What's my age again?

I don't know if this is something that a lot of chronically sick young people feel or whether it's more me or the sort of person that I am, but inside I feel terribly old. About 80 or 90 I would guess. Part of it is physical, feeling stiff and achey, moving more slowly, thinking more slowly, part is lifestyle - my retired parents get around more than I do - spending so long in doctors' waiting rooms, listening to radio 4, knitting, taking so many pills, sitting in armchairs dozing gently.

This afternoon I was sitting in the garden in my folding canvas chair knitting while my dad gardened and I did feel so much like an old lady. Almost in a disembodied way, sitting in the early evening sunshine in my chair, while someone more active gardened, I felt like an old grandma.

It's also from feeling like I have been through so much and experienced so much and from so much time hanging out with people so much older than myself, mainly because they tend to have more time and do things more at my speed! I often feel quite cut off from people my own age, because I so rarely see anyone. Not meaning this to become another of those self-pitying "I'm so lonely" moans, but it's just how things are. I can't keep up with people my own age, not in walking down the street, not in doing things and not in the amount done per day.

But at the same time part of me periodically thinks, how did I become 24?! That's so old! It's mid-20s, not even early-20s anymore, heading towards 30, an adult. I'm not an adult. I'm not ready to be one of them yet. Confusing? You bet. And deep down inside there's still a small kid looking out at the world with big wondering eyes. Sometimes it feels like there's so many different identities in me.

So, I feel part 94, part 6, not much 24. Sometimes I get quite disorientated and can't remember what age I am, which group I belong to, can't understand why old ladies don't see me as one of them, when that's how I feel. Sometimes I see photos of what my old uni friends (or should that be people I used to know?) are getting up to and feel so sad at all the stuff I'm missing out on. I was looking forward to that first/second proper job and having fun at the weekend stage of life. Can't think about it too much or I get too down. Just have to keep trying to cope and survive and trust that someday, somehow things will get better. What else is there to do?

A few thoughts

First a poem:

Cat's Note
How often can you take a poem
and stroke it on your lap?

John Agard

Rather liked that, an amusing, intriguing little thought. The cat is of course, quite right, but then cats generally are right, they prefer it that way.

The major excitement in my life this week has been the opening of Waitrose in Croydon. For those not in the UK or not in the know this is a supermarket, generally seen as the "poshest", certainly it sells the best quality food and I am most excited and thrilled. I now have beautiful food for sale 10 minutes from my front door, I have a feeling this may make a slight dent in my finances. It is impressive how they have managed to make a formerly drab thoroughly depressing shop into a smart, classy little supermarket. It is the smallest Waitrose I've ever been in, but still stocks a good range of products. Their staff could do with a little more training, but no doubt that will come with time.

I've been a teeny bit less overwhelmingly exhausted today and no headache wooooooooo! Let's hope that continues tomorrow, I like being able to do something with my day, however small. Yet I'm starting to struggle with the heat, I'm beginning to conclude that my body simply does not have an optimum temperature, it is stuck in a permenant state of petulant disapproval and complaint, as hard to please as the Queen of Hearts in "Alice". Heigh-ho, can't get too fed up, or I'd never stop being fed up. Though sometimes that's how it feels. Yesterday I was so, so angry with feeling awful constantly, so sick of it, so fed up and yet there doesn't seem to be an end in sight, if nothing I get worse. I'm sure God knows what He's doing, it just all looks jolly odd from my perspective.

Where to trust

Baths are wonderful places to talk to God and get things straightened out. I was reading some more of the Eric Gaudion book (see previous posts) about healing and faith and Jesus. About how it isn't how much faith you have (see Jesus and mustard seed, Matthew 13 I think), but where you put it. And it clicked. Yet again I've been trying to put my faith and my trust in people, in friends, to stop me feeling lonely and down. But only Jesus can really solve those problems, properly. Friends are great things, they are gifts from God, but they can't solve problems in the same way that Jesus can.

So I said sorry to God for not trusting Him (again) and for trying to put my trust in people and for getting down and wallowing and for failing again and again. And then I said thank you for understanding and being patient and bearing with me even though I go around in little circles making the same mistakes again and again. And thank you for helping me to understand. And I put the next few days into His care, because me worrying about it can't change anything. And now I feel a lot better, like a weight's been lifted.

Therefore today's lesson is: I am a twit, God is good. I am also a slow learner, God is patient. Thank you God. (Lesson 3, I can't count because I've already listed two there... oops.)

I'm feeling rather fragile and vulnerable tonight. The parents have gone to visit a cousin and it seems like all my friends are someplace else. I haven't seen any friends since Thursday night, except for seeing Sheila from next door briefly today. Well that counts I suppose.

For some reason rather than being able to enjoy the time alone I'm feeling down and isolated and lonely. Lately I've been feeling very bored and generally fed up with life in general, not the sort of bored where you have nothing to do, but the sort where you have done everything you physically can do, and some things that stretched you quite a bit and now are fed up of all of them. This feeling has not helped mood and now having three empty days stretching before me seems like a miserable prospect. All the bad things, nasty thoughts, horrible things that have happened are coming back to haunt me. Suddenly I really miss Amy again, when I thought I was coping so well.

I'm feeling pretty alone and deserted and like everyone's gone away. I'm trying desperately hard not to feel sorry for myself, really I am, it might not sound like it. But I am. And before you ask, I'm praying too, or trying to, don't have many words to pray. Unless you count these ones, as a written prayer.

I've got to be able to cope by myself - my parents are going away again for most of next month and most of the month after. Perhaps things will look better in the morning? I do hope so.

Friendship

Today I spent most of the day feeling appalling with a headache and trying not to take the magic migraine pills, I finally gave up in the late afternoon and soon felt a million times better. However, I did get a decent rest in the earlier part of the day which was what I needed, my body was starting to shout "Oi you, slow down!". I haven't even been doing that much... and they say I'm well enough to work. I ask you *rolls eyes*

But lying in bed, staring into space, gave me time to think and today it has been about friendship. I should preface this by saying that I value friendship very highly and see it as very important. I am prepared to put real work and effort into a friendship, it's such an important human relationship. Again thinking about how downright rubbish it is when you have "friends" who are too "busy" ever to see you, or even contact you, even for so long as it takes to send a text message or email. I've gone on about this one before, but I still hate it. Jesus always managed to have time for people and didn't rush around like a madman, He knew when to stop and when to rest and when to spend time with God.

Another aspect of friendship I had a chew over today was about "seasons" for friendship and whether this is valid or just a pathetic excuse for when people can't be bothered to keep up with people. When I left Durham and was sad about all the friends I seemed to be losing a number of people said to me that "sometimes friends are given to us for a season". I think sometimes this is true, when life circumstances mean that someone moves away, or if a friend dies. However, I think there is an element to which this is also used as a "get out of jail free" card by people who can't be bothered. There are only a certain number of times you can try to get in contact with people before you start to feel like a weird stalker and certainly in lots of cases it isn't because people aren't seen university people at all, or aren't coming to the city I live in, because they are having meet ups and parties and going places.

Mind you, before I start to sound too maudlin or allow myself to wallow in the poor-me swamp, reading some more of that book by Eric Gaudion (him again!) earlier helped to put some of it in perspective. Jesus cares about me and I do have friends who care and friends who make time, including people who are very busy. But if you are reading this and you are a busy person please think about how you use your time and what your mindset is. God can manage without us working sixteen hours a day and attending 42 meetings a week. Being sick can make you feel terribly marginalised and lonely.

The expectation that you be positive at all times doesn't help, it might make you feel more comfortable if I grin and say I'm fine and crack a joke, but what if inside I'm screaming and wishing someone cared?

None of this is particularly cogent tonight, need some sleep, but maybe something to think about? If I might edit for clarity tomorrow. Toodle pip

Some poetry

Another of my loves, though one I have neglected often, is poetry. I was listening to and reading Parliament Hill Fields by Sylvia Plath just now on the Poetry Archive

She seems to be a very exact person, in the way she speaks and the way she writes, each word is there because she means it to be, there is no carelessness their choice. She expresses some emotions I have felt since Amy's death and especially as I have recovered - that sense of guilt as you turn back towards the world, continue to live, realise that while you have been grieving the world has continued to turn. It is a poem very rooted in place but also in person and in that juxtaposition where a person and their perception of place collide and come together to form an experience.

A long day

Today has felt like a long day, partly because it has contained a lot of emotions, some of them almost uncontrollably strong ones. I woke feeling fairly cheery and not too bad, but unfortunately my mother hadn't. She has been in a bizarre, touchy mood all day and I have found this incredibly hard to deal with. You try to help and she bites your head off or lectures you. I've several times retreated to my room, with the door closed and the music on loud, bunkering down. Before I go on, let's get this clear, I do love my mother, I really do, deeply, I hate it when I see her hurting. I hate it even more when I see her hurting and not taking steps that could make a huge difference to this, like dealing with any mental health issues.

I wish she could understand that mental health isn't a taboo, or shouldn't be, that it isn't a sign of weakness, that it is often normal after trauma to the brain (she had a brain tumour ten years ago), that she doesn't have to hurt like she does, that it can get better. Even hurts from years and years ago, from her father, from her mother's death, can be dealt with, can be healed, can be acknowledged. Acknowledgement of problems is a huge issue in this house; she will not acknowledge the impact her illness had on her and on the rest of us, in the immediate family, the four of us, individually and as a unit. It's not her fault. I don't blame her for getting ill, none of us do, it happens, she didn't choose it. But I do feel angry that she's never allowed it to be voiced, that it was a difficult time for us all, that it has had difficult repercussions, made more difficult by their silence. I can understand not wanting to worry your children, especially when they are small, but I was part-adult - helping care for her - and treated as child - never told anything. But not being told is far more terrifying and uncertain.

Partly perhaps she doesn't want to admit her own weakness, that she, who is so proud of self-sufficiency, wasn't able to be, and isn't as able to be as she once was. No one is entirely comfortable facing their own mortality, especially when it becomes real for the first time. The echoes of her mother's illness and death must have been huge, terrifying, breaking like waves across her conciousness - she died aged 54 of a brain tumour that was discovered very suddenly. I have been aware for many years of the devastation her mother's death wrought on my mother and of how our relationship has never quite managed to recapture the closeness she enjoyed with her mother.

The word 'repression' is one you would associate the nineteenth century and with early twentieth century psychiatry, but it has resurfaced here. Nothing is acknowledged, nothing talked of openly, only ever in occasional snatched whispers, if at all. My mother's behaviour is at times erratic, she will begin things then forget them, move something then forget where she has put it, she shows signs of intense frustration with her physical limitations. It is something I understand deeply, but she never allows me to empathise. Instead any discussion of health becomes a competition - you have a doctor's appointment, she has those, lots; you ache, she aches more and more thoroughly. So I keep quiet. I say nothing. I pretend to be ok. The end result is that I find it incredibly hard to talk about how I am feeling, physically, emotionally, mentally. It is far easier with a blank page than a person, with doctors it is near impossible.

Another thing that frustrates me about her, because I love her, is the way that she rarely does anything to minimise her own suffering, it is almost as though she prefers to wallow in the feeling awful or the problem than to deal with it or face it. Often it takes very little - an ibuprofen - to help. There is an element of hopelessness in her sometimes, that there is no point taking an ibuprofen because it probably wouldn't help anyway.

There is a less pleasant side to all this, she is a master of the "poor mes", the sulk, the audible sigh, the posture, the flounce, even hysteria and tears. I have never known anyone sulk as she does, even thwarted toddlers in shopping centres could learn from her. She shares that same need to control, to dominate, to be in charge of every situation. There were seeds of this behaviour in her before she was ill - I remember particularly around map reading on holiday - but it has become far worse since. Personally I believe that some of this underlies her inability to get on with her own father, they were just too similar and vying for control. But her behaviour has deteriorated. The last counsellor I had could not see why we didn't just stand up to her, but this would be disastrous, it would push her further away, into the land where she believes that no one understands her or loves her, she would simply see it as a personal attack, no matter how tactfully or lovingly phrased. In fact I don't know what the answer is.

From all this you might be gathering that my mother is generally not a terribly pleasant person - she is, or can be, lively, with a real zest for life. She has many friends and when other people are around is a totally different person. And as I've said earlier, I do love her, very very much and I want her to be better and to be happier. She is a person who is hurting. I want my dad to have an easier time of it too, to be able to have his own opinions, his own life, his own interests. I want my sister to be less stressed by being at home, to be able to have a relationship with our parents again. I want to be less monumentally stressed by everyday living, or surviving. I want simple things like cooking a meal to stop being a huge emotional battle. But I don't know how.

Part of me thinks that I can't change my mother, or my family, all I can do is learn to live with them and control my reactions to them. But then on days like today when I've ended up in tears and exhausted by the violence of my emotions (and I do find the violence in how I feel scary at times) I feel like that can never be the answer or even a useful way of surviving. Anyhow, surely life is about more than that?

Answers on a postcard.