Tuesday, January 10, 2017

MS thoughts #2

So I've tried to speak about how to cope with knowing your partner has MS.
I don't want to sound like whiner or undermine what Jen goes through, but I need to air this, and maybe save someone else from becoming as embittered, cynical and hardened as I am.
To be honest there are a damned lot of times I struggle to cope, I won't lie, its taken a horrendous mental toll.

Watching someone slowly lose their mobility isn't easy, especially when you see the statistics...
50% of RRMS sufferers go to SPMS within 10 years, and 90% within 25 years....not really great odds and persistently the elephant in the room...constant uncertainty is what wears you down, not knowing. At least with a roadmap you know what to expect, but with MS its always ready to throw you an unpleasant curve ball when you least expect it.

Jen copes admirably...me on the other hand, I feel worn down, burnt out, bitter, angry at everything and nothing at the same time...an unfocused rage with no one target I can aim at and blame for how I feel..

Lately I've found myself disillusioned with many things and feeling listless and aimless, can't pursue a career as I don't know from one to the next what help Jen will need or whether she will end up in the hospital and end up discharged at 5am. I'm tired but I don't want to go to bed, I find myself sitting up late and doing nothing and then by the morning I'm exhausted, just want to sleep and achieve nothing. It's a vicious nasty cycle and with no way of getting off this evil roundabout. I feel afraid at times to do anything....that doing nothing is the only way to retain some form of control over whats going on, to stop things completely falling apart and collapsing in on me.

Before someone says "Get professional help" - I have, both from a certified psychologist and a counselling service, the counselling service wanted to fix me before they had heard the problem (Cognitive Behavioural Therapy seemingly is their mantra...otherwise known in my world as Bullshit), the psychologist at least listened, wasn't sure what she could do, decided that any treatment she could offer would be pointless as they were all talking therapies and I'd simply turn things into a debate (not that there was anything wrong with that, the world needs stubborn people she reckoned), oh and she was surprised that I had managed to restrict myself to shouting at people and ranting about the world, seemingly others with the stress factors I have in my life (I have others...I'm a special case) often end up thumping someone...haven't got there, though the thought seems attractive at times...shame the rest of the world doesn't agree with the concept...perhaps the world would be a better place if people got hit every so often...

I also suffer from GAD - Generalised Anxiety Disorder, Social Anxiety, Fibromyalgia, chronic pain, esoniphilic esophagitis, more allergies than I can shake a stick at. I take more meds than Jen does..now that is scary stuff...

I'll not lie..the future terrifies the hell out of me, well and truly, everyday I wonder what crappy thing is going to happen next...I constantly feel like I'm walking blindfolded through a densely packed minefield just waiting to stand on the next one and blow myself to pieces.
(3 years of living next to some of the most horrid people on this earth have taught me that people are shits and just when you think someone can't do anything more terrible, they will and that so called pillars of the community and senior citizens are more often than not - nasty, bigoted monsters who will start a hate campaign and resort to filing the most terrible reports with the council, the police and more, accussing you of horrific things to turn others against you and to ruin your name.)

If someone was to ask me which TV character I most identify with, I'd have to say House, I can to a degree see life from his POV, albeit I'm not a Dr, nor as well paid.....

Part of me wonders where the last 10 years have gone, it often feels like.........everything since 2007 has been in Fast Forward, with time running away from me and feeling like I'm running to stand still, but still everything is rapidly running out of my control and there is nothing I can do.

There are times I just want to punch a wall or something or beat the hell out of something with a crowbar, its like there is just the well of pain, anger, rage, helplessness within me that I have no idea what to do with or idea how to escape from. Do I want anyone's help? No, not really, I've learned the hard way that the one person I can depend on, is myself, that everyone else struggles to do what you ask them to and no more, they all too often want to do what they think is right or do something you haven't asked them to nor want them to do and they then get butt-hurt and turn it on you "I was just trying to help"

The future tbh is something that scares the bloody hell out of me well and truly.  I don't look forward to it at all, the idea of being old, frail and reliant on others is something that doesn't appeal to me at all, sitting in my own filth, forgotten and unwanted in some cesspit nursing home...no thanks...I think I'd rather play chicken with an express train tbh...people might say that's crazy, but better than eking out every last second for fear of being sent to hell or purgatory. I don't believe in any religion, quite often I think religion is for the weak minded and those lacking moral fibre and therefore hide behind their chosen sky fairy, like a toddler hides behind its mother's apron or sucks on their thumb (yeah thats controversial, I told you at the start that I'm bitter and cynical)

The world is overpopulated and despite their claims, most "professional carers" are anything but, all too often I see uncaring medics, treating vulnerable patients like sacks of meat to be ignored or medicated into silence.

Jen has me to speak up for her and protect her, but I don't want to end up old, surrounded by bigoted geriatrics & the god squad and with no one to speak up for me, waiting for it all to end. I'd rather pick my own time to go tbh.

So why don't I just end it all? Well because I do believe in my marriage vows, in sickness and in health, till death us do part. Oh yeah and the dog, no one else would put up with her drooling, barking and fussy eating habits (no seriously no one else would, they would waste their time trying to get her "trained" into some robot hound that does inane and pointless "tricks")

So I guess for the moment the world is stuck with me and will have to deal with it as much as it grinds the gears of various public servants, council workers and other assorted public and private sector lackeys. I'll freely admit I get perverse enjoyment out of raising the blood pressure of some apparatchik who has raised my blood pressure and gotten under my skin, albeit alas as yet I've not succeeded in reducing anyone to tears..well not yet anyway, nor anyone going off on long term sick or quitting after dealing with the delights of dealing with me.

As stupid as this sounds...I generally prefer dogs over people and massively so. Dogs are simple, people are complex and often they take a perfectly good dog and make it into an asshole just like they are.

So there concludes a look into the scary world of my head.....sleep tight won't you...


Julie Ford Oliver said...

A very brave and true post. There are people who relate to everything you wrote.
You are not alone. I shared it with a close friend who cried and said it helped her. Her husband has ALS
Thank you for your honesty.

2paw said...

I see the carers at out Leukaemia Support group and we have some special education and sessions for them: life sucks sometimes. It is not easy being the person who is caring or the one being cared for.