Am I perceived as human or just machine?
CONTEXT:
My OH is currently in his third month in hospital having had emergency spinal surgery to stop him becoming paralysed. He is now in a wheelchair, has lost bladder and bowel function and is in physio. It looks like he will spend another 6 weeks in hospital before discharge but whether this will be in a wheelchair, using a zimmer frame, or crutches it is not known.
From an autistic perspective this has been a disorientating few months. Juggling work, hospital visits and childcare responsibilities. The hospital environment, the noise, the lack of information about what is happening in terms of my OHs progress and its likely outcome. The progress side of things is an unknown as it is a case of waiting for the body to recover itself and the extent of that is not known. The uncertainty is a real challenge - I don't have the facts, I don't know what the outcome will be, or the impact.
As the partner I have visited the hospital six days out of seven and have done so in isolation. He has had visitors - friends, family, his mum, daughter etc as well and it is good that they visit and find out how he is. It sounds really selfish to say this but -gulp- no one asks if I am ok? if I am coping? If they can help? - Is that just people being people or am I meant to be a muted machine and get on with it?
I mask, I "get on with it" - I seemed to be perceived as a safe pair of hands that will do what is required. I have always facilitated to suit the needs of others. But, surely there is a point where I am cut some slack?
I don't know what is expected of me as i haven't done this before. The hospital team just get on with it as my OH is just another patient. My OH doesn't open up and talk about things and sometimes asks if I am ok, and when I reply "no" - Why, what is it now? - is the usual reply. it seems that the expectation is just to be quiet and get on with it.
Before he went into hospital he had a lot of back pain and the relationship was challenging - occasions of physical and sexual abuse, coercive control, narcissistic behaviour. I am worried what he will be like when discharged. If in a wheelchair he will have less physical freedoms - thus making him more frustrated and likely to curtail mine even more. If unable to work I will need to fill the financial gap and I already work two jobs. Being in hospital and in a wheelchair has meant that some days he is kind, others verbally cruel and accusative (i.e. Am I going to leave him?, What do you mean that you're not coming to visit me tomorrow? (I'm knackered)). His personality is such that he seems unable to perceive anyone else's needs but his own - like a cuckoo in a nest. Some of you reading this may have already made that conclusion about me....
Today we have a meeting with the Clinical Psychologist. I asked if he could be referred as the care at the hospital has been about his physical wellbeing and I wanted him to receive support on the emotional and psychological side - i.e. what if he will remain unable to walk or not return to work....
Do I remain mute in the meeting, is it my place to say anything and be frank with them - is it likely to cause me future risk if I do.
For example:
- Two weeks before he went into hospital he threatened to beat me with his metal walking stick - on his exit from hospital he could still hard me - just because his legs don't work doesn't mean that his upper body strength is not there.
- On the sexual side of the relationship - if he has lost sexual function, he can still hurt me.Sex is a big thing for him his temperament is not going to be great if he is unable to "get it"
My OH is aware that I might speak up. Thus he has been "nice" during the last week. Throughout his stay in hospital I have had abusive text messages, incessant phone calls, been accused of trying to leave him, and he still micro manages things from his hospital bed - i.e. visitors, what I eat, I lost my car 6 weeks ago as it was taken away to be MOT'd. Any nasty comments from the day before, seem forgotten in a split second by him just as any non-verbal acts have. "Well, you wound me up, didn't you?" This all messes with this mixed up aspie head who just wants some stability and certainty.
This post all sounds very selfish, doesn't it? But bottom line I am scared and am fearful about coping with it all and becoming so ground down by it. If I am unable to cope is it a failing on my part? Am i a bad person? I can imagine the accusive statements already from others. Does this just seem worse because I am aspie? Maybe I am just a big wimp!
I don't know - which I why I post this looking for any advice. It might just be that I am overly emotionally and physically tired and just being a wuss!
thoughts welcome.
