Hi there, this is julies husband again (pete).
Last night was one of those unpleasant occasions as a carer when you can't do anything to help, a total crash for over doing things; not physical but mental exercise. She's been working on things for the site to get the message out there and to share her experiences in order to help others; thats what she's like and I'm sure one of the contributing factors towards her illness.
In the middle of tea last night she just could not go on, no energy at all not even sufficient to pick up a fork, mind totally buzzing, severe headache, unable to move unable to think. I had to assist Julie to bed where she lay down for 20 minutes motionless, unable to summon sufficient energy to move. What could I do to help? -stroke her hair whisper kind words of encouragement but in reality I could do nothing, absolutly nothing. Most of these incidents occur when I'm at work and must be very frightening to be all alone and helpless.
Time had to take it's course until she had regained enough composure to use EFT, that she had blogged about earlier that day. This helped her to calm down her system and become less anxious about her syptoms, but she was still not with it for the entire evening. I even went to the shops to get her a couple of bars of chocolate even though she should't have any due to the sugar content but it was something I could do to help. It did raise a glimmer of a smile! The only thing certain about CFS/ME is that another day soon comes around and hopefully things " Can only get better "
So I thought I would share this experience with you all today and take the opportunity to ask any CFS/ME sufferers and carers out there to drop the site a message of support for all the hard work she is trying to do to help others.
Why not go to the contacts page and share your experiences with us so we can put them on the site for all to see. If you're on the road to recovery, recovered or just been diagnosed, let us know how you are doing. The more people who come to the site and tell their stories, good or bad, share their experiences, tell us what works for them, what makes things worse it all helps others to know they are not facing this alone. Get if off your chests, let it out, I'm sure it will help you and others to ease the pain and suffering. Visit the poetry section you may find it easier to put your feelings down in poetry there's some moving poetry already on there.
Julie's feeling a little better today thankfully, and hopefully she will continue to do her blogs in the coming days. Remember this Blog is for all you CFS/ME sufferers give us your comments and let us know what you think of the content. Are there any topics you would like to bring to the table or get out into the open?
Hope to hear from you soon, don't be shy remember we are all in it together sufferers and carers. We have to accept the ups and downs of the sydrome and stay as positive as possible to help our partners or children. The more normal we can make life the happier they will be and hopefully they will stop worrying about us and spend all there limited energy on getting better.
For all who read my blog, It would be amazing if you could forward my link http://dld.bz/mBZq to as many people as you know (twitter/facebook/your email list etc). You will then be doing your own bit for ME/CFS awareness and spreading the word to people who one day might just need it! x