No. I am struggling.
My mental health is negative and I am not coping well.
This is a difficult problem to confess because I have spent a lot of time trying to ensure that my blog puts a positive spin on living with a disability however the reality is that it is impossible to stay positive all the time. Reality can often make life difficult and present seemingly insurmountable objects directly in front of us.
Case in point: an insurmountable object (sorry random guy), see below my photo from March 2023. My view of the stage from the wheelchair space at the New Theatre in Oxford, sometimes the objects in the way are literal not just figurative:
(After complaining, the New Theatre have refunded my tickets and have pledged to build spaces down the front of their auditorium. Let's just hope that their pledge is more reliable than one from Amber Heard..!)
My gradually degenerating physical condition is the biggest obstacle. It effects everything in my life and presents a constant battle for a meaningful and worthwhile life.
When my last blog was originally written, a little over a year ago, I felt like I was winning albeit by a fingernail. The past year has been hit after hit and I am ready now to admit defeat.
I surrender, take my white flag. I give in.
What broke me?
Not my Ataxia.
Don't get me wrong, my disability and all the shades of bottom waste that comes with it is the single largest contributing factor to the reason why I am defeated but living with Ataxia is entirely possible if you have the correct support.
My Mum is amazing. Without her I would not be here.
What broke me is the lack of support from adult social care services, the lack of medical services and provisions and the attitude of disregard and disrespect adopted by carers, professionals and members of the general public.
I don't usually write depressing, long entries. I don't think it's constructive but to be very honest there is not a lot in my life to be positive about right now.
I am struggling and I am completely failing to get help.
I have been telling adult care services at my local government council for nearly five months that I am unhappy and I need help. When you need care and are given a care plan it is supposed to be reviewed every year to make sure it is still for fulfiling your needs. My last care review was 2019. So I have not had one since for four years.
Calling, emailing and following complaint procedures does not work at all.
With my inconsistent care agency last year I had to stop doing my volunteer work which is one of my main purposes. I have been unable to do it because the carers were untrained and unreliable, my life was miserable.
When I was changed to another agency last month I hoped that this would improve and I could regain my purpose. Whilst this agency is a definite improvement, I still have a long way to go before I am happy or feel safe.
I am absolutely tired of repeatedly justifying my medical needs:
'yes I need to order more urine bags, please, I know that I placed an order 2 months ago, but you only send 2 months supply so I have 1 week left'.
Tired of repeatedly justifying my difficulties:
'yes, I cannot stand so I use a hoist, to get out of bed we must hoist. No you can't drag me,
Tired of repeatedly justifying my preferences:
please may I have my socks on now to stop my feet getting cold'.
Absolutely exhausted with asking on a daily basis for carers to shut the door before I undress, give me a blanket, let me have some dignity and not push me naked through the house etc. etc. etc...
On an almost daily basis I am made to feel like I need to justify my very existence.
Provide evidence that my life is worth it.
Prove that I am not just a burden.
Its exhausting. I'm tired and way past the point of caring what 'the professionals' think. What is the point of trying to communicate with people who aren't listening?
Within the last month I have been given a child's bedtime, had carers message me and tell me to put myself to bed that evening because they were not coming, been hit in the face with my hoist, been elbowed in the forehead and have had a male sent to do my female only, single carer call (the male thing might seem insignificant but trust me, having my intimate areas cleaned and getting my wobbly bits out in front of someone within five minutes of meeting them feels humiliating and undignified enough, even when your personal preferences are fulfilled!).
What life I do have I owe very largely to my Mum, without her I would have very little.
She picks up all of the slack left by carers and helps me try and cope.
If you have bothered to read my unfortunate story to this point and you can relate in any way, I am really sorry. This is one of the times when I hope that actually I am completely alone in my struggle because I do not want anyone else to feel this way.
You also do not need to worry, despite my increasing despair I have no plans to remove myself from this existence.
I thought I might end this blog by telling you the strategies I am using at the moment to cope with the negative situations. That way if somebody out there is unfortunate enough to be having any issues that are similar, perhaps it will help in some way:
Inconsistent care - this is particularly difficult for me because I am a planner, I like to organize everything and this makes it so that I am unable to. I am learning to take things day by day and not stress out when things don't go according to plan, which is often. This is not easy sometimes because it feels a bit like trying to change who I am, this is still very much a work in progress!
Being given a childs bedtime when you are not a child - streaming television service. Being put to bed early means that I have recently finished binge watching a marathon of the entire Marvel Universe in chronological order.
Undignified situations - music. Playing the music that you like from your own playlist when you are doing the necessary things is a big help.
You need to also remember that your consent counts. It does not matter what your disability is, how disabled you are or how good your communications skills; your consent to any situation is necessary. You are human and if you do not consent you do not have to justify yourself. Your reason is enough.
Lack of purpose - concentrate on the friends and family that are close to you, the tiny moments of happiness rather than a big ones. Take everything slowly. One tiny bit at a time.
Keep going.
