@
Goodness to M.E. Thats really helpful, thanks a million. I wonder why they dont do the damn things in capsule form and be done with it. I swear there are people who must sit around all day at work thinking up extra ways to torture the sick!
Probably because simple things to help us would come at a much higher cost than we could afford?
Am glad you have found this site, lots of great ideas and support from other like-minded people who are all living in a world of M.E. that until a cause and cure is found, there is no money to make in assisting us.
I've found that the treatment road for managing M.E. is not well known and basically trial and error if one wants to be a guinea pig for the system that often provides poor outcomes for us to endure.
After 2 years and much money on the search for better health I now find staying calm and focusing on what I can do within my activity envelopes, pacing and regular rest works well for me. I accept that there are limited successful treatments, no cure and therefore have stopped banging my head against a brick wall in pursuing this. The many posts here support this for me.
This is not to say my life and plans have not been turned on it's head and around some 180 degrees but hey, I'm not the first nor the last who has had to adapt to a chronic illness, being mostly housebound and who has spend time grieving for what could have been?
Been has been and sadly gone, here is now and now we plan just for today and god willing, hope for a better day tomorrow, please! Best to make the most of what we can while we can. Sometimes it's more about a state of mind than the body, when my mind is calm and peaceful the body is more cooperative and less demanding, for me anyway.
I take very few supplements now, see my doctor every 6 months and limit focusing just on my health issues, hence the acceptance.
With a supportive doctor there are lots of services than can provide support in the home if one is prepared to stay in the present, accept that it is a slow process and at time frustrating to educate the uneducated in M.E. and to be clear about what is needed and why. Stay focused on the goal not the obstacles along the way!
My focus is to remain living in my home for as long as I choose to, this is my goal no matter what.
The focus is accessing appropriate support for a person with a chronic illness and deliberating symptoms. The name M.E. in this instance is not the priority to focus on when dealing with agencies to facilitate the support.
It is also important to not be unco-operative or present aggressively or helplessly as this could indicate to agencies the need for intervention on the basis of self neglect and inability to live independently.
Government agencies have a legal obligation in the provision of 'duty of care' for their workers and if word gets out that one is 'difficult' then this may result in limiting services.
Whether we like it or not, government and non-government agencies do talk with each other when they share a common client/customer to facilitate services and not duplicate and if one is not coping at home and a 'duty of care' for workers is at risk then the possibility of intervention and placement in a residential care centre is real.
How do I know this, I worked in the area for over 30 years, and am careful about what I put on this or any other site or how much public 'internet' activity I engage in. Big brother is alive and well and comments/posts can be used against us or to substantiate our predicament including defamatory comments against them or their workers!
All the best with your son, it is a tough gig for both patient and parent and you sound like an amazing Mum, well done!
I've put this info here that is not directed at you in anyway, just as an insight for all site users to be mindful of.
I'm happy to assist where I can as are many others here will also do.
Take care, stay strong, calm.....and breathe.
