Is your cup spilling over?
Whether it be the recurring PIP forms that people with mental health disabilities have trouble filling out (or find it near impossible), having to go to hospital for emergency treatment, or a problem that encourages neurological overload in those with SS, a helping hand is more than desired, it is most often needed.
A while back my ‘Advocacy Network’ of help that I thought was solid was found to be weak, w whenhat was there for me totally disappeared when I stopped going to noisy places (my withdrawal was due to the noise causing Tinnitus and migraine, (the pub Sunday evening was now too much), then a few months after the family had to move to Cornwall I had a panic attack, it was then I discovered my network had disappeared.
One morning shortly after my ‘Network’ disappeared, I found myself in a restaurant looking at the accounts for the charity. My body began to shake, which eventually turned out to be a stress attack due to neurological overload. I was taken in to hospital where I became mentally unstable and went through several very distressing circumstances that could’ve been avoided had I someone there aware of my condition and what was going on (another desperate need to inform the medical World of SS - none of the medical professionals present knew of the condition), I would’ve felt reassured and comforted, however I experienced the opposite. Since this time friends have reached out and offered to be my advocates, looking back at the hell I went through in hospital,I was so appreciative.
Under times of stress, some of us with SS can find ourselves
‘losing the plot’ and sometimes someone there to put you back on the right mental path is exactly what you need to deal with the trauma.
I recognise that my health has deteriorated to the point that Advocasy is
something I need, not full time but as a reassurance in my mind that
someone can be there should I need them, this is the lifeline I need.
If you have SS, I hope you do have a network that you can rely on, someone
that can reassure you everything is okay and that the situation is under
control, if you do not and are looking for an advocate then this group is for
you. Again, this is a private group for those with the condition superficial
siderosis. If you have this condition and are looking for Advocasy then
please join this group and as soon as we are working within Safe boundaries
we will endeavour to find someone local to you that can provide support.*
Those offering Advocasy are invited to join while those who require the advocacy are to contact admin@thesilentbleed.co.uk where The TSB team will endeavour to team them up with someone local to them or even help them reach out to local services that provide advocacy.
As
Not many know of our condition and so having someone there by your side that can inform those treating you when you can’t can be vital.
I was dismissed from hospital as ‘a very angry man’ - the medical team that I was assigned either knew nothing about my condition or not enough, it was not anger It was fear which looks like anger when you have no neurological overload.
On my iPhone is access to my SOS information which includes my advocates, be sure your phone has this information (ask your phone provider how this is done), it is often the first place the emergency services look if you are not coherent.
Be sure someone has your back, be sure you have strong Advocasy.
Jason Roberts
* the Silent Bleed asks questions when people choose to join TSB various groups, we are unable to check out if individuals answer honestly and so can make no assurances to the public as to how genuine these individuals are. We recommend that you check for yourself the individual(s) as volunteers to offer help with Advocasy. We accept no responsibility for any interaction - see the guidelines on the Facebook group.....
An Advocasy group is on its way, your positive feedback to this proposal will help in making it possible.
