Reflection on 28th April 2018
My grandad passed the day before on a Friday so unexpected, leaving a vulnerable disabled Nana behind. My go-to guy (CPN) was off on leave and I was exhausted from all the tried and failed attempts communicating what was going on, with people I did not know, or who didn’t know me.
The problem was I was never quite getting the words right, clearly, my carer wasn’t either as the cycle of totally confusing the parties involved in the process of verbal communication, continued. (I know this because I have seen their words in my medical records, and the memory of these exchanges are forever scorned)
All I was requesting was my full script of sleeping pills that were put on weekly dispense weeks prior due to confusion from all departments, but mostly lack of communication between the individuals involved, add the fact my GP, CPN, and clinical psychiatrist were on leave or unreachable
The ADHD meds that were supposed to be monitored but were not wasn’t my issue, I know my internal chemical balances well enough to manipulate, monitor or judge, as I say I am not new to this system or being me!!!
What caused the damage to my psychological health making the next coming weeks harder than they could have been with help from those who could, was trying to get a hold of the only person that could have fixed or prevented this earlier in April.
The knock on effects had me shutting down and losing control, the reason I was in seeing a stand-in for my clinical psychiatrist in the first place previously because the side effects were problematic.
Back to the point and what I am reflecting on, I required these simple little sleeping pills that the chemist was only authorised to give 7, and I would have to come back to get the next required doses every week, for the next 3 weeks, like a beggar or idiot, no thank you. I was traveling over 100 miles for unknown time-scales as a funeral and wedding were being organised 2 days apart, it wasn’t possible. (10th and 12th May 2018.)
I really did not need this complication on this day, that was not my error to fix, that only got fixed at the end of August 2018. This should have been really simple but yet…???
I got my 28 lorazepam no problem though, the ones I didn’t even need the most. I just needed aid to sleep at night so that lack of sleep was not added on top of the obvious emotions one goes through when they lose someone they were deeply attached to, for the first time. Never mind the neurological and psychological disabilities coincided with a bereavement!!
Of all the pills I have been prescribed this should not have been the one that created the problem. When my disability involves communication, but do you think any of the professionals communicate???
They go by what is written on my medical records, which are a mess and full of insight and bull crap, also it should be clear verbally expressing my communication, is my disability. Hence the reason I’m publicly putting my words out there, for yourself and others to read, allowing my ‘voice’ to be ‘heard’.
One special woman tried really hard to get the help me and my family should be entitled to and needed, although the response from my clinical psychiatrist was shockingly mind-blowing, still can’t get my head around it.
Her opinion coming from the mouth of another was she could not help me???? To be a fly on the wall on that conversation. This inspired research into a clinical psychiatrist job title, role, and responsibilities on the NHS.
I can now say without a shadow of a doubt, so trust me when I say this, you could have helped me…. you chose not to for reasons known to yourself, that one day I hope you explain to me regardless if you read my words as I have yours, I will ask.
This lady who delivered my clinical psychiatrist words is a colleague of my CPN/used to be crisis nurse, managed to help in a way that mattered and made a positive difference, maybe not what was needed or could have been done, but the fact she was empathetic and tried was enough.
Therefore she gave me hope in humanity if we want to take it to the deepest routable problem, and in those trying to help. I need more than a place that’s safe to switch off, but must come up with an alternative, because the one person able to help, says she can’t…..
My constant daily problem is living in a place that sucks the life out of me, a constant daily battle to find the teeniest bit of space to gather my thoughts, living conditions are shockingly challenging as 2, who shouldn’t even be in the same room, grow together (no labels or stigmas).
It has been 2 and a half years I have waited for this change but nothing, all these peoples spare scraps of time in a system that is crippled. I became to empathetic now I welcome a shutdown, all the meds cost a fortune just to help make it easier to stay in these trapping conditions.
Be a lot cheaper, beneficial, more productive and easily fixed with a solution of better living conditions. Every profession is aware my personal circumstances are the main contributor that I’m powerless to change, disabling me time and time again, but those who are paid to do just that, can’t in my case.
Unfortunately, the people aiding me know they have the power, resources, and influences to change this, but claim they are unable to. I keep getting told to have patience, people are helping trying to resolve this, (nearly 1000 days of it, still no change)
My life has become the living breathing version of ground hog day and it is a crippling mode for me and my family to be stuck on, the reason I’ve been a runner all my days (take what ever meaning you want from that word ‘runner’.
When I try to rectify calmly, communicate effectively or go in all guns blazing to a problem easily fixed, I appear aggressive, of course, I am it is an emotion linkable to the circumstances I am experiencing, for a really, really, really long, long, long time…..
When a problem is so complex, it is easy and quite common to back off from it, especially if it makes you anxious or uneasy. This is just your mind and body thinking that it needs to protect one’s self, (whether or not there is actually any danger can become obsolete, the what if’s can be enough to create panic). I fight this personally and brutally… regaining control and composure
Personally, I will just find an alternative route regardless, especially if it doesn’t make sense or completely contradicts itself, its how I stay breathing. My objective and focus may end up with slight alterations to stay up keeping with the times, but the foundations remain the same.
It has been just under 20 years professionals have been involved inconsistently………. but I’ve been a constant for my mental health team since 2016 even when they claimed they could not or I did not need support, so disappointment is not new to me.
Maybe one day you will get it right, a starting point would be communicating between the departments, I’m the patient and I do not get paid to be the messenger, its soul destroying.
I continue this journey for my dependants, no way will I allow them to walk the steps I did. Also, a disability is not an excuse to be an idiot, admit when you are one because I have studied, lived and breathed it since 12 to the point I excel at it, alongside being disabled, the difference is massive
Do not allow your disability to define you, you define it. Learn, manage or overcome what you are able by yourself, or if you are fortunate enough to have the help of another or others, it can speed up the process. 🙂