There is a genuine drive in NHS England
and within the medical community to promote self-care, self-management …
whatever you want to call it. The language we use around it is almost as big of
a debate as how we encourage and support self-care! I’m personally not overly offended
by anything we call it a long as the message’s that come with it are positive
and respectful.
Firstly, let’s get this straight,
self-care is not a new idea, it’s not something we need to introduce. Anyone
living with a long term condition knows that you self-care every day of the
year. We actually do the vast majority of the work under the direction of the
medical professionals.
I’ve sat in endless meetings recently
and listened to everyone’s ideas about self-care and I’ve found it really
challenging to relate it to my life with chronic cluster headaches.
To my mind, the idea is that we look at what we are already
doing as patients …
Taking medication each day,
treating each and every individual attack, coping with the devastation it
leaves in its wake and then carrying on and doing it all again tomorrow.
And look at what the NHS could do to help us make this
easier, more effective and increase our confidence in managing our conditions,
for example …
Training and education,
technology e.g. Apps and telemedicine, more control
So I’m throwing it open… what help do YOU think the
NHS could give us that could help us manage this condition, contact me by
commenting on this post, emailing me (notjustaheadache@gmail.com) or sending me
a message on twitter (@notjustaheadach)
For me, all I expect from the NHS is to have the correct medication available to all CH patients without having to go through the hassle myself and others have had to go through. Also equal awareness should be given in comparison to the amount of awareness given for other conditions such as diabetes etc.
ReplyDeleteA diagnosis of Chronic Cluster Headaches should automatically qualify you for PIP without having to go through so much mental anguish fighting for it. The disability should be more recognised.
ReplyDeleteavoid any contact with the external world , in a peaceful environment and stay there for as long as you can. You will notice a difference on your cycle the first 3-4 days. Turn all mechanisms out and forget about time and date. try to find inner peace and most important, check to have a good quality of air and lots of quietness. Help your self on a start of a cloud with a strong cup of coffee and if this doesnt help try an ice pack on and off the painful area. If this doesnt work then its o2. Keep in mind that the o2 aboard attack but this effect could be a postponement of the attack for later but ice brakes the alarm clock series.
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