Thursday 21 June 2012

Webinar News

Last night's webinar was, in part, about anxiety. It didn't all fit in with my ideas but was useful in some ways. I take notes through it when something might be helpful to remember, but I have my own take on this subject:
Anxiety in ME patients can be a big thing. Just the tiredness; never ending lethargy, malaise, jelly-like legs, all over physical weakness and cognitive exhaustion from the smallest stimulation, is scary enough. Who on Earth would ever imagine the body would be prepared to act like this? We're humans, prepared to fight, flight or freeze with intention at any threat. Could an ME patient do any of that? No. Being Scared, Frightened, Confused and Anxious is the obvious result. When I had so many symptoms, I needed toes and fingers to count them, it was mind-boggling. My seizures were especially stress-inducing as so many things could set them off, I was on the look out for triggers and how to avoid them constantly. The idea of coping with it calmly is practical: taking a methodical approach and dealing with each flare-up as and when it happens is fine, when two or three appear at once, it's difficult. When you have so many it's confusing and therefore causing headaches and anxiety, the idea goes 'out-the-window'! That's when a deep breath and a listening ear is necessary. And the big thing about this illness is realising when you need help. Be that from friends, family members or even a paid carer or counsellor. The faster you can offload symptoms and worries by talking about them or finding solutions the better your chances of less anxiety.
My anxiety is mainly about what I do when and where and also about a day when I wake up with a feeling of exhaustion before I have even lifted my head from the pillow. I have very little anxiety now, mostly just on bad days as my unconscious brain seems to think it is back in the old days- I have to keep reminding it that actually it is just an off day and it won't last.
When recovery begins it can be really scary to find yourself physically tired from activity. Tiredness has always been a bad thing. I have been getting used to physical tiredness; realising how lovely it is to put my head on the pillow at night and fall asleep because I am tired at the right time! Yesterday I was cautious as I was still lacking in energy, feeling listless, and spent the afternoon in the garden resting with music playing quietly next to me. When I fell into bed last night it took longer to fall asleep, I also woke up at about 5am and was tossing and turning for an hour.
Friends can be so useful in this scenario- distraction is a great way to reduce the stress. Items through the post can be distracting, not because it's a birthday or special occasion, but because you can't be there on the doorstep and want to make an effort. It can be as small as a joke on a postcard or as big as an audio book or DVD set from Amazon as a gift, or from your own collection on loan. Perfumed bath foam or soap is a nice idea but usually not practical as the skin can become so sensitive. Just a phone call, or message left on the answer phone, a text or an email with a funny YouTube link is a distraction and something that can distract over and over again.
One of the best books I ever found to help deal with the stress is How To Be Sick by Toni Bernhard. It helps the mind and body come to terms with the situation and the reality becomes more peaceful. A half-way-house has to be found at the beginning of ME (or for longterm sufferers like myself in the middle of nowhere when the right tools are in situ.). Sitting on the bottom rung of the ladder for a few months to find firm ground is a great stance to take. Once symptoms have abated, which might take a long time, the climbing can slowly begin more securely. But if the heart and head are starting from the right place and peace has been made with the situation, then sickness can become recovery.

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