I've not been having the best few days emotionally wise if I'll be truthfully honest. I've been struggling with my mental health but the pressures of chronic illness - dealing with pain and fatigue along with al the other symptoms and on top of that struggling with basic tasks has been weighing on me heavily too.
Yesterday I met with my nurse from my care agency who's been doing a lot of advocacy work on my behalf; trying to get things sorted but we're both feeling frustrated. We feel like we're getting somewhere, like that meeting with A&E last month but since that meeting nothing has happened and we desperately need and Ambulance and A&E Care Plan put into place. My GP is also dragging his heels too, such as not responding to the countless phone calls and letters my nurse has sent to him, which is also frustrating and I have yet to hear back from the email that I sent to my rheumatologist almost two weeks ago. I also have on my to-do list to email my neurologist. My nurse has now suggested the idea that we see my local MP to explain how lack my care is from both the health angle and with social care too and see if that will get us anywhere?
I don't want to go into too much detail but living with mental and physical illness is draining and when you have a lack of a support network around you the isolation plays on you. Sometimes you wish that people could spend a week, or even a day in your life. The mediation regime, the pain, the struggle to get up, dressed, the brain fog clouding your brain, the isolation etc.
'Fight Song' by Rachel Platten is one 'Just. Keep. Going.' songs that I put on when I'm struggling so I thought I'd add it to my blog in case any of you need a little reminder to hang in there.
Today I am feeling gratitude for:
- The support being there when i'm in crisis
- My Bluebird nurse
- The health that I do have
- The NHS