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We particularly need trustees with experience in grant applications, fundraising and publicity.

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Fundraising to pay for biomedical research towards test, cause and cure for fibromyalgia

DUCK30 £3 to 70070 OR DUCK05 £5 to 70070 OR DUCK10 £10 to 70070 OR DUCK20 to 70070

One thing we hear a lot from our supporters is that they dread having to use a telephone since getting diagnosed with Fibromyalgia, be it landline or mobile. It's certainly not uncommon in our house for the phone to ring out unanswered.


There's several reasons why we don't handle phone calls particularly well. I can only explain them by telling you how they affect me personally.


Memory problems

I have very little short term memory, so even if I answer a telephone call, by the time I put down the phone, I've lost all memory of the conversation I just had.


Take notes you may suggest, and I do. However due to dysphasia (brain fog) I find it incredibly hard to process and write out the information fast enough to keep up with the caller.


I also have problems gripping things like pens and due to an accident a couple of years ago I can only write with a pen for a couple of minutes at a time before it becomes too painful to continue writing.


Too much noise going on around us to be able to concentrate

This affects those of us with Fibromyalgia in pretty much every area of our life, not just when dealing with telephones. Background noise can be incredibly exhausting and hinders our ability to focus on a specific task.


I find texting slightly easier because I can reply in my own time. Sadly I often forget to reply to them or I reply in my head and forget to type it out and send it.


Tips for using the telephone with Fibromyalgia:

If you feel unable to cope with an incoming call, don't answer it!

That may sound really easy but we can feel guilty ignoring the telephone when we know who's  calling. Write down the caller's number, time of call and make a note to return the call when you feel more able to cope with talking to them.


If the call is from an official body

Don't be afraid to ask them to call back when there is someone there with you to help you through the call. Another suggestion is to ask the caller to put it in writing to you instead of doing it over the telephone.


Don't be afraid to explain that you need to write down what you are discussing because of memory problems. Most callers are more patient than you think and will slow down to enable you to write things down.


Don't be afraid to hang up if the person on the other end is ignoring your polite requests for them to ring back at a more convenient time. Particuarly if it’s a cold caller or someone else you do not know. Look after your health, your energy and ability to cope is limited with Fibromyalgia, so spend that energy wisely! By looking after yourself first and foremost.


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Why Telephones and Fibromyalgia don't always mix well


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