not transmit any information.
Everything feels like sandpaper on the skin even the softest of touches or towels would still feel unbearably harsh.
Hands constantly drop things; hands can’t hold glasses anymore and can just manage to hold a light plastic beaker with handle with both hands.
Try not to spend any time speculating what new horrors lie in store for me, luckily I can not know what it will be until it happens.
I do find myself hoping that I can carry on communicating for as long as possible, if possible right to the end of my life.
Hate to be alive and not able to communicate at all, no words and no text and no sound and no vision.
Would not be able to do anything anymore.
I am crying now, tears pouring down my face, feels like tears that needed to be cried.
Obviously I needed to get rid of some pressure that had buildi up since Wednesday, when I knew about the Friday meeting.
Hope Richie and the dogs get back from the park soon, so I can ask Richie to clean my glasses which are difficult to see out of.
It is another lovely sunny and very warm day, now I have cried I feel so much better and can and will enjoy this beautiful day.
13 comments:
Oh Herrad,
Cry those tears that need to be spilt. I am crying along with you.
Your writing is so descriptive and truly explains a lot of how I feel too.
I hope Richie returns soon, not only to sort out your glasses but to hug you too.
My Mum, who we lost last year, was unable to communicate at all for quite some time before she died. I found it so hard and so sad. I could talk to her but there was nothing in return. And I never knew how she felt about it. It was heartbreaking.
Thank you for your suggestion about taking my tablets when I get to bed. I tried it last night. I was still a bit wobbly etc because I get like that when I'm tired and it's late, but it was a better way to do things! So thanks.
Thinking of you lots, my wonderful friend
Big hugs
Amelia XxXxX
Herrad...you show so much strength when you talk about MS. I do hope you'll be communicating forever and that won't be stolen from you too. I get temporary tinnitus myself, I noticed it started after I stopped taking all of my meds. It's weird though..I notice it only after I've been in the water, I hear the sound you'd hear when you listen to a sea shell, kind of like the sound of the ocean? It lasts about half an hour then I stop noticing it...very odd. I also get a bit of vertigo if I've been floating on a wavy lake, believe it or not! For hours after, and especially when I'm in bed the same night, I feel like I'm still on the waves! Freaked me out at first, but I read that these two are side effects of coming off one of the drugs I took for 4 years. Still weird though.
We are having a MAJOR heat wave, I thought about you last night because I couldn't turn the fan off all night, makes for bad sleeping doesn't it? Usually I can shut it off after a while because the mountain blows a cool breeze into the valley, but not last night, and surely not for the next 3 nights! But I PROMISED myself I wouldn't complain! :-)
I hope you're having a nice Sunday!
xxx
I so wish you had less to cry about, but I am glad it is such a release for you.
I am still drinking in those pictures.~Mary
Cry all you want to release it all Herrad, by no means should you feel bad for doing so. I think some ppl (like me) process difficult issues by crying, and as long as we get a grip and wipe our faces we can do this w/out it gaining control over us.
Hell, I'd cry too at what you were thinking writing about being trapped in the dark, etc w/no words! ((HUGS!)
I have tinnitus in my ears, have since I was a kid, and loud noise such as fans running loud music etc set it off more. But, it's livable!
Here is a quote from a wonderful post card my middle daughter mailed to me:
"To the mind that is still, the whole universe surrenders."-lao tzu
I hope you have a peaceful and content evening tonight.
Hi Herrad!
I have tinnitus as side effect. Everyday when I go to sleep I can hear it. Lately it's been during the whole day.
You will get used to it. We always do.
Loved all the pictures.
Love,
Ana
Hi Amelia,
Richie came home and sorted it all out for me and then he got me a nice lunch.
Sorry to hear about your mum, if she was concious I am sure she would have appreciated you being there with her.
Thinking about you lots too.
Hi Rain,
It was really hot here yesterday too, we had the fan on til 2 am then there was abit of breeze and we put the light out and slept.
I have heard of so many people with tinnitus that it makes me wonder why this happens.
Verigo on water I have never heard of before bet that is quite horrible poor you.
Hi Mary,
Have realised that it is important for me to release tension and not try to keep it inside and contained as that does no good just makes it all hurt more.
HiStephany,
Crying today certainly released the tension I was feel0ing since Friday.
The tinnitus is certainly liveable.
Wonder what causes it and why so malny people have it.
The evening has been very pleasant, hope your is too.
Have a good start to the week tomorrow.
.
Hi Ana,
Have been discoveing that alot of people have this.
'It is irritating if you focus on it.
I don't, hope it stays like that.
Thanks for coming by everyone, I do really appreciate you all visiting and commenting.
Have a good Monday.
Love,
Herrad
I'm so glad that you are able to cry and shed those tears. Releases chemicals, I'm told.
I've had tinnitus for many years. At first it seemed to be caused by exposure to loud sounds in the symphony. As a french horn player sitting in front of the trumpet or trombone sections, you are exposed to some very, VERY high decibels. I have custom-made ear protection now.
However, the tinnitus has certainly gotten worse since MS was diagnosed. There are times where the signals of sound traveling along the nerves is delayed such that what I hear is a horrible echo.
Other times, even the simplest and most neutral of sounds will create a feeling as though an anvil is being struck in my head.
But most of the time, it is a constant loud buzzing which sounds a bit like the rare summers when the cicadas are overpopulated.
I'm glad that yours is livable and I hope that it stays that way. Good thing that the crying has made you feel better and that you are able to communicate so clearly, effectively, and expertly with so many around the globe.
For this, I am truly thankful.
I cried so much last week that I could have filled a river. Mentally I was great but physically I felt awful. I too often have the skin sensitivity. It wakes me up at night along with the numbness.
Sometimes we have to cry before the beautiful day can begin.
Oooh Herrad i wish i was there to wipe your tears away and help you in some way.
I have a hearing impairment - called otto sclerocis and hear that noise, soemthing which Rain describes.
Hugs to you Herrad.
Hi Lisa,
Have discovered that tinnitus is very widespread, makes me curious why it happens.
Any ideas?
Hi Nadja,
Thanks for that lovely saying about crying.
After crying yesterday the day did seem brighter.
Hi Amrita,
Hugs to you too.
Thanks for coming by and leaving comments
.
Love,
Herrad
Crying is such a release, but it also shakes us up, I usually feel afterwards like I have been run over by a roller coaster. I hope that you felt the release, and felt much better afterwards. I loved the images you showed, Herrad.
Isn't tinnitus the most annoying. I lie in bed and think that I have left the TV on or that people are talking on the landing. I only notice it when it is really quiet... but it really bugs me then
Hope you are feeling better for your therapeutic tears.
Hugs
Nat
Hi Celeste Maia,
I did feel wiped out initally but later I did feel much more relaxed, like the crying had released alot of tension.
Hi Nat,
Tinnitus is awful, can't quite believe that I have it too now.
Once it starts thats it and you never lose it again.
Every now and then I think it has stopped , only to find it is still there and at that point it gets very much louder.
Horrible grrrrrrrr!
Thanks both of you for coming by and leaving a comment.
Love,
Herrad
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