Just supposing I could send our newly diagnosed members a gift, what would be the best possible thing I could send them - other than a fat cheque?
king size pillow
Ha ha. A magic pillow which guarantees a good night’s sleep
The same thing you would get any other friend. Get to know them as a person, because guess what! WE ARE JUST THE SAME AS ANYONE ELSE! We just have an illness. That is the hardest part about being someone with multi conditions some that are very severe and cause people to often treat me like I will break at any moment. I wanted to be treated just like anyone else. I can manage my own conditions between my caregivers and doctors. I don't need the world to ya know :)
Send them a gift card to their favorite store or to a restaurant. Something totally normal not related to their condition because for me. I don't want to be reminded :)
Sorry Kristin and everyone else. I didn’t mean to offend. I tend to forget my situation is very different. When asked the same question I said restaurant vouchers too as cooking is such torment. I avoid it at all costs and I don’t mind who knows it:)
Oh Nel, I am not offended by you love. It is more other people in the world who don't understand us. That was more venting because I know you get it :)
That is a very hard question but I have a suggestion...
....Take them to a nice quiet beach for a weekend and spend that weekend with them sharing and talking about how their life will change, the stages they will go through and what has helped you to "cope"... A weekend showing yes, I understand....and I really care.
I think that would be a wonderful kindness...to experience....
Ranger
What a lovely idea Ranger and it would be good for the giver and the receiver.
I never met anyone with my condition and the best present a help forum gave me was a stream of suggestions of how to cope. They don’t all seem practical, or apply to my situation, but they are all offered as helpful gifts by friendly fellow sufferers and worth their weight in gold.
I was brought up by the sea and miss it. Not the wild or secluded seashore but a busy seaside town. Nevertheless, through my turbulent teens and troublesome twenties I would stand on the the sea wall at any time of year with the spray on my face and the roar of the waves dragging the shingle down the beach in my ears, and problems would disappear for a while at least.
Nel
Maybe an awareness bracelet? There are various sources for them, they are inexpensive, and the proceeds generally go to a good cause. Medical alert bracelets can be quite expensive, but that was my first thought. Also, there are different views about whether caffeine is useful (or is even a good idea) for people with narcolepsy - if we agree that it can't hurt and can even help in a pinch, I would say a small denomination Starbucks card! Or, a copy of Julie Flygare's book "Wide Awake and Dreaming," a memoir of her law school days with narcolepsy, which many people find has reassured and inspired them. BUT now that I have had a chance to read the other comments people have left, I have to agree that we are *people* (with narcolepsy), and that a thoughtful gift for that individual, not necessarily 'about' the disorder, might be the very best idea!
You are right of course pwntek.
I was welcoming new members on to the site and reading profiles of newly diagnosed people who are often confused and anxious and that’s why I posed the question.
Anybody can buy me any kind of present and I would be delighted (it doesn’t happen often enough!) but when a friend brought me something targeted at lessening the difficulties in my daily life due to my condition I was beyond touched.
I have been reading Julie Flygare’s book which would be an inspiring gift for anyone. You have reminded me too that I should investigate a medical alert bracelet. When I had my accident I was too out of it to speak any kind of sense to the paramedics and a bracelet would have helped.