could my artificial speaking aid cause RSI?

eilean1
eilean1 Member Posts: 12
edited 29. Nov 2008, 18:12 in Living with Arthritis archive
Three years ago I had my voicebox removed becaue of throat cancer and I speak with an effective, if rather monotonous, electro larynx (EL) . This particular make is a Servox. I will draw a veil over the whole business apart from saying that it totally changed my lifestyle as I am a freelance journalist and can no longer speak effectively on the phone for interviewing as it sounds very distorted unless face to face. But as the months have passed my acceptance and self confidnce have increased.
Then last month, October 6 to be exact, the day before I was going to America for the first time, arthritis struck for the first time ever. I was totally crippled down my right side, and on the left side most joints were affected, I won't go into the pain. Youi all know about it but I was totally unprepared. The very worst thing is that I hold the EL with my left hand. It has very sensitive buttton controls connecting with my throat imoulses--too complicated t explain, but that's how I modulate and operate and communicate. And feel part of the human race and can discuss more than the price of fish!
I always used the EL a lot. It is my lifelinre with normality if youu like, and my family and friends are used to it and accept it; I am used to the strange looks I get in shops where they don't know me.
But now, on, desperatelty worrying, days like today, I find it impossible to use the EL.
The arthritis--not properly diagnosed and I am on a cocktail of painkillers, frighteningly so. It is a double whammy. I can't speak until the strongest Nurofen kicks in and I can hold it in my hand. My morale --which has been so good in the dark days of the cancer operations etc etc--that is a different story which I wion't assail you with!--is not good. The tests I have had so far for the arthritis, blood tests, X-Rays, show absolutely nothing. And I am completely felled. Yesterday I made the drastic decision to take my old Clio to drive me to some shops for necessities for the dog and myself. Today the resulting agony shows it was a daft idea.
I live on my own; my three grown-up children who all live in their own homes, have been through so much with my throatxcancer that I am trying to keep has low key as I xcan but I feel that my life is disintegrating around me when this communicaton tool--a third hand--has been rendered useless.
I don't expect anyone on tbis site which I have thankfully discovered, to have an answer. But if there are any threads of help, thisses and thats, I'll be able to use some I know. I bought a terrible book from Amazon, Dummies' Guide to Arthritis , whixch I find useless and condescending in style and content. I was surprised that the UK consultant is that radio doctor whose name I forget--the book's at the other end of the house which seems like a marathon to me although itnis a small terraced house! but she should know better.
A hefty fee I should imagine for adding and tweaking little bits for people on this side of the pond.
There. I have vented and I am so sorry for ttaking up your time. I have been prescribed Solpadol and it quickly saps e the pain for an hour or so, but makes you feel detached and devoid of energy.
I will have to deal with things one at a time I know and you all sound as if you are doing that although some of you are as bewildered as I am about lack of correct diagnosis.
But the loss of my voic aid seems to inderline my helplessness. I am suffering from a bnit of poor-me or why-me , and a sense of uselessness. Panic at the idea of Christmas--I have six grandchildren. . By the way I am a woman, as I forgot to say, 68, a Scot living in East Anglia.. I feel totally out of my depth . I managed the cancer. This is sometibg else. Every bone in my body seems to be afected today. Hence this letter hoping for a few straws to clutch at.
Sorry to be so long-winded. I am not usually.
My regards and admiration to all of you.

Eilean

Comments

  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Dear Eilean

    I have sent you a private message.

    You are an example to us all. I am humbled after reading your posting.

    Love
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • lindalegs
    lindalegs Member Posts: 5,393
    edited 30. Nov -1, 00:00
    Hi Eilean,

    Welcome to the forum.

    You have been through such alot already and now have arthritis to deal with too - why is it there always seems to be something else to knock you when you're down :(

    On the positive side, in my experience, arthritis does come and go and with the aid of medication it won't always be as bad as it is now. :) It sounds to me as though you're having a flare-up but you will find that it will settle down. I have only one elbow that works now as the other fused many years ago and have adapted to live with it but during my flares I can't use my other mobile one to feed myself, blow my nose or get it anywhere near my face as the pain is soooooo intense. :( But it always gets back to a manageable joint once again.

    Don't despair and try not to worry about Christmas yet as I'm sure everyone will understand if you not very well :)

    Luv Legs :D
    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • fayrose
    fayrose Member Posts: 241
    edited 30. Nov -1, 00:00
    Eilean, going at this from a slightly different angle, have you thought about trying the valve and 'hands free' device to deal with your prosthetic voice problems?
    My husband had this operation some 8 years ago, and is still working, has to use the phone frequently, but can only manage now he's gone on to that system. He was using the Provox gadget for some time prior to this.

    As for use of the machine causing RSA, I don't know, but as a rheumatoid sufferer (also working and using the phone a lot) I know that I do get serious pain in my elbow from time to time.

    I hope you get some useful advice and help soon, you are one tough and brave lady. :wink:

    Fay x
  • frogmorton
    frogmorton Member Posts: 29,332
    edited 30. Nov -1, 00:00
    Hi Eilean
    And welcome to the site from me too.
    Well I don't know where to start apart to say I am so sorry that you are suffering this way - athritis is a bit evil isn't it?
    We all understand the pain of the time you are going through, the fear the anxiety and the unmitigating pain while 'they' try (we hope) to diagnose us and hopfully give us the lifeline of some halfway decent meds.
    Reading your post was not hard for me - it was well-written and thought out and so very clear to me what a HUGE extra bit the arthritis has taken from you. :(
    The hardest bit was being able to see it because I was snivelling(ignore me I have PMT :wink: ).
    All I can say is it should not always be this bad - as bad as it is right NOW! Meds WILL help and you will get your voice back.
    In the mean time we are here for you as you will be for us. Keep being strong :)
    Take care
    Toni xx
  • eilean1
    eilean1 Member Posts: 12
    edited 30. Nov -1, 00:00
    Thank you Fay. Unfortunately the surgery was such that it was impossible for me to have a prosthetic valve which was what I had been hoping for. I have had some charming letters from people to take my mind off the stooning. (Good Scotish word that meaning throbbing)


    eilean
  • fayrose
    fayrose Member Posts: 241
    edited 30. Nov -1, 00:00
    I'm sorry about that Eilean. Very best wishes to you from me and my husband, who understands and sympathises very much.

    Fay x
  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
    Hi Eileen,

    welcome & sorry at the same time that you need to joing us!

    I would really recommend that you have a 'chat' with someone from the Arthritis Care helplines. I realise that phoning them would be impossible, but they do accept emails ( to helplines@arthritiscare.org.uk) and would understand your need to contact them in that way.

    They have a wealth of contact information about different organisations and help & support that is out there for people with arthritis combined with other conditions (we rarely 'just' have arthur in our lives!)

    I hope that you find a way round your current problems. If you need a rant then there is always someone on here to 'listen' and offer a word or two of support.

    What others have said before is very true - just because today feels like the end of the world it doesn't mean that tomorrow has to feel that way. you wil surrely have good days and bad days - with treatment hopefully the good will outweigh the bad.

    best wishes (((((((((((((((())))))))))))))))))))))))))