Communication problems with Chronic Fatigue Syndrome include loss of speech

A friend with severe Lyme Disease wrote to me about her physical communication problems and asked me for advice.
She knows I used to live with very severe Myalgic Encephalomyelitis. (My current doctor calls it Chronic Fatigue Syndrome. In this article, I also use the term CFS/ME).

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When my friend talked of her frustration at not being able to communicate, my first response, to be honest, was to cry.

Not very helpful, I know, but I too feel frustrated for her. I know how tough it is being stuck inside a body which can't talk.

I will write another article with tips for someone wanting to help the person with severe CFS/ME who has the communication problems.

In this article I give sympathy and tips for the person with CFS/ME or Lyme who experiences a loss of speech.

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Warning

On this website, I often provide alternative healing methods and aim to be uplifting.

However this is an article about the tough reality of living with severe Myalgic Encephalomyelitis, Chronic Fatigue Syndrome.

Advice for communication problems with severe Chronic Fatigue Syndrome

• Get things set up as much as possible so that you don't have to ask for help in order for your basic needs to be met
  
  Due to muscle fatigue in the fingers, I had minimal ability to write.
  Every time I could write down a sentence about an action I needed a carer to take during care time, I did so.
  After two years time, I had a comprehensive care routine.
  
  (If you are in a position to help someone with severe Myalgic Encephalomyelitis or Chronic Fatigue Syndrome to write a care routine, please help them to do so. It took me two years to write a care routine which I could have done in an hour if I had been able to write freely.)
  
  For over 10 years I had the same food menu.
  I had four meals a day. Each day of the week was different. But to use care time most effectively, I had the same meal three times a day and a simple breakfast in addition.
  The menu repeated weekly. This repetition allowed the shopping list to stay almost the same each week, which again saved speech-time and muscle-use-for-writing-time.
  
  Eating the same meal 3 times a day isn't ideal for one's health or enjoyment, but it allowed food to be cooked in bulk. It saved care-time and minimised the need for speech.
  
  I didn't ever have a week where I had only carers that I knew, so I still had to communicate to a new person at times, either by pointing at the care routine or managing to come out with some words. But with a menu for them to follow, I had an increased chance of getting enough to eat.

• Use a dictation device that types for you
  In my case the symptoms of CFS/ME meant I could speak much better when I was on my own and not having to deal with movement and speech from the other person.
  Some years after becoming bedbound, a carer gave me a dictaphone. From then on, my life changed.
  I now had a way to communicate - at least with myself!
  I was able to talk and send my words off to be typed up– I was lucky to have the finances at the time to do this.
  
  Later on I discovered a digital notetaker with software which types up what you dictate. Fantastic! This again changed my life. It is what I am using to write this article. (You still have to edit what you write but what a difference it makes.)
  (There is an example of a notetaker on the right hand side of this page, but please do your own research.)
  If you don't have muscle fatigue in your fingers you can of course make up a little for losing your speech by writing or typing up what you want to say!
  
  I also used a dictaphone to make a note of requests for help if you have someone who is willing to listen.
  It would take me several hours to make a 7 minute tape.
  
• Can you talk to an ansaphone?
  I could talk much better when I didn't have to allow for taking in someone else's words.
   
  Friends and family would allow me to ring twice to let them know it was me and then instead of answering the phone, allow me to leave an ansaphone message.
  These days there are more options.
  * Skype - free at time of writing - will allow the person with ME/CFS to leave a video message. Just turn the camera away to leave an audio message.
  * Jing - free at time of writing - will allow the person with ME/CFS to send a video of a person's screen with audio attached. This can be used as an audio message.
  * Facebook. I don't have a smart phone. But  I believe you can leave an audio message on facebook.
  
• Spend time alone and in silence
  If you have severe Chronic Fatigue Syndrome-ME and have communication problems based on cognitive difficulties, and headaches, you may need to spend a lot of time on your own and in silence.
  
  Living with illness is already likely to be a lonely experience. But unless you have someone profoundly understanding and adaptable in your life, silence will probably be necessary to keep the symptoms as low as possible. (Click through for quotes about loneliness.)
  
  In my case, the times of silence allowed my head to work better during the times when someone was there.
  I needed as much speech as possible for survival. It also fed my emotional well being to have some speech for social interaction with the caregivers and with the occasional visitor.
• Listen to healing meditations
  Healing meditations can actively calm your nervous system and cultivate a healing environment for the body. Hopefully the physical communication problems will be reduced or at least be stabilised.
  
• Cultivate positive self talk
  Talk to yourself in a way which gives you some of the sympathy, understanding and company you need.
  
  Positive self talk can be misunderstood to mean telling yourself to be happy all the time. 
  There will be times when it is far more helpful to tell yourself:
  'it is normal for me to feel upset by my physical communication problems'.
  Be your own best friend - the one who allows you to have a moan and gives you sympathy and understanding.
  
  I have put much of my effort in the direction of cultivating positive self talk in order to change my internal world. In the future, I hope to bring out books on this subject.
  

Lack of understanding, disbelief, lack of sympathy

Despite your communication problems, the speech you do manage to get out may sound normal and set up an expectation from the other person that you can speak normally. This in turn may lead the person to criticise you for not trying hard enough.
It is maddening to make such an effort and then get criticised for it!

When you have physical communication problems as part of Chronic Fatigue Syndrome, you also face the possibility that people think you are mentally ill and are choosing not to talk. If your physical symptoms are disbelieved this can feel very hurtful.

Given that you are so desperate to communicate, it is also hugely frustrating.
Instead of criticising you, the person who is delivering the criticism could choose to adapt their own behaviour to help you communicate!

When the person who misunderstands your communication problems is a health professional with the job of assessing your needs, their lack of understanding is also dangerous to your well-being.

If you relate to this article on loss of speech and physical communication problems with Chronic Fatigue Syndrome, you are dealing with a lot.

You probably need someone to acknowledge this.

I wish I could recommend a healing method to alleviate your communication problems. Sadly, I don't have any magic advice for you.

I set my faith on the Lightning Process working for me. I had a massive improvement and regained much of my speech. But I can't claim that it would work for everyone.

I continue to manage the symptoms that lead to communication problems by leading a quiet life with lots of solitude and silence. I do healing meditations throughout the day to keep my nervous system calm and provide a healing environment for my body.

Wishing you health both within and beyond illness,

Katherine

Katherine T Owen

Katherine T Owen runs this website - www.HealingCFSME.com.

She is author of Be Loved, Beloved (Read it in paperback at lulu.com or on kindle)

Click for a second article on understanding loss of speech when living with CFS.

Move to read more about Katherine's own journey with severe Chronic Fatigue Syndrome.

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© Katherine T Owen. All articles on this website are copyrighted. I am delighted if you choose to click above to share this page on social media, but please do not copy, print or otherwise use without my permission. Thank you. Disclaimer: I am not a medical practitioner. The articles on this website are not to be taken as medical advice. Please consult a medical practitioner as necessary. Disclosure: On some pages, there are affiliate links, for example to Amazon. If you click and then buy within a certain time period, I will receive a small commission which goes towards the running of this healing website. Abundant thanks :-)