It’s two in the morning and all I want to do is get out, go for a walk, find fresh air. I want to clear my head, try to make sense of what I am feeling. But I’m not feeling anything; I am numb and empty. And my body is too weak to go anywhere. I just lie here, hoping that this too will pass. I don’t even have the strength to hope. I just lie here and wait. Sometimes tears escape my eyes then they backfill, stinging. I have no strength for this pain. I feel nothing; just suspended in time. Lonely, disconnected from everything around me. Some things never change. I am lost. I am broken. And too afraid to feel. I will be ripped open and there’s already nothing left of me as it is. I am broken. I cannot be mended. And my body has given out, given up. I don’t know which. The pains, they never leave me alone. I grieve. I have my slumps. But this feels like some deeper monster about to burst forth. And I’m scared. I want to be done with all that. I am broken enough already. And if I cry, who will stop the tears for me? I can’t. I don’t want to be brave and I have to be if I go outside so I will just lie here with my pain and weep. I don’t have the strength to fight it or to make sense of it or anything. There are too many exhaustions. The night is very dark. But there will be a morning. One day.
… knitting is good for you!
~ Trigger Alert ~
Tall, skinny, fair … I had it all. The only problem was that those adjectives only applied in my family; anyone over five foot and less than a size eighteen qualified. To the rest of the world, what was I? What am I?
I’ve always struggled to see myself from the outside. I know myself quite well from the inside and I wish that was the part more people focused on or took their first impressions from. In my mind, I’m just some sort of amorphous gingerbread person and that kind of works for me. Until I come face to face with a mirror or have to make some kind of superlative effort for an event or do or some such. Then I struggle. I struggle a lot.
I don’t understand the how much less the why of the external. It confuses me when I try to approach the subject, I can’t get an easy handle on it. I’m aware that females of the species do seem to spend extended periods of their childhood or adolescence practicing hairdos and face painting. I seem to have missed that memo. It was never on my to do list. Maybe it’s me. Maybe I just had other things to deal with as a teenager. But part of me always ends up asking ‘why should I bother?’ and I don’t have any answers for myself because I don’t even know quite what that questions involves.
I think it sucks that women, in particular, are constantly bombarded with unattainable, unrealistic messages from some disturbed authority about who they should be, how they should, what they should look like. I don’t buy in to that. So I ask myself ‘why do I want to try to look good?’ Am I doing for others, because ‘society’ tells me that I should? If I’m honest, I know that the ideal shape in an ideal world is straight up, straight down and skinny with it. That’s my ideal world, not anyone else’s. I’m a little envious of anyone who has this shape. Simply because it would make clothes buying a lot easier. But do I desire to be that shape? Do I expect everyone to be this shape? No. When I cast my mind over people that I know, a few of them are but most of them are not. I do not think worse or less of the others. It doesn’t exactly feature in my mental top trumps list of attributes for anyone. I value the inside more.
So if I’m not doing for others, who am I doing it for? Is it alright to want to feel nice, to look good simply for oneself? Is that not vanity or pride? I eschew both of those. I’m pretty good at self-neglect. Most of the daily, never-ending rituals of hygiene and prettification become wearisome and boring to me. Should I make an effort? Why?
I want to be the girl I was once. For a brief window in my early twenties, I seemed to have it all. I was a happy size eight. A size that I had never even been raised to contemplate. But then my physical health was fairly good; I was active – dance and movement classes; walking; even some football. I was busy. I was young.
I like to be ‘skinny’ simply because it makes me different from the rest of my family. I associate it with being healthy, with being active and with being in control. They are all things that I wish for right now. But my life has changed. My health has changed. Nearly a decade on, how can I be the same person?
I don’t want this to be a slippery slope, an upwards descent to ever larger clothes sizes. I don’t want people saying things like ‘I told you so, I knew it would catch up with you one day’. I don’t want that. But what can I do?
I never know whether it’s the clothes that are getting tighter or whether they just feel tight. (Mongrel beast’s good old allodynia is alive and well). Sizes are getting smaller too. I have some old pairs of jeans in the cupboard (they’re all worn out now) and they’re all the same brand, all the same size but there’s a difference of about two inches from the skinniest to the widest. A straight up, straight down skinny friend of mine told me that her jeans were a size twelve. I wondered what hope there was for me then when she’s like a quarter of the size I am. Am I destined for a not-yet-invented size forty-eight or something?!
This body of mine is Chronically Ill. I don’t have the choice to exercise. Some days (alright, some weeks even), exercise is trying to make it to the bathroom. I don’t do things for pleasure, for fun. I can’t walk into town for a bottle of milk. How am I meant to be in control of this body? This is a body that fights IBS, that bloats and swells; this is a body that fights ME, that sags and puffs. I have skin that shows every blemish and every mark. I have skin that hates stress.
I’m not in control of my body. I’m not in control of anything actually. And that frightens me sometimes. Being in control is important to me. So perhaps that’s why I’d like to claw a little something back, just something sometimes so that I can feel a little bit good about myself, about who I am. I get fed up of pyjamas and duvets and unbrushed hair. I want to be in control, I want to feel nice once in a while. Or at least kid myself that might be the case.
Looking back, I’m not entirely sure if I ever really enjoyed the seesaw; it was probably the biggest ‘thrill’ ride of the playground (those rusty, heavy roundabouts required a strong and enthusiastic being to go anything faster than a revolving display unit) but I’ve never been one for thrills. (Or frills, for that matter). There wasn’t much grace or control to the seesaw, you were dependant on either the steadying force of an adult or the out-of-control competition that spiralled as soon as you were placed opposite your sibling. What was the point of the seesaw? To see how high you could go (with a bump)? Or to see how hard you could hit the ground, or get the other person to (with an even harder bump)?
It seems that balance has long been a theme in my life, or perhaps, more accurately, an issue. And like being on that seesaw, it can often feel like someone else, something else, but definitely not me, is in control. Do you hit the ground with a clunk and jar or are you left stranded high in the air? And are the only choices the one or the other? Can you balance?
My life often feels like I’m riding that seesaw. Or is ‘riding’ too active? Because it doesn’t feel like I’m in control, I’m just sitting on it, unable to get off, getting bumped by one extreme or another.
I hate that.
I’ve been struggling. I’ve not been as well as I’d have liked. Then there was a crazy episode of Anxiety with a capital A. There’s been all sorts of other hiccups and stresses but it doesn’t ever seem to be getting any better. I want improvement. I want things to be better. It’s hard living, surviving, between one crisis and another, getting bumped and jarred, lurching between one disaster and another.
I want to get down.
I feel so guilty that I’ve struggled to write this update, it feels as if I’m admitting my criminal irresponsibility and negligence to the world. And you know where to find me. Did you know that it is a criminal offence to release either a hand reared or a casualty animal when it doesn’t have as equal a chance as it’s (naturally raised, non intervened) peers? Puts quite an edge on it.
We checked the weather forecast before starting our release, rain but that’s nothing new in this country, and we had to balance it with the itching need of these fledglings to get out. We’d had to shut the curtains to stop them crashing into the glass and they kept bonking their heads on the ceiling. It was definitely their time for more space. Rain is not unusual and even more unfortunately, it’s unlikely to go away completely. That’s real freak weather conditions otherwise. Besides, the door would remain open and food provided. They could always shelter here too. That’s more than other fledglings would have.
That’s what we told ourselves. Maybe we were irresponsible, maybe we were inexperienced, maybe we were impatient, maybe we were stupid. I don’t know. Do birdy parents check the forecast before allowing their babies out of the nest?
Hindsight is a great thing to torture yourself with.
Wednesday evening we had all four back in then one went back out. He didn’t come home to roost at bedtime so we had to hope that he had found a safe roost elsewhere. It was dry at the time too. And really, that’s kind of what you want them to do.
Thursday morning was still dry, overcast with a threat of rain. The forecast said rain again. I tell myself now that I should have read through the news, maybe there would have been an article about the weather already hitting the furthest point of the peninsula, two counties south. I don’t know. I tell myself that I should have done something different. I tell myself that I should have kept the door shut that morning and not have let the other three fly free like they did.
The storm came in like I don’t what. It was the kind of storm that would have taken you by surprise in October. Three months on when the fledglings would have been bigger and stronger, more savvy too. I can’t remember one like it. Especially not in June.
To give you an idea of how bad it was and to torture myself a little more over my negligence, we have an enclosed balcony which keeps fairly dry. To have the rain splash the bedroom window three feet inside, the wind has to be coming from a certain angle and be pretty hard. It doesn’t happen much. Yesterday the rain was lashing against the window and the balcony floor was awash.
We kept the door open, the rain driving into the sitting room, hoping against hope.
Maybe they found somewhere to roost.
But now the biggest threat to our babies is exposure.
I feel so terribly. I took my eye off the ball, I lost focus. I should have checked the news or the forecast better. I should have done something, done something differently, anything. Because it is my responsibility.
I failed our babies.
Being a carer is something that I’ve written about before, about how it can be a much broader role than is first perceived, especially when we focus only on a professional home-help for the disabled or elderly. Modern life likes things appropriately pigeon-holed and boxed but such attitudes rarely do justice to the reality nor anyone any favours. We all should be carers really, people who care, every day of our lives. But there is more to ‘caring’ then just its root meaning.
Although I am not claiming that parenting is simple, when it comes to ‘caring’ I would suggest that the parenting role is the simplest. It’s the most easily defined and recognisable. You are meant to care for your children, you could say that it’s almost an intuitive response. You have the support of individuals and organisations. You have specific goals and timeframes.
When it comes to adult ‘caring’ then things get more complicated. A lot more complicated.
Why is that?
The person who is receiving the care is not a dependent minor. They may well have known a long life of maturity, independence and responsibility before suddenly finding themselves in need of care. Having to hand over their life along with any remaining dignity doesn’t put them in an easy position. Without even thinking of the physical changes, any change of health has huge emotional and mental consequences. And not just for the sufferer themselves. The carer is often a family member who has likewise been precipitated just as suddenly into this new arrangement. In fact, the carer may have previously been the dependent party in the relationship. What happens when your full-time breadwinner is too ill to work? Or is the sole driver in the family?
Just as the ill person needs to adjust so to does the carer. And that adjustment will need to be done together, there needs to be dialogue, meaningful communication. The process can even be similar to grieving. And you have to accept that both of you will be seeing, feeling and dealing with the situation differently.
It’s not easy living with a serious and or long-term health condition. I know that. But the ill person usually is best placed to receive appropriate support and treatment. What is on offer for the carer? Precious little. In the best scenario, they will have the full support of the person they are caring for but maybe not.
Carers have to walk a fine line, carving out a new role for themselves even if the relationship is falling apart around them for whatever reasons. They may be taking on all the responsibility, the duties that come with sickness whilst the person who is actually ill is practically delusional as to the reality or seriousness of their illness. And what point does a carer become a nagger, a paranoid observer or a call-the-doctor-right-now hysteric? Usually at a different point to the person they are caring for.
It needs open and frank communication between both parties, that’s for sure. The ill need to accept their limitations and know when and how to ask for the help to need. Because that carer needs all the help they can get in knowing what to do.
Mental health makes the challenge even harder.
What do you do when your loved one refuses to seek treatment or acknowledge their decreasing state of health? How do you balance motivating them yet not overburdening either them or yourself? Do you take responsibility for getting every single pill into them, for them getting to every single appointment? Do you remain on high alert even when they’re swearing that they’re fine?
It’s hard to find a balance as a carer. You may have lost your best friend, your own support system. You are lost and alone in a place that has no name, no map, no solutions. You may or may not have the cooperation of the person you are caring for.
But the worst is the endless, draining, exhausting level of responsibility and pressure that you have to live with day in, day out. Sometimes it feels like someone else’s life is in your hands, everything you do, say or even think seems to be a determiner in their state of health, maybe even their survival. You find yourself taking on more and more, tasks that you never used to have to do yourself, tasks that you maybe didn’t even know needed doing. There is not a moment off-duty, you are permanently tuned in to their every symptom, reaction, feeling, whim, want, need, you name it. Even when you’re apart. Sometimes being apart is worse, the fear, the dread, it eats away at you.
And then there’s the emotions that goes with that endless, draining, exhausting rollercoaster. Sometimes bitterness seeps in as you wonder whether they couldn’t just make more of an effort, whether life really needs to be this way, a bitterness tinged with then quickly replaced by guilt and shame. The loneliness that sets in as your loved one withdraws from the world then from you. The pain and confusion of reactions, words and behaviours that would have once been incredibly alien. A fear for the present never mind the future, the future is too far away and unfathomable as you subconsciously scrutinise everything, analysing and recording, noting each subtle change, holding onto each one like time-lapse cloud patterns. The thousand and one worries that are yours and yours alone as seemingly the only responsible adult around, the financial, the administrative, the domestic, everything is on your shoulders, it is your burden to manage.
The pressure is overwhelming and ceaseless. There is no hope. Just endless cycles where good days see m far and few between.
But who cares for the carers?
While most of us wouldn’t be ‘glad’ that our loved one is ill, we do ‘gladly’ take on the challenge. Why? Because we care. We do everything and more because we care.
But our resources sadly are limited. We are human. Love doesn’t make us perfect. Or bestow some super power or immortality or whatever else is needed to care day in, day out, year after year.
That’s a scary and humbling and shaming thing to admit.
But carers can’t go on forever without rest or support. Especially when that’s not the only thing that they themselves are facing, their health may break or they may have other responsibilities and commitments to juggle with or some other crisis to deal with.
Who cares for the carers?
What help and support is given to them? Where can they turn when they have reached the thousandth breaking point and just don’t know how much longer or further they can go on? Who will listen to them? Who will relieve them of their burdens? Who will give them a supporting hand?
Carers do an awful lot, normally behind the scenes. They are stage managers who also run the lighting and sound whilst building all the scenery, rehearsing the actors and choreographing the dancers, learning understudy, drumming up support and backing and leading the marketing campaign. They do everything. Usually single-handedly. It’s fine for a while and the show goes on. But for how long?
Please remember the carers in your midst, appreciate them. Spoil them every so often, make sure that they have an evening off or a listening ear. And if you ever need someone to care for you, man up and work with them. Trust them and reassure them.
Please care for the carers. We all owe them such a lot.
I’m very tired this morning so I’m not sure if anything I write is going to make sense, just to warn you all, and I should really be cleaning the kitchen because it looks like a flour tornado has passed through there. I don’t think the flour can be blamed by itself because it only behaves in this way in my presence. As for me myself, I looked like I had wallowed in the stuff. And dough. Fortunately, however, it is a lot quicker and easier to change myself than it is to clean the kitchen. Unfortunately.
I find it very difficult to talk about current problems, maybe because I just try to block it all off. Which is obviously a great coping mechanism. I’m also only just starting to process through some of the thoughts and realisations so not all the ideas that I’m planning to talk about have been fully developed just yet. But I need to get this off my chest, out of my head so I’m going to offer up another ‘whinge’ post. It’s a follow-up to yesterday’s post. That was, if you will, the back story and today I’m going to develop some of my thoughts and analysis (don’t expect anything profound even if I did use that word) of the situation.
My sense of humour survives but even it is sorely tried by this ongoing saga. There is only so much that I and it can take and we are being pushed to the outer limits of our limits. The problem is that the whole thing has become a constant nag on the spirit, the soul. And never-ending. Losing hope is the worst thing in the world.
Other People’s Views
Despite the ordinate amount of money the statistics say that people spend in this country on DIY and the Bank Holiday rituals and festivals of DIY, a lot of people who I meet and who talk to me seem to think that it’s a complete waste of time and effort as well as a sign of some over-proud, materialistic urge to want your house to look ‘nice’. There was a brief spell in the early 90s when turning each room of the house into an encyclopaedia of paint effects and a smorgasbord of draperies was popular and that trend has resurfaced, although in other manifestations such as the overblown patterned wallpapers, during the Recession, nesting perhaps becomes important when everything else is going down the plughole. Wanting to do more than slap the infamous magnolia paint across every wall in the house and laying cheap white tiles in the bathroom is something of a vanity. A luxurious vanity. Of people who have obviously got their priorities seriously messed up. We tried to find a bathtub which would fit in our bathroom, preferably also sized to allow us to have a basin in the room too. There are some fairly short models but they were all too wide to fit between the wall and the door frame. Seriously. So we decided that we’d just fit a shower enclosure. Because there was only going to be a shower, we opted to buy a double-sized tray. Why would we do that? Showers should be this size (please imagine the appropriate hand gestures). A luxurious vanity. Probably delusional too. Large showers also seem to be perceived as kinky and perverse as the American hot tub, for some reason. (No, I can’t fathom the workings of the stereotypical English mind either). Nor are you meant to rip out entire rooms. The English are great believers in the grin-and-bear-it ethos. When passing judgement on other people, they therefore conclude that you had no pressing need to do the work which you were forced into starting by some such disaster or another. You really should have asked your friend or elative’s permission before starting. They would have probably told you it was fine, you can survive.
Even though, ironically, another faction are pressurising you to do all the work right now regardless of necessity, budget, time or anything else. They egg you on, telling you that you’re a failure whilst the work isn’t finished, that it’s no way to live. They lend money, they lend support. But walk out the door the moment that they’re actually needed.
Other people will wear you out with their views. Most of them will condemn you or judge you but they never really help. Other people induce the guilt that you have to live with day in, day out. Other people make you question everything you’ve ever done and all your values. Other people mess with your head and your house.
Other People’s Help
Other people, as we have seen, are very willing to offer up their views on anything. But only when it’s negative. (It again seems to be a quirk of the stereotypical English. They’re quite happy to bawl abuse at you for wearing a Western hat from across the street, despite the fact that they’ve never met you, but to offer up a compliment requires much blushing, stammering of apologies and many excuses). They will give advice and make all sorts of suggestions with authority. It’s only months later that you find out that their expert opinion was actually erroneous. Usually when it’s gone completely belly up.
There are people who are quick to help, the generous so-called Good Samaritans who promise time, resources, labour with enthusiasm. Many times they never deliver. Other times they kindly start and then leave. Do you trust these people and allow them to walk their hobnail boots all over your home, your heart and your mind? Disappointment is a terrible thing to leave with. And you end up wondering if you should trust anyone at all. Because even the tradesmen who’ve come through haven’t always been up to the job.
Oh, yes, other people mess with your home and your head.
Who Should Do the Work?
I don’t particularly trust tradesmen, nothing personal, it’s just the way I am. I’d rather get on with things myself. There are people who I have trusted, people who have helped. They’re people that I’ve really respected. But it hasn’t been repaid. The people who have helped have marched in with the attitude that we’re useless, clueless and entirely dependant on them. That’s not a pleasant thing to live with. It is rather irksome. I don’t believe having a slightly greater knowledge in some specialist area of DIY makes anyone a better person. If you show me, I will learn, I can be taught. But no, they treat us as imbeciles. Before leaving us in the lurch again.
We were happy to potter at the work, doing it at the weekends and on days-off, when we had the money too. But of course it’s different when you suddenly find yourselves confronted with a major disaster and of course everything changed when husband lost his job.
I grew up in a house that was slowly being renovated from a state of dereliction. I made my first dry stone wall at two. Across the patio. Despite the fact that I wear a skirt, I am not useless. I rather object to being treated as useless. The people who have helped make this assumption and shoulder me out of the project. Now hubby is brilliant at the manual labour side of it, he’s strong and tough, far more so than me, especially when ME strikes. He pays fastidious attention to detail too (which is why it breaks his heart to have the place like this, to have cowboys wander on in and trash the place in their efforts to make it better). But if I’m honest, I don’t think he has as much knowledge and experience. But they’ll work with him because he wears trousers. Isn’t gender bias fun? Drives me nuts.
We could do the work but husband is too ill now, too disheartened too. I know how to do the work, I want to do the work but … always that but, isn’t there? It’s not because I wear a skirt but it’s because I too am ill. I feel so guilty and useless that I can’t do more. I’m absolutely itching to do it. Especially because I know it would help hubby feel so much better. But do you know how bad my health is when it comes to this stuff? When we were doing the sitting room a year or so ago, I was ‘well’. I was able to help with the painting. Now painting is the easiest, most basic DIY task on the planet. I’d have to sit on my low stool because I couldn’t stand to do it. So I’d work a section from the floor up to about 3, 4 feet. I’d have to concentrate really hard and the ‘pain’ I felt was crazy. If it was really good day, I could do an entire wall, some 2-3 metres along. Then I would have to go collapse on the bed. That was when I was ‘well’. I feel so useless. Conflicted too, because maybe I’m just proving that ‘skirts’ can’t do the work after all. I can’t lift, I can’t reach, I can’t turn things. Basic actions but so essential to DIY.
So who should do the work? I don’t know. I want to shout, me! I’ll do it! But I physically cannot. Maybe I can wait on other people’s promises, trust them to deliver like they haven’t on all the other things that they’ve already started. But I’ve lost faith. Home doesn’t feel like home anymore, it isn’t a sanctuary. And it’s the other people who have violated that.
But everyday I ask myself, ifI don’t do the work, who will?
I want the place ‘finished’ or even just the bathroom. I dream of being able to wash my hands in the bathroom, of having the luxury of getting up in the morning and splashing water on my face and brushing my teeth in the bathroom. I’m fed up of having toothbrushes by the kitchen sink. This is the stuff of my dreams. Crazy isn’t it? Just a basin, that’s all I want.
Do you know what? I have the basin. It’s been sat in my spare bedroom for three years. It’s beautiful. I chose it because it’s big and has a shallow slope perfect for handwashing and hairwashing. And you can get your hands in. The object of my desires is a handbasin. How bad is that?!
I don’t know what the future holds but I’d like to live in this house for a while before we had to go anywhere. I want to enjoy this place first, for this place to feel like the home we dreamt it to be.
I want the pressure to be taken off, we’ve lived like this for three years at least. And it’s a really heavy burden. It wears you out living like this with the constant presence of all that is wrong. I am exhausted by it, overwhelmed.
There’s another reason that this work needs to be done soon. It’s a worry that really is on my mind of late, well, it’s probably been there all along but I’ve finally cornered it and labelled it. The kind of stress that eats away at you like acid. We’ve been at risk of losing the place for a couple of years. We are still at risk. That’s a big enough worry. It’s actually quite a huge worry. But … there’s that but again … the place would need to be in saleable state. It’s in a worse condition than when we moved in. Excellent. So if not for anything else, the work has to be done soon. Because I really would like to live in my home before we lose it.