It has taken me a long time to realise this, but what I’ve often classed as selfishness in myself when faced with a challenging life situation that calls for more resources than I actually have spare, is in fact my psyche’s way of trying to save me from it.
The trouble is, it feels exactly the same! And I’ve probably given myself no end of grief for it over the years, and imagined, nay expected the judgement and resentment of others too. The trouble is if you act from a place of an inner sense of guilt, people tend to treat you accordingly, unless you’re honest about it.
We can all have selfish moments at times, we’re only human. But it’s not until I delve below the squirming, guilt ridden ‘ohhh I really don’t want to do this’ feeling, and ask myself – not wanting to aside, are you able? – that I generally realise, that either I’m in no way able, or I am just about but it’s going to cost me dearly, or, even more annoyingly, I can’t call it, it could go either way and I won’t know until I try to meet the challenge and then the damage is done to my health/I’ll be no good to man nor beast either. The stress and sense of guilt when trying to decide where on that scale I currently fall, is enough to knock me all on its own. The joys of almost zero tolerance to stressors!
I’ve been up against this one A LOT over the past six or so weeks, as my partner has unfortunately had to spend a significant amount of that time in hospital for various and ongoing reasons, and I’ve been mid or boarderline crashed, and unable to travel to where he is under my own steam, let alone be of any use to him if I could get there.
Let me lay out for you what it feels like to know that: his condition is such that being on a normal ward with a general staff, as good and as caring as they may be, particularly one that changes shift and therefore nurses pretty much every day, he’s not going to get all of his needs met. He just isn’t. Fact. That his sheer lack of ability to communicate sufficiently with anyone is not just a frustration, it’s potentially dangerous. When you’re well aware, through numerous hospital stays of his that you’ve been present for in the past, and those of others you’ve supported, and your own experience of hospitals even as an out patient, that the staff are over stretched, stressed and undersupported. You know that his care needs are complex and challenging to get right, and really take a good degree of familiarity with him to have any chance of getting right, a familiarity that just isn’t going to happen in a ward setting or time frame. You know that where hospitals are concerned, he can develope almost a PTSD level of anxiety about being there ( unsurprisingly), and that the number of people close enough to him to know those things about him are few, and not always available, and you, with the best will in the world, cannot get there. Try that on for size.
So when I get the dreaded news, which I’ve had to hear down the phone three times this past few weeks, that he needs to be admitted, I am hit by the same posionous cocktail of emotions. And I have to say that on the top of them is instantly “Oh no, I can’t deal with this”, straight away followed by guilt about feeling that way, and at the same time, worry about what might be wrong with him, the awful awareness that he’ll be dreading it even more than I am, and lastly, what can I do, who can I ring… what now what now what now…?
I always think to myself, am I some sort of uncaring bitch, to feel that way? But this doesn’t bear out when I hold it up against all the things I have managed to do for him and others, even when I don’t always feel very able, or it doesn’t feel “heartfelt”. This isn’t coldness, so much as self preservation. Those kinds of emotions are hugely draining, empathy, care, fear, anxiety, and I need all my energy to cope and make the things happen that need to happen for him, no matter what I’m feeling about it.
I think I’ve always been a bit that way, do what needs to be done first, fall apart later. But I believe this defence mechanism may have become more honed since my illness. It’s not just my own emotional state I’m trying to protect anymore… The trouble is, there’s a limit to what I can do. I know how challenging it is to take care of him. I know at times I can do it short term and at times it brings me to breaking point on every level, more so when he’s in hospital.
So I’m left in this limbo of waiting and hovering on the uncertainty of my own ability to be there, a cycle of guilt and striving and trying and then of failing and crashing. I have to learn to try and get things done via others, on the end of a phone, with my best communication skills, to constantly try to keep everyone in the loop because I know that things go missing in “handovers” between shifts, and there is SO much that they have to try and hold on to… I’m left to wonder what others think of my absense in any literal sense, to wonder if they really understand, if HE really understands when he’s feeling so vulnerable, or if I’m just not trying hard enough out of the fear that I can’t cope with it. It’s basically a sea of frustration, guilt and anxiety with the added awareness that this alone will be leaching my resources, punctuated by semi respite provided by low dose anti anxiety meds, whilst trying to keep those doses the right side of addiction, something I’ve managed to achieve thus far by some miracle!
You have to relinquish so much control in these situations, just as he has no choice but to do with the staff who are caring for him. This would be easy if they were all furnished with my knowledge of him, my deep understanding of his condition (because it needs to be deep) and the time and energy to really keep on top of all of his needs… but I know that with the best will in the world, this is unlikely the case.
It never ceases to amase me how people manage to be parents with this condition. I can’t begin to imagine… well, I can, and I don’t know how they do it! I wonder how much of these life challenges are keeping us ill for those of us who have the capacity to recover, or are making us worse some of the time.
But you can’t not do life. And you can’t avoid challenge. All you can do is buffer yourself as best you can. Sometimes that does mean putting yourself first, other times it’s just the recognition and acceptance that, even if you were prepared to risk making yourself worse, you just don’t have it in you to do so today.
I guess at the end of the day it’s not selfish so much as self – full. There is this idea that self sacrifice is noble and commendable which it is, but you must be prepared to sacrifice for the self also, in fact, sometimes there is no other choice. You don’t always get to choose who you put first. When you can be there for others, do so to the best of your ability, when you can’t, accept that you’re going to feel like shit about it, but it doesn’t mean that you are shit, and recognise that the fact that you feel shit about it, is proof that you’re not such a selfish bitch after all!
My heart and mind are trying to write cheques that my body just can’t cashand it may just break my brain. I could no more do the things I wish or need to do right now than I could get up and walk with two bust legs.
As the need of a loved one grows even greater, my ability to meet that need does not. This is a bleak reality and one that’s hard to bear.
I am aware that even the many calls I am making and correspondants I am sending out to try to get this vast mountain moved, are costing me. All energy reserves have been scraped together to fuel those things, rather than getting dressed, or doing any washing up etc, or eating properly, although to be fair that’s also down to nerves. Those are costing me too, they’re certainly preventing me from being able to get ahead in terms of clawing back any strength. Anxiety eats it for breakfast in vast quantities and I can’t switch it off, not even with the meds.
People say take it easy, they say try to rest so that you can be there, but that’s like asking some one to stick their head under water and breath! These awful predicataments are by their nature, stressful, anxiety making, and energy sapping, even at a distance. You can never recoupe while the worry is there, and it’s there if I’m present at the bedside or not. And we have no tolerance for that, our Fight or Flight response is always turned up way too high to begin with, and each time the dial is turned further, more damage can be done, and more energy lost.
It costs people like me, perhaps the same as it would some one healthy, who had been physically attending the bedside every day for weeks, or however long before the burn out came, and that’s even before I’ve set foot outside the house. I’m already in that place. It’s my starting place. It’s such a useless place to be, although I know that I’m being of some use, and what I’m doing still needs doing as well as his actual hands on care. But it still feels feable and I still feel impotent, and constantly twitchy as I try to think of something else that I can do. The initial burst of adrenalin that has got me there in the past, is long since used up, leaving more exhaution in it’s wake.
You might think that if I stopped doing all of these things that I’m doing behind the scenes, I might have the energy to go and be by the bedside… oh how I wish it worked that way. The mind never stops whirring, the heart never stops thumping away like a lunatic thing inside my chest, even with anti anxiety meds, and I’m still throttled by my own sense of guilt and driven nuts by these useless weighed down limbs, and a head that swims just on the trip between here and the kitchen… All of these things only sap ones strength more. It’s the old and viscious cycle.
This is how it is, to be caught between the rock and the hard place. We find ourselves in that spot for all sorts of reasons on the road through this condition, but no time is it more painful than when it involves the well being of another who is currently sicker than us. If only that meant being the weller of the two, made me as capable as I’m called upon to be.
Meanwhile I’m trying to draw lines in a shifting sand, even with what I’m doing I don’t know how much is too much until I just suddenly shut down. And because the sand is shifting, I can’t see how close I am to that line. We can go on and go on until suddenly we just can’t anymore. I fear that happening, I fear reaching the point that I can’t even make a phone call and I can’ feel it breathing down my neck all of the time… it would feel like I’ve just let him adrift. Of course he doesn’t only have me, and my appreciation for that can’t be put into words, but it would still feel that way were I to break my own limits one day. Letting go of this life raft he’s bobbing about in is not an option, but trying to keep myself afloat too is essential. ESSENTIAL. I can’t really gauge how well I’m achieving that at the moment. Chuck us that life buoy for fucks sake!