Question Time- Question 1

I have been asking a few questions on some of the ME forums I belong to and have got some interesting answers and advice.

Question 1
Anyone else find it hard to read and understand and take in written information? I have been trying to read stuff about behaviour issues and other such things and it just doesn’t seem to go in. I have a Masters degree and spent many years studying and researching so this shouldn’t be hard. I like reading and read novels which I enjoy at the time, but can’t remember much about it once I have finished. I find it really hard to follow recipes, written instructions and patterns and get really stressed with them, so fed up of what this illness robs us of.

I am finding it hard to read information, I have been trying to research behavioural issues that Emily displays and also things to try and improve my own mood, but I don’t seem to take in the information.  I do read novels, but can’t really remember what I have read and can’t read anything that is too complicated.  I struggle to follow recipes and patterns which makes my pleasurable activities difficult.  If we have a new game to play I have to ask someone else to read the rules and then try and explain them to me.  Emily likes to change rules once she is used to the game, which is quite creative, but confuses me too much. I have a post graduate degree so was always used to reading and gathering information so I find this quite distressing.  When people have sent me information they think that I am not taking it seriously as I don’t always read it, or if I do I can understand what it is telling me to do.  At the moment I am trying to work through a book with Emily What to do when your temper flares.  It is a book aimed at children and I am just about keeping up.  I have also been trying to read Wisdom of groundhog day, which does seem a good book, but I have only got half way and now it feels to much of a chore to carry on with it.  Finally I got 80% of way through Words that work, again an interesting book, but I can’t remember the techniques and as it is usually a stressful situation when they are needed my mind goes blank.

If I am trying to follow a recipe or pattern I really struggle, partly because I am trying to multi task by reading the instructions and doing the activity, so many of things I try become too stressful when they should be a pleasure and I get really upset at not being able to do something that is really quite simple.

Some people suggested audio books, but with my hearing issues listening is very hard work and I only hear parts of speech.  I use subtitles when watching TV and can’t watch anything that doesn’t have subtitles and even then if there is too much going on I can;t follow the programme.  It is frustrating as these things are what most people do to relax.

As I now know many fellow sufferers have issues with reading, I will try and make my posts a reasonable length so will post the other question separately.

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2 thoughts on “Question Time- Question 1

  1. Lorraine Conibear Reply

    All of the above I have had to learn to accept and manage, I was stopped in my tracks doing my degree (in wprk) 7 yrs ago!


    Audio books which I know are no good, although I still have to rewind a lot.

    Always minimise as much other activity as possible.When reading, background noise, light,movement.

    Sit when reading recipe, get all ingredients ready, rest , sit to follow as much as poss ingredients on the table.

    One step at a time, short bursts, stich markers, pattern markers, row counters.Minimise everything else.

    Hope that helps. Just another thing that requires acceptance and management I'm afraid.

  2. Jane Shaw Reply

    Thank you Lorraine. I still struggle with acceptance and I have had my ME for nearly 20 years. I really do need to work on acceptance and living with my limitations instead of letting it all get me down so much.

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