working it out as I go along

I haven’t updated for ages, because it felt like none of my strategies were working and I didn’t have anything positive to report. But lately I have found some more strategies. They are more physical types of strategies, but they work well.

I had a screening test for Irlen Syndrome (scotopic sensitivity syndrome). I was shown diagrams in a book, such as a picture of an animal that is made from lots of little crosses, and I had to count rows of crosses and explain what I was seeing. The pictures made me dizzy, and I explained that the crosses moved around and some seemed closer than others, and I also had to answer lots of general questions, and then the woman said I definitely have Irlen Syndrome and that I would really benefit from Irlen tinted lenses. I haven’t got them yet, because I haven’t been organised enough to make an appointment, but I will. But, in the meantime, out of curiosity, I tried wearing sunglasses over my normal glasses. I never wear sunglasses, but I thought I’d try it, just to see the effect of a tinted lens. It is strange - it feels like a tangible relief to put the sunglasses on. Especially when I wear a baseball cap - the visor stops any light coming in from the top of the sunglasses. It’s like my eyes relax - I didn’t realise how unrelaxed they were before, but when I put on the sunglasses I realise. I wear them outside when I walk anywhere, and I wear them in supermarkets with fluorescent lights. They work really well in supermarkets - I can wander around and look in the aisles at my leisure without feeling dizzy and rushing to the checkout to get out of there as soon as possible.

So that is one strategy. When I am not being overwhelmed by visual stuff, then my brain feels more relaxed and it’s easier to be organised.

Another thing is working on my core stability. My doctor referred me to an osteopath, who told me that because I am hypermobile, I must work very hard at strengthening my muscles to stabilise my back, and he gave me various exercises to do to work on my ‘core stability’. I realise lately how very little control I have felt over my body - I am uncoordinated and I don’t have good proprioception and I’m always bumping into stuff (actually, Irlen glasses are supposed to help with this too). But when I do core stability exercises, I feel more in control of my body - I feel a centrality in my body which helps me to feel centred and able to organise my life more. I also have started karate classes, which make me more aware of how I move, and to feel more control. I have adapted what I learn to the way I walk in general, so I have learnt to walk in a more coordinated and efficient way - just as fast but using up less energy, and feeling more in control.

So, oddly, these physical things are helping far more than all the organisational strategies I’ve tried to put into place. I need to first feel a central stability in myself. It is hard to start organising anything when everything I see seems to be jiggling around and pulsating and making my eyes/vision/brain stressed and tired. And also hard to organise when i don’t have a sense of centre and strength and stability in my body.

In terms of helping me not spend hours on end on the internet, I’ve found a really simple solution. In my house is one room with an internet wire, and that is where my laptop is. Normally, when I want to use my laptop for study and not for internet, I disconnect it from both the internet and the mains supply and take it downstairs and use it for two hours, until the battery runs out, and then I take it upstairs to my internet room, and go on the internet again. Now I have taken out the plug to the mains supply and put it downstairs. So the pattern is reversed. I can spend hours on my laptop downstairs studying, and if I want to go on the internet, I take it upstairs and plug it into the internet and use battery power, which runs out after two hours.

I am still doing two Open University courses, and I’ve done the first two assignments of each. I am behind - I handed them in late - but I’m doing well, because with OU courses in the past, I’ve ended up missing assignments completely or quitting the course, because I was so disorganised. I’m also not panicking as much as I usually do with assignments. I’m not as organised as I could be, but I’m still systematic in getting them done. And I’ve told the OU student support about my Aspergers, and they are very supportive (unlike the crap college I’ve been attending).

I am now at a crossroads in my life. I’m supposed to be returning to college in September - if they will have me, that is. Which is unlikely as they think that because I’m sensitive to fluorescent lights and I get dizzy easily from travelling then I am ‘too disabled’ to have a job of responsibility in the NHS (well, they alternate between thinking this and then thinking I have no disability at all - basically, they do not want to make any accommodations for me, so they either say I’m too disabled to be on the course, or that it’s all in my head and I need to have counselling for anxiety). Well, whether they have me back or not, I don’t want to return to this college. But I do want to finish my training and work in the NHS, doing a job I feel sure I can do well. So I would like to transfer to another university, maybe starting the training all over again. But I am very uncertain about this - how on earth do I explain the situation without sounding like a whiner with a victim complex? I don’t know what to do about this, and it is making me feel tired. That doesn’t help with overall organisation - I find not knowing what I’m going to do is very distracting. And then sometimes I wonder whether I should change career direction altogether, but I’m not sure in which direction I should go.

So that is my update. There are positive changes but also I am stressed. A big trouble with me is that any little thing that goes wrong bothers me too - my brain doesn’t prioritise and say ‘Well, that doesn’t really matter’. So right now the full stop key on my laptop isn’t working very well, and this is worrying me to great degrees - I am imagining what will happen if it stops working altogether and I can’t end my sentences with full stops. Even though I know this is a silly thing to worry about, that knowledge doesn’t stop it bothering me. Another thing is that the hot water taps in my house are running hotter-than-usual water lately, and I’ve noticed in the past that this tends to precede my boiler breaking and there being no hot water and me not being able to have a hot bath. And the thing in the wall at the back of my house that holds up my washing line is swaying a lot and might come out of the wall and then I won’t be able to hang my washing outside. It’s daft - I know all these things can be fixed, but still they bother me tremendously, because I don’t want it to be necessary for them to be fixed. I want them to be working all the time! And my instinct is to say ‘Oh no - my house has stopped working - I don’t want to live here any more!’ which I know is illogical. I’m also aware that if I go to a different university, I’ll have to move and not be living in this house any more, and I may end up in a house or flat that has things that bother me even more! And of course there is the financial aspect - how am I going to afford it, and whether the NHS will give me a grant if I am switching from one uni to another. All those aspects are on my mind (if anyone wants to pray for me, I’d really appreciate it).

I wrote this entry at the same time that I wrote my last entry, but I didn’t post it then, because I didn’t have time to quite finish it. But now I have remembered to finish it, so here it is:

I am always fascinated when something I have always done or been interested in becomes ‘trendy’. Right now the trend is to find ways to be frugal - well, it’s a trend caused by necessity, because of the credit crunch, but it’s something I have always been fascinated by. The credit crunch has not affected me yet, as I’ve never earnt a lot of money, so I’ve always been frugal. And the way my mind works, I actually love finding ways to be frugal. Right now I have to be more frugal than ever, not because of the credit crunch, but because I am choosing to work agency work, and I actually don’t want to work full time, as I find it very exhausting. So I’ve been busy trying to work out the minimum I can live off, so that I know how many hours I need to work. I see time as far more valuable than money (another reason I have restricted my internet usage, because I was wasting my free time online). I would rather have more time to myself and a very simple life, than less time to myself and lots of luxuries.

I have decided I like to work three shifts a week. This is enough money for me to live simply off, and also it forces me to walk long distances three times a week, which helps my health. Incidentally, according to my normal cycle, yesterday would have been the day when I started getting abdominal pains, but none came, so I’m really hoping this walking habit has fixed it. I am observing closely and will obviously have to test for a few months to make sure it is properly having a good effect. Anyway, so I work three shifts a week, and sometimes more if I want to buy something extra like a digital camera.

I have decided to write out my ways of being frugal, because maybe they will be useful for others trying to be frugal. They will probably be a bit haphazard, and I’ll probably miss things out, because I will just think of them as I go along.

1. I rarely use my central heating now. I have two wheat bags that I bought online, and I put them in the microwave for two minutes, and then I put one round my neck and the other one against my back. They keep me warm. I love having something warm against my back. When I was a kid I used to always crouch on the floor with my back against the radiator, whilst I read books. My mum would always tell me this was very bad for my back, but when I asked her why she had no reasons other than it was ‘unnatural’. However, it has never caused any problems with my back.

2. When I do use my central heating, I make sure to coincide it with when I’ve done a load of laundry and am hanging it on a clothes horse by the radiator to dry.

3. I really love having two baths a day, but I realise this costs quite a bit of money, so I have found ways to save money on this. When I have a bath, I don’t run the water very high - it doesn’t really make that much of a difference. I keep planning to replace my morning baths with going swimming (since I have paid for membership at the college pool, and so it’s ‘free’ to use whenever I want), which is also healthy and will make me feel more energetic. Also, I like to go once a week to the sauna and steam room, which I find really relaxing and also it works like a facial on my face, making it really soft and fresh. It costs £1.90, so much cheaper than a facial or a massage, and it can also replace one of my baths, because there are showers there. (I know I can have showers at home and they are cheaper than baths, and I have tried this, but I really find them difficult to get used to. I don’t like the unexpectedness of them. They are easier in the swimming pool or the sauna and steam room, because I’ve already psyched myself up there.)

4. I have decided that each week I will allocate £30 to food and toiletries. In order to keep to this budget, when I go grocery shopping, I mentally add up each thing I put in my basket. Not exactly - I just round up to the nearest pound. So if something is £1.20, I will add it up in my head as £1. If something is £2.69, I add it up in my mind as £3. It works out very close if you do this. I did it the other day, and I added it up to £26, and it turned out to be £25.91. This is good because it stops me being surprised when I get to the checkout, because I’ve spent more than I expected. It also means that if the cashier has made a mistake (such as a two-for-the-price-of-one item being charged as two items) I know and can say something and thus not get overcharged.

5. I look at my gas and electricity meters every day and write down the reading and the time. That way I can monitor how much I am using. I have a goal of using no more than £1 of each per day, and that gives me something to aim for.

6. I use less electricity by mostly using my laptop on battery, and then charging it up when I go on the internet. It used to be that I would leave it plugged in and running all the time, even at night, which obviously is a waste of electricity.

7. I save my leftovers. I never used to do this, because it seemed silly - I live alone, and if I don’t eat all my dinner, the amount left over is not very much! But I have realised lately that if I have some rice leftover, then it is very easy for me to make a packed lunch out of it to take to work - I just add some salad and bean sprouts, and I have a good meal for work.

8. I sprout mung beans and aduki beans and chick peas. They are very easy to sprout, and when they are sprouted, they are healthier than if you cook them. They are full of protein, so a good and cheap meat alternative, and you can put them in salads.

9. I don’t buy junk food - well, I do, but very rarely. This was originally for health reasons, but now I realise it’s a good way to save money. When I fancy crisps or doritos, I will chop up potatoes into little chip shapes and put them in the oven, drizzled with oil, and with chilli powder on. And then I add cheese when they are nearly cooked. This is much cheaper than buying a bag of crisps and tastes nicer and doesn’t have artificial flavourings.

10. I try to shop at Asda around the time when I know they will put stuff on the bargain shelves. This is around 7:00pm or slightly earlier. I try to go at that time and buy stuff cheap. Particularly I like to buy freezable stuff, like lamb chops and chicken legs. I buy these and I put them invididually in freezer bags. So even though lamb chops are quite expensive, if you can buy six of them for £4 in the bargain aisle, and then eat one per day, it only costs 67p per day. I used to eat two lamb chops per day, but I don’t think that much protein is necessary. I eat them with rice, so now i just have one lamb chop and extra rice, and I don’t feel any less satisfied. And often I don’t eat all the rice, so I save it and put it in a packed lunch.

11. If I make a huge salad and don’t eat it all, I don’t throw it away. I just leave it on the table and then I eat the rest of it later, particularly when I’ve just come home from work. I find walking long distances makes me have a good appetite and it makes food taste really good. Sometimes I take ryvita, fruit and nuts to work, and although it seems like a boring meal when I prepare it, it tastes really good when I eat it because I work up an appetite from walking to work. I find walking to work makes simple foods taste better - I don’t have cravings for junk food.

12. Sometimes I sleep in my clothes. This might seem lazy or silly, but the thing is, most of my clothes are extremely loose and comfy and very similar to pyjamas anyway, because I am very uncomfortable if my clothes aren’t soft and loose and comfy. I don’t sleep in clothes I’ve worn to work - I change out of those when I get home from work, because my work can be dirty. But I have other comfy clothes I wear when I’m at home in my house, and there is no particular reason not to wear them to bed. That way I have less to wash in the laundy and so I save on electricity because I do laundry less often.

Today is the last day of February. It has been a bit of a difficult month for me, because my organisation strategies seemed to fall apart. So for a while I felt very discouraged and began to think there was no hope for me to ever get organised, because I couldn’t stick at it. But then I analysed it logically, and realised that there was a simple explanation.

I analysed it as follows: December was a relatively easy month to be organised, because all I was concentrating on was organisational strategies. My whole focus was becoming organised, and I even had the external structure of Advent which I chose to use for this purpose. January was a bit harder, but still okay. In January I had started my Open University course, so I was working at applying my strategies to study. I had two things to concentrate on: organisational strategies and studying an OU course. Then in February I registered for a second OU course, and also started working several shifts a week. And thus I had four things to concentrate on: organisational strategies, first OU course, second OU course and work. Not to mention the new physical exercise thing I decided to do, where I walk to work and back (and which is quite tiring at first, since I’d been pretty inactive at first, so walking 4 miles to work and 4 miles home takes a bit of getting used to). So February had a steep increase in the number of things I had to focus on.

Well, once I’d realised that was the reason for February being a bit of a failure month, I felt better, because that this made sense, and in fact is the reason for me having a year out, so that I can deal with this very inability to multitask. So I realised my next task is to learn how to juggle these four things effectively. And then I remembered that Lent was about to start, which made me very happy, because that gives me an external structure again - a time frame in which I can devote myself to a particular goal.

I realise, by the way, that my reasons for observing Lent are not those of most Christians. I don’t like to say that I don’t do it for Christian reasons, because my way of viewing life is that God is in all I do and should be a motivating factor for everything in my life. For instance, I go to work and I seek to serve God at work. I study and I seek to serve God in study. I seek for God to be in all I do, because to me this is the point of being a Christian - being in constant union with God. I don’t really see a separation between ‘God activities’ and ’secular activities’. But I realise that many Christians do, and so for them, work or study would be secular activities, whereas Lent would be a God activity.  And they do Lent so that they may share in the sufferings of Christ. I don’t do Lent for this reason. I don’t understand that reason. How I see it is that Christ came to earth as a human that he may share in our sufferings. We already suffer - it’s part of the human condition. To purposely decide to suffer in a new way seems pointless. Besides, if Christ suffered in order to share in our sufferings, it seems to be a bit redundant if we then add extra sufferings in order to share his - and kind of like we’re competing in suffering. And his suffering was the ultimate suffering anyway, which none of us could share. So I don’t do Lent to suffer. I do it to help me focus my life and gain discipline. And I don’t see that as separate from God, because surely I am more effective in serving him if I am able to focus and be disciplined. So that is why I do Lent.

Anyway, here is what I have decided for Lent. I will devote it to trying to juggle these four areas of organisation skills, first OU course, second OU course and work. I thought at first that I’d better make that five, and add spiritual life, but then I realised that doesn’t really fit with my view that God is part of everything. I know that a lot of organisation books have mind maps of areas of your life, and they include many things that I haven’t included, such as spiritual, social, health, financial, etc. But I’m not adding those, because spiritual should underpin everything, social I am not particularly interested in doing regularly right now (and I am with people at work, so I’m not a complete hermit), and health seems to be taking care of itself in that I am walking to work and back, which is having a very good effect on me.  As for financial, well, that is very easy to do, because I simply just don’t spend money on anything unnecessary. If I don’t have the money, I don’t spend it. Actually, finances have become an interesting hobby for me, and I like to analyse it all as I walk to work, and work out the very smallest amount of money I can live off. I like being frugal, and this helps give me a sense of control over my life, which helps me feel more organised.

Anyway, another thing I am doing for Lent is that I am restricting my internet time very strictly. I will only go online from 9:00pm to 11:00pm. A lot of days this works out that I can only go online for quarter of an hour, because if I finish my shift at 9:30pm and walk four miles home, then I get home beteween 10:30pm and 10:45pm. But I planned it this way on purpose, because I do not even want to be online for two hours a day. This is not a self-denial thing. I actually find myself feeling depressed and frustrated from spending too much time online, so this is very freeing for me. But it’s something I will only do with the external motivation of Lent. However, this internet restriction does not include writing of blog entries. I write my blog entries offline, when my laptop is not connected to the internet. I like writing blog entries and I do not see it as a waste of time, because it really helps me process and centre my thoughts, and sometimes it can be useful for those who read too.

Another thing I’m doing to help me organise my life is to use my diary more creatively. I have a page-a-day diary. At first I was simply dividing each day into forty-minute segments and then getting discouraged when I didn’t use each segment in a productive way. Now I write different things I do in different colours on the page, and draw boxes around them, so I can see what I’ve achieved. I also write down how much money I’ve spent, if I spend money, and how much money I have earnt, on the days when I get my payslip. And I write down my gas and electricity readings each day, to see how much I am using per day. I try to use less than £1 of each per day. One thing I want to buy is a digital camera, so I will work some extra shifts at some point to buy one, and then I will take a photo of a diary page and post it to show how I am organising my days.

Well, I wrote this earlier, and now I have returned home from work and it’s 10:45pm, and I’m about to post this. A frustration with my work and trying to be healthy is that sometimes they work against each other. My job can be very hard physical work and potentially harmful for your back. Had a very frustrating shift, where we were expected to move a couple of clients who can’t consistently weight-bear, which means they can at any minute put all their weight on a staff member and hurt them. Really, they needed a hoist to move them. But the manager wouldn’t let us use hoists - she insisted that these clients could walk because they had walked a few steps the other day. So she thought they were somehow being ‘bad’ - which is daft, because these clients have had strokes and are paralysed on one side of their body, which obviously makes walking really hard for them.  And naturally they are exhausted. Sometimes they can move a few steps very hesitantly and with lots of effort, but often it’s too exhausting for them. The manager told us to be ‘firm’ with these clients, because they were just ‘playing up’. In fact, with one woman, she went in and yelled at her, telling her that if she didn’t stand up then she’d have to stay in wet knickers all day. And this poor woman has a look of constant anxiety and sometimes terror on her face when we have to move her. I hate this - I do not believe in being firm to make her do something she’s too exhausted to do, and which scares her, because she knows she could fall, and scares me, because if she falls on me she’ll hurt me as well as herself. So I have decided I won’t work any more shifts in this care home while these clients are there. Which potentially means less work for me. But I will trust God for enough work. And now it’s 10:59, so I have to post this right now!

I wrote this earlier:

On Monday morning, the agency phoned to tell me my shift was cancelled. Which actually felt quite nice - it’s like unexpectedly being given a holiday. Sure, I don’t get the money, but I’d had so many shifts the week before, it didn’t matter so much.

However, there was then the dilemma of how to get in my regular habit of walking. While working a shift motivates me to walk, simply because I have to get to work, if I have nowhere to go, then it is hard to motivate myself to walk. But I really wanted to keep up the walking habit I’d started, so I decided to find somewhere to go. I would go to the city centre and hand in my time sheets, as I had to do that at some point anyway.

I initially decided I wouldn’t walk to the city centre, because it’s too far away. But I know that logically that is is not a real reason, because it’s only between five and six miles, so not much further than walking to various workplaces. But there were other reasons I didn’t want to walk - I find the walk to the city centre confusing. I’ve been a few times before with a friend from college, and every time I would try to memorise the way, and every time I would fail. I have absolutely no sense of direction. If I am looking on a map, I can find my way anywhere, but if I have no map I am not able to find my way from landmarks and things. I need to see the map first. I do have a map, but I wasn’t able to find the way to the city centre on it, because the direct way means walking by a very busy intersection with no pavement. So in my head, the only ‘correct’ way was the way I’d been with this college friend, and I had no idea which way this was on the map - I couldn’t remember whether we’d turned left or right at various points.

So, I decided to walk part of the way and then take the bus when I got stuck. But when I got to the part where I was stuck, I realised I didn’t want to take the bus. I hadn’t walked far enough. I was now on a roll and wanted to walk the whole way. So I decided to improvise, and go a way that seemed to make sense on the map, and if it turned out to be an impossible way, I would turn back.

I found a way to walk. I realised it was a bit different from the way I’d walked with my friend, but also at a certain point, I actually realised what the way was that I’d walked with her, because I met a certain road from one direction and then saw the bridge from which I’d walked with my friend meeting the road in the other direction. And then I realised how it was actually very easy and not at all scary to walk to the city centre, and I thought about why I’d thought it was so impossible and overwhelming.

This is what I realised. When other people teach me things, I get overwhelmed. I need to figure things out for myself. This friend, while she was showing me the landmarks and explaining that her way was better than the main road, had actually overwhelmed me because she was talking from some context that I didn’t share. It is the same with lectures at college - I don’t learn from being taught. I need to be told simply the target and then allowed to be free to find my own way to attain it. To be coached in the way is highly confusing for me. I simply need a clear target.

Well, this is quite discouraging in a way, because if I am to return to college or switch to another college, and finish my degree, I will need to attend lectures and continue to be confused. Unless, possibly, I were to attend a college that does problem-based learning, where they give you the problem and you have to go away and solve it. I like the idea of that. However, I believe that such courses also make you do it in groups, which I don’t like. I need to solve things all by myself.

Something else I’ve observed is that while I can walk five miles and not get exhausted from it, ten minutes under a fluorescent light will totally exhaust me. It seems silly, but that is how it is. Sensory overstimulation exhausts me.

Today it is Wednesday, and I realise that today I am exhausted. My first thought was that it must be from all that walking on Monday, but then I realised that actually that walk didn’t exhaust me at all. I’m exhausted because yesterday I went on ‘breakaway’ training. It is not a physically strenuous training, although it is physical. It involves learning how to break away from clients who attack you - if they grab your arm, for instance, or try to strangle you, or pull your hair. This is so that I can work in learning disabilities as well as with elderly. We did a few warm ups for the course, but it wasn’t tiring.

There were three things that were tiring about the course though.

One was the fluorescent lights. I didn’t realise they would have such an effect on me, because the natural light was so bright, but there came a point where I got really dizzy and I couldn’t think straight - I was aware I was zoning out. So I asked if I could turn off the fluorescent lights, and the guy said yes, and I did - and it actually made no difference to the brightness of the room, but made a huge difference to me.

The second thing that was tiring about the course was the physical coordination - trying to watch the moves that the instructor was making and then make them myself. I find such things very confusing - like learning to dance or doing step aerobics. I always do it wrong. My body doesn’t coordinate well, and it’s very hard to watch someone do something and then translate it to my own body.

The third thing that exhausted me about this course was the physical contact. It was too much. I don’t like my arm being grabbed, not even gently. I still can feel where people grabbed my arm, hours later. At work I don’t let the residents grab my arm or even hold my hand. I put one hand on their back and my other hand lightly holds their arm, and I’ll only do it that way. That is the safest way anyway, so I tell them that. Anyway, I don’t like having to be constantly paired up with another person and do physical stuff with them, like on this course, where they have to hold me or grab me and I have to hold them or grab them. I don’t like any of this stuff because it invades my space and I am too sensitive to it, and it makes me feel exhausted and boundary-less. I don’t mind someone occasionally touching me in a friendly way, but I don’t like all this physical pair-work.

And then I did an unwise thing after the training. I went to the sauna and steamroom, which normally I like, but yesterday it exhausted me even more, because that is more physical sensation and there comes a point where there is too much. For instance, I love massages, but right now I could not have a massage. It would be intrusive, because my body has had its fill of sensory stuff. I have to go to work in a minute because I have a shift today, and I am really not looking forward to it, because I am tired in this way. I do not feel like assisting anyone to the toilet or transferring them into their wheelchairs and lifting their legs and all that. I just feel like being all by myself. But anyway, then I don’t have a shift until Saturday, and I won’t take any more shifts this week, so I hope I will be rested by then.

Right now I am feeling a fragmentedness in my life. There is no sense of continuity, because I’ve been doing different things on different days, and I haven’t been doing my organisation strategies lately, because it’s hard to switch between work mode and strategy mode, and I don’t have the energy at the moment. But it is good that I’m aware of this, and it’s something I need to find a strategy to fix, because this is of course what life is like, and what it will be like if I return to college, so I need to find a way of dealing with it. I did have an idea of having a physical prompt - something to always have in my pocket to grasp regularly to give me a sense of continuity and remind me to work on strategies and to see the big picture. I will try this and see if it works.

(Am back from work now and very much looking forward to two days off!)

After five days of shift work, I now have a day off and can continue what I was writing here.

I wrote a while back about my night shift, two Mondays ago. Well, the Thursday of that week, I had accepted a PM shift in a different care home. But when it came to the Thursday, I was feeling very unwell, and my abdomen was in a lot of pain. I get this every month - for about two weeks of each month, I get a lot of pain, intermittently each day. Sometimes so bad that I throw up, or I black out, and I often have to lie down, and it is very frustrating because it can be quite disabling. I also get extreme exhaustion. Well, normally when doing agency work, I take time off when I am feeling like this. However, because I’ve returned to agency work after a break of being at college, and they are therefore not yet giving me regular shifts, I decided that phoning to cancel the shift would not be wise. So I decided to go to work, feeling unwell.

Now, normally when I take a shift when I’m feeling unwell, I will take the bus to work, because I feel too tired to walk, but lately I have been more and more aware of how the motion of taking the bus makes me feel very dizzy and out of sorts. So I decided to walk. It was a four-mile walk, and it’s very hilly where I live, so the walk can be tiring because of the climbing of hills. Well, the walk starts with an especially steep hill, and I realised when I was walking up this hill that I was feeling even more unwell, and I felt like I was going to pass out. I contemplated phoning to cancel the shift, but I get quite determined once I’ve started something (or possibly it’s the inertia thing - once I’ve started, it’s easier to keep going than to stop), so I decided to carry on, and figured that if I was really ill when I got to work, they’d just send me home.

Well, I kept walking, and then a strange thing happened. After I’d walked about a mile, the pain started to subside. And then, after a while, i found I was feeling great. No more faintness, no more pain, no more exhaustion. By the time I arrived at work, I felt full of energy. I worked the shift, and then decided to walk home too (normally, I will take the bus home if I walk to work, because I decide that walking both ways is too much). I walked home, and felt full of energy.

The next day, when I woke up, I felt great. No pain at all. I also felt a sort of momentum. As if the act of walking had somehow put me into some kind of momentum for other things. It was easier to get down to doing things like study and housework.

Well, I thought about this and made some connections in my head. I’ve had these monthly pains for about 8 years, but there was one month when I didn’t have them - and that was when I went hiking in Scotland with a Canadian friend, several years ago. I’m not a particularly active outdoorsy person, but my Canadian friend is, and she wanted to go hiking in Scotland, and since she was my guest, and I’d always fancied going to Scotland, I agreed to it. I remember finding it very tiring, as I wasn’t used to hills at all, but I also remember noting with a mix of astonishment and satisfaction that I had no pains or faintness or unwell feelings.

Now, I assume the hills must have something to do with this, because where I used to live, where it wasn’t hilly, I walked quite a bit, and I still got the pains every month. I imagine it is something to do with moving one’s legs up and down as well as forwards - it must get the womb moving or something. I also imagine it must be necessary to walk more than just a couple of miles, and to walk regularly. So this was a good thing to realise - I was able to formulate a simple plan as to how not to get pains and exhaustion and unwellness every month.

However, when I didn’t have shifts to work, I had no motivation just to go walking. So for the next few days, I stayed at home. I discovered that the effects of the walking lasted two days. I felt great on the Friday, so-so on the Saturday, and then on Sunday I was getting pains again (although not such bad pains as usual). But I had a new bodily awareness. Normally I react to the pains by wondering what I can eat to make them better - but this time I felt an awareness that eating would make no difference, and that my body really needs exercise to help the pains. But I didn’t want to go outside. It was raining, and I could not muster up any motivation. But then it occurred to me that I could do some sort of exercise indoors. So I did some jumping jacks, and then some jogging on the spot, and then some stretching exercises, and then some more jumping jacks, and I felt better afterwards - not just physically better, but also more motivated and as if I’d conjured up some momentum. It wasn’t as good as the long hilly walk - the pains returned later and I had to keep doing such exercises.

Anyway, as I think I have mentioned, the following week (this last week), I was given five shifts. Two were in a care home which is too far away to walk, so I walked part of the distance only and took the bus for the rest) and the other three were in a care home which is only three miles away, so I walked the whole way - both there and back. Even when I was very tired, I forced myself to do this, as a sort of experiment, to see if it would work. And it did - it was definitely worth it. This last week I would normally have been in a lot of pain and feeling very unwell, but I have felt great. The only slightly negative thing I’ve experienced was being very tired (but not the overwhelming exhaustion I normally get - just the tiredness one gets after doing a lot of exercise) and having aching legs from all the walking (but the aching subsided the more I walked, and I decided that the aching was actually a positive thing, because it’s evidence that I am fit and healthy enough to walk long distances - I am especially aware of how mobility is something to be grateful for when I work in care homes with elderly people who need assistance to walk).

Well, today is Sunday, and I have a day off. I have another shift tomorrow (I got a phone call from the agency today offering me the shift tomorrow and I took it).  I am grateful for my day off, but am also looking forward to work tomorrow. This whole realisation about the healing and motivating power of walking on me has given me even more enthusiasm for my agency shifts, because I still see the whole walking thing as a type of experiment, where I observe the effects it has on me.

So far, based on my experiences of the last two weeks, I have the following hypothesis:

Regularly walking substantial distances involving hills has the following effects on me:

1. It takes away abdominal pains and helps me feel healthy
2. It makes me feel more cheerful and positive
3. It creates a sort of momentum, which somehow works against the inertia thing, making it easier for me to get started on things

I have no idea how regularly I would need to do this walking in order for it to have a constant affect on my life, but then this is what I hope to observe as I work various shifts. I will obviously also have to observe whether the same happens next month, regarding lack of pain, or whether this is just a one-off thing. I want to make sure I do it at least three times a week. I might supplement with swimming, but I don’t think I can replace it with swimming, as there have been times in the past where I would swim every day and although it helped, it never got rid of my pains. So I think I will make it my goal to walk at least 5 miles at least three times a week.

It’s been a while since I’ve written in here, and that absence of entries was actually deliberate – at least, at first. Last time I wrote in here, which was following a night shift, after I’d had a sleep and was stilll very tired, I wrote the entry and came online to post it. I realised afterwards this was really daft, particularly in the light of what I’d written about inertia getting worse with tiredness. The place where my inertia is worst is the internet. So I stayed on the internet all evening and then all night, till 7:00am my brain so tired that it hardly knew what it was doing. So then I told myself I must not go on the internet when I am tired.

However, since then I have been on the internet, and it has been on my mind that I want to write in here about new things I have observed. I have also been working quite a few shifts. It is interesting being solely dependent on an agency to give me work. It’s not like a stable job where I know I will get a certain amount of money each month. I am dependent on whether there is work available and whether the agency chooses to give it to me – but ultimately, I see it as me being dependent on God. I have to trust God in a different sort of way from before. Especially at the moment – because I haven’t worked with the agency for a while, they do not give me any priority. They don’t give me shifts at the beginning of the week in advance for that week, like they do with some people. They offer me the really last minute shifts – so they’ll phone me at 1:30pm and say ‘Can you work at such-and-such a care home this afternoon, from 2:30 to 9:30?’ And I say ‘I wouldn’t be able to start at that time because I wouldn’t have time to get there by then, but I could start at 4:00pm’. And because they can’t get anyone else to cover the shift, they agree to that.

There is actually something I like about such last minute shifts. I find that having a rota where I know my shifts for the month ahead is quite depressing. It’s always in my mind and I’m always working around it, and my life seems to loom ahead of me, all pre-arranged with a stifling sameness. If I wake up in the morning knowing I’m going to work in the afternoon, that knowledge casts a shadow on the morning and I can’t focus. If I don’t know, then I can totally enjoy the morning, assuming I have the whole day ahead of me to do as I please. There is no chance for anticipation – and the anticipation is always more gloomy than the shift, because I generally enjoy work when I’m there. There is something very satisfying about the simple act of helping people with the basics of living – assisting them to the toilet, to the dining room, serving them food, helping them to bed. I feel I am contributing to society at a simple, core level. I see straight away the effects of my work – it’s something so simple and yet so essential. And so many residents appreciate such small things – the fact that you joke with them, or smile, or listen to them, or reassure them. It’s very humbling. And it is nice being agency staff, because I don’t get burdened by any of the staff politics.

So I realise how agency work suits my personality more than regular work with a contract. I know that logically I should feel insecure because the work is not guaranteed, and particularly now that a lot of care homes have closed down, but I really am feeling a trust in God about this – in what Jesus says about considering the sparrows and the flowers, and how God knows we need food and clothes and will provide.
…

Well… just after I finished typing the previous paragraph, the agency phoned me with a shift for this afternoon. So I agreed to do it and then went to prepare some lunch to eat before I go, and then the agency phoned me again to give me a shift for tomorrow and another shift for the day after. Sometimes it feels like God is smiling down at me and winking.

Now, I must eat my lunch now and leave for my shift, so I haven’t had time to write about all the things I was going to write about. But I will post this as it is, so that I get back in the habit of updating my blog, and I will write the other stuff another time.

On 2nd February, my plans were somewhat disrupted by a night shift.

I’d started the day by writing my daily thoughts, which enabled me to evaluate the previous day and what had worked well, and I started to plan what I would do that day.. I’d done about half of it by 6:00pm. I’d just returned from grocery shopping and was planning my evening meal and study when the agency I work with phoned me and asked if I would be able to work a night shift that night.

I am quite an indecisive person, because I always think off all the pros and cons all at once and then I get overwhelmed. Doing agency work really makes me aware of my indecisiveness, because it often demands on the spot decisions like that, which I defer a little by asking questions – What home did you say it is at? What road is that on again? Can you remind me what are the hours of a night shift? etc. - while my mind is racing.

Yesterday the racing-mind decision-making process went like this: Ooh - night shift. More hours and mre money than day shifts. Almost double what I’d earn on a PM shift. I really need money. But, um, I decided I wouldn’t do any more night shifts because they make me feel unwell. I should pay attention to that decision and say no. But, well, for the past few nights I’ve been going to bed at 3:30am, so I’ve developed a habit of staying up half the night anyway. If I don’t do this night shift, I will spend from 9:00pm to 3:30am on the internet, no matter how much I tell myself not to, so I might as well be spending that time earning money, putting elderly people to bed and helping them go to the toilet, and, besides, there will no doubt be quite a lot of time where I am just sitting there doing nothing, so I could study too. I could get quite a bit of study done in between the hourly rounds. But I might feel too tired to concentrate. But considering I stay up till 3:30 anyway, I won’t be too tired before then. And I can walk there and get my exercise for the day, and I can walk home tomorrow and get my exercise for tomorrow. And I can listen to my iPod on the way and listen to lots of iTunes U lectures. And, well, one night of awakeness isn’t the end of the world. I occasionally spend all night on the internet.

So I took the shift. I walked there, and felt very refreshed when I got there because it’s a four-mile walk. I listened to two iTunes U lectures on the way. It turned out to be quite a busy shift, but still I managed to get lots of studying done. I walked home the next morning, feeling very tired and zoned out, and not enjoying the snow, which was falling quite heavily. And then when I got home I had a bath and stayed in the bath far longer than I normally do, and only got out because it was getting cold! Then I dried my hair for far longer than was necessary and then went to bed. slept from 10am to 4:30pm, and I woke up feeling the weird heavy sort of tiredness that comes with doing a night shift, and I wondered whether I’d made the right decision. I lay in bed analysing it came up with some interesting thoughts:

When I am tired, my Asperger characteristics are increased. One such characteristic is a difficulty with auditory processing. This means when I hear people talk, I don’t automatically get the meaning of what they are saying. I can hear and understand individual words – and the details of the accent in which they are spoken – but not the meaning of them all put together. Lessons at school never had much meaning for me unless they were really interesting and made sense in an obvious sort of way, which heightened my focus and alertness. I have never been able to do listening comprehension of other languages that I have learnt, despite the fact that in all other aspects I was very good at the languages. It wasn’t that I was hearing wrongly – if someone says something in French, I can repeat it and sound almost as if I’m French (whether I understand it or not!). It wasn’t that I didn’t have the vocabulary or grammar – I was always very advanced at that. It was simply that I didn’t understand the spoken form – not even after attending a French summer school, where French was spoken all the time.

Obviously it’s more pronounced in other languages than in English. And there are many ways of getting round it in English – I tend to have a reputation for being a daydreamer and not paying attention. But this is not really completely what it is – I notice other people absorb what people are saying without maintaining the intense sort of attention I need in order to do so. Now, it is something I’ve worked a lot on over the years, and taught myself to concentrate and I can generally do it now if I focus. It seemed to disintegrate a bit at college over these past couple of years, because there were so many other things exhausting and stressing my body – such as the fluorescent lights, the powerpoints, and the fact that the course is so unorganised that I never have a sense of overall context.

But one odd thing is that I automatically seem to process the individual sounds a person makes, and the details of phonemic variation and accent. This is why I’m very good at phonetics at college and I never struggle with it in the way that others do. It comes completely naturally to me. I remember when our phonetics teacher was explaining that there are many ways that one person can pronounce one word, depending on linguistic context, environmental context, etc. and they can even change a consonant and people still understand - and she was saying this so that we’d understand that what we do naturally is actually a really advanced and complex skill, but my unspoken response was ‘Yes! I know! This is why it is so bloody hard to understand what people say!’ Well, apparently ‘normal’ people can filter out phonetic differences and hear all phonemic variations of the same word as the same. But I can’t do this. I hear every variation. That is why it is such an effort to get the meaning – because I am simultaneously taking in the exact phonetic sounds.

Well, the reason I was thinking about this was that it happened this morning as I was walking home from work listening to my iPod. I had actually been finding I could absorb the meaning of the iTunes U lectures really well – I was focusing intensely on what I was listening to with no stressful distractions. But this morning, I was very very tired and zoned out, so what I was absorbing was along these lines: Why does the lecturer pronounce ‘measure’ as ‘may-sure’? He doesn’t have an accent of someone whose mother tongue is not English. He seems to be clearly American. Is that a form of American accent? I can’t remember having heard that before. Maybe he learnt it wrongly when he was a child and never noticed. Oh – he pronounces ‘vision’ as ‘vee-sion’. Maybe he elongates short vowels when they are preceded by a ‘zh’ sound. Let me see if he elongates them in other places… oh, yes, before an ‘l’, but not before a ‘k’. Maybe only before voiced consonants. Oh, not before ‘g’ – maybe not before stops. But he says ‘brain’ more like ‘bren’ – the opposite thing. Or is it simply that the ‘e’ of his ‘measure’ is the same as in ‘brain’ – it seems too long for one and too short for the other. Maybe they are the same sound to him. I must ask American people if they make a difference between the initial vowel in ‘measure’ and the vowel in ‘brain’. Is one a diphthong for Americans or not. Maybe it’s an Italian thing – maybe he has Italian ancestry.

Well, so you see how my tiredness affected my auditory processing. And I noticed as well that it affected – increased – the whole inertia thing. Why else would I not get out of the bath? I actually have noticed in the past that this is a pattern of mine – when I am very tired it’s like I’m too tired to get out of the bath. It’s not that I’m unable to – somehow, the intrinsic motivation seems to go and I even forget that people are supposed to get out of baths and I just stay there until acted upon by the external motivation of the water being cold! This reminds me of something similar – when I was a child, if I was on holiday with my family or some holiday group, I liked to find a stream and walk along it. But once I started walking, it would never occur to me that at some point I should stop and go back. I would keep walking for hours - until I realised I needed the toilet! Then I would walk back to go to the toilet – and would always be very confused as to why I was greeted with people shouting out my name in relief and asking if I was okay and where I’d been and how worried they were.

Well, this morning, not only did the inertia thing happen in the bath, it happened with blowdrying my hair. This has actually never happened before – probably because I rarely dry my hair. But I was about to get into bed, it was snowing out and my house was cold, and I didn’t want to sleep wih wet hair. So I dried it. And then I just sat there continuing to dry it. Eventually I realised what I was doing and made myself turn off the hairdryer and go to bed.

Now, it occurs to me that this sort of thing, though more pronounced in people on the autistic spectrum, must surely happen to everyone. I’ve often heard people say they are too tired to go to bed. Maybe it’s not that they are literally too tired to move – maybe it’s that tiredness has suppressed their ability to initiate action, and placed them into that inertia state.

On a similar note, when I wrote my daily thoughts today, after I’d got up, I realised that emotionally I wasn’t feeling anything. Or rather, I wasn’t aware of feeling anything. Just tiredness. Now, it is commonly said that people on the autistic spectrum have difficulty processing and expressing emotion, and it occurs to me that maybe this is why. Firstly there is the whole inertia thing – not being consciously aware until thinking about it. But also there is the tiredness – the being overwhelmed by so many sensory stimuli, and being unable to filter out – which can cut off your ability to know how you feel. I think this is a normal thing at some level in everyone. I’ve sometimes asked people how they are feeling about something emotionally, and they have said ‘I’m too tired too feel anything’ or ‘I just feel tired’. I remember when my Grandad died last year I was very bothered by the fact that I didn’t have chance to feel sad properly because I was so exhausted and unwell with travelling to my placement every week, and so stressed by the many demands of college and placement. It was like my brain didn’t have enough space in it to feel sad as well – sort of like when a computer is using too much of its RAM – so I had to feel sad later when it was the holidays.

Sometimes I feel very frustrated when non-autistic ‘experts’ try to explain how the minds of people on the autistic spectrum work, because they don’t realise all these things. I often think I’d like to write a book properly explaining what it is like. And now I am thinking it is like when your computer has too many things running, and you have to close some of them in order for it to function properly, or else it freezes, or else works really slowly. This is what it is like in my brain – but I am not able to close things that are running in my brain, because I am always aware of everything that is going on. This is why I like to have a simple life. And why it is better to do things one at a time, and to be given instructions one at a time, rather than having lots of assignments that I’ve been told about all at once.

Well, anyway, this entry was about how I did a night shift. I’m not sure whether it’s a good idea in general for me to do night shifts, but this one was good because it taught me a lot about myself and how my mind works. It was also good because of the study I got done – and there is another example of tiredness increasing inertia (this time the inertia of motion). I was so tired last night and was often thinking I’d done enough study and I wanted to stop. But somehow I kept going, as if driven purely by the fact that I’d started. The momentum was enough to override what my conscious mind was saying.

This entry might be a bit disjointed, because I am still tired, and seem to have decrease in my ability to look at the whole and bring it together. I have simply been pursuing the strands of details, perhaps because I am processing as I write. Maybe in the future I can bring this together as a coherent whole. My diary title – ‘working it out as I go along’ – is true in more ways than I realised when I thought of it. It refers not just to the process of experimenting with techniques for my life, but also to the very act of processing things mentally as I write them.

I like the start of a new month. I’d felt my strategies unravelling and was having difficulty getting restarted, but today the fact of the new month made it so much easier to start anew. Logically this does not make a lot of sense - one can start anew at any time, without the external division of time into months - but somehow it was what it took to motivate me. It marks a clear end to January and the beginning of a new period of time. So I decided February would be the month where I focus on study.

Since I’d done all that reading about inertia, it made sense that I should try setting myself in motion, as it were, with my studies. To see if once I started, I’d keep going, according to the law of inertia. So today I tried this.

It actually took a while to get myself started. I had decided that once I’d written my daily thoughts, I would go straight into studying. But somehow this didn’t work. I wanted to put away ten things from the living room first. And since then I wanted to put away ten items of clean laundry. And then I wanted to wash the dishes from last night. And then, for some bizarre reason, I wanted to clean all the mirrors (that is one of the more obscure things that I have an index card for!). And then I wanted to clean all the windows (which really didn’t need cleaning, as I cleaned them a couple of weeks ago). I simply wanted to do things that were on the index cards. And I wanted to find things to do while I was listening to my iPod.

I also realised that while I’d thought my organisation strategies had become unravelled towards the latter half of January, I’d still been doing a lot of the things that were on the index cards, even though I wasn’t using the index careds. Somehow I’d got used to them and was doing them almost as a habit. And today, now that I’d decided to start using the index cards again, I was doubly motivated, because it’s nice to be able to slot the cards forward once I’ve done them.

Well, finally I sat down to study. And I realised that I really needed to have a plan. What puts me off studying is that I tell myself I will read certain chapters, but I have no sense of how long it will take and I easily get discouraged when it takes longer than I thought. So I decided on the following plan:

For several segments of 40 minutes in a row, I would read for the first 30 minutes of these segments, and then have a 10-minute break. I decided that I would read ten pages per 30 minutes, and then I counted how many pages left of the book there were to read, and there were 80 pages left. So I calculated that it would take 8 lots of 40-minute segments, and that I had more than enough 40-minute segments to complete the book.

Well, I thought I might get a bit fed up of this rather rigid way of doing it, and that I’d get distracted and want to do other things, but I found that after each ten-minute break I wanted to go straight back to the book. I had originally told myself that after the first 3 40-minute segments, I would have a long break, where I would spend the following 40 minutes doing something completely different. But this didn’t happen - I wanted to go back to the book. Sometimes I would tell myself ‘Okay, it’s time to eat, so after this 40-minute segment, I’m going to spend the next 40 minutes making a meal and eating it’. But this never happened either. I guess the ‘inertia of motion’ thing was happening, because I always returned to the book. After the 7th segment, when I had one more left to do, I did get a bit distracted. I made a cold meal to eat after I’d finished, and then I washed dishes, and then I used the dishwater to wash the floor and then to pour down the toilets to clean them, and then I decided I would clean the toilets properly and the sinks, and I got on a bit of a cleaning roll, which took longer than the 10-minute break I was supposed to have. Although, to be honest, I was aware of this happening and I decided to let it happen, and to spend the entire next 40 minutes cleaning, because I was curious as to whether it would stop me getting back to my study book. It didn’t. After I’d done that little spurt of cleaning, I started eating my meal, and then I got impatient to get back to studying, so I left half my meal to eat later, and went to finish reading the book.

I am feeling very happy about this. Mostly because I’ve found it so very hard to motivate myself to do studying, and I seem to have found a way to get myself on a roll. Normally it is the internet I always return to - it seems to be a sort of default for me - but today it was studying. And that is what I would like to happen all the time. For my default to be studying, rather than studying to be something that I can never get myself to do.

So, I have decided that February will be a study-focused month. I will try to do this every day, and I will write about each day here, to keep me accountable and to stop me giving up on the idea.

Time to update this blog. It’s been a while, and have discovered various things regarding organisation and what works and doesn’t.

With the index cards, I decided to start again at the beginning of each week rather than make it ongoing. I like discrete segments of time. However, I noticed that, each time one week ended and the next began, it was difficult to make the mental switch from one week to the next, and the first couple of days went by in a disorganised blur. So I realised I need to do something to prepare for the transition. I have no idea what though.

I have been listening to free university lectures from iTunes U. At first I found this tiring, but I realised that was because I would listen to them in bed before going to sleep or upon waking, and I would invariably drift to sleep while listening. I’ve heard this is the best way to learn - but for me, it really isn’t. It gave me a horrible headache. However, if I listen during the day, it’s a completely different matter. And furthermore, listening while doing housework is great. I barely even notice the housework I’m doing, so I don’t have chance to dislike it or find it boring - I’m just so fascinated listening to the lectures (MIT ‘intro to psychology’ lectures by Jeremy Wolfe are brilliant - really entertaining, and incredibly interesting. I thoroughly recommend them! And they are free from iTunes U.). Anyway, I am delighted to have found a way to do housework without even noticing I’m doing it. And listening to the lectures gives me a kind of momentum. I also listen to them when I go out - whether I walk to the supermarket, or take the bus to the city centre - and I find they are great for giving me a focus. I find it very overwhelming to be in a supermarket or in the bus. So having a focus - a voice speaking out of my ipod and into my head, and saying interesting things - is very useful.

I decided that I needed to make more prompts. So I started writing and decorating a notebook, with two pages for each day, where I told myself what to do - like letters to myself, for myself to read each day. It sort of worked, for the first couple of days. Except there were some flaws. I’d vastly overestimated the amount I could get done in one day, so I felt very discouraged for not having done it all. Also, I rather unrealistically demanded that I should go to bed at 11pm and get up at 7am - when previously I’d been going to bed at 3am and getting up at 10am. That’s far too big a time jump - I wasn’t tired at all at 11pm, so I was lying in bed feeling like a failure for not falling asleep. Also, I didn’t have a plan B - I had demanded that I get up every morning at 7:00am and go swimming - and then I got athlete’s foot, so I couldn’t go swimming (well, I could, but it would be rather unfair on other swimmers!). I knew, logically, that all I needed to do was change it and go to the gym instead, but because the pages I’d written told me to go swimming, I couldn’t make that mental adjustment, and abandoned the notebook, feeling like a dreadful failure.

And then I got unwell - not properly unwell with an illness, but just incredibly tired and overwhelmed, due to it being ‘that time of month’, as they say (I know one is not supposed to mention such things in polite company, but I kind of need to in order to plan around how my body works) and I began to feel rather discouraged and frustrated that my body gets so tired and needs so much sleep at such times, and how disabling it can be. When it is this time of month, I become even more sensitive to sensory stimuli than normal - I am uncomfortable unless I have the lights dimmed in my house and have complete silence. Of course, normally, when I am working or attending college, I just force myself to do what I have to do, but that tends to have the effect of making me permanently overwhelmed and tired. Only now that I am at home controlling my environment and resting do I really notice the negative affect of certain things, because I am finally starting to feel well and relaxed and so I keenly notice anything that unbalances that. It is rather disconcerting - I thought it would be the opposite. I thought that with enough rest I’d be fine with buses and fluorescent lighting. But no, I simply notice now more acutely how unwell they make me feel.

So, I had a week of feeling unwell and not achieving much and feeling discouraged. And now I’m trying to get back into some kind of routine again. To recover the old strategies that were working and which I temporarily abandoned - the dividing of my days into 40 minute chunks, the index cards, the ‘daily thoughts’ writing, etc.

I found some interesting web pages about ‘intertia’ - which is a name given to the part of executive dysfunction that stops you doing stuff. First I read this: http://qw88nb88.wordpress.com/2006/10/15/coping-with-the-inertia-of-task-paralysis (and also several other of her blog entries - a lot I could relate to in there). I realised this person was describing very well the difficulty I have with organisation. She suggests some strategies - but the strategies themselves seem rather overwhelming! But maybe I could adopt one at a time and try.

Then I read this: http://www.autistics.org/library/inertia.html, which I found incredibly useful, in terms of defining the problem. Particularly the frustration the author describes at being told that if she hasn’t done something, she clearly doesn’t want to do it. I have been told this many times - including by a life coach whom I saw for a couple of sessions over the summer. Clearly, she said, the fact that I was so addicted to the internet and didn’t use willpower to make myself turn off my computer meant that I didn’t really want to change. Gosh, that was so frustrating - why on earth would I be working extra shifts, working 14 hours to pay for a one-hour session with her, if I didn’t really want to change? I want to be able to change so much that it makes me cry with frustration sometimes, because I have no idea how to and no one seems to know what to suggest. Grr. I also noted with interest that this author says ‘I tend not to notice my own emotions/desires without a careful conscious process of checking to see how I’m feeling’. This is exactly what I’ve noticed myself, and why I try to write my ‘daily thoughts’, in order to become aware. It is when writing them that I realise if I am hungry or tired or unwell or something like that - I don’t notice otherwise. Well, this webpage has a lot of strategies, particularly the idea of finding something external to prompt you, which is what I had been realising anyway, so it’s good to know that the discoveries I’ve been making have been also made by others and have been found to work.

Another useful webpage I read was this: http://groups.google.com/group/alt.support.autism/msg/4e17b031c6858372?pli=1. This person is also describing my problem exactly - the whole experience of doing nothing until forced, and then once I’ve started doing something, carrying on and not stopping. What is interesting is that this person defines inertia as a physics term, as follows:

In physics, the term “inertia” is defined as:
1. An object in motion tends to stay in motion unless stopped or changed
by a force;
2. An object at rest tends to stay at rest unless changed (moved) by a
force.

It had never occurred to me to see both of these issues as one and the same, or to label them ‘inertia’ (an inertia of thought rather than of literal motion of an object, as the writer points out), but it makes total sense and helps me see the problem from a new perspective. And as this writer says, the first type of inertia can be used in a positive way if you are able to get yourself started on something you need to do. If I could apply that ’staying in motion’ to my studying (which I actually have done in the past, when I was studying English literature) I’d be really happy. The difficult thing with my course, though, is that each element of study seems so different and the lecturers don’t link them in a coherent way. But now I’m taking a year out, I can organise my own study to make it coherent.

Anyway, reading those articles actually made me feel more positive. Seeing the difficulty objectified and shared by others on the autistic spectrum, and being reassured that it really isn’t a case that I subconsciously ‘don’t want to’ change, has made me feel less inclined to blame myself for this. It is something that people do tend to see as a sort of moral/deliberate failing in me - that I am being lazy, that I couldn’t be bothered, that I am rebelling, that I am sabotaging myself due to some hidden self-hatred, etc. I had got so tired of looking deep within to find some self-hatred or issue that was making me self-sabotage, or some hidden anger that was making me rebel! But I suppose it makes sense that people see it that way. If they haven’t experienced it, they don’t understand it. If they were in my position, not doing something, then it would really be a choice. My dad often gets annoyed with me and thinks I’m being lazy or giving in or getting depressed (the number of people who’ve told me I must be depressed - gosh, I was starting to believe it! Apparently, in the normal scheme of things, lack of motivation = depression) and that I need to ‘pull myself together’. It was so frustrating, because any depression I might have felt was as a result of the fact that I couldn’t self-motivate - not the cause of it.

So, this is actually a weight off my mind - but also still very much a beginning rather than an end. I do need to find ways to set myself in motion. I like the physics explanation - I think it will be easier to find solutions when it is like a mathematical equation. I think it must be a question of, knowing that I can’t deliberately induce changes in what I am doing without some kind of external force, creating ways of getting myself to do things automatically (what that second article said about Oliver Sacks’ Awakenings was very interesting - the difference between on-purpose and automatic movement, where the catatonic person couldn’t move to pick up a ball, but would automatically catch one if thrown at her) rather than trying to be deliberate about it.

Actually, I think this may be where my main problem has come. Up until the age of 19, I did things automatically. Then things happened in my life where I was forced to look at myself and analyse myself deliberately, and become aware of my feelings and thoughts and work through them - and suddenly my ability to organise my study drastically deteriorated. I was no longer able to complete assignments on time. Before that, I’d studied on autopilot. I’d lived on autopilot. But also there is the difficulty that I don’t want to live on autopilot. I like being aware. I liked the newfound awareness I got at 19 - I didn’t (and don’t) want to lose it.

Interestingly, about four years ago, when my Granny died and I was very upset and didn’t deal with it very well, I had that experience of autopilot again, temporarily. I remember I was doing an Open University course (I was always doing OU courses back then, and never completing assignments on time), and for the first time ever, I sat down to do an assignment and worked on it with ease and got it completed easily and sent off on time. I remember being quite amazed. I’d assumed that because I was upset about my Granny it would be even harder to get down to studying, but somehow it made it easier. But only for that one assignment. I thought the same might happen last year when my Grandad died, but it didn’t. I continued to be as unorganised in my study as ever. But I think that is also because I dealt with my Grandad’s death better - I had learnt techniques of how to deal with grief. I wrote about my feelings every day, to work through them (which no doubt made me self-aware and not on autopilot). Gosh, it is like a catch-22. Being on autopilot is not healthy. It’s when you switch off from all the shit and pain and stuff and just function as a robot. Being self-aware and deliberate is healthy - but it stops me being able to organise my life and get things done. Of course, the ideal would be to switch to and from autopilot and self-aware at will - but it is the very switching that I can’t do.

Well, I had no idea that writing this blog entry would bring me to this dilemma - I hadn’t thought of it until I was writing (again, proving the necessity of writing to process my thoughts and make me self-aware). Well, I suppose I will have to think on it and try to come up with something.

Remember, during Advent, I mentioned getting an odd inspiration at 4:00am to write about asexuality, and said I might post it sometime after Advent. Well, here is it (and be warned, it is incredibly long!) …

It’s 4:00am, and I’m not tired. Having spent the last few days exhausted, unwell and in pain, today I was delighted to discover I felt better. With it came a renewed feeling of cheerfulness and good humour and renewed energy. Also renewed concentration - I could sit and read for longer. So I sat and read Ghosts by Adrian Plass. I’d bought it cheap from amazon, as I’d always quite enjoyed reading his books years ago, and felt like reading another one.

I was reminded, as I read it, that as well as being quite amusing and interesting to read, his books also invoke a kind of frusration and illogical sense of inadequacy in me. See, his books all tend to have the same running themes in them. One such theme is the importance of being real - not being some fake whitewashed thing, but to be yourself freely, with your real feelings, your real struggles, etc. With which I wholeheartedly agree, and in fact that part makes me feel quite happy, because being real is something I’m jolly good at. But then comes the next bit. Real single women have real, strong, passionate sexual feelings and fantasies. Being single and refraining from sex is a struggle. Real Christian single women are not some fake feelingless imaginary super-spiritual beings who are above sexual feelings. And if they claim they are, they are not being real.

Of course, my logic and common sense tell me that Adrian Plass probably hasn’t even heard of asexuality, and if he met me and I told him what it was, he probably would exempt me from this terrible judgement of not being real! But of course, back in my younger days, when I’d never heard of asexuality, and I assumed I must simply be repressed, I used to come away from his books with the vague feeling that I was somehow sinning for not having sexual thoughts! That I wasn’t yet good enough to be a proper ‘real’ Christian. It amuses me to look back, but still I find myself frustrated with Adrian Plass’s books. They always neatly include the single woman dealing with her sexual feelings, the gay man struggling with his feelings, and there is always a bit of a tone that suggests such topics are rather daring - but never do they include an asexual woman who wonders what a sexual feeling is and why she doesn’t have one. Never do they include a character on the autistic spectrum who, unlike the rest of Plass’s lovely ‘real’ characters. really doesn’t know all the right things to say at the right time, or when to be flippant and when to be serious, in order to prevent or rectify difficult moments.

I remember as a child I was seen as a bit of a rude ingrate with the makings of a naughty heathen at church because I never wanted the Christian children’s novels that I won as prizes for memorising scripture and attending Sunday School. I would hand them back saying ‘No thanks - I’ve read it and I don’t like it’ or ‘No, I don’t like books like this’. The reason being that then, as now, there were never any characters that I could identify with in the slightest, and the simplistic morals irritated me beyond belief. Adrian Plass does try to get beyond the simplistic morals, which is why I like his books in general, but still, I do find the list of issues he deals with to be rather narrow.

So anyway, being wide awake at what is now 4:30am, I have decided to write about what it is like to be an asexual Christian. Because I doubt anyone knows, unless they are asexual themselves, because, well, there simply aren’t any asexual Christian characters in Christian literature.

Ever since I was a tiny child, I would make up stories in my head. I would invent characters and make up stories about what happened to them.  At four years old, I would tell the stories out loud to the many imaginary friends who lived in my bedroom (everything in my bedroom was my friend - I would say ‘Hi lightswitch’ and ‘Hi wallpaper’ and give them a kiss, truly believing they were my friends). As I grew older, I started to tell the stories in my head.

Now, it always irked me that my younger sisters didn’t make up such stories. I assumed they would as they grew older, but whenever I asked them about their stories, they said they didn’t have any. I would tell them to start making up stories, because it was the most wonderful thing ever, but they tried it and didn’t like it, which I couldn’t understand at all.

However, when we were teenagers, one of my sisters mentioned to me that she’d started making up stories. I was delighted for her, and asked to know what they were about. She told me they were about her and a boy, at which I told her that she was doing it all wrong, and that they should not be about her, but about imaginary characters! But she told me how great it was to think of a story about yourself and a boy, and that I should try it. I asked what sort of things she did with this boy in her stories, and I was most disappointed to find out that it was boring stuff like kissing and getting into bed together and feeling each other, etc. No real plot at all! Our other sister joined the conversation at some point and rather embarrassedly admitted that she had started making up such stories at night too.

So I tried it. I made up an elaborate story in my head about me meeting a boy and we went to the theatre to watch Les Miserables, because that was a musical I really wanted to see, and we went to a restaurant and ate macaroni cheese, because that was my favourite meal, and meringue and cream for dessert. But… well… I really didn’t want to kiss him. I wanted him to go away so that I could sit in peace and read a book! And then I decided it was a boring pointless story because I could sit and read a book in real life, and I could listen to the tape of Les Miserables on my stereo, and I could eat macaroni cheese at home, and it was much more fun to make up stories about characters who are not me.

So… er… the point of sexual fantasies completely eluded me! In fact, I had never even heard of the concept of a sexual fantasy, and I thought it was just a different sort of story that people could make up in their heads, and a bit of a stupid pointless sort for people who weren’t very good at making up proper stories.

Well, maybe that sets the scene a little for the way my mind works. At school, other girls dated boys and talked about what actors and singers they fancied. I assumed the reason I wasn’t dating because I was weird and shy (which of course would have played a part - but I didn’t seem to realise the significance of the fact that I didn’t want to date anyone. I didn’t get crushes at all. It didn’t even occur to me that dating was something most people wanted to do. I assumed it was another pointless ritual in life that people do at some point, and that one day I would do it when my acne went away and I gained a few social skills!

Now, at age 17, I went to Bible School for a year (by some administration mistake, I was put into the wrong year at the school I moved to when I was 13, and so I finished my A levels a year younger than everyone else). I remember one day at Bible School, George Verwer came to speak to us - and I was so excited, because I’d been on Love Europe and heard him speak powerfully and inspiringly about all kinds of things. I wondered if he would talk about grace - that was his big topic at Love Europe. I remember really looking forward to him speaking at Bible School, especially when he told us he was going to talk about a topic that isn’t normally talked about, but which is vital for young people and their relationship with God. Then he announed the topic was sex, and sexual feelings, and I felt myself deflate in disappointment. What an utterly boring and irrelevant topic. I had been hoping for something relevant to my life, to help me in my relationship with God, to help me get to know God better. I assumed everyone else would be as disappointed in such a silly topic as I was, but as I looked round the room I realised that actually this probably was an important topic to a lot of people in the room. And I felt like I was different from everyone else - but then I’d always felt that in many ways, so it wasn’t something I dwelt much on. I confess, I didn’t pay attention to his talk. I tried, but it really just didn’t interest me at all. And I was bitterly disappointed as I’d really been looking forward to an inspiring, life-changing talk!

I remember then having a similar experience a few years later when I was in Canada. I had joined the inter-varsity Christian fellowship there, and we had a weekend retreat at a convent. Again, I was looking forward to it so much - I really do love hearing inspiring Christian speakers who can help me understand God in new ways. It was the Saturday afternoon, I believe, that we had a speaker who told us that he was going to talk about a subject that he knew was very important to all of us, and a very difficult and emotional subject. The subject, again, was sex. He assured us that he knew that as young people we thought about this subject a lot and it meant a lot to us. Because all young people think about sex. And he wanted us to go to our rooms and spend an hour alone with God … honestly, I can’t renmember the exact details, but that is because I never quite understood them. I’m sure he didn’t actually tell us to go to our rooms and spend an hour thinking about God and sex, but that is how I interpreted it. I’m sure there were finer subtleties - like being real with God about sexual feelings, confessing sexual sins, etc. But I had no sexual sins to confess, no sexual feelings to talk to God about, so I remember sitting on my bed feeling terribly guilty that I wasn’t doing the exercise properly because I had no idea how to think about sex. I also felt rather guilty/confused (I wasn’t quite sure which emotion was appropriate) that all young people think about sex, and I was a young person, so by law of logic I must therefore think about sex - but I wasn’t aware of having done so, so somehow I must have done it without noticing it. I should have been paying attention to these sexual thoughts that I must have had because I was a young person. They had clearly come and I hadn’t noticed and now I wasn’t able to do this exercise of thinking about sex, and so I was missing this opportunity to be close to God. I remember sitting there quite desolately with this long hour gaping ahead of me, having to carry out an exercise that I didn’t understand, and on which no doubt I would have to report back to the group. What on earth would I say when the speaker asked us about my sexual feelings, and everyone else could talk about them and I couldn’t? (Imagine my relief when, funnily enough, he didn’t ask anyone for any feedback as to their sexual musings!).

The odd thing is that it never occurred to me to question why I didn’t have any sexual feelings. I simply assumed I had them, because we were told that all young people had them. I realised that lots of church people were repressed about sex, so I assumed I was too. I assumed that I must have sexual feelings that were repressed inside of me, and that this is why I didn’t notice them. I assumed they’d come out at some point, and I wondered whether they’d be straight or gay. I remember a couple of well-meaning friends of mine in Canada wanted to help me get a partner. Most of my Canadian friends saw being single as a sad state, and those that were single were sad about it, and those that weren’t tried to relieve me of my sad single state by finding potential boyfriends for me. It had never occurred to me before that I was supposed to be sad about my single state, and I was not very pleased to discover that something I was quite happy with was actually supposed to be a cause for misery. My well-meaning Canadian friends told me that I simply didn’t come across as a sexual being and I had to discover my sexual side by masturbating and watching porn, and then I’d discover a whole new dimension to life. I could think of nothing more dull. I always got bored during sex scenes in movies - why interrupt a perfectly good plot with two people grunting in bed? You might as well interrupt it to show them being constipated on the toilet. So I certainly didn’t want to watch a movie which was just one big long sex scene. And I didn’t want to try masturbation because I didn’t see the point of it and I didn’t want to get smelly hands. They told me to do it in the bath. But why spoil a perfectly lovely relaxing hot bath trying to fiddle with finding my G spot? It would be like trying to solve a difficult mathematical equation in the bath - no chance to relax at all!

I had boyfriends in Canada, thanks to my well-meaning friends, who wanted to save me from a life of miserable singlehood. Most didn’t last long. I broke up with them not because of lack of sexual feelings (I was patient and assumed I had those feelings and I would find them in time) but because I didn’t like the feeling of being attached to someone else. My sense of self got confused and it felt like a confusing burden. One lasted 8 months, as I was very determined that clearly God wanted me to get married (because this is what all Christians do when they grow up, isn’t it?) and here was a nice Christian boy who was as quirky as I was, and it really seemed perfect. I never had sex - I never had any inclination - but I decided I was developing some sexual feelings because I would ask my boyfriend to tickle my hair and my back, and I enjoyed that. However, then I remembered that in primary school I would ask the girl who sat next to me to do the same. It was purely a sensual feeling that I enjoyed, and would make no difference whether it was being carried out by a boyfriend or a machine. This idea quite jolted me - surely, surely, there had to be something different here. I remember saying to my female flatmate ‘I want to try an experiment. Will you sit on the sofa and let me lie with my head on your knee, so I can see if it feels any different with your than it does with my boyfriend.’ She naturally thought it was rather an odd request but was used to my eccentricities, so complied. I tried it, and then declared there was no difference at all, and that clearly the feelings I was getting were no different from feelings of being cosy with a friend.

I remember too in the pharmacies there were these machines that measured your pulse and blood pressure. My pulse is always a bit higher than normal, so I wanted to try an experiment with my boyfriend. ‘I’ll measure my pulse and then do it again with you tickling my back, to see if the relaxation makes it go down’. I tried it, and it did, to my great satisfaction (I like it when my experiments work!). Then I asked my boyfriend to try it. He measured his pulse, and then again with me tickling his back. But rather than making his pulse go down, it made it shoot up. I was most confused at this unexpected disproval of my theory? ‘Why did that happen?’ I demanded. My flat mate, who was with us too, started giggling and said ‘Uh - why do you think?’ And I realised that it was his sexual feelings and I was supposed to have them too, and my pulse should have gone up, not down - and I felt suddenly rather embarrassed that I’d displayed evidence of my lack of sexual feelings to my boyfriend!

Eventually, I broke up with him. I felt bad, because I really enjoyed his friendship, but I realised it was no different from my friendships with anyone else. But I actually didn’t think then that sexual feelings were simply something that I didn’t get. I thought he was simply the wrong man, and that when the right person came, my feelings would emerge from the repressed nooks of my soul.

When I returned to England I set about finding my sexual feelings with more determination. I remember texting my sister asking her to give me ‘masturbation instructions’, which she did with part amusement, part reluctance (of the ‘I can’t believe you’re my sister and we’re talking about such things’ kind). My other sister, being the more prudish type, flat out refused. Well, I followed all the instructions, but nothing happened. I simply found it boring.

I then joined a Christian dating site and went on dates with a variety of men. It started out as a ‘Since unfortunately God wants me to get married, I suppose I’d better go about finding someone’ venture, but soon turned into a ‘Gosh, what a strange man - I’m really curious to see what he’s like and whether he elicits any sexual feelings in me’ thing. No sexual feelings were elicited. Many very strange dates - which I wrote about in entertaining fashion in the online diary I had at the time. I soon collected quite a readership. In particular, one woman who was very scathing about Christians, and loved to mock them. She wanted to talk to me on MSN - she normally never spoke to Christians but she was fascinated to find someone who mocked their own kind.

So we chatted on MSN. I found the conversations fascinating. She asked me lots of direct questions which I answered- I like conversations which involve questions, because then I know what is expected of me. One day she confessed that she’d sometimes been trying to embarrass my Christian sensibilities by asking personal questions about sex. I replied simply that I was never embarrassed, but I was aware that I don’t have anything very interesting to say about it since I don’t get sexual feelings due to being a repressed Christian. The conversation that ensued was very interesting. She told me with amusement that I wasn’t repressed. I told her that, no, really, repression is very common in Christians and I no doubt have it. She told me that I wouldn’t be chatting so openly about sexual things and my lack of sexual feelings if I were repressed, and that I was simply asexual. I had never heard of such a thing, and thought she’d made it up. But upon googling, I discovered that there really are people who don’t get sexual feelngs, and they are called asexuals. And their self-descriptions sounded very like me.

But I wanted to be sure. I would try again with the sexual fantasy thing. I lay on my bed and imagined very hard the feeling of being in bed with a man and having sex. I had no feelings, other than the feeling of being crowded and not wanting to share my bed. Then, to make it equal, and to check in case I was a lesbian, I imagined very hard the feeling of being in bed with a woman and having sex. Again - no sexual feelings. Only the feeling of being crowded and wanting my bed all to myself.

I then researched about asexuality and discovered it’s more common in people on the autistic spectrum, and also in people who are underweight and who get a late menarche (all of which were true for me, although I am no longer underweight). So I decided I could safely say that I was asexual, and surely if there were any sexual feelings inside me I would have at least got a hint of them by now.

As for what it’s like in day-to-day life to be asexual… well, girly chitchat often tends to centre around one’s love life or one’s longing for a love life, and which men are sexy. For someone who finds chitchat difficult anyway, knowing what to say in such conversations is impossible. See, girls tend to assume that other girls fancy boys. If you don’t show any evidence of doing so, they might think you are a lesbian. But asexuality simply isn’t something that occurs to people. And blurting out ‘By the way, I’m asexual, so I don’t relate to any of this’ would be a bit of a conversation killer. It’s not one of those things that it’s easy to slip into the conversation - and even if it was, most people haven’t heard of such a thing and are not really inclined to believe it. And gosh, I can’t tell you how tiresome the old ‘You just haven’t met the right person yet’ line gets! Hmm… yes, I’m 34 years old and I’ve never had a crush or a sexual fantasy or any interest in sexual intimacy at all simply because I ‘haven’t met the right person’. At some point in my life, maybe when I’m 60, the right person will magically materialise and suddenly sexual feelings will appear as by magic inside my body. I don’t think so, somehow.

It would be good if Christian novels included a few characters like me. Or even general novels, come to think of it - I’m not sure when I last read a novel with an asexual character in it. Are we really as rare as all that, or will more of us identify ourselves when it becomes publicly recognised?