Hi all,
so i haven't posted in a long time, if you've read my last post then you know what was happening in my life over the last few months.
December 3rd 2017 I lost my best friend, my mam to complications of stage 4 brain tumour and the treatment she was receiving, as you can guess it devastated us, although she was seriously ill and we knew the dreaded outcome it was a sudden and unexpected complication that took my beautiful mamma from us.
Suffering from severe chronic migraines/cluster headaches, fibromyalgia, severe depression and all that comes with each illness has left me feeling trapped and out of control, although the stress and devastation has caused me flares and constant pain, I've seemed to have reached a stage where im shut down and numb, almost like my body is holding it all in ready to unleash the flares in one go and its actually terrifying me, in the last two years I've been bed bound for 80% of the time,I've gained weight suddenly and uncontrollably,which I've discovered is a normal part of fibromyalgia after a progression of symptoms but doesn't mean i don't want to get my body back. I'm also frustrated due to the lack of care and help im receiving from health care professionals, if it wasn't for my GP who's been my life line for the last two years i don't dare think where id be now, I've begged to be sent to a new neurologist due to the lack of care ive received from my neurologist who seems to have just given up helping me, I've also begged to be sent to a Rheumatologist but there seems to have been a understanding made that rheumatologist won't treat fibromyalgia.
I really need to try and see both neurologist and rheumatolagist and hopefully receive some answers and treatment.
My dad has also decided to contact social services to see what care and support they can offer me due to the fact my needs might pass a stage that my dad and brother can't help me, although i agree the thought alone is filling me with dread and anxiety, if you've got in contact with social services for help with fibromyalgia please comment and tell me how it is and your experience.
yesterday also marks a year since i had to reapply for pip and a year with no money, after my assessment two weeks ago and the fact that the assessor couldn't under stand why i was being assessed when my medical evidence covered everything they needed im hoping that will be the end to all this stress again for the time being.
Sorry that this is so long but i needed to get it all out of my head, if anyone has any advice,stories or thoughts please comment or message me. xo
