So long 2016  –  a year in review (well the treatment protocol bits!) 

This year has felt utterly stagnant in terms of any progress with my health and treatments so I decided to type up all the things is tried or continue to try.  I was quite surprised by the results.  I may not have had one supplement help my overall condition in a bit way,  and I may have had a few make me worse….bur things have definitely not been stagnant! 

Treatments tried which I did not continue due to reactions: 

– ketogenic diet (may try again) 

-ciproxin for fermenting gut. 

-uva ursi herb for fermenting gut (may try again) 

Treatments tried which didn’t work but will take time to come off:

– clonazepam  (addictive sleeping medication) 
Supplements I added in and continue to take:

– pancreatic enzymes (digestion) 

-home grown kefir (gut health) 

– home grown Lactobacillus rhamnosus (gut health) 

– D mannose (bladder problems and low level infection) 

– ashwagandha (adrenal support –  adaptogen) 

– elderberry (immune support) 

– devil’s claw (pain) 

– increased cbd (pain,  anxiety,  sleep) 

– increased melatonin (sleep) 

– lemon balm and Valerian,  Chamomile and hops  (sleep) .  

Prescription medications I managed to reduce:

– Buscopan from 6 tablets daily to 0 except occasionally (IBS) 

– clonazepam from 1mg to 0.6mg –  a work in progress (Sleep) 

– stopped cranberry and swapped for d mannose (bladder support) 

Mental health:

– tried 4 weeks of online therapy via talkspace.  I didn’t really get on with my therapist and found the format didn’t work for me. I’d like to try an email format some time in the future.  

– meditation.  Mostly mindfulness but found yoga nidra towards the end of the year. 

PA stuff :

– switched from 4 PA visits a day to live in.  Later added in a second PA visiting each day.  Ending the year with a system in place though at the time of writing I have found out I will need to make some changes.  
Goodbye 2016,  you will not be missed! However perhaps I need to stop thinking of you as being a non year,  since I have still done things! 


Needing PAs has stolen all my energy

​This post was written weeks ago and somehow didn’t get published.  I thought I’d still post it but with the update that i did find someone from a pa finding agency and whilst not perfect it did go OK.  I’m not sure how long she will stay but I’m hopeful I can make it work in the medium term and get some stability.  Keep fingers crossed for me please.  

7 months of recruitment and counting.  7 months and I am now on to PA 14. Some awol,  some dismissed,  some redundant,  some moving on to new jobs or study,  some unsuitable. Some lasted a 2 -7 day trial,  some for months.  

There’s reasons why there’s been so many,  but it does sound bad doesn’t it?  Factor in that 5 of those PAs are my new team (one left to recruit)  and it’s a little better.  Reality is I’ve had temp after temp.  People unsuited to the role,  who could only do it short term,  or who were not interested in the role as it changed when my funding did. That’s 7 months of looking for someone to meet my basic needs, often at the last minute . 14 people I’ve had to find,  meet and train.  9 times I’ve had to deal with someone leaving or worse to take action against them to end their employment.  All in 7 months!  Thank goodness I’ve had help.  I’ve not done any in person interviews. At first I did things by email but then I switched to someone doing a phone interview on my behalf.  

4 -5 of those months were spent not knowing what my budget was so having no choice but to use temporary workers before switching to a more permanent system.  

Now I have to find someone by next week. I’m getting feedback that people are seeing my Gumtree adverts come up over and over again and assuming that I can’t retain staff.  The ads have been up since August when I began looking for permanent staff.  I guess they’ve been up 3 months now and so people must be wondering how many PAs I’ve gotten through since then: one a week? One a month?  ….I feel so defensive about it – that I don’t want people to think I’m so awful people run away.  I can’t post the reason it didn’t work out with the two people I trialled on my blog obviously but it wasn’t my fault.  Sometimes job trials just don’t work out.  

I don’t have the energy to heal.  I’m continually having to work in recruitment,  training or management.  Then when I’m not I’m full of adrenaline or anxious so not resting.  It’s no wonder my health has gone so downhill.  

I’ve decided to come off my clonazepam. I’ve been tapering a bit too fast and having some nasty withdrawal symptoms so am now going to go more slowly (whilst aiming for weeks to months rather than years) .  I’m shattered but have so much to do.  I feel like I work from home and never get  a day off.  The only days I get off are the ones even I just about crash and can’t do any more.  

Wake me up when my recruitment is sorted? Wake me up when this year ends? 

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.