Missing in action 

​I’ve wanted to blog for a long while but just not felt able to.  I have been dealing with many a crisis relating to my PA assistance (formerly agency care),  issues with social services,  and several legal issues.  It’s not just that I’ve been too unwell to write,  though there is that – it’s that I literally can’t write about the things that have been happening,  because if it were traced back to me I could get in trouble.  I’m also super paranoid about writing about the big dilemmas I face –  even though I feel I need an outlet,  and also think they are experiences worth sharing.  
So first of all I should probably check where i left off.  *goes to look up my last blog post*.  It was a short health update and saying that I’d started live in care. Well,  I’m still doing live in assistance (I am trying to call it assistance and not ‘care’).  It has been a tough journey but I have a few live in personal assistants and will also have some part time lens that come and do double up.  I hope so badly that things will work out with this new intake, as I have had difficulty previously that PAs didn’t fit my personality,  or they would only stay very temporarily.  I still need to recruit for one more part time PA,  or to use an agency,  though I am nervous about going back to having two people here at a time.  It can be exhausting.  
Talking of exhausting –  I’m not well, really not well.  I’m far more ill than I care to admit and on top of that I am struggling to sleep.  This has stemmed from the fact that I have so much to do.  First recruitment,  then training and legal issues.  It’s never ending.  It’s a job –  and I’m not well enough to work…. Yet somehow i find the adrenaline to push through, because what else is there?  I have gotten help thank goodness but have still had a lot to do by myself.  The biggest problem is that as I overdo it,  my body gets stuck in a cycle of fight or flight and I can’t rest or sleep. 

I’ve decided that I’d like to write more openly about being queer and transgender on this blog, though I’m not sure where to start.  I do know that I need to share somewhere that my gp is suggesting stopping my hormones on the basis I cannot get to hospital for a pelvic ultrasound.  I am hoping the gender identity clinic (GIC) will tell him that this is a bad idea,  and let him know these scans are a suggestion (all be it based on medical research) and not a prerequisite of hormonal treatment.  I’m hoping that he will be told that abruptly stopping someone’s HRT that they’ve been on for 7 years is unethical and physically and psychologically unsafe.  I am hoping he will feel very silly when realises the scans have nothing to do with my liver (which he seems to believe). What I want to say to him is whether he would prefer me to stop being trans,  or stop being severely disabled /bedbound, because that’s the position he is putting me in.  He was dismissive of other issues raised,  jotted things down as if he was going to come back to them (but never did); and had no suggestions for my sleep problems other than that I should come off my privately prescribed sleeping tablets (which is a ridiculous suggestion). Everything is put down to me being in bed,  and whilst yes some things can be exacerbated by,  or caused by that, it would be really helpful to be assisted with medical management for my situation as it is now,  not just point out how my being in bed is the main issue.  Of course all of this was said in that kind doctor voice that makes you feel like you’re being listened to and supported right up until they leave and you’re left realising that you’re in a worse position than you were when you first started.  
I have a lot more I’d like to write but will leave it there for now as it’s nearing 5am and I’d like to get this blog post up before the clock strikes 5. My next blog will include some poetry I have written in the last few weeks. 

Again please do share my blog anonymously.  Thank you.  


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